Abbysworld

Dora, I good girl, yah!

2012-01-23T15:44:00.000-08:00

Tell me this kid isnt in there and doesn't need to communicate! Oh no I'm sorry wouldn't be able to communicate

Almost lost it

2012-01-20T12:13:00.000-08:00

Hey all.

I recently has my quarterly breakdown. However this one did not last a few days. I would say about 6-8 weeks probably.

I cannot even believe the person I turned into over that time and I apologize to any and everyone that was effected over my rage,depression and negativity. For those of you that continue to stick by me I am forever grateful. I often say I don't think I could be friends with me. You just never know who you are going to get from day to day. Everyone loves funny inappropriate Terri.Kind,helpful,loving Terri rocks. But too often lately..what's the point Terri has reared her ugly head and for that I apologize. It's not easy living in this...this...strange mind with the vicious tongue. I am fully aware that I can be mean, hateful and super negative. I blame it on social media. I used to be able to just keep it private in a notebook somewhere.

Now at any time and any place I can shout to the world that I hate, I'm mad, I hurt and they respond. It is by no means an attention seeking thing but more of a my God doesn't anyone hear me thing. I may think that somehow, someway if I get it out there someone will care, will help. I guess I don't know lately but I do know I've been awful.

I have had to take stock of my life, my relationships and my responsibilities and have had to let some of it go. It was not easy. Live your best life right Oprah? This is the hand I've been dealt and come hell or high water I will find a way to be happy about it.

So continue to bear with me please...I really appreciate it

Scoliosis, Rett Syndrome and my Abby

2012-01-16T05:00:00.000-08:00

Last year I told you all how Rett Syndrome Sucks. I told of our journey with Scoliosis and Rett Syndrome along with pictures of xrays. On these xrays you could see that Abby's curve had doubled in just a few months time. Despite the facts that we had enrolled her in Hippotherapy and upped her PT time outside of school her curve still doubled.

It took us several months to find a Chiropractor and Massage Practice that would take Abby on. With a huge discount and help from our church we were able to come up with a plan of treatment. Once again Thank You Fountain of Life and Nashua Baptist!

You can view the video of her progress here.

Never the less...it was not enough. Although we do intend to keep her in all her therapies we had to make the decision to brace Abby. It was not an easy one to make and almost everyone said the same thing..."Bracing doesn't work with Rettgirls. They don't tolerate it."

Here are some pics from Abby's brace fitting...that she is tolerating beautifully

When they first put it on. I was so upset but I knew if I cried she would too and she was being so good.
Here we go..she can sit up
Look at her Cheesing at the technician
On the way out. Sitting up as straight as can be....and yes..her legs really are that long!

Christmas 2011

2012-01-05T17:10:00.000-08:00

This Christmas we did things a little differently and just loved it...for the most part. We invited a family friend and had a peaceful all about us and the Lord kind of Holiday.

Sunday morning Abby was pretty interested and confused with other people's gifts

And one posed smile from Bubba
Yeah. What she get...what she get?
What? I'm being good
What did ya get Aunt Pam????
Look at my pretty outfit!
Check out all the bows in her hair! I think those and this lighted aquarium were her favorite!

See ya soon!

Rett Spell

2012-01-04T13:38:00.001-08:00

Isn't she pretty? Pretty evil I tell ya!

Nah I shouldn't say that.

Anyone living with Rett Syndrome can tell you that we call it..it being Rett Syndrome the invisible monster. We never know how or when it will tighten it's grasp on our children but when it does...all other life shuts down.

As far as Rett Syndrome goes Abby is a pretty happy kid. I once even has a Neurologist tell me she was the least afflicted case he had ever seen. Now she is not the least afflicted case I have ever seen but more often than not Rett Syndrome is worse for other kiddos than my Abby.

Most days, at first glance Abby appears to be normal. As long a she's quiet. Then you will notice the odd, rhythmic movement of her hands. Maybe another sideways glance and you see that this very tall 7 year old is drooling and licking her hands. By this time you are intrigued..you can't help yourself. She is so pretty...what could be (wrong) with her?

She catches your eye and locks you there. It's like a Jedi mind trick. You can't look away. She then looks at you and dead serious says," Ah mag ackah likea boggah noo?"

You find yourself looking away in shock then back at her. You might reposition yourself in the room/store/church. What is it? My God what has a hold of that beautiful little girl?

Rett Syndrome. A horrible cage like monster that has control over everything she does. Rett Syndrome comes in stages.....Stages we don't like to talk about or even think about which one our girl is in. Not after stage 1 anyway. I think we may be entering another stage or phase in our Rett Syndrome journey. Abby is different...difficult..hard to deal with.

She relies on me or others for everything. EVERYTHING. She cannot eat, drink, dress,clean herself or even pick up a simple...a simple...anything. She must be carried to her room and to the bath. She is getting quite heavy...Tiny girl that she is.

I really don't know if she is becoming more aware of how trapped she is. If she is just down right pissed? I don't know if there is something hurting her. Maybe a little of all of the above?

I know she stopped sleeping there for a little bit. Yes stopped. Easy thing to do with Rett Syndrome for some of the kids. Melatonin had been a God send for us for many years and it just stopped working. Her Neuro put her on a different med and hallelujah it's working. She had us cut it in half last night because it is an adult strength medicine and she was up to almost 1am.

With the no sleep came these epsiodes or fits. I can no longer take Abby...almost anywhere. Not by myself and not without someone to help me. Even then it is usually too much for her. Unless I can hold her tight, give her my full attention and an ipod too with music or videos for her to concentrate on s.he freaks out. I mean FREAKS OUT. She screams in terror, claws at me. Bites. Her eyes always pleading for me to help her...get her out of there. Doesn't matter where it is. You get her back in the car or back home and she's fine. Happy as a clam in fact I don't know if this is a stage, or a phase or anxiety...I know it's at least anxiety I just don't know what to do to help her.

So that is where we have been and what we have been doing. Trust me..it's exhausting.

Christmas pics and a great surprise to fill you all in on soon.

We r ok

2012-01-03T11:27:00.000-08:00

I know it has been a few weeks since Ive posted. I want to assure you that we are all ok just very very busy.
I plan to catch up very soon
Thanks
Terri

Another one bites the dust

2011-12-19T11:32:00.000-08:00

And our van is dead. Completely caput. The four of us officially have no vehicle. I feel like I'm going to be physically ill.

George came home to take Kyler to work today. He called me 20 minutes later to say when he was getting off the highway everything just shut down. It wont start,respond or even make a noise.

We are in a contest to win a van for Christmas. This couldn't come at a better time...although I have no idea what we will do until then..although I am sure we are not the neediest in town when we applied we talked about having a vehicle it just wasn't reliable...now it's just nothing. We are up against many many people.

Please pray we are able to win this van. If not we are looking to make payments on a used vehicle...with a quickness

Rett Syndrome and Change

2011-12-16T11:41:00.000-08:00

Do not go hand in hand.

I used to be a smart person. Seriously I caught on to things so fast. Rett Syndrome is kicking my ass and outwitting me at every turn.

For the last few weeks Abby has been....let's say difficult. She missed 2 days of school last week and 3 this week. If we take her out she screams bloody murder. I can't or couldn't tell what it was. She doesn't seem to be in pain. She is not having seizures. Hasn't had one since April. She isn't really having tremors either but she is not sleeping...seems mad or terrified.

I don't know why it didn't dawn on me before but she really really can't deal with change. Not of any sort. Every time anything is different it takes her forever to adjust or she just plain freaks out.

This am when I was driving home in our no heat, no air, hole in the muffler,oil leak van after dropping her father at work it hit me...duh...In the last 3 weeks we got new caregivers, the heat went out in the van and her brother started a job.

I never even thought about how this affects her...except the heat part. I have been so exhausted these last few months. I really did hand her evening care over too quickly. I usually lurk and get in the way for about 6 weeks or so and I set each girl on her own almost immediately.

She is used to coming home and me fussing over her and playing with her from the time she gets home until the time she goes to bed and I'm just someone in the house. I'm really feeling guilty here.

She is not at all used to having to leave at night or in the cold and I've been dragging her along because I've really had no choice. George gets off between 9 and 10 and now Kyler gets off between 9 and midnight. Having to go get both of them, drive a hundred miles or more a day doing it....I'd just bet that's it. She is in bed in jammies tucked in by 830....or she was until both the boys started working. If I had to have the car for therapy or appointments I always left her at home with her brother while I went for the hour trip to get her father and bring him home. Now I'm doing that twice...in the cold and taking her with me...after bedtime. Duh Terri.

Abby has her first seizure the day I got home after leaving her for the 1st time last year. We have never been able to make a day of anything. She wants to be home. She feels safe and warm here and everything revolves around her. She hates stores and the public and I'm beginning to think school may be too much for her. She just cant handle being over stimulated and I knew that. Kicking myself in the butt.

The dragging her out stops today. I will be making a trip to get one boy home with her while I have a caregiver then going to get the other one. I have to as long as we have one vehicle. Her Dad isn't going to love having to get off at the same time every night but we have no choice with her brothers schedule.

We are monitoring school to see if the falling asleep and not participating is a common place. She can sleep at home...where she doesn't. I don't really want to do homebound or homeschool. The thought makes me a little nauseous but like everything else...it's about her. I can't do anything else. She has to be happy and comfortable...

Sorry to those I promised to make this blog a happier place. I have no where else to turn

Symbol Communication in Rett Syndrome

2011-12-12T15:41:00.000-08:00

We have been brain storming and working on our Communication page for RettGirl to include many of the symbol choices you have in our non-verbal world while trying to find something that works for our daughter's both at home and at school.

So, Kelly Butler and I want to share what we are doing with our girls.

As you know, the same method will not work for every girl and we do believe in the Multi Modal Communication System for Rettgirls.

This, by no means is the answer to everything, we change things up as our daughters learn and as new things are introduced to them.

We thought it might be easiest to show you in pictures. I will start with what Kelly uses with her precious Brooklyn.

As you can see Brooklyn's main form of eye gaze communication is through a plexiglass Eye Gaze Board. I hold it up in front of her and can see through as she makes her choice.

This one is her choice of activities "I want to read, I want to play a game, etc." Depending on which choice she makes, that leads to other questions.
If she chooses watch TV, she then gets options of movies to watch like this. We generally give her four movies to choose from. We hold up the choices in front of her and she looks at her choice.
These are her needs choices - "I'm Hungry, I'm tired, I'm Hot, etc"
We got the alphabet letters that they use in first grade and made boards for that too
Of course she ALWAYS has her yes/no. We do hold them up on the same side. Yes is always on her right

================================================================

I use a few different things with Abby. After we were denied an eye gaze system I made it my mission to build her a system that works so she can effectively communicate in a way those around her can understand. We started with themed communication boards. (Boardmaker Symbols) and had them laminated.
At meal or snack time we break out this one. She can choose each time she wants a bite or a drink and weather she want's more or is, "all done."

When reading a book we bring out this page. She cant tell us when to turn the page, how she feels and when she is done.

When watching TV we break out 3 boards like this with different shows on them. We also have a no on it so she doesn't have to choose from either page is she doesn't want to.

This is a multi purpose board for many things. More, all done, yes and no.

School Board (class choices.)

When on the road or doing several things we have a book we carry
We started with baseball card sleeves and fit the symbols to the sleeve size

We have a flexible 3 ring binder

Colored seperation tabs by category

I attempted to follow the color coding that the PODD system uses.

Each sheet and section is easy to find

The sheets come with 9 squares so there is separation between each choice if needed

TV page

TV Show choices

We follow the same pattern as the boards so the same pictures are always in the same place whether it be board or book.

As you can also see by her reading page in her book

Bed time routine

Family
Greetings
These are the laminated YES/No cards we keep everywhere. At school. In her diaper bag,book bag and every room of the house. Yes is always on the left for Abby and No on the right because that is how they choose at school.

It is very important to keep school and home the same in the symbols you use and the placement of the symbols.Also known as the LAMP system. Children who are non verbal motor plan better with consistent placement.

We hope we have given you some ideas especially if you are still in mid fight for eye gaze equipment or have found that mobile picture symbols work better for your girl.

Any of these we have shown here are also a great way to start communicating with your girl.

Please feel free to email us with any questions,comments or things that work for you at:vejrfam@yahoo.com

Good luck,
Terri and Kelly

Some relief

2011-12-09T12:00:00.000-08:00

Isn't she stunning? I got my friends camera working but this one came out a little blurry. This is my Princess in the am sticking her tongue out for a kiss. I love her so much. I often...too often bitch and whine about the life I gave up to be a stay at home Mom to her..but I love it. She gives me more love each day than I had in my entire life before she came along. Who needs stuff when you can have this face?

This is our new caregiver during the week with Abby. They adore each other and she is a huge help to me. Abby just squeals when she comes in and just loved her from day one. She is usually a little leery for a bit but not with this one. Lets hope this works out!

One of those moments.

2011-12-06T12:45:00.001-08:00

We had one of those moments last night. Just me and her.

We had had a heck of a day. Just one of those crazy busy, sensory overload, Mommy is stressed out days. House is a mess, people are missing or need rides and Abby and I are running around like crazy people. Back and forth. Up and down. Left and right.

It was bedtime, or it was trying to be bedtime. 2 and a half hours later than normal. We were both exhausted and cranky. She laid in her bed fussing while I laid in mine aching. She kept sitting up and yelling at me. Just a standard, cranky po'd little girl. She would sit up, I would tell her to lay back down. She would scream, throw herself to the mattress then sit back up screaming. After about 20 minutes of this I just sat up and said,"Look. I know you're mad and I know you are trying to tell me. I know you don't understand why your words don't come out and why I don't listen. I'm sorry baby but I know you understand me and Mommy said it's time for bed so let's go to sleep and stop all this OK?"

She just looked at me and gave me a huff and threw herself quietly to her pillow. She then turned and looked at me and smiled and stuck her tongue out for a kiss. Just me and her. Both so frustrated but loving each other so much. She was asleep in 2 minutes.

Sometimes I get so busy, so broke, so frustrated with everything that even I forget she's in there. I become this kidomatic. Butt wiper, bather,dresser,loader,feeder that I forget or I don't think about how this must feel to her. Trapped in a body that doesn't work. Relying on a crazy person for absolutely everything.

And yet she still loves me

A Great Day

2011-12-04T18:47:00.000-08:00

Hello all. I certainly don't want to leave my blog open on a note of depression and suicide so I thought I would post tonight before I go to bed. Sorry about my lack of pictures here lately. I broke my camera this summer. A friend loaned me hers that wasn't quite working and it has gone kaput too. I have been trying to get pics on Abby's ipod and my phone when I can but neither will take a very good shot if you move at all.

Today was a day for just me and the kids and it was lovely. We are all always so busy coming and going that we don't ever just spend time together.

Everyone got up early without complaint and we all...minus Dad went to church. ( Actually it's kind of funny because as I sit here talking about my wonderful peaceful day Abby is throwing a major fit and screaming her head straight off over what's on TV.)

We went to lunch with a couple who lives down south part time and we consider Grandparents for the kids. It was nice just to visit and share a meal...seriously I don't get out much.

We went to Zona Rosa and my son dragged me through a very crowded Old Navy store doing the hint parade for Christmas. Luckily Abby didn't mind and we were able to just window shop and talk and tease each other. It was nice. I can't remember a day in a long time where there were no meltdowns, no teenage fits and no me thinking I want to crawl in a hole and disappear.

I have been really watching Abby lately and I think part of her sleeping problem may go beyond the seizure med. I hope it's something we can bring her out of but I think she may suffer from some kind of sensory overload or anxiety that goes beyond what we we previously aware of. She just shuts down pretty much anywhere but somewhere she is very familiar. She either sleeps or goes into her own little world. No eye contact, no smiles. I have her Neuro's trying to get in touch with each other so we can try to get something figured out on the med end. All but one parent I have spoken to absolutely insists it's the medicine we have her on so I guess we will see. My only issue is as soon as we get home...she's a happy camper...awake...alert. Gotta be more than the med ya know?

Well we are in the middle of meltdown central....what I get for being at peace. JINX!

Depression

2011-12-03T11:09:00.000-08:00

Depression is defined as:feeling sad, blue, unhappy, miserable, or down in the dumps. Most of us feel this way at one time or another for short periods.

True clinical depression is a mood disorder in which feelings of sadness, loss, anger, or frustration interfere with everyday life for an extended period of time.

This week Kansas City lost local weatherman, Don Harman, who took his own life...seemingly out of the blue for those on the outside. We have sat this week and watched his co anchors and colleagues struggle through, cry on air and attempt to raise awareness. I for one am very proud of them. No one on the outside would have ever fathomed that that hilarious weatherman on the morning show was depressed enough to take his own life. His coworker blogged that he had somehow convinced himself that everyone would be better without him. I am so proud that they didn't try to cover it up and on a campaign to bring understanding to Depression. More people suffer than anyone knows.

Unfortunately all too often suicide seems the only answer to those of us struggling. Those who do not suffer are in absolute shock and distress when something like this happens. Even I went,"Why would Don Harman kill himself? He's the happiest little guy in the world." That was before I heard he suffered from depression. When that came to light I thought,"Well damn. Got another one. Sorry Don."

I suffer from Depression..true,clinical, mood disorder depression. I have for a very long time. I think it runs in my family genetically but for me there are many reasons above and beyond that have turned me into who I am and how I feel that I do not care to share at this time.

When it first started my son was very small. I can remember always being asleep. If I wasn't working or taking care of him I slept..Slept so I didn't have to deal with the sadness. The feeling of impending doom. Nothing matters, all for nothing. It was a feeling I just couldn't shake. I went to the doctor because I thought I had Mono. She told me I was depressed and put me on a medicine. A few months later I realized I wasn't sleeping all the time anymore so I stopped taking my medicine. Within a few weeks I was back in bed...back to doom and gloom. It took me years to figure out that I needed medication. That there was a link between the meds and the doom and gloom. I kept trying to convince myself that I was strong enough. That this thing was just something I had to get over. That I needed to stop being a wimp.

Off and on during this I slowly started to have panic attacks. Episodes that would appear out of no where. I would suddenly and without warning get dizzy and have vertigo. The lines in my vision would blur and I would hyperventilate and sometimes even pass out. If I couldn't get somewhere safe where I could be alone until it passed I would go into terror like episodes where it felt like I was losing my mind. Right there, right then. I could be walking through the mall, standing in line at the grocery store...driving down the road.

When my Dad passed away at 56 I lost it. Panic attacks and my bed became a routine..even while medicated. I went about 2 years where I could go to work and home and that was it. Even the thought of going to the store made me want to throw up. It was no way to live and I didn't know what else to do.

One day... I couldn't get the thought of just ending it out of my head. I had thought about it in the morning while I looked at my cabinet full of meds. I thought about it on my way to work...flashes of my son laughing, my Dad, my husband. I was so out of it that I answered every question with a confused, "What?" all day long

I had been married about 3 years. Wasn't what I had dreamed of. My son was entering his tweens. I had lost my Dad and my career that year due to cancer and a layoff. I was working at a job I hated for a person..that was just plain mean. In ever way. Vicious. I couldn't take any more.

I remember it almost like an out of body experience. I walked out of work at 5pm without saying a word. I started my car and started home. Right after turning East on the highway I saw a semi trailer truck. The only thing I thought at that moment was, " How fitting" as I crossed the road into his lane. I closed my eyes and hoped it would be quick. I cant tell you what happened. I didn't hit him. I ended up in the median turned the other way. I had heard honking. He didn't hit me. I didn't hit him and everyone just kept going. I sat there for several minutes confused and finally just turned the car around and went home. I had left no note. I had made no plan.

Still in my daze I returned home. I wasn't relived that I was alive. Frankly I was kinda pissed. Still in my daze I walked in the house, past my family and down into the basement. I laid on the floor for a very long time and cried. I finally got up and called the local help hotline. I was connected with a therapist and scheduled for a meeting with a counselor the next day.....

I have to admit that at first I hated counseling. I didn't want to talk and cry in front of someone I didn't know. There was NO way I was gonna talk to that pillow and pretend it was me as a little girl. Did she really want me to pretend that pillow was me at 8 years old? And she wanted the grown up me to tell the little me it would all be OK. I refused and she realized she had to get tough with me.

She started to finish my sentences. I would describe how I felt about something and she knew what I was going to say next. She too had suffered and overcome depression. Wow. She became my example. She told me what to do when the panic aura started and it worked. I could go to the store again. Soon I could even drive more than a mile or two at a time.

Just about the time she was signing off on my case I became pregnant with Abby. Everything was going to be OK. I felt normal and was moving on with life. It can happen...little did we know

What I am trying to say is depression is everywhere and it isn't just a poor me thing to get attention. I know that is the stigma it has gotten but it is far from that. It is something deep and tormenting and sometimes like living a nightmare with a smile on your face.

Like Don...I have been described many times as one of the funniest people you know or who have ever met. It's a laughter through tears kind of thing. A defense mechanism. That self deprecating humor comes from fear of rejection or from being made fun of. My thing is making jokes about my size. Maybe if I do it you won't. It comes from being bullied and self conscious.

If you suffer from depression or from feelings of hopelessness or suicide...you really are not alone. There are people that can help you. Can't afford it? I've never paid a dime for anything other than my meds that you can also get discounts on at almost every pharmacy.

If you are thinking of hurting or killing yourself PLEASE call 1-800- SUICIDE

If you are struggling and need to talk to someone who understands, call 1-800- WARM EAR or 913-281-2251

If you need more information or a referral, please call Mental Health of America at 913-281-2221

No matter your financial situation, there is help available. Please seek help if you or someone you know is suffering

Crazy, Busy and more

2011-12-01T06:48:00.001-08:00

Hey all. Sorry about the time between posts lately. We have been crazy busy and on the run every day.
This week Abby has or has had 7 appointments, her Dad works all week and her brother finally starts a part time job today. I haven't had much time outside of driving Daddy back and forth so we can have a vehicle to get to all the appointments. Hey...On a good note the heat went out! Not!
Monday we took Abby to the dentist for a few reasons. It was time for her regular check up but we are also concerned that she hasn't lost any teeth yet other than the ones she has ground down. Unfortunately because of her disorder and the nature of it we cant give her any kind of guard to help. The choking hazard is too great with her being unable to speak or use her hands to take it out. We have hoped to send her teeth to a lab to turn into stem cells as they come out so we are hoping by the time that comes there will be anything to send. On a good note No cavities!
Tuesday we had swim therapy and she did very well. She had kind of shut down on us the last 2 swim therapies so we pretty happy. Although we don't believe she learn to swim the therapy is great for her tone and awareness.
Wednesday we had a trip to the hospital for assessment for her back brace. Even though Chiropractic and massage therapy has helped tremendously we are going to have to brace her to keep her from getting any worse. She is a big leaner as comes with Rett Syndrome. The brace will help with that. We were surprised to learn that the brace doesn't correct, it just keeps the curve from progressing further.
She has Chiropractic and Massage both this afternoon and I'm hoping to discuss future plans with them. We are paid until the end of the year and if we can't get donations to last until we get our tax return in spring we are hoping to be able to work out some kind of payment plan. Fingers crossed.
On a couple of good notes the new caregiver seems to be working out. We have a few kinks to get through but nothing serious. She shows up on time and she gives me some much needed respite. On the weekends we now have another caregiver on Saturdays. I took advantage of that last Saturday and actually went and saw a movie for the first time in a year. I cant believe I went almost a year without help. I'm paying for it with my back problems but so grateful that we have started up the service again.
All for now. Off to take each of the boys to work. Yeah!!!!!Finally.

So much for being over it

2011-11-25T09:10:00.001-08:00

I am for the most part over it. On a normal day to day situation I can deal. No, seriously I can.

Yesterday after dinner my son and I were playing with Abby who was babbling on the couch. My 7 year old, babbling like a one year old and the waterworks started.

I asked my son if he ever wondered. If he ever wondered what our lives would be like had his sister been normal. Would I have gone back to work? Would we not be dirt poor living on one income? Would she have helped me on Thanksgiving....or complained and threw a fit cause she didnt want to...stomping out of the room..blaming me for the end of the world for being asked to set the table?

By the time I got it all out I was sobbing, my daughter still babbling and chewing her hands was smiling at me on the couch.

My teenage son, wise beyond his years. He looked at me and said,"Mom. stop. She's the happiest person I have ever seen. She wants for nothing and all she knows is she is loved. Her whole world revolves around her and she loves it. Stop doing this to yourself."

Wow. I wonder if he would be so smart had this not happened. He seems so much older than his peers. Is that a good or bad thing? I don't remember being that sensitive at his age. I pretty much cared about nothing outside of myself at nineteen.

I hope more than anything that this has been for a reason. To teach my son compassion. To do whatever it is it is supposed to do for me. Make me a tool for others. I don't know.

Living with Rett Syndrome...we don't often say this out loud. It sometimes feels like our child died one day. We call it D day. And we are forced to live on with a trapped soul without a body that works. Holidays suck. Hurts like hell.

There are day's...fewer and further between...that I don't think I will survive this. Like today

Thankful

2011-11-24T08:52:00.000-08:00

Today I am thankful. As little as we have, we have each other and love.

I am Thankful that my son finally got a job and will start this weekend.

I am Thankful that we finally have a new caregiver, make that 2. One during the week and one for 8 hours on Saturdays. My back has been out for almost 2 weeks again. As I cannot stand or sit without assistance I am so thankful for caregivers.

I am Thankful for my daughter. More than anything she has taught me what love is and how to be a good person...even though sometimes my mouth gets away from me. For those affected by my temper I apologize.

I am Thankful that my kids are not selfish and realize that Christmas is about love and Christ..at least I hope they do. I guess we really only know that Abby is happy regardless and expects nothing and Kyler is finally learning that everything is not about what you get.

I am Thankful that I was finally able to quit smoking this year...even E ciggs. Now if I could walk Id tell ya if I was able to get up the stairs better.

I am Thankful for my extended Rett Family...even though we rarely see each other in person and when it comes down to it we'd all rather wish that we'd never had to meet..you are THE only ones that get me and I am eternally grateful that you have not left me.

I am Thankful for my church family. Always so genuine and filled with love. Every one of you. Thank you.

I am not Superwoman

2011-11-15T11:54:00.000-08:00

Big surprise eh?

Eh? Yeah I have been awfully Canadian lately. Don't know what's up with that except for maybe the ton of special needs Mom's I have meet through the group A4CWSN lately.

I threw in the towel last week and finally called the agency to get a caregiver back over here. After 14 caregivers and nurses in 2 years I had had it and kicked everyone out of here. Part of me had the guilt trip that I stay at home so I should be able to take care of her on my own. The other part of me was just sick and tired of having people in my home and in my life that were weird or stole or you couldn't count on. 14 in 2 years. I liked 3 of them.

This summer I tore discs in my back and went into months of Physical therapy. Now I know I have a bad back but nothing I seem to do stops it from going out at the littlest sneeze or lift. Abby weighs 50 pounds now and we have 3 floors....I feel like I'm justifying this decision. I'm not. I'm just getting it out. OK Yes I am.

Late this summer I passed out on my front porch after no sleep for a few days and heat exhaustion. That incident has cost us almost 4 grand. 4 grand when we dont have 4 dollars. I just can't do it anymore. I need someone with her 24/7. Since that is me a 4 hour break a day shouldn't leave me feeling this guilty should it? I do it by myself all night long and while getting her ready for school. It's time someone helped me after school.....OK yeah I feel guilty. Why? Am I being lazy? I mean she is gone from 830am to 430 pm right? Auuugghh.

Saturday night for the first time in forever I went out. I had won tickets to Guns N' Roses. I went with my son. Yeah no kidding. Old ass me rocking out in the pit right against the stage. I had the time of my life. Everyone has their ROCK or Music Legend. That person for me is and always has been Axel Rose. I haven't always necessarily agreed with him and his decisions but that voice and that music. Never ever get tired of it and he was 10 feet from me. And he brought it. No Slash. No Duff and he tore the house down!

To say I got beat up,smashed and was sore and tired after the concert would be a joke. I felt like I had been in a car wreck. I laid in bed when I got home wondering if I should go to the ER or something. I hurt too bad to move or sleep..then it started. Out of nowhere Abby started to projectile vomit. 4 am. I could barely stand and I had to get up and turn,vent and hold her head to keep her from choking on her own vomit. I had to do this with no sleep for 2 more days.

This is the life I live. I should not feel guilty.

Scoliosis update

2011-11-09T15:43:00.000-08:00

Unfortunately I have no pictures or video for you today. My scanner on my printer isn't working.

If you have been keeping up or following this blog you will know that with Rett Syndrome(MAN I HATE THOSE TWO WORDS) comes scoliosis and we have been dealing with it since we first noticed it when Abby was 3. Back then she had a slight 15 degree curve and nobody saw any reason to do anything but monitor her.

Come 5 years old she was at 23 degrees and we started PT. In 6 months we got it down to 17 degrees and we were thrilled.

5 months after she started Kindergarten and a new school she was at 34 degrees and they were talking rods the length of her back and a risky surgery. I got advice from a few other Moms and started the search for a massage therapist and a chiropractor. It took 5 months to find someone to take her on and with the help of some friends we were able to put together and pay for a therapy program for her until the end of the year.

Today we took her in for xrays and her curve is between 25-32 degrees depending where on the bend they measure. Not a miracle but definite progress. The doctor ordered her PT at school to be tripled(they wont do it) so we will soon be looking for therapy through the hospital. I wish we could do it through school but I doubt that will happen considering our district has one...yes one physical therapist. He wants us to continue the Chiropractic and the massage although I don't know how we will pay for that one after the end of this year.

And here's the kicker..don't freak out but...we are going to brace her. Studies show bracing doesn't usually work for RettGirls but we have to try anything we can before we let them cut her open and stick metal in her spine.

That's all I have for now. Keep praying and sending good vibes our way. We appreciate it!

Abby's 1st field trip and play

2011-11-05T13:29:00.000-07:00

Abby had her 1st field trip this week. A wonderful day for the both of us. We went to Crown Center and had lunch with all her friends before going to see a play.

Abby's friends came and got her so she could go sit with them.

Abby and her aide. I think I was technically her aide for the day, but these 2 have a special relationship.
One of KC's many fountains
Abby and her Emma
Looking up at the Marquee. Priceless!
We saw a musical version of Horton Hears a Who. It was awesome!
The Princess after her play. She told EVERYONE about it for days!!!

The Day I got over it.

2011-11-03T11:41:00.001-07:00

It was November 2 2011. Yesterday in fact.

I didn't realize it as the day played out. It was only last night after I thought about the day that I realized everything is not Rett Syndrome. I am not a Rettmom. I'm Abby's Mom. She is not the girl with Rett Syndrome nor is her last name Rett Syndrome. She's my little girl and she's perfect.

Yesterday I volunteered for a field trip. I didn't know where we were going or what we would be doing but I knew they would need my help.

I never thought once about us getting on the short wheelchair bus while the other kids ran to the bigger buses. I didn't have to walk away and cry while the nurse hooked my 1st grader up to a feeding while 200 other 1st graders laughed and talked. I ate my lunch. Even when a group of girls asked if they could take Abby to their table. I just let her go.

When I noticed a toy store on the second floor of the place we were at I asked permission to go look while an aide kept an eye on Abby. I walked up to the second floor and I looked in the windows and I smiled at the children there. I looked at the isles of toys on the shelf and I didn't cry at all the stuff there would be no point in buying because she can't play with them anyway .I looked at the Tea Set and smiled.

We sat in a tiny theatre and watched a musical version of Horton Hears a Who. I sat on the floor next to her wheelchair...surrounded by 6 and 7 year olds and I enjoyed a play. I held my daughters hand and smiled and nodded at her when she looked at me in wonder.

Being surrounded on all sides by "typical" kids who can and do didn't rip my heart out. Does time really heal all wounds? Even this one? My daughter was just my daughter. She was Abby. Last night I cried myself to sleep with relief. Rett Syndrome may have a hold of my daughter's body but it does NOT HAVE CONTROL OF OUR HEARTS. Not anymore.

This year...come hell or high water...she will get that tea set for Christmas. I'll pour that pot for her and hold that little cup to her lips. I can't wait!

Halloween

2011-10-31T17:36:00.000-07:00

Happy Halloween everyone!

Hey all. Thought Id take some pics of the kids in their costumes. Kyler went as Greenman to a big boy party. He looks hilarious running around the neighborhood in this get up

Strike a pose. Weirdo

Little spider witch

First time she has been up walking in days

Just too cute

And all this time I thought her Daddy was her favorite Alien

Abby

2011-10-29T19:32:00.000-07:00

Sorry I haven't been on to update.

Abby is ill. We are going on a little over a week now. Croup quickly turned into Pneumonia and asthma. The docs dropped that little bomb on us Wednesday. I was so shocked I just kept saying OK instead of drilling them with what an asthma diagnosis means. I'm hoping it is just something that comes with Pneumonia and that she's not going to have all the time asthma if that makes any since.
I am exhausted and will update when I can. I thought about posting a pic then thought that as a 7 year old little girl she probably wouldn't want me posting pics of her other than smiley or happy,dressed up or playing unless is was Rett Syndrome specific so there will be no pics until she is well.

Please keep her in your prayers.

Terri

Blue Sky Girls

2011-10-21T15:27:00.001-07:00

This past weekend we took part in the Blue Sky Girls. A symbolic event held in unity around the world at 10 am central time where thousands of girls with Rett Syndrome climbed stairs in their towns symbolizing their plight and unity for equal rights and awareness in honor or Rett Syndrome Awareness Month.

Although we had notified every radio station,tv station and newspaper in town we had no press at our location. Just 3 families wanting the same thing for their daughters on a beautiful day. 3 families that had to fight the Kansas City Marathon circling our event sight to even get there. Thanks ladies
Piper. So little,diagnosed early and as beautiful as she can be.

Darling Kaiya just waiting to get in a good flirt with Abby's Daddy

Here we go

Go girls go!

About half way there

Look at them go!!!

Woo Hoo we made it!!!!!Take that Rett Syndrome!

3 families United

Abby and Mommy

Rhianna and Terri

Miss Flirty pants is pretty proud and so are we!

In Abby's name

2011-10-12T11:56:00.001-07:00

Dear friends,

October is Rett Syndrome Awareness month and just a few days ago Gov Jay Nixon once again in the state of Missouri.

AS some of you are aware...every year in April and October I attempt to raise funds for research in Abby's name. So far this month we have raised $0.00. That's a tiny little stab in the heart. So, Id like to ask any of my friends or readers that can afford to make a tax deductible donation in my Abby's name. Do so by going to http://girls.girlpower2cure.org/abby

We work very hard in this house to keep awareness and the need for funding for our cure alive and want to remind everyone that Rett Syndrome had been reversed in the lab. We only lack the funding to in getting this to our girls.

Please keep Abby and all the girls living with this terrible disorder in your thoughts and prayers.
Thanks
Terri

Mom on a mIssion. Thank you Lisa and RettGirl

2011-10-03T08:24:00.000-07:00

This is the blog of should have written when I broke down with my last post. Sorry about that. It happens.

The day after I wrote mine I was asked to guest blog on the Autism blog "Seven Yuck Mouths and Autism" by a friend I have met online throught A4CWSN.

It just flowed when it was something to educate the general public and not me blubbering here. We decided to also post it on the Blog I help out with for Girl Power 2 Cure.

Thank you Lisa for allowing me to spread the world on your wonderful website and Ingrid for allowing me to get personal on RettGirl.

Here it is:

It's Rett Syndrome Awareness Month - let's make some noise!

It's me, Terri. I am Mom, Rett Mom, Advocate, wife and all around Autism awareness terrorist. I run RettGirl.org and a YouTube channel called Rett We Can for Girl Power2 Cure.

Why? Well thank you, I’m so glad you asked. I hope you can pass on this blog and help us spread the word about the hundreds of thousands of girls fighting Rett Syndrome.

My 7-year-old daughter Abby has Rett Syndrome - an X Chromosome Linked form of Autism and the only form of Autism with a known genetic cause. Because the gene mutation is on the X Chromosome, it mainly affects girls, but there are a handful of boys that have it too and they are just as deeply affected.

The gene of which we speak is called MECP2. It is known as the regulatory gene between your brain and your body. It is the gene that tells every other gene when to turn on and off. Strangely, this gene doesn’t play much of a role until your child is between 18 months and 2 years of age. Up to that point you have a seemingly normal, typical child doing all the things they are supposed to do.

Once this gene kicks on, if it is faulty like in Rett Syndrome, everything start s to shut down. There is a rapid period of regression where most every acquired skill is lost. Most purposeful hand use disappears almost immediately and is replaced with a constant wringing, tapping or hand mouthing. All speech goes during this regression stage, and your child turns physically back into an infant where she will stay…trapped in her own body until a cure is found.

Good news! Rett Syndrome is poised to be the first curable neurological disorder. It was announced in 2007 that Rett Syndrome had been reversed in laboratory mouse models. It’s there and until we can get it funded in a way that gets it right for humans, our babies remain locked in a world they can only observe.

One major debilitating factor in Rett Syndrome is called Apraxia. Apraxia is like this: the will to carry out intent is there, but the physical ability is severely delayed or not there at all. Some describe it as having Autism, Cerebral Palsy and Parkinson’s all rolled up in one little girl.

Need to Knows:

Debilitating neurological (movement) disorder that predominantly affects females.

Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.

Caused by a single gene mutation that leads to underproduction of an important brain protein.

The most severe form of autism.

The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.

Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.

As prevalent as Cystic Fibrosis, ALS and Huntington's.

Another little girl is born with Rett Syndrome every 90 minutes.

Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Why have I never heard of this you may ask? That’s why we are here today. To inform, educate and raise awareness so little girls like my Abby will no longer be held in the unknown.

Want to learn more about Abby and contribute to research? Follow this link to her personal story at Girl Power 2 Cure: http://girls.girlpower2cure.org/abby

Thank you - PASS IT ON!

Terri

October

2011-10-01T17:24:00.001-07:00

I hate October. I really do.

I have decided at least for this 1st October postt that I'm not going to go over our sob story once again..It's here..in the past..several times and it's about time I accepted my daughter the way she is and stop mourning the what could of been. Wow that was hard to say.

With October comes Rett Syndrome Awareness Month and the push for education,equal rights and awareness. Somewhere,sometime, I will have to tell the story. I hate it and just don't want to anymore. I have got to make this positive somehow or I will never be ale to move on.

What stinks is D day is in October. Diagnosis day. You remember it on that day like the ...well like the day someone died. May sound terrible and we don't all day it out loud but that's it. The day our dreams and our livees died and we had to pull ourselves from the rubble, This October marks 5 years. You would think at some point one would be able to move on without posting a blog about how much she needs to move on while gasping for breath and choking on her own tears.

ok...I neeed a break....

This year I will be happy. I will not lay in bed on the 26th. One day I wont even notice it'ss the 26th.

I kinda screwed the pooch on the I will survive post here.

Better to come

Abby's 7th Birthday!!!!!!!

2011-09-26T19:37:00.000-07:00

For Abby's 7th birthday I combined our Dora theme with our Girl Power motto!

It was a fantastic day with great friends and families

Emma Bear

Our Diego

Alex and me. I love this kid

Kaiya and Rhianna. They rule

Alyssa is not used to sharing us and was not amused.

Wonderful group of people

Our friend. Noel. He rocks. So much personality and charm

My babies

The fam

At school today thinking she's queen of the world

After school today. This is the face that greeted me. I love you baby girl. Today,Forever and Always

Abby enjoying school

2011-09-14T11:58:00.000-07:00

Here's a few pics of Abby actually participating. This is one her first grade peers. These kids really go out of their way to include her She had this girl in her class last year. She invited her to her 1st birthday party

This is Abby with Mr A. I hear that he is very protective and carries Abby's purple card in his pocket every day!

Soing the lift the parachute. Is that what its called??

Love getting to see her be normal. All I ever wanted

Abby in her approval position during music therapy

Abby testing out a Dynavox eye max in the therapy room

Sleepy day

2011-09-12T19:39:00.000-07:00

Hey everyone. Look at Lil pink Sleeping Beauty here. This was one day last week after she had slept 10 hours. They get her out of her chair and make her walk until she wakes up but, she simply was NOT having it this day I wish I could ever be this comfortable. Unfortanately it's the seizure med followed by an hour ride to school that knocks her out

Her 1st grade peers from her inclusion class. They love her regardless. Especially the boy here. Quite taken with her

Time for music class. Hello???

How bout a lil circle time Abby? No?

I am not thrilled that she is sleeping so much at school but I am pretty happy that she is included and loved..even if she wont respond some days.

More uses for iPAD

2011-09-10T14:16:00.001-07:00

Before I talk about the pics below I wanted to tell you that I got 2 astonishing reports that Abby is walking the entire school, 2 days in a row and only had one fall.
With Rett Syndrome comes many loses as you are well aware. Abby's walking comes and goes but she has never regained her ability to crawl.
Lately she has gone from couch to floor time and she fights us by flopping over. For some reason she will not make an attempt while we are watching.

This 1st pic was her making it from the couch to the floor with a thud when I moved her iPAD.
10 minutes later I came in to find this. Now, we all know I peeked. There was alot of rolling and scooting but she made it! More soon. So proud

New Wheelchair ramp

2011-09-06T06:19:00.001-07:00

This past weekend my dear family friend Scott came over and tore this piece of crap down and built us a new ramp in 2 days. I was in awe. Every time I went to bring lunch or take a peek he had another section done.

Starting on the demolition. Good riddance

So excited already. I had seen the drawing but had no idea how fabulous the finished project would be.

2 days people. My husband helped for the last hour and for the cleanup

Lookey lookey the other ramp had one beam down the middle

Finished project from the front door looking out

Tah Dah! Isn't it amazing?

Lumber going back for return. Being a non school day I spent the day in my jammies. Scott had no red flags for the extra six feet of lumber so off with the pants

Here is Super Scott! Always adored this kid. Known him since he was 6. So proud.

Thank you so much Scott and Mary Davis!

Dreams

2011-09-02T13:22:00.000-07:00

Really do come true my ass!

I decided for Abby's first few weeks of school I would be going back to bed till time to get her off the bus or I was up on my own.

Starting to think that is a pretty sucky sucky idea.

I've been having freaky dreams,. Not just running though a meadow dreams but weirdo trippin on acid dreams.

This morning I woke up confused and wanting to find Abby but she was at school. I had had the most vivid dream that I lived in a Brownstone in New York with her and my son. Not something that could happen unless I won the lottery.

In the dream I wake up from a nap to find my Aunt Frans boyfriend feeding Abby pieces of Salisbury steak. First I haven't seen or spoken to my Aunt Fran in...forever and she certainly doesn't have a boyfriend. He was a doctor and told me that she is always hand mouthing so put the food in her hand and she WILL FEED HERSELF

My Abby can barely swallow water or juice but he had her eating like an Eastern Indian. We had to get her to understand that she could only eat with her right hand because the left in considered unclean

Weird I know

So I wake up for real. Ecstatic that my baby can feed herself and I run down to tell everyone and show them..No Brownstone..No New York... No ones here.I slide down the wall pretty sure I AM losing my mind

If I was possible to crawl into my unconscious mind and kick it's ass I would. Wouldn't that be a sight?

First grade. First day

2011-08-27T05:00:00.000-07:00

Today was Abby;s first day of first grade! I was so excited and so nervous at the same time. Like every other year we got her ready,took pics then followed her to school to take more pics. Seriously...every year.
I was a little upset to find that she didn't go to the first grade today until her special ed teacher explained that the typical kids need a few days to calm down and the teacher needs a few days to show them she is in charge before they bring a special kid in. Since Abby does get nervous around too many typical peers at once I calmed down.

Here is the Princess this AM getting ready for school(while being waited on hand and foot)

Ignoring Mommy with a grin while I was trying to get the waiting for the bus picture

Fresh off the bus playing sleepy

5 seconds later...Mommy says,"Who's my big first grader?"

Teacher sits on one side and plays and Abby plays back. Though this one was pretty cool!

Mrs B and the Princess

Abby with her student volunteer helper. Love those kids!

Classmate S

Classmate E

Mr I

Mr N and Miss L

My Boyfriend blowing me a kiss when I asked,"Who's my boyfriend?"

Abby with her massage therapist Angel after school

Stretch it out Woman!

Long day. Passed out. She's done!!

Back to School Night

2011-08-26T07:00:00.000-07:00

Abby all pretty for back to school night
Abby with her Special Ed teacher

Friends

Abby meeting her first grade teacher

Abby being overly friendly. What? Not my kid. Lol!

I saved the best news for last. After causing the school and the AT quite a few headaches and hurt feelings I about fell on the floor when Mrs Jones told me that Abby would be having a Dynavox eye gaze system in her classroom. It's not hers but it's there for her to use. Still wish we could get one for her at home or a My Tobii but I am thrilled!!!! Besides fighting with the schools,..... not knowing what your child is telling you is the worst. At least she has a chance at school now. Thank you Karen and Morgan.
Here is a pic of a girl using the device. So so excited!!!!!

Road Trip

2011-08-24T16:50:00.001-07:00

This past weekend me and Abby had to seriously get away so we took a road trip(small one) with a friend Look how happy Terri is to be out of her house!
Fountain where we stayed. Ho hum. Prettier in person
Kansas? Oklahoma? New Mexico?
Tee Pee/ Banquet hall. I thought it looked cool
Just 2 days away but we had a ball. Abby brings so much joy to everyone who comes in contact with her. Someday I will take pictures of that too!

Time for me

2011-08-13T08:09:00.001-07:00

Hey all,

Dont even know what Im gonna write here but I'll just give it a shot.

I'm exhausted. Not just tired right now exhausted but done to the bone,dead dog exhausted and need to make some life changes for me and my girl. Not everything I want can and will be done in a day but there'll are changes in the works.

Im starting with the little things. Shower,brush teeth,change clothes...everyday,,before I deal with anyone else.

Take naps..Kelly taught me that

Stop volunteering for everything or taking on what others wont because I can't stand anyone being dissapointed.

Making lists.

Planning.

Hoping.

I passed out on my front porch almost 2 weeks ago. Was out 12 minutes with poor stats. Looking at close to 8 grand in bills because I cant or don't sleep and have to everyone elses fixer.
It scared me.

I will not be any less of a friend, Mom,Rett friend,counselor,or question answer go to person. No more projects. No more spending money I dont have on maybe's.

Have to.

Don't

2011-08-07T19:44:00.000-07:00

Lately..almost a year now. I have been getting out more. Not on a daily basis but I travel when I have the opportunity . I take Abby with me whenever I can and I'd just like to make a few requests.

I promise you I wont be offended if you open that door for me. One day it was considered rude not to. Not that long ago.

Don't stare and whisper. I would so much rather you come up and ask me point blank what my daughters condition is then watch you stare till I see you then whisper to your friend.

When asking don't...ever...

ask me. "What's wrong with her." I promise I will embarrass you and you'll never do it again.

ask me,"What's her prognosis?" It's not something a stranger needs to know. If you want to educate yourself then take the info I give you and go home with it. Because what I hear is,"How long will she live?" and "Will she always be like THAT?"

Don't let your kids climb all over my daughter. She's not a jungle gym and can't defend herself. Don't make ME have to tell your children more than once.

My daughter is disabled. She is not ignorant. She is beautiful and she is sitting right there. She can hear you and she understands sign. Don't talk to her or about her as if she wasn't there.

Don't speak to her like she was a dog or a small baby. Coochie coochie coo...Who's a pretty girl? She's Seven, not TWO.

Don't ask others about her when I leave the room. I have disabled child parent hearing and trust me, I heard you. I hear everything. She hears you weather I am standing there or not.

She is my child just as yours is yours. My blood runs through her veins and my soul breaths for her. Do not be inconsiderate, cause I will knock you on your ass.

When I'm attending to my daughter I have no want or need for political conversation or gossip. When I am taking care of her nothing else matters so zip if for a minute would ya? You are the only one that enjoys the sound of your own voice.

Whew. Now that I got that out. Go on then..Best Wishes:)

Tah Dah!!!

2011-08-02T17:43:00.000-07:00

Surprise! Abby got a haircut! After spending an entire 103 day in our van pulling over every few minutes to pull hair out of her eyes,nose and mouth I got home and chopped it! She loves it! Another horseless therapy. Working with the Speech path

Actually can get her to somewhat aim with the arm braces she's had since her diagnosis. We gave up on them after she would fling herself to the floor whenever we put them on. She is actually tolerating them for periods of work. Not all day though. Dont blame her.

This is called gimme that mouth wipe. She is so stinking cute!

Stretch it out baby girl. She was actually tolerating this softer bumpy ball for tummy time. Just gotta find one!

Peace and Love

Terri and Abby

Momma never said there'd be days like this

2011-08-01T10:37:00.000-07:00

A nurse did though. Once in the early days after our final diagnosis.

I can't tell you which doctor or specialist office she was in. I just remember her saying,"My heart goes out to you. I too had children 12 years apart and my youngest has cerebral palsy. It's a whole different world. It's gonna hurt more often than not and your gonna have to smile right through it. It's gonna make you stronger than you ever knew you could be...and weaker than anyone will ever see. I feel for you dear."

Weird that I remember every word but not who she was or which office. I was in a total daze. The memories come and go.

Around the same time a mother in the Rett world also said....,"This is gonna suck. This will be the hardest thing you've ever done. Day after day. You are going to have to CHOOSE to be happy. There's no other way. There's no way you'll survive it and you have to be there for her. You will be her everything.'

That's a big no shit.

Most days I trudge through. Fighting for others. Raising money for a number of causes. Doing research,writing,data entry..advocating..always advocating.

I remember asking my friend Shay in the early days how she did it. How did she take care of Miss Lyss all day and all night long and still be everything for everyone,fund raise and advocate. She didn't hesitate,"I have to. For this to make sense to me. To keep me from curling up in a ball and wanting to die. I HAVE to."

Simple answer and exactly right. It's like I have no choice. There are days where I just want to take care of Abby and pretend we're just a little different. But there's nothing in me that can tell anyone no. Nothing in me that doesn't go above and beyond what I was asked to do.

Why? Cause I'm a fixer. Always have been. I used to be a workaholic. One of those employee of the month every month..Manager of the year types. I did my job and everyone else's too. Everyone knew if there was something they didn't have time to do, couldn't do or didn't know how to do it,I would find a way. Seriously. I can give references.

I can't fix this for me. I can't fix this for Abby. But I can be there for others. I can raise money for research and awareness in hopes that THAT will one day fix it. Any part of it. If that promised cure gave her anything. Her voice...words...her hands...her strength,,her breath.

I have been up for going on the 3rd day. I'm exhausted. So much to do. Don't know how sometimes anymore.

Off I go to smile right through it.

Too hot for Horsies!!!

2011-07-29T14:00:00.001-07:00

Most of you know that Abby has been in Hippotherapy for a year and a half. On days when it is over 95 degrees it is too hot for the horses. When it's too hot they do their therapy in the shade or in the Carriage House. Anyone who knows Abby knows she is extremely allergic to dogs. When I turned around and saw this I almost stopped breathing...until I saw it was a Shitzu. One of the few breeds that is considered hypo allergenic. Look how thrilled she is!

She was throwing water ballons at me. Loved it!

She got to paint the worse along with the other kids. Abby's is the purple heart looking one and the green below it

Just tossed the balloon with some help from MaryJill

Picking up floaties.

We love that they still have activities with the kids even when they cant ride. Abby giggles all they way home.

Joy in the simple escape

2011-07-27T13:23:00.000-07:00

Even though I went to Indiana to help with Brookie Bean I had a tremendous time with these two gals. My sister and I dont speak so being with twins that ADORE each other was really heart warming! Dorking out!

Having some fun before we left for the airport

Ok girls..Act like grown ups!

Name that McNamara!

There's that Shrek head again. Holy smokes!

Giggle!

She is an absolute blast!

Sunset through the trees in Kel's back yard..Taken with my cell phone. On day I'll have a real camera again. I love outside pics..I so rarely get outside I think I appreciate a beautiful place more

Just Chillin

How peacful os this with the lake right through the trees?

Dork a float!

Taking a lake break!!!

2011-07-25T16:52:00.000-07:00

I had such a lovely experience with Kelly and her family I decided to share it in several different blogs...in case that wasnt already apparent.
On Sunday night Kristin and Josh took us on a cruise on their boat and then a swim on Crooked lake. Just us. No kiddos. Very peaceful. This is their boat. So comfy and relaxing. I can totally understand why Kelly loves these little escapes.

Josh and Kristin...Yes they did have clothes on....or did they????

Me and Kel after me floating and swimming in the lake for a while at sunset.

The crew. Being awesome!

Kels house can be seen somewhere in this pic. If you know where to look!

So shallow we were actually sitting on our butts here

Beautiful

Before I jumped in and got all Lakey smelling! Love ya Kel, Kristin and Josh. Had a great time!

The Happy Hosts. How cute are they?

Goon on crooked lake...a self portrait

Boston Clark "Monster Mash" Butler

2011-07-23T13:14:00.000-07:00

During my visit to Indiana I also got to spend some time with this lil man. I hadnt seen him since he was 3 or 4 months old and still hooked up to oxygen. He is such a big boy,,not in size yet but definately in personality. And yes. He's kissin the ipad! You forget sometimes when you deal with Rett all day long that babies that can move and use their hands can be exhausting. He is so stinking cute though.

Lil man standing up on his own. Look Ma! No hands!

The day I left. Taking some photos in the yard. Man I thought the twins made my large dome look big! Boston makes me look like Shrek head!

His first experience with the iPAD. I thought Kellys face was gonna split from smiling.

One last snuggle before I go. Love you Lil Monster Mash!

Brooklyn and Family

2011-07-21T14:05:00.001-07:00

Hello everyone!
I spent the last week in Indiana with the most wonderful loving family.
I know alot of you know the Butler family from Indiana. Kelly is an incredible mother,friend and inspiration!
Like many of us..actually most of us.Kelly had to get little Brooklyn a gtube last week. 2 years ago right after Abby got hers I told Kelly if Brooklyn ever had to get one I would come and help so I did. This family put in a tremedous fight to keep her eating but many times Rett Syndrome just wins and you have to do what you have to do. This is the McNamara/Butler crew. Actually Kelly and Kristins Dad Mike is missing from this pic. What an incredible man. Made me miss my own Daddy. This family takes care of each other like EVERY family should. Being with them was exactly like it it is when I go visit out West except it's not Just Kelly that gets it. If it takes a village were ever true this house would be an example. From sun up to sun down eveything revolves around each member and the family as a whole. Something we all wish we had. They all really do love each other so much and it shows in everything they do. Total teamwork. I was in awe of all of them. Every single one.
Suzy and Kel. What a Mom and Grammy she is. Unexplainable. Love love love this woman. So nurturing and understanding.So incredible helpful in a never complain,it's my reason on earth woman..I may just cry
Kelly and Kristin and yes...I can now tell them apart!!!!
Kelly, Boston,Brooklyn and me. If I didnt have Abby to get back to I dont know that I would have left.
Me and Brookie getting some cuddles in Saturday afternoon. She is such a trooper. eating and taking bolus feeds. What a tough lil studmuffin she is!
Kisses. I love you Princess Brookie Beanah Weanah!
Just a few days out from surgery. Look at that smile. Nothing better.
The day before I left I loaded the kids up with apps that Abby likes and they LOVED them. They both were so amazed by the iPAD. I think the best was seeing Kelly watch her kids faces and reactions...Priceless!

Lot's more pictures and stories to come!!!!

Your Chance to Win a $15,000 Eyegaze Computer!

2011-07-11T13:12:00.000-07:00

Good Day EVERYONE!!!!!

Oh how I wish I qualified for this ... but since I am part of Girl Power 2 Cure, I am not eligible.... but YOU ARE!

The MyTobii P10 is THE system Abby has been tested on, the one most used in Rett Syndrome...at least with the girls we know. AND Girl Power 2 Cure is raffling one away!

Can you imagine? A voice for your child? You can ask her what's wrong, what she wants? She can tell you she loves you.... She can tell you what hurts?

How many of you have dreamed about an eye gaze system? I know that I wish we had one. I wish every single day.

Here's your chance to get one ......

All while raising funds to support Girl Power 2 Cure! No more fighting with the schools and insurance if you win???

How does it work?

>>for those in need of a system<<

Rally your friends and family to purchase tickets in your honor! If their ticket is drawn, you win the MyTobii P10 Eyegaze System and they win a $500 Visa Gift Card.

**Open to US Residents Only**

You print our RAFFLE FORM AND TICKETS, collect donations (by check or online), and mail in the completed forms and tickets.

You can also start a TEAM PAGE to get online donations for your team.

REMEMBER: Whether you get donations online or send checks via mail, you must mail completed RAFFLE FORM AND TICKETS to Girl Power 2 Cure for them to count.

>>for those wanting to support a team/person in need<<

PRINT RAFFLE FORM AND TICKETS and mail with donation to:

Girl Power 2 Cure
2891 Breakers Court
Amelia Island, FL 32034

Or see if they have an online team if you would like to donate with a credit card. If not, contact them to see if they are interested in having a team so they can take donations online!

Visit the P10 RAFFLE WEBPAGE for more information and official rules.

KEY LINKS:

DOWNLOAD THE
RAFFLE FORM
AND TICKETS

DOWNLOAD THE
INFO FLYER

START AN ONLINE
FUNDRAISING PAGE

Good luck to EVERYONE!!!

Me and my girl Dancin

2011-06-28T06:49:00.000-07:00

Just got this video sent to me. While we were on vacation my friend Jerimarie walked up on me and Abby dancin in our friend Gails kitchen. There was no music..just us. I was aware that Jerimarie was standing there but not that she was videoing or taking pictures until the flash at the end.
Just me and my girl....Love her!

Words can mean so much

2011-06-24T14:30:00.001-07:00

Abby has got something going on here lately. Not sure what it is but I hope it continues.

It's hard to explain but it's like there is something firing in her. You RettMoms will know what Im talking about. The whole thing with Rett Syndrome is the connections between the brain and body dont complete. The brain is intact, the spark is there but the road is too short and filled with too many obstacles to get her where she needs to go.

Ive said before that Abby has never has been a Silent Angel. She babbles and yacks and looks at you like she is speaking a language.

Every once in a while a word approximation will get out...Hitting the tv saying eee wee. Someone says Angelina..Abby says Yah Lina. Goingto the doctor we on occasion get okker okker on the way there. They always bring tears because we know she is trying so hard.

For the last few weeks we have been getting actual words. Out of nowhere more and more frequently. What used to be a sudden word that would shock the room 3 or 4 times a year is coming daily. Just 1 or 2 but Im ecstatic. Strange thing is her teacher told me when I told her we were going to go on vacation that traveling and seeing new things do more for language and vocabulary than anything she could do in her classroom. I just remembered that as I was typing.

We are getting Yah and No's daily. Not every time we ask but at least 2 or 3 times a day.

While on vacation and visiting Seaira's classroom I asked Abby is she wanted to go to school there when the teacher was visiting with us. Right away and clear as day Abby said,"No Mama"

The teachers mouth hit the floor and said,"She can talk?" I had to say,"No. But fortunately, every once in a while the words just spill out but not usually together like that." We were stunned.

Right now she is dancing around the room speaking"Abby" ooh yaa ducca laaa yaa boogah nah woo ya. I wonder if she is singing along with her Nick Jr in her own way? She just ran up as fast as she could and yelled"Dah, Good."

Last night when we picked up her Dad from work he opened the van door and she yelled,"Hello."
We all sound like a bunch of parrots every time she gets a word out. We all yell it. Last night 3 adults yelled."Hello" right back at her with smiles and tears.

Im hoping one day soon I wont remember the exact date she ever said any word bacause there will be too many to count....One day soon

Vacation

2011-06-17T21:33:00.000-07:00

As always I am behind.

Abby and I got back from vacation a week ago and I finally have the pictures together!

Almost every year for the last 4...we missed one...Abby and I get together with four other Rett families from a support group I started back in 2007. There are actually 9 families but the others have not yet been able to attend.

I wont go on and on about every detail but I will show you...or bore you with a picture slide of my trip..with captions instead of having to read 12 pages of everything we did you can just see it.

I will tell you before hand that one of us was not able to attend this year and we were heartbroken so we blew up pics of Tracy and her daughter Angel and included them in our fun...and no its not creepy. We love them!

For those of you who arn't Special needs parents...Our time together..even just that one week a year or a weekend here and there...it's the only times we get to feel normal. Like we feel that we are surrounded by people that get it

Everyone loves each other like the family we all wished we had. Its instant and unconditional.

All pics were taken in Oregon and Washington

Enjoy!

Please click on the link. When I loaded the slide to my blog it foze up but is viewable in its entirety below.

To view pics click Here

Happy Crap Day!

2011-06-15T16:08:00.001-07:00

Ever have one of those days??Weeks??Months??? Years????

I more than realize that I am not the only person in the world with problems but I do believe I am getting more than my fair share!!! Let the bitchfest begin!!!!

I hurt my back a few weeks ago. I knew it was hurt but thats part of my job. My back hurts alot. I have to lift a 50 pound kid a dozen or more times a day. It wasnt the normal hurt and I knew it but I suffered through it. I had a vacation coming with Abby, where we get together with other Rett families once a year.My tickets arrived anonymously after I bowed out and said I could not come this year. Couldnt exactly cancel when someone wanted me and Abby there bad enough to spend $900.00 to get us there.

So we went. 2 planes there and 2 planes back. 6 days of swimming,Hiking,Mountain Driving...no way I was climbing..and playing with other RettGirls. We went to A National Park, A waterfall, Mt Hood,Seaside Oregon and more. I was in pain and everyone knew it. The other Moms carried and lifted Abby when they could for me..didnt even have to ask. My back hurt so bad I would lay in bed at night and cry.

2 planes,4 carry ons,Abby and a wheelchair later we came home on Friday. I was in tears when I got off the plane. The next day the brakes went out of our POS van. See Post below..

Today I couldnt take it after I didnt sleep at all last night. I called the doctor and they could only see me today if I got there in the next 10 minutes. I live 20 away. I chanced it and was just a lil late. Dont know what difference 5 or so minutes make when you sit in a waiting room for 45 minutes. Then an exam room for half an hour before the someone comes in to take your temperature. Then 30 minutes till the doctor comes in. Then 30 minutes for xrays and on and on. After that I got a weeks worth of once a day muscle relaxers and an order for Physical therapy. 2 blown discs. Nice huh?

No big deal right? I have insurance. It must be good insurance too cause we pay almost $700 a month for it. More than that some months. oh but it is a big deal...My husbands company..who changed insurance and gave us nothing more than a card. No handouts, no packets...Besides the fee going up 80 dollars a month we apparently have a 1,000 dollar deductible now and they don't cover DME(My backbrace) nor will they cover my physical therapy until I pay the first 1,000 friggen dollars!!!

Ok breath Terri...If your kids needed it you would do it so I agree to it. I agree to 6 weeks but warn them I may only be able to do 3 with the cost. So, they work on me and show me positions to help the pain. How to get up from laying and sitting. How to stretch and strengthen. I get out of there with almost an hour to spare before I have to pick up Abby for her therapy for Scolosis. Cant believe I still have an hour...till I get into my car and realize that the clock in the therapy room is an hour behind and I am now 25 minutes late picking up Abby from school... Can you say Heart attack??? No one was answering in her classroom..Total panic attack to the point of hives on my face and neck. Now running..and limping with my backbrace on into the school to find her sitting in the office with her teacher. Man I owe that woman big time!!! And I need a watch!

Thats my day so far....Still have a 40 mile trip to make in the 98 degree heat and have to brave the giant line at the pharmacy..

I guess nobodys peed on me yet today...

Score!

Pamster

2011-06-14T14:57:00.000-07:00

Shout out to the Pamster!

She is going to kill me for posting this pic BUT...she never lets anyone take her pic. Goofball.

That being said. I just wanted to let you all know a little about what this woman does for us.

We have 1 car. One 13 year old,no airconditioning pos van. When Abby needs anything or I need anything she becomes our instant free car rental or chauffer.It is a very rare occasion that she tells us no. I can think of twice in 10 years. Once she was at a social gathering at a friends and the other time she was hundreds of miles away at the time. I seriously one time borrowed her car 9 times in one week.

Saturday the brakes went out in our van. No squealing for a while no nothing. I call her up Sunday night and she arrives Monday morning before work to take me and Abby to the hospital for an appointment. An appointment in which Abby screamed her head off the entire time. Not a word from the Pamster. Nothing but love. Even does all the lifting of Abby and the chair since I have been having horrible back pain for weeks!

Last night I call her while she is at work. I need a ride to swim then to take Abby to school...again all before work..no problem. Arrives bright and early lets me have the keys and grabs the rest of her zzz's on my couch.

Weekend before last she shows up Saturday and Sunday just to see if I need help. Seriously people. If everyone were this good a friend or a family member the world would be a much better place.

If you happen to have you very own Pamster...lucky you! Make sure you say THANK YOU!
I just did!

Thank you Pam. We love you!

Bubba graduates!

2011-06-02T12:53:00.001-07:00

On May 19th Abby's brother and my oldest and only son graduated high school. YEAHHHH!!!!Here are some pics we took around the even that are in no order that makes any since because blogger drives me crazy!!!
Grandpa John and Grandma Gerre
His class. Thats him there in the red:)
Lovin the shirt and tie!
Snigg sniff...tear
Awwwww
Our friend Rick who supports us in everything!
Video of the Graduate. 3rd young man on the right!

Abby's Kindergarten Music show

2011-05-31T22:51:00.000-07:00

Abbys Kindergarten class had a musical. Actually the whole Kindergarten did. 2 classes at a time. The way they had described it I thought it was one song and about 5-10 minutes per class. It was actually about 40 minutes and I couldnt be more thrilled with how they included Abby.
When we got to the classroom in was like Norm walking into cheers. Those kids love her so much. The girl just above her was so excited that she was going to get to push Abby's chair she was about to bust!
Somebody sees Mommy!
Plating the bells. The music teacher was so nice and stopped me afterwards to tell me how much she loves having Abby. She meant it. You could see it in her tear welled eyes
Just a singing!!!!
Tah DAH!
gREAT JOB kIDDOS!

Isn't she lovely?

2011-05-29T22:47:00.000-07:00

We got some mirrors to put up around the house...ok they were free and then decided we must move to a one level. No telling how long these 50 pound mirrors will lean up against the wall but somebody loves them~

Where in the world have we been?

2011-05-26T20:14:00.000-07:00

Going crazy. That's where.

I was actually surprised when I saw it has been so long. I do have a few good excuses.

First our computer went down and I have been doing everything by Abbys iPAD and my phone. Impossible to save or post pictures that way. Geek Squad and Best Buy are very high on my you know what list. I only had that computer for 2 months when it just stopped coming on. Why they still don't have it fixed after 3 weeks is slightly stressful.

Second Abby started Massage and Chiropractic therapy so she now has some kind of therapy outside of the house 4 days a week. Thank you God for Fountain of Youth and Nashau Baptist. Without either of you this would not be possible and we are so very grateful!

Third Abby's brother graduated from high school. Hallelujah. Whew. I was crazy busy for the week before, during and 3 days after. Thank you for all of you who came, called,sent cards and traveled in. ( For those of you related who couldn't bother to do any...you can bite me)

We are still needing a second vehicle. We have been praying for a wheelchair accessible van but at this point would take anything. With having to take Abbys Dad to and from work everyday along with our appointments and therapies we are putting no less than a hundred miles a day on our 1998 dodge with no air-conditioning. Have I mentioned my back is seriously going to kill me?

So all that being said Abby is well and Happy. Hoping to get my computer back soon so I can be post more

Hope all of you are well!

Go to sleep little princess..la la la la la la la

2011-05-04T06:06:00.000-07:00

See this face? This is what I go to scold at 3am when she's playing. Not much scolding gets done when this is what you look over the rails at.

Possum
You still there Mommy?

Ok I'll go to sleep. Hee hee hee.

Go away Mommy. Its 435 am and Im singing my face off! LA alaalalalala boohag duucckka laaaa

449am....she sleeps....zzzzz

Mommy needs break..a spa day...heck a shower and a nap for that matter!

Boy I love that girl

UP all night sleep all day

2011-05-02T15:51:00.000-07:00

Awwww. Isn't she cute? NO! She's not! She is evil and sent her to kill me slowly.
At least that's how I feel most nights when I wake up at midnight from the living room floor where I have passed out folding laundry. I had put her to bed at 8PM and came in to find her above. Sitting and playing. Midnight on a school night!

I laid her back down. Seriously I did. This is what I found at 320 am when I woke up to giggling. A special thank you to all of you who insisted I put her in my room with me!

Talking bout horsey's

2011-04-28T08:46:00.000-07:00

Abby after a very eventful Hippotherapy session. She was very excited!

>

Trick Rider

2011-04-26T08:49:00.000-07:00

Abby riding up on her feet and hands to help with balance and core strength. We only filmed a little bit but she made it 2 turns around. She is doing such a good job!

She smiles at me with love

2011-04-21T09:17:00.000-07:00

She wakes in the morning with a whimper..pain in her back and legs from being in the same position I placed her in as I kissed her goodnight the night before.

I slowly stretch and massage her legs and back as she shakes from the pain,stiffness and tremors that ravage her mind and body..they slow and she smiles. Smiles at her mother..eyes twinkling.Saying so much in her silence.

I wait until she can move on her own before I lift her from her bed to carry her to the down the stairs and to the room where she sits in wait, to be readied for the day. She smiles at me with love

She waits..still with patience as I wash the sleep from her eyes. She frowns at me as I uncross her ever clasped arms and hands so I can dress her. She cannot put her arm in a sleeve nor her leg in a pant..and she smiles and searches my eyes..each and every day. Waiting for me to tell her what I am doing and what will happen in her day. She smiles at me with love.

I give her her morning meds 5 in all and she sticks her tongue out and sighs. Only a few moments to herself before she is medicated into safety again. Safety from the seizures,the anxiety, the stomach pain and the allergies she suffers from..not a guarantee but the only thing we can do. She sighs and smiles at me with love.

At the same time each day I carry her to her chair for the hour long ride to school where she will arrive asleep. I strap down her feet, her waist,her arms,her chest. She searches my eyes if I forget to tell her what I am doing and how much I love her and will miss her. She smiles at me with love.

She rides the lift onto the bus head now turned from me. She does not look back as they take her away. I smile at her with love.

I spend my day thinking or her and teaching and helping those smiled at this day. Before they went back inside to think and hope and pray.

I busy myself till she comes back to me..otherwise I lie in bed the never ending sadness eating away at my soul. If I'm not awake I will not cry. I feel myself growing old.

It's time. I wait to see her yellow chariot as it sails from up the hill. My heart beats fast as the door opens waiting with held breath. She lifts her head, eyes twinkling and she smiles at me with love.

I roll her in and feed her as she pushes a button to tell me about her day. She smiles and giggles, eyes singing as she listens to what she has to say.

We stretch, we read, we walk, we play until it's time for bed. I lift her tiny body into her big girl bed.

I close my eyes and pray and thank God for another day. I pray for as many more as he will give as she smiles from where she layes.

I kiss her tiny face, her eyes, her hands her head, she smiles at me with love as she lays there in her bed.

She smiles at me with love

~Terri

More horse therapy!

2011-04-20T20:40:00.000-07:00

Oh how I wish I had video or pictures but they are coming soon I hope.

At Hippotherapy Abby has a new therapist. She is so incredible..the things she can get Abby to do. After last week another parent brought in a flip camera...man gotta get me one of those. How convenient!

Last week we sat there in tears as we watched Abby hold sponges in her hand and drop them in a bucket.

This week we watched as the therapist had Abby ride facing forward,and backwards,side saddle and laying down,holding herself up. That is so much more than she got from the last therapist. This therapist has Abby riding,using her hands and using words. Yep words. I don't know how much Jen got on video yesterday and we arn't allowed too close but it was amazing!!!

Yesterday Abby said, Walk on,all done and no several times. And she threw some royal dirty looks when she said all done and she still had 10 minutes left and I said no...

And here we get to the always something crap out of something good. When the session was over the therapist told us this would be her last session. She just has too much on her plate right now and cant do this too. What??? Ahh come on. Why is it every time we get someone good they bail??? Hopefully the girl she was training learned something.

**This is a late add on but Jenn sent me video she took. We have been in the arena rather than outside so we have less room to move around. Hope you can view what little we got. We were very excited. Cant wait till we move outside so we can get more!
View video here....I think

Communication Bill of Rights

2011-04-15T13:51:00.000-07:00

Communication Bill of Rights

All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.

Each person has the right to

request desired objects, actions, events and people
refuse undesired objects, actions, or events
express personal preferences and feelings
be offered choices and alternatives
reject offered choices
request and receive another person's attention and interaction
ask for and receive information about changes in routine and environment
receive intervention to improve communication skills
receive a response to any communication, whether or not the responder can fulfill the request
have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
have AAC and other AT devices that function properly at all times
be in environments that promote one's communication as a full partner with other people, including peers
be spoken to with respect and courtesy
be spoken to directly and not be spoken for or talked about in the third person while present
have clear, meaningful and culturally and linguistically appropriate communications

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3.

http://www.asha.org/

Things they dont tell you about Rett Syndrome That you have to Learn

2011-04-11T10:57:00.000-07:00

This is a repost from 17 months ago. I thought it needed some revisiting for my new readers

Girls with Rett Syndrome have so many struggles. When first diagnosed parents are usually told to take them home and make them comfortable. Don't let this get you down. The genetic scientists are clueless. Sad but true.

For the parents:

She is still your daughter and the same baby you had the day before the diagnosis.

Do not take her home and give up. Through therapy she can be strong and through persistence and education you can learn to communicate with her.

You have to learn to dream new dreams for her and for yourself.

It's OK to grieve. This is going to be a long hard road. And she is going to give you more joy and love than you ever thought possible.

It's OK to let others help. You have to take breaks or you will be worthless to her.

Most important....You have to CHOOSE to be happy. Remind yourself of this in the down times.

The girls

Just because they can't talk doesn't mean they don't have anything to say.

Invest in eye gaze equipment and picture symbol software. You will find that though she may not be able to touch or say the right answer this doesn't meant she isn't looking at it.

Give her time to answer in her own way. Most thought processes take 30 seconds or more and it is very important that you don't ask her the same question over and over.

Our girls have very low muscle tone and low body awareness. Physical therapy is a must.

They quite often suffer from vertigo and equilibrium issues. This is why they pause in doorways,at pattern changes in the floor and why the seem unable to step down. A light floor to a dark floor looks like a drop to them. A 6 inch stepdown looks like 3 feet.

The process in their bodies that makes melatonin(the natural hormone that makes you tired at night) is not completed in them. Melatonin can be purchased anywhere. Check with your doctor for dosage instructions.

The screaming that occurs during regression is due to many factors. Such as Lack of sleep,confusion,frustration and gastro problems. Most suffer from some form of Acid Reflux or extreme stomach pain that can be controlled with medicine and diet.

When she stares at you and leans forward and then does it again..consider that because she can hear her thoughts in her head she thinks you can too.

For the Educators and Caregivers:

Please read all of above. Especially the last paragraph.

She has a movment disorder..not unlike ALS. She is trapped in a body that doesn't work and is weak. Her brain is in tact. She will take longer. You have to have more patience with her then you thought possible. She will show you if you let her. You have to learn her language which includes eye gaze,body language and movement.She will not perform for you. Her body does not work! Educate yourself and when you do..think of this student or patient as if this were your own child. You must imagine yourself or child waking one day and having invisible tape over their mouth. Your hands are tied behind your back. Your legs don't work. Your tummy hurts all the time and you have trouble breathing. How would you function? How would your own child? Empathy is a must.

Please please order a copy of The Rett Syndrome Handbook by Kathy Hunter....It will be one of the most helpful things you ever do.

Pathways To Learning In Rett Syndrome- A book every school with a Silent Angel should have

Please print this out and read it. I learned so much here:

Communication Strategies

Websites and support

Girlpower 2 Cure

RSRT

Montefiore Rett Center

Blue Bird Circle Rett Center

Rettgirl

Peace and Love
Terri

A good day.

2011-04-08T06:48:00.000-07:00

Kinda. OK mostly.

Yesterday I took Abby into church to meet with the ladies in the bible study group. They had been asking me to come in for a while. One car and Mr Workaholic didn't realty make that possible. We were going because they want to help me take care of Abby. Respite, babysitting, in case of emergency things like that. I have all but made the final decision that I don't want to have another stranger sent from an agency in my home. Especially after finding out the last one..one of the biggest in the state doesn't even drug test their employees. Seriously!

It was hard to take her in there. Those women are so loving and do not hide their emotions well. Abby was all but unconscious from the up in seizure meds so there were a few tears.

I didn't really prepare well. I just kinda went in a blabbed. Some of the ladies looked pretty overwhelmed by the thought of the meds and the gtube. Its not hard. I got showed once before we left the hospital. There is a ton to remember but everything will be written down step buy step and no one will be left with her until they are comfortable.

I just need to be able to go to a movie or a library or anything. The boys get to leave and stay gone whenever they want. With my responsibilities and lack of a vehicle leave me trapped...and I am beyond losing it and past the pride portion of not asking for help. I don't want money just time and care. Unless someone were to win the lottery....

After the meeting I decided not to take her to school. She had not woken up since 9pm the night before except for a moment while I was dressing her. She ended up sleeping till about 430 pm. I hate seizure meds almost as much as I hate Rett Syndrome! Almost!

OK so the good part..or the better part. As most of you know Abby has almost no functional hand use. She occasionally will swipe in the direction of what she wants but rarely makes contact and cannot grasp or hold.

Yesterday at Hippotherapy she amazed us. It may not be something that would be amazing to a Neurotypical parent but for a Rett Parent...We don't take anything for granted.

I was sitting next to Jen. Rivers Mom. Abby was on her horse on the other side of the arena.I really cant see that far so I thought that I imagined that Abby had something yellow in her hand. Jen turned to me and said did she just have that in her hand? We weren't sure so we kept watching. When they got her closer they did it again. She reached into a bucket and pulled out a yellow sponge the lifted her hand and dropped it in the bucket. You would of thought she just scored a touchdown at the Superbowl..except you cant scream at Hippotherapy because you will spook the horses your children are on. We stiffled our screams with hugs and tears. It was an incredible moment.

When she got off the horse I asked them what they were doing and she showed me..She made her do it again while standing with support and she did it. The therapist there is new and was just doing normal OT. I love the new people that come in with that lets see what she can and cant do and work on it. Because frankly, I have had it with the old, tired, none of these kids can do anything but soil themselves attitude.

Her Boss is getting a call today.

And Abby will be getting a bucket full of sponges in her Easter basket!

Stupid Stinking Seizures!

2011-04-06T06:00:00.000-07:00

Yep.

I friggen hate Rett Syndrome!

Last night I was giving Abby a bath..she had gotten very upset because someone who was watching her while I went to the store let her soil herself. She was in hysterics.

She bit me and pulled my hair as I cleaned her up. When she calmed down and smiled at me...I just lost it. I had one hand on her legs and one on her head to keep her from falling and I just buried my face in my shirt and bawled as quietly as I could. She was so pretty, with her big blue eyes. So grateful that Mommy had fixed it without saying a word.

My heart just ached for her. Why wont it go away? Will she ever be able to wake up from this nightmare? Where is her cure? We pray..we beg..everyone we know does...why can't she be fixed? Healed? Please God... And if one of you dares tell me that some must suffer so others may know joy will be uttering your last breath...just saying.

This morning was good. No problems...Until...we arrived at the Community Center for swim therapy. As we pulled in she was fine. When I put the van in gear George yelled that something was wrong. I jumped out and opened the door and she was completely slumped over, head to knees. I thought, Oh no not drop seizures now. Drops are when they seem to just lose consciousness for a few to 30 seconds or so, then they come right back like nothing happened. She didn't come right back up and I could hear gurgling. I lifted her up and she was gray..lips were blue and she was gurgling. I opened her mouth and her tongue was shaking. I opened her eye and it was twitching and rolling. I called her name...nothing..over and over.

I called my friend who's daughter has the same deletion of the gene that causes Rett Syndrome that Abby does and begged for help. She told me to get to a hospital and I freaked. Squeaky high pitch sobbing. I knew I needed to get her somewhere. The nearest hospital would ask us a thousand questions then send us to Children's 20 minutes away. We were losing time.

We flew home. I ran inside and got the Diastat I should of been carrying with me. We gave it to her in the seat of the car...Diastat stops the seizure and knocks them out and she was already knocked out.

Off to the hospital. 5 hours of the same old she has Rett Syndrome and it is a seizure disorder..their words. Neuro on call doubles her medicine that I hate anyway. The one that has made her a zombie. I throw a fit and want to talk to her Neurologist..Nope do as your told lady.

She finally wakes up after much prodding from me. She had been on her side snoring like a lumberjack. When she opens her eyes and turns to look at the doctor the doctor actually snapped her head a bit and said,"Oh my God. She's beautiful." I know...I know.

I tell them as we are being released that I will not be giving her the change in med until we speak to her doctor..they just stand there giving me the studies say per weight blah blah blah

My 24 hour a day studies say this crap took what was left of my baby from me...just like I said it would.

Off to the pharmacy..where they give me 2 boxes of double dose Diastat. Yah. She went from 5 mg to 10 mg with one seizure. I questioned it. They told me that was what was ordered. I question it again and they tell me its based on weight. I ask them to check and they tell me it's fine..it just didn't sound right.

Call the Neuro when we get home to get a follow up appointment because we arn't scheduled to go back in for 7 weeks..of course they see no need to see her. Friggen fracken geiglag fruggle boogah gak!

I question the meds and the nurse says the Diastat is wrong....I TOLD YA SO!!!!!

I question the other. The everyday Zombie med and tell her it's a big jump and she's still a zombie. SOMEONE ACTUALLY LISTENED TO ME! I know right? I didn't even ask if you were sitting down did I? She is going to contact Abby's Neuro and tell him of my concerns because she shouldn't still be lethargic and if she is they will more than likely want to make a change.

That's what we have for now..she's tired but happy. Going to keep her home tomorrow to keep an eye on her.

More later...

ZZZZZ....

Abby loves Bubba

2011-04-02T07:13:00.000-07:00

IEP's for Rett Syndrome and my Abby

2011-04-01T06:51:00.000-07:00

Hell hath no fury like a woman scorned....

No one is more frustrated and pissed than a Rettmom fresh out of an IEP for a girl with Rett Syndrome.

After our meeting..the 4Th of the year I think...My head hurt. I was getting dizzy from holding my breath. My fingers hurt from gripping the steering wheel. I felt like one of those old Felix the Cat clocks..showing my age..tic tic tic with my eyes rolling to and fro.

I need to change my standard operating procedure for these things. Last time I went in thinking I was prepared. Thinking."they" actually got it. I had given them books,literature,papers,studies,videos...

I even went in thinking..almost chanting..be nice..be nice.. Don't flip out. Don't scream..that wont get you anywhere. Didn't work. I was hateful. Almost mean.

After that meeting our super Neurologist called the AT and spoke to her for several hours. She told me she was nice and didn't understand at first but she did now..I thought she was right. I don't know how you cant understand that you cant make a Rettgirl use her hands. You are not going to get a non verbal child to speak. A child that cannot use her hands will not point at a picture or press a button. She is no less intelligent than her peers..the ones with devices they carry around with them because they can press the buttons and point. She looks at what she wants. It's called eye gaze. Videos,books,papers....not like I'm making this stuff up.

I was told about a month ago that the district would be purchasing a Dynavox Eye Max for the classroom...for the classroom because..well lets face it..they have to say its for the class. This one kid isn't worth the money and doesn't have the same basic right to communicate that her peers do. I had requested a My Tobii. They work great with Rettgirls and I have seen Abby use one.

So I go in and sit down...There are 3 people not there that I had been informed would be including a district representative and her Kindergarten teacher.

Be nice..don't verbally shred the AT like you did last time Terri. Act like a 41 year old mother and advocate. Not a rabid banshee for crying out loud. Let them talk. Hear what they have to say. Don't say no to everything and don't get pissed!

I have no idea where it went sour...probably when the AT opened her mouth. She actually said, and I quote," I am going to have to disagree with your Neurologist. Just because Abby was able to look at pictures on a screen doesn't mean she can comprehend what she is looking at. I saw no cause and effect. There were no questions and answers. Just Abby looking at pictures on a screen. It doesn't prove comprehension."

This after talking to the Neurologist. After admitting to her that she had never worked with a child with Rett Syndrome and didn't understand eye gaze. She then talked about tickling Rettgirls to get answers. The ever brought up head switch. Abby is the first Rettgirl she has ever dealt with. She observed 2 at an AT conference last year at a booth for a few minutes. Now she apparently knows more than me and one of the worlds authorities on Rett Syndrome.

Wow.

So what is she thinking? I think its a my way or no way kind of thing. I do AT so I know more than you. I'm thinking I'm never going to get anywhere here. I really don't think I can reach these people.

Rett Syndrome is what I do. I live it, I breath it.

The consistency thing kept coming up...HELLO!!!! They want her to be consistent and scoffed at my revelation that sometimes a blink while looking directly at you is yes. The next time yes is her putting her hands up in the air in the touchdown pose. Sometimes it's a smile while she hugs herself. It all means yes... how about some quotes from the worlds authority on AT and Rett Syndrome (Linda Burkhart):

".....Language components: motivation, processing of language in
activity, pragmatics, processing of questions, auditory filtering,
processing of symbol set, syntax/grammar, attention to task, memory
• Juggling means that the child may only have some of the ‘balls in the air’ at
any given time, and having all the ‘balls in the air’ will be rare. This explains
why performance is so inconsistent and can not always be predictably
repeated
• Need to take successes and move on, as opposed to requiring repetition of
the task over a given number of trials
• Provide opportunities for repetition/practice within natural contexts
without pressure. Use variation and natural motivation
• Recognize the difference between Testing and Teaching
• Children learn by doing
• Emphasize Experience - not drills
Parallel Programming:
• Coordinating all components of a task on an automatic level is extremely
challenging for children with Rett Syndrome
• Child can become easily frustrated
• If we wait for everything to develop in a coordinated fashion, we will be
waiting forever...."

I have given them this literature 3 times. Every member of the team and the district. Linda Burkhart has never met Abby. The first time I read this paper I jumped up screaming, " YES YES YES" It was like she had met her and had wrote the paper on her.

How did I handle all this? Dirty looks. Glares. A couple mutterings of "Whatever you don't listen to me anyway."

Then I made her functional skills teacher cry...Totally not my intent. I adore that woman but I was fed up. But, If they are not even going to try to work with ABBY..i,e. INDIVIDUAL EDUCATION PLAN..then there is really no point in her being there. SO I put half days for next year on the table. If she is just there to socialize and get only the bare minimum therapy then it might as well be playtime and respite for me.

The PT refuses any more than 30 minutes a week. Abby's scoliosis curve has gone from 17 degrees to 34 since August. I already doubled her Speech and OT time.

Why is a woman that stops by a couple of times a month in charge of my child's education?? Somethings gotta change. If that means keeping her at home and doing it myself then by God that's what I will do

Hippotherapy for Abby 2011

2011-03-30T07:00:00.000-07:00

Abby went back to Hippotherapy last week. We were a little concerned especially since she has been out since October. Since she started Kindergarten and elementary school her Physical therapy has been cut by hours per week and we have been doing it at home as much as we can. Below is the little Princess when we arrived. Getting suited up. She had all new side riders and a new therapist..who we are so impressed with! Here they had stopped and she has to tell the Horse to Walk on. Very cute She was able to stay up on the horse the entire ride and we were so thrilled. Her first few sessions last year were spent with her laying on the horse. Studly Mc Horserider walking out of the corral Daddy I did it! Helmet hair! She babbled all the way home! Thrilled! Stay tuned. Video to come soon!

Dress Up 2 Cure - April 2011

2011-03-28T17:04:00.000-07:00

Dress Up 2 Cure - April 2011 Hello all April is fast approaching and April is Autism Awareness month. Rett Syndrome is considered to be the very worst of the Autism Spectrum disorders. It is also the only one with a known gene of cause and the only one totally reversed in mice models in laboratory tests. Many genetic scientists all over the world are working on a cure for Rett Syndrome. Because it it the first Neurodevelopmental disorder reversed in tests it is considered the Rosetta Stone for many other disorders. In other words, a cure for Rett Syndrome could lead to a cure for many other diseases like Alzheimers,Schizophrenia and Parkinsons disease. For more info on this please click here. The reversal in mice was actually found quite by accident and reported in Febuary of 2007. Foor short months after my Abby was diagnosed. Funds for this research are funded almost entirely by private efforts by family,friends and loved ones of the girls and few boys living with this monster (as we call it that stole our children in the night and left us with children trapped in their own bodies with no way to communicate and numerous physical and medical issues). All caused by one tiny gene on the x chromosome that doesn't turn on until our babies are toddlers...stolen from us. Please help us raise funds during the month of April in honor of my precious Abby and thousands and thousands of children just like her. You can donate anytime here or at the link above. For ideas for parties and fundraisers please visit Dress Up 2 Cure's blog here. Just a little FYI...for every 300 people that read this only one will donate. We can only do this and succeed with your help!

Exciting News from Health BBC

2011-03-23T06:26:00.000-07:00

Breakthrough in delivering drugs to the brain

By James Gallagher Health reporter, BBC News
==============================================================
Getting drugs to brain cells has hampered medical advances

A new way of delivering drugs to the brain has been developed by scientists at the University of Oxford.

They used the body's own transporters - exosomes - to deliver drugs in an experiment on mice.
The authors say the study, in Nature Biotechnology, could be vital for treating diseases such as Alzheimer's, Parkinson's and Muscular Dystrophy.

The Alzheimer's Society said the study was "exciting" and could lead to more effective treatments.Research barrier

One of the medical challenges with diseases of the brain is getting any treatment to cross the blood-brain barrier.

The barrier exists to protect the brain, preventing bacteria from crossing over from the blood, while letting oxygen through.

However, this has also produced problems for medicine, as drugs can also be blocked.
In this study the researchers used exosomes to cross that barrier.

Exosomes are like the body's own fleet of incredibly small vans, transporting materials between cells.

Many potential drugs have not been properly tested because you couldn't get enough of them into the brain”End Quote Dr Susanne Sorensen Alzheimer's Society
The team at Oxford harvested exosomes from mouse dentritic cells, part of the immune system, which naturally produce large numbers of exosomes.

They then fused the exosomes with targeting proteins from the rabies virus, which binds to acetylcholine receptors in brain cells, so the exosome would target the brain.

They filled the exosomes with a piece of genetic code, siRNA, and injected them back into the mice.

The siRNA was delivered to the brain cells and turned off a gene, BACE1, which is involved in Alzheimer's disease.

The authors reported a 60% reduction in the gene's activity.

"These are dramatic and exciting results" said the lead researcher Dr Matthew Wood.

"This is the first time this natural system has been exploited for drug delivery."Customised

The research group believes that the method could modified to treat other conditions and other parts of the body.

Dr Wood said: "We are working on sending exosomes to muscle, but you can envisage targeting any tissue.

"It can also be made specific by changing the drug used."

The researchers are now going to test the treatment on mice with Alzheimer's disease to see if their condition changes.

The team expect to begin trials in human patients within five years.

Dr Susanne Sorensen, head of research at the Alzheimer's Society, said: "In this exciting study, researchers may have overcome a major barrier to the delivery of potential new drugs for many neurological diseases including Alzheimer's.

She said the blood-brain barrier had been an "enormous issue as many potential drugs have not been properly tested because you couldn't get enough of them into the brain."

She added: "If this delivery method proves safe in humans, then we may see more effective drugs being made available for people with Alzheimer's in the future."

Dr Simon Ridley, head of research at Alzheimer's Research UK, said: "This is innovative research, but at such an early stage it's still a long way from becoming a treatment for patients.
"Designing drugs that cross the blood brain barrier is a key goal of research that holds the promise of improving the effectiveness of Alzheimer's treatments in the future."

Exosomes may have other medical applications.

Alexander Seifalian, a professor of nanotechnology and regenerative medicine at University College London, told the BBC: "Experimental evidence indicates that exosomes can prime the immune system to recognize and destroy cancer cells, making them a potential tool as cancer vaccines."

He also said exosomes "could well form the cornerstone of nanoscale drug delivery systems of the future."

He added: "The apparent versatility and established biosafety of exosomes underscores the potential of these biological membrane vesicles to be of tremendous potential in the realm of nanotechnology and regenerative medicine."

Seizure meds. Told ya so

2011-03-18T20:07:00.000-07:00

At the end of January I told you that Abby had had a seizure. A week later she had a cluster at school. Against my better judgement..or my overprotective judgment I allowed her to be put on a seizure med. I told you I would hate it and I do.
These videos were taken of Abby last weekend after more than a full nights sleep and a nap. The Abby I knew has not yet returned to me and this is her most days.

She arrives each day at school asleep and sleeps until they wake her to come home. She is dazed, confused and out of it

and

1st school birthday party

2011-03-17T12:31:00.000-07:00

We took Abby to a friend from Kindergartens birthday party this past weekend. We were pretty nervous considering it was at an indoor bouncy park but thought we'd give it a shot. Below is her reaction...translation..."Are you friggen kidding me Mom?"

Seriously that was so not fun and you guys are about to p me off!
Her friends
Abby with the birthday girl about 20 minutes after we got there. We had to beg off. She was just too overwhelmed. But hey, we tried.
5 minutes after we left. Poor kiddo.
Seriously hoping we get our Abby back soon. I hate these meds. It's probably a terrible thing for me to say but I think id rather chance the seizures than have her like this. She is a zombie. 24/7 and that is almost 6 weeks into the medicine.

Thank you!

2011-03-17T12:27:00.000-07:00

Wow!

After my last post..where I said it be the last one about me or me whining I got a ton of emails.

Apparently alot of our readers take comfort in being able to read about my feelings too..kinda shocked me. Sometimes when I go back after a bad day and read I feel bad and come to find out that's ok.

So, Im going to work on catching up with pics and videos and keep my boo hooing to a minimum but my feelings count!

Thanks for the support!

Terri

Day off Paybacks

2011-03-11T10:42:00.000-08:00

Yesterday I had a day off...Kinda

We agreed some time ago that if we were going to keep me from going absolutely insane that, from time to time, I would take a day off just for me.

I think that was about 3 years ago. At first we agreed to once a month...I had one that first year. Then we decided that it really should be twice a month..no way we could swing once a week.

Yesterday I had my 3rd day off in 3 years...It was actually supposed to be on Wednesday but someone had to go to work. Then it was agreed for yesterday..then someone I will not name..who is on salary..got called in again. I had to go all Total Terri on him and we agreed..I agreed..that I could have the car while our little Princess was at school and just go be by myself, outside of the house.

I started with a fast food dollar Menu breakfast from Wendy's. YUK! Should have hit MCDonalds. I had planned on lunch but with the change of schedule we had to change movie times and I am far too cheap to eat at the movie theatre. Seriously my family jokes about it. I could have a thousand dollars in my pocket..I am not paying 5 bucks for a hot dog and another 5 for a soda. They make me have to pee anyway then I end up missing half the movie.

So, yes, I am one of those weirdo's that is sitting in a movie theatre all by themselves.

Saw The Adjustment Bureau. Ehh. It was a Matt Damon movie. Same ole..Sorry Matt. Anything else I wanted to see didn't start till 4 or 430 and I had to be home by then.( Can you just picture Matt all curled up in a ball in an office somewhere cause a middle aged manic depressive housewife from the Midwest said Same ole about his movie?) It's OK Matt. I'm sure you'll be OK. Here's a tissue.

I then crossed the highway to hit the all in one Barnes and Noble and Starbucks. OOPS my bad..did I mention I am being weaned off my anti anxiety/depression medicine to start a new one? So...sitting at the light I start to panic...love it when I do that it public. The car in front of me is half in the intersection at the 2nd most dangerous intersection in the city and the light starts flashing a yellow arrow. It all of sudden dawns on me I might not want to be out like this alone while weaning. I all of a sudden remember to breath and remember to focus and forget and drive on..Whew

So, I was looking for 2 books in particular. The Secret by Rhonda Byrne and One Thousand Gifts by Ann Voskamp. I have been on this get over it and be happy and Look for GOD everywhere kick. Need to have to. I cannot rely on Meds and my bed to make it better anymore.

I found both and purchased them. I went over to the coffee shop and endulged in a carmel macheatto sp? and an Chocolate explosion cupcake...ohhhhh man! I opened up One thousand gifts and started to read. It only took a few pages to realize this was going to be the book I needed. I kept having to stop every few paragraphs to catch my breath but wow.

So Paybacks...I really did have a wonderful day. Sharing one car I rarely get out. Church on occasion anymore and every other week therapies. That's it...Come to think of it my house really should be cleaner than it is with all the time I spend in it.
I actually wore myself out yesterday between the med change and the alone time and actually got to go to bed early.

Fast Forward to midnight. Abby wakes up projectile vomiting. We have moved her bed into my room since the seizures started in hopes that I could rest easier and get to her quicker. She was shaky and quite PO'd. I have no idea if a seizure started the vomiting or if she just got sick...she feeds through the night with her Gtube. So she puked all over her bed,herself, me and my bed. That's what I get for taking a day off!

NOTE:
This will be my last blog on here about me. I have decided that I need a blog dedicated to me,myself and my endless ramblings. This blog really needs to be about Abby, Rett Syndrome and helping other families.

Flu Smew

2011-03-05T20:18:00.000-08:00

If you get your kid a flu shot and she gets the flu anyway can you get your money back?

Abby is still sick. The fevers have pretty much gone..kinda sticking between 99.5 and 100.5...much better than the 103-104 we have been having.

I'm hoping for a miraculous recovery tomorrow. She has already missed a week of school. She has got a gnarly cough though and isnt sleeping well. Her Apnia is really kicking in.

After the other day I'm thinking about paying someone to drive her around town for 4-5 hours so we can both get a proper nap.

Do you think they make mats that go under a matriss that emulate a running minivan?

Those would be awesome!!

Princess Sicky Poo

2011-03-02T10:26:00.000-08:00

Hey all.

So Sorry about the time between posts.....

This week Abby has the Flu and missed her 1st 2 Kindergarten field trips/ I feel terrible about it but she is running fevers between 103 and 104. The doc warned us that the fevers could come and go for a week.

This is video of her last night when the fever she has had for 2 days broke..about 3 hours after a dose of Tamiflu

Happy Day

2011-02-23T11:15:00.000-08:00

As most of you know last month we went to New York in support of our friends who were appearing on The View. Here is a video from that day. Ignore the beginning where the girl in blue looks like a deer caught in headlights.

I dont know what I would do without these ladies. The are so incredible and so supportive....AND so much fun!

Adjusting

2011-02-15T19:50:00.000-08:00

Hey all,

It has been crazy around here lately. Mostly my fault. I'm sure things could run much more smoothly if I wasn't such a nutcase.

We started Abby on the meds and I hate it. I hate that she had a few seizures, hate that I was forced to medicate her and hate the state she is in. Rett Syndrome wins again!

In my paranoia I was just sure that as soon as i put the first dose of seizure med in here she would be catatonic. Didn't happen but she is different. I am praying she adjusts.

She has been moved into my room and we are working on turning her room into an office/dressing room...I don't know who we is..damn voices in my head.

Abby's little system is handling the change poorly. She seems to be starving. Keeps telling me she is hungry through pictures and when I feed her she gags and vomits. She hasn't had a bm without help in a week. She is clingy, spaced out and wobbly.

The exhausten hit me today like a ton of bricks. After she went to school I put a load of laundry in and was going to just rest my head on the couch for a minute. I woke up 6 hours later and still feel like I could sleep for days.

I have been trying to get video or pics of her to post for you so you can see that she is OK but she is not having it. Hopefully soon.

We have been without a caregiver to help for ...I fired her sometime last week but I was lucky if she was showing up 2 days a week for the previous month. My house is a war zone, someone borrowed my carpet steamer and I cant remember who and I have stacks and piles everywhere and all I want to do is just sleep..not sure if it's the being exhausted or depression

Thank for checking in. We're trying...and she's ok

Terri

Bummerville

2011-02-11T09:10:00.000-08:00

Welcome to Bummerville. If you look to your left you will see Rett Syndrome,Seizures,diapers,meds and g-tubes. If you look out the window to the right you will see examples of complete hysteria,exhaustion and little pieces of one Moms heart scattered to and fro.

What a sorry sack I am lately huh? I think that I have decided instead of a quarterly nervous breakdown I'll just do it once or twice a week for sh*** and giggles.

Unfortunately Abby's seizures have continued. They arn't bad considering what I have seen and heard of some Rett Girls going through..They are totally breaking my heart but..considering...it could be worse (Please God don't let it get worse)

They have been lasting 1-3 minutes and she recovers quickly. The first few completely wiped her out.

On Monday the school called me while I was doing my --screw it I'm gonna lay in bed all day and feel sorry for myself routine. Abby had just had a cluster.(one after another) She vomited towards the end of one and as they were cleaning her up she went back into it. Her Dad went and got her and brought her home. She came in the door smiling like she just got a get out of jail free card.

That day I called the Neuro's office and had quite a large cow on his nurse over the phone. On Tuesday they called with an EEG appointment followed by a Neuro appointment for Wednesday.

We stayed up pretty late. Midnight for Abby and 3 am for me. Got up just before 5 am. She of course did not have a seizure during the EEG. I however, had to close my head and turn my eyes cause it makes me nauseous.

We met with the Neuro...I tried to fight the meds. Tried to excuse away the episodes as maybe something else. Begged to wait. In defeat I finally had to give in and realize that she is having seizures and I have to help her. Burying my head in the sand, praying,crying and refusing treatment isn't going to stop her from choking to death in the middle of the night of her own vomit.

I hate that Rett Syndrome wins every battle...insert a barrage of profanity here...

Why am I so devastated? For people to say seizures are a part of Rett Syndrome is like that bunghole person that always has to make some stupid comment...like when my dad died...,"He had cancer. It's not like you didn't see this coming."

For the most part if girls with Rett are gonna have seizures it is almost always by 3-4 years of age. We had beat that by 2 years. I had found God again. I just didn't expect it. Not at all. Walking into that room that first night I felt ambushed. Like I walked in to an intruder that had ahold of my baby and kicked me in the face when I walked in the door. Now I have to live with that happening at any time. I feel trapped and held hostage..

Whole lot of I's there huh? Poor me. Imagine all that and being 6. When I was six the only thing I was worried about was ice cream cups after lunch and hoarding all the blue crayons. I could scratch my own feet. Go to the bathroom. Eat. Breath. Walk.Run.Talk.

I may be crazy...OK who am I fooling? I am crazy. I always feel like Abby is being punished for something I did. Some sin from the past that I haven't been forgiven for. For being a bad kid. A bad sister. For making fun or not helping someone. For my years between 16-22. Was I too selfish? Did I bully someone or hurt them terribly?

I sometimes...there's that I again..lay next to her at night. Spooning with her and pray to God that he will take whatever she needs to make her whole from me and give it to her. Weather it's a hormone, a gene, a protein..a thousand genes..take it from me and give it to her. I would be forever grateful to be a blob on the floor than see her have to struggle one more day.

The lack of sleep is what is making this Mom even crazier I think. Per Docs orders I have her in bed with me. I'm up and on watch if she stretches,sighs,makes a noise,turns over. That shudder thing we do after she stretches darn near gives me a heart attack.

Bummerville.

New friends and knowing

2011-02-06T08:42:00.000-08:00

continued....

So months after they knew..... the baddest part of Rett Syndrome is kicking their babies butt. For me it was opposite. It was kicking her butt and I didn't know why.

They, of course, have questions about what we experienced. Was Abby like this? When did you first know something was wrong.?What could she do?

These are hard questions. Back then I was clueless for the most part. Did I know something was wrong with my daughter? Yes I did. Back then I didn't know I knew.

Confusing statement I know. Hopefully I can make sense of it here.

Abby was over due and was born over 9 pounds face up with an apgar of 9. I questioned why she didn't cry when she was born and they told me she was worn out. I questioned the score and they told me she was pink,breathing and responsive.

I will tell you this is the second time today I have written this. The first time I went into every detail and it ended up being a novel so I will try to condense it.

We knew we had the happiest baby ever. Everyone said so.

We knew she turned over and held her head up a few days after being home from the hospital.

We watched videos of her brother at 2 months old not being able to do stuff or be as aware as she was at a week old..2 weeks..2 months. She always seemed ahead of him in age comparison videos.

We knew that he were invited to be in a video promoting the services of the clinic she went to and everyone commented how awesome she was.

We knew...

She said her first word at 5 months and could say words in both our languages by 6 months.
She played pretend

She always had a toy in each hand

She fed herself at 6 months

She was so full of life and personality she had personal Abbyisms for different people.

She was Audra's booby snuggler

She was Mae Maes Princess

She was Bubba's wrestling Buddy

She loved to attack and bite her Nee Nee and her Billy

She shared her toys with adults and bit babies. She was a brat

She was a flirt

She loved heavy metal music and would turn the 5 disc cd player to Metallica. No matter how many times we put in other cd's she would search for them and boogie down. My Lil Rocker.

She loved to dance

She was a Daddy's girl

She was Mommy's everything

The signs....

She never cried..never..not unless she hit her face directly on something..After having a kid with colic before we were very grateful

She tremored when you woke her up. The docs called it a startle reflex

She seemed to be spoiled and lazy...I did breast feed her for 17 months. Every one decided it was my fault because I held her too much.

She had no desire to hang on. Like I couldn't put her on my hip. I know now it was floppiness and low tone. Back then I really had not idea.

She stopped sleeping at night. Nights were the worst. She would scream and scream. The answer? Spoiled. My fault. Need to make her a schedule. Spoiled brat.

She woke up one day rubbing and twisting her fingers. We thought they itched. Later that day after she looked blankly at her Cheerios and juice for 3 hours I called and asked her Dad if he had dropped her or if she had fallen off the bed and he hadn't told me.

After a few days of blankness we realized she was almost completely silent. Except for the screaming. There was no more babbling.

We took her in...They said I was crazy. We switched doctors. When I started to recount things he told me she was fine and that I had Munchhausen's Syndrome.

I flipped and they agreed to tests. Another doctor said CP or stroke. They did an MRI and ordered genetic testing. We did the MRI and it was normal. We refused the genetic testing.

Why did we refuse? Because we were scared. We didn't know what they were going to tell us and they didn't know what they were looking for.

They came back with a best guess PDD and a suggestion that I seek some Mental Illness counseling.

The rest of the story I have told a million times and am too exhausted to completely recount here again. Eventually I found it in a book. Took her to her current doc and he nailed it immediately. First tests were negative..whew sigh of relief. Backup test was positive...world came to an end.

Was she like this?? Yes Stef she was. We just didn't know why. The only difference I can see is that you had your answers before regression. Her regression caused our search for answers.

I'm here sweetie. Whenever you need me

New friends

2011-02-05T16:45:00.000-08:00

Hi all.

I made some New friends in December. The are currently dealing with Rett Syndrome at it's worst.

To say that my heart aches for them..it does. It makes me remember why I stopped reaching out to new families. It's not that I didn't care there for a while. It's that I care too much.

When I unsubscribed from Rettnet it was after reading an open letter from a father. He was pleading with the members(who had just went through the merger of 2 Rett Syndrome charities to stop fighting.) It was ugly. Rettnet had gone from this place where people could go for online support. For that advice no one else has...Most of us are told when our daughters are diagnosed to get online and find other families.

He was furious with the taunting,the hostility and talked of meeting a new father that weekend. His words had me in a ball on the floor. I rarely posted but I read everything. I too had wondered what had happened and why. I agreed with his words that no new family should come there in the state it was in. He talked about standing on a golf course listening to a new father describe his families journey and the pain they were in. I knew nothing of them but I still cried. I cried at the pain I knew they were feeling and the pain we all relive every time we meet a new family. I decided right then and there that I was just going to stop caring. Focus on my own child..this hurts too much Id tell myself. I didn't reach out to a new family after that. Even if they contacted me. I would kindly answer their questions but I did not want to be any ones shoulder to cry on anymore. It was killing me. I kept in contact with the Rett family and friends I already had but newbies...nope not me thank you.

Over the summer I got more involved in the Rett Syndrome world. Running a website and talking to people. In late summer Rett syndrome started kicking Abby's butt again. Crazy GI issues, tremors,panic attacks and severe gut pain. Long story short we ended up going to New York to the best Rett doc ever....Don't get offended Rett docs. Ive only met 2 but I think she's pretty awesome.

Our trip there is what led me to this family. I had heard of them. I had read their blog a time or two. We had even commented and common friends posts of FB. This family took us in during our trip to save us costs and to have a friendly face in a scary place.

That first night I knew I had made lifelong friends. I don't connect easily. I have a back off kind of attitude and my sense of humor is rude and tasteless. I purposefully keep everyone at arms length. Always have. Even before Rett hit. That's just me. I'm not a hugger or a snuggler. To the delight of many people I know...I'm a favorite target for an ambush group hug...yuk

The second night I was there..after all the appointments you would have thought I came back to home. Dinner waiting. Helped me unwind from the day and gave my daughter a bath for me. Sat up late talking. Stories, how to's, tears and laughter.

I don't know that there has been two days in a row since we haven't talked or emailed since. I had the great honor of being in the audience when this same family went to THE VIEW and spread awareness to the world. I carried their daughter off stage when she got fussy and sang to her in the hall while they completed the interview.

Their daughter is in the throws of regression. It is very hard for everyone. Those of us that have been there ache for this family. I laid awake with the parents all night long while she tossed and turned and screamed and whimpered. I took turns trying to calm her the next day as she tried to crawl out of her own skin and pleaded with those beautiful eyes. Man do I remember the screaming and the pleading. I can remember being so frustrated and angry and hurt that I wanted to die.

This family got their diagnosis like some do before the bad regression hits. This girl was a preemie so they did extra checks. As soon as she accomplished something it was gone and they knew something was up long before I did with Abby. They say that they were just gonna check. They knew there was an issue. The doctors decided to start with the worst of the worst and work their way down. They soon found out their baby had Rett Syndrome......

to be continued....

Dear Diary Blog

2011-02-05T08:41:00.000-08:00

Weird title. huh?

No not really. People that keep up with this blog know that I am all over the place with this space.

It has become my Dear Diary. My someone to talk to.

It started as a way for family overseas in Europe to be able to keep up...hoping they could find a translator and letting them share pictures without me actually having to have them developed and mailed. Technology has made me a very lazy individual.

It turned into a place for me to vent,inform new parents and advocate for Rett Syndrome.

Through this blog I can say things on my mind that the people in my life wont take a minute to listen to.

Strange that I have people on almost every continent that check in here daily. People from England,South Africa,New Zealand and Australia check in here almost daily. I sometimes wonder if I disappoint them when it's just me bitching and crying about the same ole thing over and over.

I say that because I have had 4 parents..each from a different continent take the time to personally email me about Abby this week. To just check on her and offer seizure advice.

I said back in August when my son turned 18 that I would no longer suffer or wonder why my family does not seem to care. I called them each on Monday to tell them of her seizure. I have not heard from any of them since. Not one phone call. Not one email. One sibling lives a mile away. My Mom lives 9 miles away.

When my son had his first seizure my parents and siblings arrived at the hospital half dressed in the middle of the night. The stood vigil with me for weeks. My son is normal. He just had fever seizures.

Every time my son fell off a bike or had to get a stitch they were all there. I don't even call anymore when Abby is in the ER or the Hospital. The last time I did...I cant even recall at this point why we were going but we were rushing her to the ER downtown...my Mom said, " OK Take care."

So... Thank you to my readers. You have become my calm in the storm. My silent friends. That family member to just hold my hand while my heart is breaking.

In this life I have to be the tough guy. The one that takes care of everything and everyone. In this house and through the families I counsel all over the country.

It helps me tremendously to have a place to go and let it out

Abby update.

2011-02-02T19:54:00.000-08:00

Hey all.

Still not exactly sure what is going on and my head is spinning. I am so worked up my muscles are aching and my head is pounding.

Called the Neuro to tell him of the seizure the next am and he put her on a med without even seeing her. I protested and he gave me the due to her having Rett Syndrome speech then said Thank you Maam and was gone.

I haven't gone and picked up the med. First because I don't want to and second because our town is under a weather emergency and it is impossible to get out. My husband was stuck at his job for 3 days.

Yesterday she seemed fine but a little wobbly. Last night when I was bathing her she started to retch and vomit. After I got her out of the tub she was very anxious and lethargic. She clung to me and I had to cradle her tight against me. If I let up on my grip at all she would start to cry.

When we went to bed she started to retch and throw up 5 minutes into her feed. Even though she gets half of her days nutrition and hydration at night I decided to turn off the feed in hopes it would stop the vomiting. It did.

Abby sleeps with her arms crossed across her chest. I slipped my hand under her arms so I could feel her breath or feel her if she started to shake. Her grip was very tight.

At this point I don't know if she had the seizure because she was getting ill or if the illness is the after effects of having the seizure. I tried to call 2 of her doctors today to demand she be seen and we discuss all possibilities and side effects but both offices were closed due to weather.

I am hoping to be able to get her in tomorrow or at least before the weekend. I just cant start her on an every day epilepsy med over one seizure. I am very well aware that seizures are a part of Rett Syndrome but most girls have them by 3 or 4 and she is 6. I have had numerous parents tell me that their daughters don't have seizures unless they have the flu or a fever. Several have also reported only one ever. I just think we should wait,have an emergency med on hand and see what happens.

I am concerned about the extreme nausea and anxiety that she gets when she is nauseous. I would think there is something we could give her for those times besides benedryl...which hasn't been working.

Any advice would be appreciated.

Thanks

The Dreaded S Word.

2011-01-31T14:45:00.000-08:00

Seizures.

There are things that come hand in hand with Rett syndrome. Seizures,breathing problems,sleep disturbances,GI issues and Gtubes. Until last night at 11pm Seizures were something the horrible Rett Monster had spared her from.

We never spoke of the S word. When it did come up we knocked on wood. Every single time.
Last night at 11pm I went into her room and she was in mid seizure. She was in the fetal position,stiff but shaking with her eyes rolled up in her head. She was making this low gurgling/choking sound. I can't even explain my complete heartbreak when I found her. I put my hand on her and told her I was there and called for my son who then went and woke her father. When he came in she was coming out of it. She was trembling and looked dazed and confused.

I was an absolute mess. Until last night I had thought that I had lost the ability to cry. Not an all cried out thing but a medicated thing. I don't get overly emotional. I don't shed tears,even at the most touching of moments. All that went out the window when I was laying on her floor screaming and bawling my eyes out.

I got kicked out of the room. I was furious but knew it was necessary. Rettgirls feed off of their Mommy's and I didn't want her to get upset or go into another one so I cried on the floor in the hallway outside her room until her father came out and told me she was settled. I peeked in and saw her licking her hands and watching her Wiggles.

We immediately texted the Neuro and waited for a response. After a few minutes we talked about weather or not we should take her to the hospital. We decided pretty quickly that the answer was no unless she had another one. I was in no condition and neither was she to go sit in an ER for the rest of the night to have a doctor come in and tell us she has Rett Syndrome. No SH** Sherlock.

I think I finally fell asleep around 4 am and the phone rang at 6am from the Neuro. She is so awesome and so reassuring. We know that this could very well be the start of seizures that come with Rett Syndrome but we are hopeful that it is an isolated case. There are quite a few girls with Rett Syndrome that only have them when they are sick or when a bug is coming on or wearing off. She was sick week before last and I did leave her for 3 days for the first time while I was in New York. It could have very well been that something got missed somewhere. Let's all hope and pray that this is the case.

Thank you to everyone who called,texted and emailed. I really appreciate it.

Terri

New York Pics again. Hopefully more soon

2011-01-31T06:00:00.000-08:00

When we arrived. We were so nervous and excited at the same time and just wanted to get to Stef and Manny

Theses are going in the scrapbook

During the Comedian warmup. It was actually pretty fun. Did I mention Ingrid is a dancing machine! Seriously. My mouth was on the floor!

Monica and Elizabeth

The beginning of the 20 inches of snow we tracked in all day

Girl of the hour. Miss Anna Banana!

So so proud of them!

Awww. Sherri was so super nice!

RSRT and GirlPower staff with the G fam,Jesse and Sherri

Ingrid and Kel after the taping. I was in the hallway with Anna and Whoppi
I love this woman!
Ingrid singing to Anna
Seriously. That is alot of snow!!!!
My love, my life after I got home and she saw me!

The View part 2

2011-01-30T09:00:00.000-08:00

Hello all.
I know everyone is wondering..who,what,how,why? Those questions are simple. The pictures below tell everything. We live,breath,eat and occasionally sleep Rett Syndrome. Our daughters are our hearts,our souls and everything we are. We raise money and spread awareness with every breath and every thought. We do nothing but take care of our girls and each other.
Rett Syndrome has not gotten this kind of media attention...ever. At least not since Julia Roberts was the spokeswoman a decade ago. Our girls...their fight has never had a whole segment. It happened very fast..the decision anyway but the fight to get it on air has been ongoing for a very long time.
We thank God for Manny and Stefanie having the connections to get us there. We are eternally grateful.
We were there because Stef and Manny needed us to be. We were there for our daughters and for their daily fight. We were there because this family was accomplishing something greater than anything we've been able to do with all our might and there was no way..no way we were not going to be a part of it. We were there because we have the absolute honor of knowing and loving this family...

Love ALL these girls and women so much. In case you missed it or live in a part of the world that doesn't have it here it is....The GFam bringing Rett Awareness to the WORLD!

How can you help?

2011-01-29T12:00:00.000-08:00

As you watch and discuss The View over the next few days, please consider donating $10 to research
by texting the word RETT to 20222. It's that easy.
And, afterwards you can share your comments and questions on the RSRT blog at
http://rettsyndrome.wordpress.com
You can also donate anytime on the right sidebar of this page by clicking on donate to research.
Thank you all so much!

The View-by Stefanie

2011-01-28T18:10:00.000-08:00

This is a repost of the blog my girl Stefanie posted after we taped their segment on the view and I wanted to share it with all of you. More pictures to come.

Rett Syndrome on The View
Manny, me, Anna, and Monica Coenraads of the Rett Syndrome Research Trust taped our segment about Rett Syndrome on THE VIEW today! It will air this Friday, Jan. 28, at 11 a.m. The teaser at the start of the show is a beautiful tribute to Manny and his work there, as well as our Anna Banana. Our segment is right after the fashion show segment, I am guessing around 11:30/40.
The producer that produced our segment, Rachel, was fantastic, and has been working on putting this on the show since Manny first approached her with the idea. We kept most of it under wraps for so long because... Well, to be honest, I kept pinching myself because I couldn't believe this was all happening. The last thing we wanted was to disappoint. We needed to accomplish the first task, which was to represent Rett the right way, and second, to share our story, and third, to raise awareness. The cherry on top is to be able to share with the masses that our cure is close!
Manny spearheaded this and because of his dedication, really brought the first national spotlight to Rett Syndrome, ever. Facebook is already aflutter with the Rett community, spreading the word for people to "set your DVR's!" and it is all so very surreal.
I can't wait for you all to see it on Friday!

The hosts were so gracious, and so personable, that sitting on the couch was not near as daunting! We were so ready to share "the Rett story." If someone would have told me that within Anna's first year of her diagnosis we'd be on national television raising awareness and reaching such a vast audience, I would have never believed it. I am so proud of Manny... And I am so very proud of Anna.

After the taping, Anna wanted nothing more but to get out of her dress and into her comfy shirt and leggings. It was a hard day for Anna, who handled the craziness like a champ, but nevertheless she was off of her schedule and out of her comfort zone. I can't tell you how many people came to the guest room after the taping to say hello and meet our rockstar, Anna.

Ingrid, Sherry, Terri, Kelly, Monica, Jesse, Manny, me and Anna
A tremendous blessing (as if this weren't enough!) was when we found out that Ingrid Harding, co-founder of RSRT and founder of Girl Power 2 Cure, and fellow Rett mama and friend (so many titles!), could come for the taping, as well as Terri, of GP2C and friend, and Kelly, of GP2C and friend. These women are amazing. No better description. Amazing.

Girl Power!
After the show, we headed over to Peter Hurley's studios for a photo shoot and to have some fun! Peter and Ingrid have been friends since they were 7, and when she told him she was coming to New York for a visit, where he now works and lives, he asked her to bring her friends over and take some photos. It was a blast!
This may be the cheesiest line I have ever written, but, today, my cup runneth over.

It's ok. Kinda. ok not

2011-01-24T15:43:00.000-08:00

I guess it wasn't really fair for those that keep up with Abby and myself to post such a vague stay tuned like I did the other day. I have received many emails.

In the Rett world...a place I dont want to live in anymore, we Moms have what we comically refer to as quarterly breakdowns. Everything is one step forward, 3 or 4 back.

I think after the high of New York and everything we learned there then coming home...and she still has Rett Syndrome. Every day. It never goes away. I advocate all day long every single day..and she still can't talk. She is still weak. She still can't breath right. 4 years ago they promised our cure. 4 short months after her diagnosis when I was still in the throws of the greatest pain in my life we had good news. They were gonna fix her.....4 years later and I am raising a 6 year old toddler.

I am exhausted. EXHAUSTED! Not just physically. I am mentally and spiritually losing it. I had a friend tell me the other day that she missed Terri. She told me that every time there is a set back or a disappointment that part of me goes away and that's she's afraid that some time soon there wont be any of me left in there. Just a smiling robot that gives meds and changes diapers. It was a blow. A hard one to take. Cause it's true. And she is one of the few people in the world brave enough to tell me stuff like that.

I just feel like I have to do something! But I dont know what. 3 years without a car is about half of it. I am stuck in this house...buttwiping robot that I am. I dont get out for anything and the last few weeks I cant even go to church because Abby's Dad has our only vehicle and is on call in winter weather.

I found out in some states they have what's called an income waiver for Medicaid. Those would be the states more concerned with childrens health than building bridges in the same place every few years. Or giving themselves raises and driving Bentleys. If I could find proper care and proper work hours I could take care of my family again. I spent too many years as a HR and Office manager to be a diaper manager. It's boring and slow and I spend 9 hours a day without her. I should be able to work.

Our housing situation is needing a change. I dont like change. After the end of an average day it is back breaking for me to carry her upstairs to the bath and then to bed. I just wanna lay on her floor when I'm done. Seriously we need a one floor house or duplex. Cant stand to have people above me. Considering we barely get by on the cheap rent we pay now I see no way to rectify it and it frustrates me. Another thing I cant fix. We pay 600 a month with gas,water and trash paid. How in the world could we find something like that?

Seriously, anyone know?

I have other emotional things going on that I cant share. Things I need to get me head and heart around. My son will graduate and leave soon...ok he says he's leaving. Who can blame him? But there's more

At some point I need to MAKE things get better...I just dont know how,where to start. Not just Abby but our whole way of life needs to change and I may need to hurt people to make that happen and I cant bear it. Yelling ,screaming and stomping my feet for years has gotten me no where. Action needs to come soon...or the lottery...or a miracle..or to find out this was just a really really long really bad dream.

11 days

2011-01-21T08:22:00.000-08:00

Wow 11 days. That's how long it has been since I posted a blog.

Alot has been going on here and sitting down to update or let it out has not really been possible.

When I find myself being really down I try not to blog because I hate reading it later. I want to be a positive person.

So for now I'm going to leave it at that....

Please check back on occasion. I hope to be able to keep up sometime next week.

Take Care

Terri

Trapped

2011-01-10T15:29:00.000-08:00

One thing we as Rett parents scream about the most is that our girls are trapped in there. In little bodies that don't work. We spend the majority of our time trying to convince the world of it. In between sleepless nights,diaper changing,baths,wrestling with providing care for a child that can do nothing for herself. It is a 24 hour a day thankless,payless job.

Seriously, no one ever says thank you or hands you a paycheck. Vacation? Nada. Benefits? That's funny. The only benefit I have is looking into my own eyes each day at a person who sees me as her world. The love that comes from that is unexplainable and worth more than any paycheck. Although a paycheck would be nice.

In most cases RettMoms are not just everything to that one little child. We are also Moms to other children..although less than we were before. A guilt we have to live with..hoping that one day they will understand and forgive. We are wives..although I personally suck at that one..no energy..no time. We are friends and confidants to other parents that we do not know. For those few of us that actually get to meet there is an instant bond...barring the occasional weirdo. Everyone knows someone who is a strange one. Rettland is not immune. In fact I'm kind of sure that we're all just a bit loony..some of us just choose to take their lunacy to an all new extreme. You know who you are.:)~

In those few moments each day where I am not elbow high in meds,feeding bags and other peoples feces I make an attempt to make a difference. I think out of that need to fix it and knowing I cant I reach out and support other families. The only thing I can do is try to make someone else feel better. Weather it be words on a blog, phone calls in the middle of the night from a Mom who is losing it or giving advice to those who have nowhere to go and no idea where to begin. It is my therapy and my reward in a world I have no control over.

Trapped? Yes. Rett Syndrome has trapped my whole world. It trapped my daughter in a world she can't escape from. It took away my ability to provide for my family..although the Government and insurance helps with that. Not by actually helping but by having rules about pre-existing conditions and outrageous rates for those who have them. The Government is nice enough to give her Medicaid. Although it comes with rules like..we can only own one car, For every dollar we make over our standard income they take away 50 cents from Abby's benefit amount. Once that amount is taken to 0.00 they take her Medicaid. So I could leave the house and work.Providing I could find a job that would let me leave 4-5 times a week for the whole day or at least half of it. Then of course if they paid me then that would take away the one thing that feeds her,medicates her, pays for her equipment rental and her diapers. I suppose I could work for free if they would give me insurance,,kind of what I'm doing now but I would be doing it without being able to care for her. Trapped.

This week has worn me down. The Scoliosis,The fight with the school over therapies and providing eye gaze options for her. The tears nightly over why the school doesn't have to provide any more therapy than will what will enable her to manipulate her environment...that fight is just uncalled for. God forbid we try to make this fragile little child stronger or more able. Lets just do the minimum to collect our paychecks. Who gives a crap about the kids?

The last few days, OK 5 or 6 days Abby has been having some severe GI issues as far as pain go. She screams and bites herself. She pulls my hair and bites me. I have to comfort her to sleep with my arm stroking her but my head far enough away to keep from getting attacked. I am weary. I am exhausted. I am trapped.

Rett Syndrome SUCKS!

2011-01-05T06:58:00.000-08:00

And so does everything that comes with it.

I have been talking to other Rettmoms the last few days because if nothing else,all we have is each other. They are the only ones who get it.

It seems like every single time things start to look up Rett Syndrome rears it's ugly head and presents itself again. With force. If it was a physical thing I could grab a hold of I would so kick it's ass from here to the year 3000.

I know most people who know our situation know that Rett robbed us of all our hopes and dreams for our daughter. It took away her speech, her ability to move on her own and a slew of other things. I am going to borrow from another Mom to give you a little idea of what Abby deals with and some of what Rett Syndrome has given her. It is so much more than just the loss of speech and motor function. Because of Rett Syndrome Abby now deals with:

Apraxia
Hypotonia
Aerophagia
Apnea
Hypopnea
screaming fits and panic attacks
inconsolable crying
non verbal
coordination problems
infant like walk and gait with interrupted periods of backward walking
Wears Afo's or braces on her feet
difficulty swallowing
needs feeding tube for hydration and nutrition
microcephaly (small head)
teeth grinding
tremors
spastic hand movements
poor sleep,sleep disturbances,night terrors
GI issues (poor weight gain, constipation, reflux, etc.)
Scoliosis

That's alot of stuff for a little girl.

So here's my latest rant.....

Abby has scoliosis. Sucks I know. When we first discovered it she was at a 15 degree s curve affecting lumbars 1-4. We got a high as 20 degrees but after many therapies went down to 17 degrees. In April we went to the Ortho and got the,"Well you know Scoliosis comes with Rett Syndrome speech. FREAKEN hate hate that one. What I hear is,' tough shit sucks for you' whenever anyone says that. The doc then told us that if it got above 25% he would do what is called Vertebral Body Stapling. He explained that they would basically go in and put 2 staples next to the curve which would force her spine to grow straight as she grows.

On Monday we went back in for our 9 month check up. I sat there in the waiting room then in the clinic room for an hour each before they came in and had us go do x-rays. We did them and I was just so sure he was gonna tell me that she was down to 15 degrees or maybe even less. He came in and said she was at 34 Degrees. 34? What? Room was spinning. Tears flowing...Rett Speech babbling...

He started talking rods. I asked about the stapling. He looked at me like I was crazy and said he doesn't do that on children this young and that it is experimental. He sat there showing me xrays. Im not an expert but I just dont think they are accurate. She is obviously sitting on her right buttcheek, her head is moving and her hips look way out of whack. How can they look at that and compare it to the last one?

Oh man I felt like I was gonna throw up. He kept talking rods. I asked him if she would be able to bend and walk and play and he said there was no guarantee. I am just sick. They have to be wrong right?

So I get home and find the last xrays and sitting right there signed by this doctor is a release form telling me to look up and research the body stapling for over 25 percent signed in April!

So here's the x-rays. Am I crazy?

April 10

Jan 11

Happy New Year. Im back

2011-01-01T13:37:00.001-08:00

Hello all.

The last month has been absolute insanity around here.

We had our trip to New York. I made new friends. I got to see my girl Kelley twice in a month and 3 times this fall after not seeing her for 20 years. So glad to have her back in my life.

I opened up a new can of worms at school since we learned that Abby can use an eye gaze device. A fight I dread but know I must do for her. We have another IEP meeting this next week due to my pain in the buttness..another thing I dread. The thought of sitting in a room full of people rolling their eyes at me while they feel so sad and think I am so pathetic for thinking my daughter is in there makes my heart ache and my stomach turn.

I don't know why I can't get it across to them. I know she is disabled. I know she is language impaired (Thanks for that one Ingrid.) I, in no way, think I have a Steven Hawkins in there. I do know I have a 6 year old little girl who is trapped in a body who's brain doesn't tell her body how or when to move. The spark doesn't fire. Doesn't mean the ignition isn't there. She has the starter. It just won't turn over and run the rest of her.

They know she looks at the answers. They know she makes choices with her eyes but insist she choose with her hands. Little twisted hands that cannot grasp or point. I don't know how to make them understand that she wants those little hands to work. That she still needs the therapy to try to get her brain to fire to her body. Weather or not it will ever work is any ones guess. She still needs the therapy to get those Neurons firing. We do however, need to give her tools she can use now. Just because she has no physical voice does not mean she cannot or does not have the right to communicate.

I think they only see the child who stares into their eyes...searching. Wondering why they can't hear what she is saying. She can hear it in her head. Why can't they?

They see a child who is clumbsy and tires easily. They see a child who is 6 years old and still walks like an infant who is taking her first steps. Sometimes I feel like I can jump up and down and scream and rant...and nobody hears me either. I can't imagine how it must be for our girls with Rett Syndrome.

Pray for us with this one. It hurts.

We had an incredible Christmas. Incredible. My children are spoiled and loved and we are so grateful.

On December 23rd Abby took unassisted steps. Since her g-tube surgery in 09 her walking skills have all but vanished. She will take a few back and forth steps within reach of her bench but nothing much outside of that. You have to hold her hand or sometimes her hand and her back and she will sometimes take you down with her. She seems more sure of herself. On the 23rd I had sat her on the couch because I was busy and quite frankly getting a little irritated with her neediness...don't judge..you don't live here. I took 3 steps away and bent over to pick up a toy and had her face in my butt. She had stood up off the couch and walked to me. Oh man. Incredible.

The next day I put her on the couch as I was preparing for Santa and grabbed the camera.......

It's been a long December

2010-12-18T15:55:00.000-08:00

Wow what a month!

So much has happened...financially,emotionally,psychologically. My head has been spinning.

No, we didn't come into money...don't we wish. But we did have some awesome things happen this month that helped us out tremendously.

We had a friend arrange for us to be able to go to the Premier Rett Syndrome Clinic in the country.

We had a Doctor donate her time and services to Abby. Not only did we receive awesome medical care for her we made a friend. A friend who cares and who just happens to be a Rett Syndrome Neurologist! How cool is that?

We have finally started Abby on the Anti Anxiety meds she needs. We are praying that they help her. She is still in the adjustment phase so please keep her in your prayers!

We had a Rett family open their home to strangers so they could receive the best care possible. Again I have made friends. Just 2 short days and I'm pretty sure this lady was somehow separated from me at birth...12 years later. What did she call it?..A brother from another mother. I love you Louise!

We found out that our Abby is in there! Of course I knew but after stomping my feet and stepping on toes for so long even I was beginning to think that it was just me..me being her Mom. Seeing things others never would as I had been told.

Having a child that was once mobile and normal and perfect..who could talk, play, play pretend, eat, feed herself....then have that all stolen in the night.. It is indescribable. Having sat in that office and having her prove that that brain of hers works just fine, that she can, she CAN talk with her eyes. One day we will get her brain to talk to her body again! Hopefully before this Rett Monster takes her from us. Like it has so many poor little Angels this year.

We discovered that we are making a difference. There are people all over the world that read my words,take my advice,use us for examples and watch and learn from Abby's videos. I had no idea and I'm thrilled that I can help from my little desk in the corner of my kitchen.

We had a couple from South Africa donate most of the funds needed to get Abby her iPad. We hope to purchase it soon after Christmas with gift cards she will receive from family. Thank you Cathy and family!

We had people step forward and provide Christmas for us without being asked and out of love. For this I am eternally grateful. Christmas is always such a high stress time of year and knowing that these people helped us because they care and they love us is amazing. I am not one to ever ask. I do not stand in line for vouchers or handouts and I never will. I somehow would have found a way...but it never even became an issue because of these folks. We love you too!!

This week we found out that a My Tobii rep will be flying in to try Abby on the device to get the ball rolling so she can communicate. These devices are beyond expensive and a huge battle with the schools and the insurance. We are ready. I can't imagine what it took to get someone to come here because there is no rep in the area. Someone pulled some major strings I'm sure. Thank you!

We are hoping to get the North Kansas City School District on board with this. They do admit that eye gaze technology is new to them. I'm hoping we can open doors for all children trapped in their bodies!

All our love

Terri and Abby

Our favorite Therapy!

2010-12-14T16:49:00.000-08:00

Back to my recommendations for therapy for Rett Syndrome.

We have been doing Water Therapy with our OTR/L since Abby was in early intervention. When we transitioned out to the school district they did not provide it and Medicaid won't pay for it..go figure..so we decided to start doing this one out of pocket. We really felt it was too important to give up. We eventually found Autism funding that would pay for 2 sessions a month. Down from our once a week but we take what we can get.

Technically Water therapy is considered OT or Occupational therapy...before anyone bites my head off that's what I have been told. It may be categorized different for you in your area.

What we love about it is that it is so much more than that. Water therapy helps her with body awareness,balance,coordination. It is Physical therapy and Occupational therapy all rolled into one and she LOVES it!

They call our girls Silent Angels and anyone that knows my Abby knows her Silent is broken. She babbles,squeals and sings constantly in her own little language. I often have people ask if she had, "Swim today?" after the pool because her little mouth goes 90-nothing. She is so happy and so verbal.

I have 2 videos today. The first shows Abby doing OT in the water playing catch with a ball.

The second shows her PT part of the Therapy where she walks around the shallow end with weights on her legs. You can tell the awareness it gives her at the end by how fast she climbs the stairs with the weights on!

30 years ago this day

2010-12-08T07:28:00.000-08:00

This picture was taken by Annie Lebowitz. December 8th 1980. The morning John Lennon was killed.

John Lennon

Genius

Feeling kind of old today remembering this day. Granted I was 10 years old the day Mark David Chapman shot John Lennon in cold blood. Just a few hours after he had politely asked for his autograph.

I will tell this story as I remember it. My mother and stepfather were in the living room watching a Loretta Lynn special on HBO. We were all pretty excited about this new thing called cable and the living room was the only room that had it. Me, my baby brother and 2 stepbrothers were watching The Carol Burnett Show in the stepbrothers bedroom sitting on the floor. A news anchor interrupted and reported that John Lennon had been shot 5 times in the back by a fan and had been pronounced dead. The anchor had tears in his eyes. It was a Monday.

I walked out into the living room to tell my parents...as they were watching HBO it was not interrupted so they did not know. My stepfather was a musician...and still is and had taught me to play Let It Be on the piano...still the only song I am able to play.

They asked me what I wanted and being 10 I said, "Someone shot John Lennon 5 times in the back. He's dead." My mother screamed and and asked me why I would say that as my stepfather hurried to change the channel. He was shaking so hard he couldn't function. They ran to the back bedroom to see the news on the boys tv. The one that we changed the channels with with a pair of needle nose pliers because the knob had fallen off.

The next few week were filled with stories of Lennon and the Beatles. Although we as kids knew The Beatles through the music in our home we had no idea at that time of the history and the impact.

The following weekend there was a memorial in a nearby park. I can remember driving there in our old, beat up truck. The kids always sat in the back of the truck...it was California after all.
The traffic for this event was something like trying to get into the Super Bowl. We lit candles, we sang songs and we went through tent after tent of memorials, pictures and memorabilia.

In the weeks and months after we learned the song Imagine and I remember it being the first time a song and lyrics meant anything to me. My parents bought me Double Fantasy and The Beatles White Album for my 11th birthday a month later.

John Lennons murder for me was the Generations before John F Kennedy. 30 years later I can still remember every detail. Of course now we know there was 5 shots. 4 hit but their were 7 wounds total.

The official recount of the story can be found by clicking HERE

Some of my favorite John Lennon Quotes and Song Lyrics.

A dream you dream alone is only a dream. A dream you dream together is reality.

All we are saying is give peace a chance.

All you need is love.

As usual, there is a great woman behind every idiot.

Everybody loves you when you're six foot in the ground.

Everything is clearer when you're in love.

Guilt for being rich, and guilt thinking that perhaps love and peace isn't enough and you have to go and get shot or something.

He didn't come out of my belly, but my God, I've made his bones, because I've attended to every meal, and how he sleeps, and the fact that he swims like a fish because I took him to the ocean. I'm so proud of all those things. But he is my biggest pride.

I believe in everything until it's disproved. So I believe in fairies, the myths, dragons. It all exists, even if it's in your mind. Who's to say that dreams and nightmares aren't as real as the here and now?

I don't believe in killing whatever the reason!

If everyone demanded peace instead of another television set, then there'd be peace.

If someone thinks that love and peace is a cliche that must have been left behind in the Sixties, that's his problem. Love and peace are eternal.

Imagine all the people living life in peace. You may say I'm a dreamer, but I'm not the only one. I hope someday you'll join us, and the world will be as one.

Life is what happens while you are busy making other plans.

Love is the answer, and you know that for sure; Love is a flower, you've got to let it grow.

Music is everybody's possession. It's only publishers who think that people own it.

My role in society, or any artist's or poet's role, is to try and express what we all feel. Not to tell people how to feel. Not as a preacher, not as a leader, but as a reflection of us all.

Reality leaves a lot to the imagination.

Surrealism had a great effect on me because then I realised that the imagery in my mind wasn't insanity. Surrealism to me is reality.

The more I see the less I know for sure.

There's nothing you can know that isn't known.

Time you enjoy wasting, was not wasted.

We've got this gift of love, but love is like a precious plant. You can't just accept it and leave it in the cupboard or just think it's going to get on by itself. You've got to keep watering it. You've got to really look after it and nurture it.

When you're drowning, you don't say 'I would be incredibly pleased if someone would have the foresight to notice me drowning and come and help me,' you just scream.

New York Pics

2010-12-07T06:51:00.001-08:00

Here are our pics from New York..Or what I have so far. I plan on stealing some more from a new found friend when she gets home to Barbaddos!. Since I fail at loading in order this is all pretty much backwards. Us outside the Hospital after the visits

This ones for Orvin

No picture could do this tree at the Museum justice. Absolutely beautiful

Painting with my girl at the Museum

I loved this!

Lighting is horrible for pics but we got a copy of this printed to take home

Stunning

Evil but incredible

The statues were amazing

My favorite:)

82nd Street. We found a place to park right across from this for free. Beats paying 36.00 per hour!

Czech Flag

Bloomies as we flew by at high speed while playing Frogger!

I wish I could have taken a pic of this whole Building. Man that Old Broad was loaded!

Some Skyscraper.

The Metlife Building. That lower green topped building in front of it is also part of the Helmsley Building

Park Ave

See? Told ya!

Entering Harlem..which is actually before Park but I don't know how to load!

Best night view I got from Astoria before the near mugging

New York-Uh Wow!

2010-12-06T15:28:00.000-08:00

As you know from the post below we went to New York this past weekend and Holy Smokes! Although I was nervous I had no idea what I was getting into!

I spent my childhood and late teenage years in LA and OC California so it's not like I've never been out of the pasture. I grew up in the 70's and 80's and always had this mindset that NY was full of mean,hateful people that were rude,selfish,obnoxious and self absorbed. This could not be further from the truth with what we experienced there.

It's not like I didn't run into any of it of it though. But the incidents were isolated.

When we stepped off the plane in through the gate at La Guarida a lady came right up to us and asked where we needed to go and escorted us to the curbside pick up.

Another RettMom picked us up at curbside and off we went. The one thing that wasn't exactly my favorite about New York was the traffic. Seriously, 24 hours a day it was like playing Extreme Frogger on PCP. No lanes, no turn signals. Absolute insanity on the roads and that was just in Queens.

We stopped in Astoria Park to get a view of the skyline and take a few pics..they really didn't turn out that great and I had only taken a few when a guy road past me on a bike and the hairs on the back of my neck stood up and Stefanie..the RettMom who hosted us yelled,"Get in the car!" He had dumped his bike and was coming towards me. I jumped in and we sped away. So besides the near mugging 10 minutes after I got there it wasn't all that bad!

We stayed up for a few hours and talked and laughed and became instant friends. What an awesome family to take in strangers like that. We had talked before on the Internet and on the phone but to take us in the way they did...forever grateful.

The next morning after about 4 hours sleep I stepped out on the front porch and was immediately greeted by the Sanitation worker with a ,"How you doin Sweetheart?" and a "You have a nice day there."

I'm suck a redneck that I ran in all excited because the Trashman said Hi. They got a good laugh at that one!

My girlfriend from High School that lives on Long Island soon arrived to be our personal assistant,caregiver and chauffeur for the day. She was a pro and I would have been lost without her. Thank you so much Kelley. I love you woman!

Yesterday you got the story from the hospital so I'll pick up from there. I was told that I couldn't come home without having a Hot Dog from a street vendor so I was hoping we could find one. Not a problem since there is about 3 on each side of the street on almost every block. So I had my first Dirty Water War Dog. I was starving. Gotta say not my favorite. I'll order differently next time. Onions on your dog here are onions. There they come in this tomato ketchup watery base. Kinda yukky.

Everyone on the street or sidewalk parted for the wheel chair and they opened doors for us. I don't even get that here. If you go into a place with a wheel chair you are escorted the moment you walk in the door. No questions, no eye rolling. I told my friend that I felt like a celebrity with the treatment we got.

The Metropolitan Museum of Art was next on our list. We didn't have time to go back to Queens so made plans to meet up with our host family at the Museum. We had about an hour and a half to spare so we took a little tour.

We drove through the Bronx and Harlem on our way to Manhattan and took a drive down Park Avenue,5th and Madison. There is no wonder people in New York walk so much. The people on the roads were INSANE and I'm pretty sure most of them couldn't have possibly ever taken a drivers test.

If the police actually ticketed every driver that didn't use a turn signal, cut someone off or every person that jay walked I'm pretty sure we could settle the National Deficit in a week or so. So not kidding.

We were treated to what is called Rett at the Met. An evening where Rett families get a private guided tour and dinner afterwards. We met families that I have talked to or seen pictures of for years. We were treated like royalty. That place was incredible. The way their staff attended to us was amazing and so personal. He saw so many things and if alone I would have spent the entire day there. We even saw Hugh Jackman! Pretty cool! If I could I would go there once a week if I lived in New York and disappear into light and art and color and history. Unforgettable! The only thing missing was my new found sister Stefanie who wasn't able to make it because her daughter was ill.

The next morning we had a flight out at 1120. I wanted to get there pretty early because I heard that LaGuardia was a nightmare. We woke up late and pretty much had to stuff bags with what would fit and haul butt to the airport. I was sure we were going to miss our plane and my stress level was through the roof!

When I lifted Abby out of the car and into her wheelchair a security guard met me at the curb and asked what airline. He then took us to the front of the line at the Frontier Airlines desk and they moved us to the front row immediately. The same guard then told us to follow him as he walked us through security to the front of the line. That line had to be 2 blocks long. Everyone parted and not one person said a thing. I was allowed to stay with my daughter while my bags went through and her chair was patted down. They were so careful and attentive with her. I on the other hand got the full patdown you've been hearing about on the news. They were gentle and kind about it but I had not gone through the xray so it was procedure. The security guard waited for us so he could escort us to our gate. He told the gate that we would need assistance on and off the plane and shook my hand and quietly walked away.

We were the first to board and the Stewardesses carried our bags, took care of the chair and asked if we were comfortable and had everything we needed before they let anyone else board. I was so shocked. This is the way people should be treated. Everywhere. I was amazed.

When we got off the plane they asked us to wait for others to deplane so as not to feel rushed. When we got off there were 3 people waiting from Frontier waiting. One with the chair and 2 to help with the bags and anything else we may have needed. When I put Abby in the chair I turned to get my bags to find the Pilot was holding all 4 of them for us. THE PILOT! He handed them to us with a smile and turned back to his plane. Incredible!

The people from Frontier escorted us clear out of the gate to the waiting are and asked if their was anything else we needed before they turned away. I will never fly another airline! Absolutely the best service ever!

And to top it all off. Someone else paid for our tickets with their airline miles. When the airline called to confirm because they were in someone elses names and heard our story they comped the tickets. Round trip, non stop and they comped them!

Thank you New York, The Metropolitan Museum of Art and Frontier Airlines for making this a trip we will never forget!

Abby , Me and Reality

2010-12-05T09:08:00.000-08:00

Wow what a weekend. Just be prepared that this post may go on forever.

Since March the Rett Monster has been rearing it's ugly head around here and we have been putting Abby through so many tests and procedures.

Her stomach was the first issue. Abby has some pretty severe GI issues that are common to Rett...The one thing I think we, as Rett parents hate to hear is that,"It's Rett.". We don't care if it's Rett. Fix it. Now! I think...no I really feel that if a girl has Rett so many things are poo'd off or ignored that could be dealt with and fixed. These are the same Dr's that diagnosed our daughters and tell us to take them home and make them comfortable. When we bring them back in they treat us as if we are bringing in that lame dog we picked up at the pound. We knew it would have problems. Why do we keep bothering them with this?

I will say that we don't get this from Abby's Pediatrician. Not at all. But we do get it from the specialists here. I think the Neuro knows Rett but is basically an Epilepsy doc. ER's,Ortho,Surgeons,GI's. just don't know Rett and between us and her Ped and a friend we came to the realization that she needed and the Pediatrician needed a Rett doctor for Abby.

In the last few months Abby had also started having sleep issues again, She was having tremors,night terrors,waking in the night. She was having severe pain and panic attacks during the day. I have always fought off any kind of neurological medicine or anxiety medicine for several reasons. First out of the fight I have in me that I can help her. I can fix it. I almost killed her with that when she stopped eating. I sometimes forget that I am fighting an invisible monster here. Rett Moms cant kiss the boo boo's and send them on their way. The hurt that comes from this is unimaginable for those who don't deal with it.

Her breathing issues needed to be addressed. The Apraxia that stops her from taking that next breath can be anxiety induced too and I needed to face that. Having to leave her at home or not being able to participate in any kind of life because it would be too stressful for her was letting Rett win and I can't do that anymore. I needed to get off my Homeopathic hippie bandwagon because I wasn't helping her and that is my ONLY mission in life.

Through a friend I was introduced to a Doctor in New York. Her name is Aleksandra Djukic. It started with my friend emailing her a question for me when a GI here put Abby on a Neuropathy med to help with her GI issues. Within a few days we had plans to come to New York to see her and the paperwork and record gathering began.

A few days before the appointment I sent Dr Djukic (Sasha) a link to this blog and Abby's videos. She sent a little note back that she had seen these videos before and couldn't wait to meet "The Princess"

I will save the what I think about New York blog for later but now on to Sasha.

To say this woman is amazing would be the understatement of the millennium. We were there about 15 seconds when she came rushing out to the waiting area to greet Abby. She talked to Abby, she hugged her, she kissed her. When we went back to the office she explained to us that she had been using Abby's videos in her lectures about how intelligent Rettgirls are for 2 years. She hadn't realized that this was the same child she was about to see until a few days before we arrived. I was stunned.

She explained Rett to us in a way that even I never actually understood. She explained treatment and the coming cure in a way that I never understood. Our cure is coming! I had always been skeptical. Hopeful but careful. It is coming!

She tested Abby on a My Tobii device. I had to put my face in the back of Abby's head so I didn't see anything that was going on until I got the video by email when I got home. My daughter is brilliant. Her brain works so much faster than I thought it did. Her memory and concentration and comprehension are there. Right there! I saw things that I think Sasha didn't even see. When she would put Dora on the screen and put a different picture up Abby would look where Dora was before...she is her favorite character. I could go on all day about this one. I have never really fought for something like a My Tobii before because they are so incredibly expensive and I am apprehensive about anything that I think she can't use or would fail at. Abby must have this device and the fight is on!

We decided to put Abby on an Anti Anxiety/Depression med. It's time. I myself have suffered from depression and anxiety since a child and I don't have Rett. Meds help and I should have realized that a long time ago. I have problems living in my own brain and body and I have a voice and a body that works! Imagine how my Abby must feel!

We doubled her Melatonin for sleep and may even triple it. Abby slept better last night than she has in 2 years.

We are taking her off Miralax and putting her on a gentle baby motility drug because Abby's little body obviously can't handle Miralax.

We are changing up her therapies. If I can't get more at school I will do it myself at home. Use it or loose it. Neurons that fire together grow together, branch and work!

Now for the pics. I could have done the standard few pics and a sentence blog but it would have never done this visit,this doctor and her hospital justice. I am forever grateful for everyone that made this happen!

Me and Abby outside of Montefiore Hospital. That's us to the left!

Meeting the best Rett Doctor in the world!

One posed pic and off to work!
Studly Mcmuffin pic walking with minimal assist!

Sasha is so proud of her Princess!

Wow! So happy! Off for a tour of Manhattan then dinner with friends and a tour of the Museum of Art!

Stay tuned!

Speech and Communication Therapy in Rett Syndrome

2010-11-26T17:27:00.000-08:00

Speech and Communication therapy is sometimes a hard one for parents of children with Rett Syndrome to grasp.
I can remember my daughter being 3 years old and not understanding why speech therapy was necessary. She couldn't talk after all and more than likely wasn't going to be able to. Speech therapy isn't what you would think of. When I was a kid I had to go to speech therapy because my R's were W's. Water was Rater and Rain was Wain.
Speech therapy is more like Communication therapy. It's very easy to give up on your girl. Please don't. We practice at home as well as school. We have a book of choices for her to slap at as well as video flashcards,books and more.
Here are two videos taken about a year or so ago. I tried to take video of her the last few days and she absolutely will not cooperate if it is just me and her so I have to take a back seat role. You will have to pay attention to HOW your own daughter communicates. Abby will sometimes hit a picture right away..sometimes she looks at it at sometimes she will face point.
For you newbies I highly recommend you checking into literature by Linda Burkhart to understand your child.
You can find an excellent paper at RettGirl.org and clicking on Resources at the top. It will take you to a wealth of information.
Click on
Multi-Modal Communication Strategies for
Children Who have Rett Syndrome
Linda J. Burkhart

I sometimes struggled to believe my own child could communicate until I read this paper and it was like she was talking about my Abby. It's 10 pages long and you wont be able to put it down. I honestly believe no teacher or therapist should work with a Rett Girl without reading it. Here is page 1 only..

Adopt these Beliefs:
• Everyone Communicates
• Communication Begins with Intent
• Getting from Intent to Action is What is Difficult for Girls with Rett
Syndrome
• The result of the effort, must be worth the effort
Apraxia
• Girls with Rett Syndrome’s most profound disability is Apraxia or Dyspraxia
• Apraxia is the inability to carry out a cognitive intent - The child intends to
move a particular way, but the neurological signal doesn’t reliably get to the
right muscles to move them consistently
• Some motor skills remain intact - but only when triggered with an automatic
event that doesn’t require forethought or cortical intent. This can be
confusing and may be interpreted by others as stubbornness, because it
seems that the child can perform a task some of the time. However, the
harder the child tries, the harder it is for her to perform it on demand.
• Sometimes the child seems to need to move away before moving toward what
she intends. If you don’t wait for the child to finish the intent, it may
appear that she is rejecting or responding incorrectly, when in reality she
hasn’t finished her movement yet
• Delayed processing from intent to movement is typical for these girls
• Apraxia also affects muscles that control speech
• Apraxia affects other communication skills - including ability to use some
non-verbal social signals and sustained eye contact
• May make it difficult to maintain eye gaze and move eyes between a desired
object and a person who might be able to retrieve the object
• Waiting for a response with patient anticipation is critical to success. The
child learns which people will likely take the time to wait for her, so she can
decide if it is worth her effort
• Sometimes talking the girl through the motor movements and /or modeling
them can be helpful.
Linda J. Burkhart linda@Lindaburkhart.com http://www.Lburkhart.com p. 1

Enjoy the videos and let me know if you have any questions.

Reading and identifying

Colors and Shapes