Friday, May 20, 2011

Della's Ninja Suit or What's Going On With Della: Part 2 of 4


This is Della wearing a SPIO suit which makes her look like a ninja...
 SPIO stands for Stabilizing Pressure Input Orthotics. The first time Della put on the full suit she took NINE steps BY HERSELF!

How does it work? I do not know. But here is my interpretation. Della seems to have a disconnect between her brain and her body. Most of us have a built in sense (like taste or smell) to know where our body parts are without having to look at them. Wikipedia says (very official, I know) "Proprioception: is the sense that indicates whether the body is moving with the required effort, as well as where the various parts of the body are located in relation to each other." When someone lacks this sense it is called "apraxia". This is from the Internet (I do realize that Internet with a capital "I" is not an official source but I lost the site I copied this from), "Apraxia is a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though:
  • The request or command is understood
  • They are willing to perform the task
  • The muscles needed to perform the task work properly
  • The task may have already been learned

Della's receptive language abilities are much higher than we had thought. We think she understands most of everything that we say to her. But she can't talk even though she tries. She can say some words like "ball" or "bubble" for example very clearly at times and then at other times she tries to say one of these words but then she hears herself making sounds that she knows aren't right and it frustrates her.


So what does the suit do? It really really tight. The shirt looks like it would fit a Cabbage Patch doll. But the fact that it is so tight means that her arms and legs and trunk and even her internal parts are constantly giving her brain input saying "Something is squeezing me." Kind of like wearing a wedding ring. I have been wearing it for 10 years but every day, usually several times, I think to myself "I am wearing something on my finger." Maybe Della waves her hands and shakes her head and grinds her teeth and who knows what else because she doesn't naturally get that input from the different parts of her body. So the suit eliminates her need to do those things almost entirely. It was pretty amazing to see her so calm.

The ways that this could help Della are limitless. Eating, walking, talking, playing, attention span, etc could potentially all be improved. You can read about some success stories on their website.
The suit is expensive, so we thought we would try the less expensive/trashy alternative, Ace Bandages...

Look at that face. Do I even need to tell you that it didn't work out so great?

Wednesday, May 18, 2011

The Results Are In (Again) or What's Going On With Della Part 1 of 4


There have been a lot of things going on in Della's life and instead of trying to put it all in one post, I am going to do it in 4 to spare you the endless reading and me the obligation I feel to post it all in one night. So, here we go...

For some reason all of Della's annual visits her many specialists fall between the months of February and April. My calendar looked like this for 2 solid months. Why do I do this to myself?
 
 Della says she hates all of the appointments and tests...
We started with neurology after waiting months for an appointment. The doctor was wonderful with Della and didn't mind when she pooped her diaper the second we got into the 10x10 foot exam room and then tried to hit him with his own reflex hammer because she was angry that he had hit her with it first. It was highly embarrassing. Anyway, Dr. Zeller is confident that Della's condition is not the result from brain damage. We had always wondered if there was a chance that this was the case after her scary delivery and when she almost died of RSV. Not so. Dr. Zeller feels that she had a genetic condition that technology isn't able to "see" yet. He also thought it disturbing that she can do this...
 

 He agreed that her low muscle tone needed to be addressed with Physical Therapy (which we are already doing). Then he said "See you next year." 

The other major appointment was with the TCH Genetics Clinic. Our Geneticist, Dr. Graham pretty much repeated what he said last year and confirmed Dr. Zeller's theory, that Della's condition was genetic and that we don't have the technology to see it yet. BUT, there are some exciting developments in the field of genetics and they have recently been able to see an individual's ENTIRE genome sequence which is made up of 6 BILLION chemical units! Now as impressive as this might seem all of this information is moot without a computer program that can decipher and organize the information. Then Dr. G looked at me and said something awesome, "Don't think that Della will be an adult by the time you finally can put a name to what she has. Chances are high that you will know in 3 to 5 years." I was so stoked. I do realize that putting a name to what she has won't change her prognosis. A child with Down Syndrome still has Down Syndrome whether it is identified correctly or not. You can't change DNA. BUT- if there were ever another child born with the same genetic condition that Della has, they would be able to look at our daughter's life and have an idea of what they can expect and how they can best help their child. Who knows, maybe they will call it Della-itis. That was a terrible joke.

Besides those two appointments her renal (kidney) ultrasound came back good as did all her blood work, and the repeat of the Microarray didn't show anything. So that is good too I guess.

For anyone who hasn't been to a children's Neurology or Genetics Clinic, it can be a highly emotional experience. The waiting rooms are filled with children with all sorts of problems and seeing these little ones suffering is difficult for me.

I leave you with this picture of Della hanging out in her laundry bin fort...

Monday, May 09, 2011

Goings On In Spring 2011 (It's is a horrible title but that is the best I could come up with.)

We have been busy the past few months and this is a summary of what's been going on:


 Here is Archer looking thrilled to be photographed eating ice cream amongst the flowers...

 We went to the Mental Health/Mental Retardation Authority (MHMRA) Autism and Intellectual Disability Awareness BBQ. MHMRA provides services to adults and children with intellectual disabilities in the Houston area. It was both comforting and scary to see so many families in situations similar to ours. There were a lot of older parents taking care of their "adult children" with serious physical and mental disabilities. I got choked up several times as I watched these aging parents dance with, spoon-feed, and lovingly taking care of their sons and daughters. I asked Chad if being at the event made him sad. He said "No, it doesn't make me sad, it makes me thankful because it could certainly be a lot worse." Why is he so much wiser than me?

I like how Della looks a little disgusted as she pets the baby duck...

Here is a picture of Archer hiding in the Lousiana iris. This also happens to be the exact moment that he sat on stinging nettle. Who knew that such a little plant could evoke so many tears?

Della is currently obsessed with airplanes. She likes to eat dinner while holding one. Well, maybe I should clarify. She doesn't actually eat dinner, she just likes to hold the airplane instead of eating dinner. Notice how there is no food in front of her. Don't let that sweet face fool you, she can be very naughty at times!

Archer's school doesn't dress up for Halloween so instead, the first grade classes dressed up as their favorite characters from a book. Here he is as "Serious Harry Potter"...

And here he is as "Happy Harry Potter." I love that his new teeth look giant in comparison to his baby teeth...

My good friend Julia was on tour with Thomas the Train and she was able to spend the night at our house on her day off! We had a lot of fun catching up. She got us tickets to the show and we had so much fun! Well, 3 out of the 4 of us had fun. Della was half terrified and half fascinated and she watched most of the show hiding behind my hair...



Della said she didn't want to look at the camera...

And this is just because I like it...