Hardest Decision in a while

Today we had Abby's yearly IEP...My heart hurts.

There are things we read as Rett parents. Things that are said..that we REFUSE to listen to. I have been fighting this battle for 5 years now.

They being the Doctors,Educators,Caseworkers,Authors...all at some point have or will tell us that our girls are Profoundly Mentally Retarded. Maybe not always to our face. Sometimes we find it in a report, a prescription or hear it in passing.

We read it in medical journals...God writing this...I think I may vomit.

This is the background to why we are so sensitive to the word in any way.

Yestaerday I felt as if I was told my child knows nothing....they didn't say it in that way..it was all stats and data days..choice of 2..less than 50 %

So...Last year at this time..Abby started seizure meds. When she did, what was left of my little girl slowly went away. She spends most of her days in a daze...but only at school. At the last IEP meeting I suggested half days and I upset her teacher so much that I dropped it.

A few months ago the observations of others really started to get to me. The notes every day that she slept from the time she got to school till darn near the end got to me. I just kept thinking...If they don't get her...If they don't believe in her. If they can't read her or give her the tools she needs, or adapt to her needs...I may have to pull her.

In the last week I got a report that she can only find her name about half the time..a little less actually. She can't identify numbers. She doesn't know shapes or colors. All things I can get her to do at home. I'm not gonna lie. She doesn't always perform for me. If she can't do it one day I try a different way the next. She has days where her little body won't do anything she wants it to. AND quite frankly...if someone asked me basic shapes,colors and numbers every day for 5 years...I think Id shut down on them too.

I believe that is what she is doing. She doesn't sleep at home. She doesn't nap during the day. You put her in school and she sleeps all day. I really think she is just turning off.

We thought...and it could be a possibility that the bus ride for an hour is putting her to sleep. My problem here is that when I take her anywhere she falls asleep almost every time. But when it's time to get out of the car and get moving she does. I have no problems.

If she is asleep when she gets home on the bus she is wide awake before we get in the house. Giggling and ready to go.

So....I pulled her from school. Not completely for now but we are moving to half days as soon as they can get a bus scheduled for her.

I have done everything I can. I will admit that I told myself going in today that if all I heard was that she sleeps,sleeps, sleeps then I was gonna pull the half day card. When I was handed a report that Abby performs at a 0-18 month level...and even those scores we're pretty low...it was all I could do to maintain. I had promised the teacher that I would not be an asshole this time and I wasn't. I didn't expect that report.

So here we are...Afternoon therapies will be moved to before school when possible. The fight for the My Tobii is on!My daughter talks with her eyes. She looks at what she wants. She can't talk...she can't touch...she can't sign. I have to help her. If I had a house I'd mortgage it to get her an eye gaze speech generator.

We are on the procedural list here in Missouri for those who don't have 20 thousand or so in their pocket. I have heard it takes years. I hope not. More than anything I hope not. At the end of most weeks I don't have 20 dollars so any suggestions for a fundraising campaign would be greatly appreciated.

PS:;To the IEP team...I know that my blog is looked at after IEP's and I get that. I see and hope for more in my child than you will ever be capable of. It is totally my intention to get her into a rhythm where she can function for all of us. My heart hurts more than I can express here. I understand your rules and I wish more than anything that you would let me come in there and volunteer. Take however long it takes to show you my Abby. No pay...no nothing. Just me helping you help her, I may not have any license or degree but I AM her expert.
Am I aware that she is cognitively impaired? Of course I am. I know her brain doesn't work the way it's supposed to...I just believe we have to work around that. She's in there. She is so much more than the pretty sweet little girl with the sparkling blue eyes. She has so much to say....I don't want to be the only one willing to listen.

A VOICE for Abby

For several years now we have been wanting and fighting to get Abby an Eye Gaze Speech Communication Device.

For a while I fought and fought through the school district. While they will admit and write in her IEP"S that she communicates through Eye Gaze...when it comes to trying to get her one, they fall back into the old routine of her not being consistent and not proving what she knows. I can give them every book and paper in the world on Rett Syndrome and it is just not happening.

I have shown them videos of her looking at answers. I have brought educators in my home. They just don't get physical Apraxia. I guess you can read about it. Study it but I don't think it's something you really get until you have a child with it.

I have asked several educators and Administrators what it means and they know that they have to wait 30 seconds to 2 minutes for an answer. When you actually watch them ask....they don't give her more than a few seconds. There always seems to be a person in the room repeating the question over and over no matter how many times you correct them.

Over the weekend a friend got Abby a toy. It's a Dora globe by Vtech that plugs into your TV. You help Dora explore the world by pressing different continents and using a simple joystick. We sat down today and I held her hand over hand and tried to help her follow simple instructions.
I sat there why she tried to pull her hand from mind over and over again. She growled and tried to bite at me until she went stiff and started to tremor.

When we turned on Dora the cartoon she stood in front of the TV and noise pointed at Swiper and Dora. She turned in circles every time they counted.

She has to have an Eye Gaze device. We have tried her before on a Dynavox and a Tobii c12 with eye.

She is seven.She should be able to play games and play music. She should be able to switch channels and answer questions. A very hard...impossible task when you have no use of your hands. When you are totally and completely non verbal.

Tomorrow I am going to make an appointment to have her tested. I have no idea how long this process takes. A while Ive heard.

So here's the deal. I need your help. Or I will. The My Tobii is the best device for her. It with a stand and the eye camera is near $20,000

A friend of mine obtained one for her daughter several years ago. They absolutely love it. I have to say that her daughter is more physically disabled than Abby is and she can absolutely use the device to carry on conversations. Make requests. Play music and videos and do her school work.
The issue is that even if you can get insurance to pay for it they almost always will not pay for ALL of it.

I have heard stories of them not paying for the stand, which is $1600.00. I have heard of several cases where they won't pay for the camera that catches her eye gaze and uses it as the mouse. This one is $5,000 extra.

Hopefully we can get them to pay for all of it but if not I will need anyone willing to help me hold a fundraiser to create a Special Needs Trust for Abby.

I think if we all pull together we can do it.

Watching my daughter fall to the floor, stiffen up and shake because I am trying to get her to use her hands is something I don't care to witness again.

A friend in New Jersey just last month was able to raise enough funds for the entire package in one night. Now she defiantly has wealthier connections than I do so maybe we have to do more than one.

I would appreciate anyone that wants to sign on. I will keep you all posted.

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

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!