Summertime Fun

This afternoon we had some fun outside with the beach ball water sprinkler. At first Andrew just stood in the water and wasn't sure what to think.

Another picture of the wrinkled nose. I would love to know what he was thinking. Probably wondering why mom is taking so many photos and calling his name.

A picture of how calm he gets when he is outside. If only it wasn't 100 degrees out for the next week.

Another picture of our happy boy!

Progression of Hand Movements

Andrew's hand movements have always changed since he turned two. At first he started putting his hands behind his back and everyone at daycare thought he had such good manners when he walked in the hall. It then moved to the front where he held his left hand in his right. Within months he started to wring his hands scraping fingernails across the inside of his right palm causing blisters. Then it changed to where he would pat everything in his environment one or two times and then wring his hands. We were a worried about this but thought that at least he was exploring toys and other things through patting. He loved to pat our trashcan and hear the sound it made and because he loves music he broke his boom box several times by patting it so hard. At Christmas last year he started to clap his hands. My parents were excited about this and I got worried knowing it wasn't a real clap of happiness for him. He would clap his hands sometimes ten times and then wring them tightly. The past few months the clapping has quieted and he isn't able to make quite the sound with his hands that he first had. He now claps his hands and turns them to a wringing position and then pulls them apart on his face which just gets yucky when he is eating or is snotty from throwing a tantrum. We have also noticed that his fingers are starting to get mis-shapen over the past few weeks. He crosses his index finger under his middle finger on both hands while wringing and clapping. And the wringing is constant-all day sometimes right along with teeth grinding. This is the one that kills us! It really grosses me out and he no longer stops when we tell him to.

This past week we learned of some problems with his MDCP program- this is the one that provides the attendant for him. Apparently he now has to have an adult -myself or spouse or grandparent while a provider is here. Which doesn't help me out at all. Not sure what we will do but essentially I have to quit working or find a babysitter quickly. Here we go again!!

We are one step closer to getting our foster/adoption license. What a process it has been. We learned last week of a two year old boy that is available for adoption that has some special medical needs but overall just a little delayed developmentally. We talked with his caseworker and are hopeful that we can get more information on him. He is adorable and we both think he would be a great addition to the family. We have prayed about it and know it's in God's hands if it's meant to be.

Boys with Rett Syndrome

What a week it has been! Andrew's last day of school was yesterday. He is really ready for a break. Apparently he cried for the 3 hours of school and for the last 2 weeks has refused to walk down the hall to class or from class out to the car. It's very frustrating for his teacher and myself because we know he can walk and we want him to use those legs as much as possible. The more he walks the better off he will be in the long run.

This week I talked with another mom of a boy with Rett Syndrome. Her sons name is Luke and he is 6 years old. They found out a year ago that he had a MECP2 mutation as well and was diagnosed with Rett Syndrome. His mom and I talked on the phone for an hour and half. It was so nice to talk to someone who understood where we were coming from and it was good to feel like we aren't in this alone. Their journey with this syndrome has been a lot more difficult and Luke has encountered feeding tubes, vision difficulties, seizure disorder, and a ventilator to help him breathe. His mom is so good and has a great outlook on things and Luke is adorable. What a neat family and I just wished we lived closer.

Since Andrew's diagnosis in November I have searched for other boys with the diagnosis and been in contact with 5 here in the US. One mom that I have been in contact with the most has a son who is 23, and the others are all younger than 10 years. They are all different in many ways but most of them have tracheostomies, are G-tube dependent and some are on a ventilator. In the beginning every thing I read stated that the boys with Rett Syndrome died in infancy but I am finding that this is not always the case. There are boys with Rett syndrome and although there are few they are still a part of this terrible disease. I know there will be a cure someday and there is research being done to help these boys and girls. Thank you Rett Syndrome Research Trust you have given me a lot of hope!!

In talking with other families Andrew's mutation is different than any of the boys and girls. Initially I thought he had 2 X chromosomes and a Y. Andrew has somatic mosaicisim. Not really sure what it all means, even though it has been explained 10 times to me. I just don't get genetics and probably never will but here is the definition.

Somatic mosaicism -- the presence of genetically distinct populations of somatic cells in a given organism -- is frequently masked, but it can also result in major phenotypic changes and reveal the expression of otherwise lethal genetic mutations.

Andrew is more like the girls with the syndrome than the boys. His progression of hand movements and going through the regression stage as well as most of the other clinical features. We always knew he was a special little boy and are just thankful that he continues to do well overall.

One yea for the week- we have had several contractors come out to look at a remodel for his bathroom. We are thinking long term for him and looking at making the bathroom handicapp accessible and having a roll in shower. He may not ever need a wheelchair but just in case that happens it would be nice to have the bathroom ready for him. I think it would help us out now too in that we are needing a reclined bath chair and need the tub taken out. His bathroom is really small and the more room we have the better so we can continue to work on potty training. When you have 2 adults and Andrew in there it gets kinda tight and we have had several accidents already. We are still thinking about it but it is really wonderful that the Medically Dependent Children's Program in Texas pays for things like this.

Memorial Day Weekend

This past weekend we spent time in Dallas with Felt's family and visitng the Hansen familly. We had a lot of fun visiting Greenville, TX and taking in a game of Rangers vs. Yankees. It was a lot of fun but the Yankees wooped the Rangers. But, the next day the Rangers beat the Yankees. AHH!

Andrew and his Aunt Whitney. He started out with hat and glasses on
sitting down but it got hot and humid quickly and he spent time walking
around with his grandmother.

Here is a photo of Grandad and Uncle Brandon. Grandad always
has his guns up for those Red Raiders. He wishes we were all Texas
Tech fans.

Photo after the game. He has a weird expression but lately

he loves to wrinkle his nose. Silly boy!

He sure loves his Aunt Whitney. What a sweet boy!

Pictures of our Little Man

Finally some pictures of Andrew
at school. I took these as
he was coming out of preschool.
He looked worn out today.
I was afraid he might swing
backwards off the bench, but
he managed to sit for a bit to get
these pictures.

What a big boy with his

backpack on. I am so proud

of him. YEA Drew-Drew.

Reflecting on the Last Post

After posting about today's ARD meeting I realize that I was wrong about things. I could always choose to delete the last post but I thought I should keep it to show myself and others what emotions parents go through at these meetings. After reflecting I know that all staff members that were there today really do care for our Andrew and want the best for them. They may not always know how to go about providing the best education for him and neither do I. I tend to have a guard up at these meetings and don't really let people in and I'm not sure why. Andrew's eye gaze is probably not want I think it is and I guess I had hoped he would be ready for a more advanced system of communication. I feel like I asked questions but got no answers and that is hard for a parent that wants her son to make progress.



I remember back to working in a school and talking with a parent of a child with severe autism before their ARD meeting. I asked them what was most important to work on in terms of speech therapy. The father's response was "I just want him to talk." This was a child that had once talked and gone through regression and never talked again. I now look back on that and have a better understanding for what he was going through with his child and I to just want Andrew to talk. I would love for him to be able to tell me about his friends at school and all the the things that he did outside with the neighbors. Sometimes that lack of having what I want for him turns to frustration. Not a good thing!



Throughout Andrew's life he will rely on others to teach him, help him, and care for him. I have to learn to let down my guard and let people help him and our family. I am so thankful that Andrew can go to school with friends and I know he loves it. He has a smile everyday as we walks down the hall. I realize that the staff don't have a lot of knowledge of Rett Syndrome and virtually none on boys with Rett Syndrome. It will be a process of educating myself and the staff throughout his school career. I still feel like there is soo much that I don't know about this syndrome and so much to do to help Andrew. I just wish there was a how to manual on this to tell me and Felt- yep your're doing it right, now try this. Aahhh.

Andrew is now attempting to walk into school with his backpack on all the way to the classroom. I will have to get a picture of it. It's really cute and I know it has to be hard for him.

Another School Meeting

Just got back from another ARD meeting at school with everyone. They wanted to update and reveiw goals. I hate these meetings. I really hate them. Everyone tries to be sweet and act like they care when I know that Andrew is just another number in spec ed to them. I thought I could handle this ARD alone today and I got a little ticked off and vented frustrations out on the whole group. The teacher who I wasn't sure about a first is actually doing well and trying very hard to help him in everyway possible. I am so glad I have the rapor with her and that she was there. The augmentative communication specialist says that Andrew's eye gaze is poor and that he is not ready for any type of high tech device and that he doesn't always show his communicative intent. I told her I disagree and that the activity that she had done with him must not be very motivating. I told her that we borrowed an M3 from Dynavox but that sadly we weren't able to program it enough to work with. She said he is not ready for that. I told her my main concerns in terms of school are for Andrew to have a voice and asked about what equipment we could get for him to communicate. She said a big mac switch is what they are using. Duh? We have one at home and he has mastered that, can we challenge him? With Rett Syndrome always assume competence! Come on! I got flustered and told her that he could have a tantrum and need to use the restroom but has no way to communicate that and as a Speech Pathologist that really upsets me. I started to cry but controlled it thank God. How embarassing that would have been. Then they argued over using an adpated fork. My main concern with that is that now he can barely use his hands to pick up a piece of food. More frustration. The goals just seem to be a repeat of what we have done with him for more than a year. That has to be so boring for him and I hate it! The SLP tried to add a goal about Picture Exchange Communication System. I informed the team that we tried that in early intervention for more than 6 months but was unsuccessful due to hand grasp and that we had discussed this at the first ARD meeting. Then she tried to say they would use blocks or pegs with pictures on it to for the exchange with communication. Tried that too and it didn't work. When will they start to think outside the box? I am drained. Please pray for Andrew and for me as I feel like school is a total waste other than socialization.