Wednesday, February 23, 2011

Physical Therapy

Today was the first of many physical therapy sessions for Max and Ivanna. I found a fabulous therapist that comes to our home. This is ideal when you home school five children and are super busy with day to day "home stuff". I liked her right off the bat when she was able to really explain to me her thoughts on why Max walks stiffly and has an odd shaped hip region. Her theory is that he has learned to walk in a way that uses a form of projecting out his hips - this makes the inner leg work more than the rear. Thus, this is why his tush is non existent and his legs are super strong. If you watch him walk, this does seem to be the case. He walks sort of like an old man, with his hips pushed forward. Hard to explain, but I am excited to have someone who "sees it" too. She could also tell by his range of motion that perhaps some of his ligaments within his hip are shortened due to non-use. So, we are working on hyper extension exercises now and some others as well. She seems to have a real heart for kiddos with Ds - and Ivanna is always smiling and tugging at her - so that is great. Once Justus ages out of the Early Intervention program, she will also do his therapy sessions.
Ivanna surprised both the therapist and myself today when she did some movements that we did not expect her to be able to. So, that is very promising. Let's just say - that girl will probably be walking pretty soon. I really stand in awe of her at times, and then when I ponder it all - it really is an awe that reflects the mighty things my Saviour is doing for Ivanna - and strengthening my faith along the way.
Remember - this is a girl who has lived for FIVE years in a crib. Seriously. She went from her sleeping crib - only to a bigger play pen type crib in the groupa's central room. Not a lot of stimulation. The fact that she is taking steps - is miraculous.
So, I have had three different health care providers now mention to me that based solely on Max's appearance they think that he is Mosaic Down syndrome. What is Mosaic? Well, there are three different types of Down syndrome. Trisomy 21 (the most common - and what Justus was born with), Translocation (hereditary), and Mosaic (the higher functioning). Why is Mosaic higher functioning? Well, the extra chromosome pattern is scattered throughout the body - not affecting every cell like what you see with Trisomy 21 and Translocation. This type of cell pattern usually means that the affects of Ds is lessened or not as severe as can be in some cases.
What does that mean to me? Well, haven't really thought about it much. Should it mean something? Does it mean I should be doing something differently than I already am? I would have to have a blood test to determine what type of Ds Max has - and I HATE, HATE blood tests on my babies. So ... I'm thinking I'll just pass. What do you think?

Besides, whatever Ds Max has - it's absolutely perfect!

Ivanna is lovin' the vacuum cleaner.

So ... I know I promised picture overload, but I haven't had a whole lot of time to take pictures. (shocking, yes - I know)
So - I promise - the camera comes out of hiding tomorrow! ;)


Anonymous said...

I'm with you Charrissa...what ever type of DS he has is what the Lord gave him. Sometimes I hate labels, the Lord surpasses what our lables dictate. (((Hugs)))

Lisa Banks

Mcarthur Mile said...

Her cheeks are so chubby! I would not worry about it, a label is a label, and it never does anybody any good. Just keep on loving him and he will amaze us all! I can't believe Ellie and Chloe are in school. The first time I met you Chloe was 3 days old. It has been amazing to see what God has brought all of us through in the last 3.5 years... and I am so glad we had you family right by our side through all of it. Miss you bunches.
love ya

Leah S. said...

Oh man, I hear that A LOT from the parents coming home! People (doctors) have this thought that kids with DS are going to look like adults with DS, and it just doesn't work that way. His features are going to change as he grows. When Angela was little her features were VERY mild. She had the exact same features I have. (and I have almost shaped eyes with epicanthal folds.) Axel's features(10 years old, home 2 months) are VERY mild, he is very high functioning, and he does not even qualify for OT because his fine motor skills are at age level. But he has standard, garden variety Non-Disjunction Trisomy 21. There is NO WAY to tell from their features. Absolutely none. Kids with MDS can have more health issues than a child with NDT21, or they can have less. Just like the rest of the kids with the other forms of DS. So...all that to say no, you wouldn't do anything different with Max based on what type of DS he has. You just teach Max based on how Max learns. But, should you ever try to apply for SSI for him, he will have to have a karyotype done to prove that he does have DS.

Faith for Hope said...

Learning so much about all of this. Thanks for being willing to teach us. They are all sooooo cute! Love your kiddos! Hugs for all! ~ Grace
(P.S. Have news and a question for you... will try to call tomorrow. Thanks.)

Amanda said...

Hello, I am working on a montage of children who are adopted from RR, I was curious as to if I could use a picture of your sweet son and daughter?
Email me at


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