Dear God, can you do something about this Rett Syndrome stuff now please?

Dear God,

It's me Abby. Can I get you to do something about Rett Syndrome please?

Today drove me and my Mom crazy. She means well but sometimes she just doesn't get it.

She is very sick. Her mind is not right. Today when she went to take my brother his wallet at work, she picked me up and walked to our front door. I sat on her hip wondering why she was pointing the car remote at the front door. She would hit unlock then try to open the door. I watched her do it twice. When she was turning with me to shut the door after her mess up, she caught my arm on the door and pinched my elbow. She thought maybe she had hurt me but I just looked at her and looked at my arm. I wish I could have told her. I'm sure she would have kissed my boo boo. Instead she just walked clueless to the car.

She tried to take a nap but when she laid there, all she could do was cough and cough. I heard her call a couple of people to ask if they could come over and help her. I think they said no because she cried and nobody came.

I looked at her in her bed when she was coughing and crying. I wish I could go make her some soup or bring her some tissues. I can't get out of my bed. Believe me I tried.

When it was time to feed me today Mommy did it wrong. She made my bag right. She put all my vitamins in it. She didn't notice when she plugged the tube into my belly that it fell right out and was laying next to my left leg. I tried to tell her while she was eating her soup that I was hungry but the words wouldn't come out. Mom pretends that she knows what I am thinking and just told me I couldn't have any of her soup because it had noodles in it and noodles are made of wheat. I looked at her harder and she thought maybe I didn't like what was on TV, so she kept changing the channel, not understanding that I was telling her my food was leaking on the side of my leg and wheelchair.

My timer finally went off on my feeding machine and when she came over to unhook me she saw the food all over my leg,chair and the floor. It makes me sad when my Mom cries. I tried to tell her it was OK but she just kept begging me to forgive her and telling me she wished I could talk.

I wish I could talk God. I wish me and all my Rett sisters and brothers could talk. We hear the words in our heads but they won't come out of our mouths. We are used to it mostly but when we really need it it is really hard sometimes. I don't want to see my Mommy cry anymore God. When she was cleaning me up she saw the red and purple mark on my arm where she had caught it on the door. Either that woman is a complete bawl bag or she really needs some rest.

Dear God. Can you please do something about this Rett Syndrome stuff now please?

Your child,

Abby

Talking bout horsey's

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



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Trick Rider

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!

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!