Saturday, December 18, 2010

It's been a long December



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

Tuesday, December 14, 2010

Our favorite Therapy!

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!

Wednesday, December 8, 2010

30 years ago this day

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.

Tuesday, December 7, 2010

New York Pics

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

Monday, December 6, 2010

New York-Uh Wow!

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!

Sunday, December 5, 2010

Abby , Me and Reality

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!