Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Monday, April 11, 2011

Mariah: Medical Update

We spent half of the day this past Friday at the Kluge Childrens Rehab Center. We had appointments with several different doctors to assess Mariah. The things we were hoping to accomplish were

1) To confirm her Ukrainian diagnosis of spastic diplegia (CP)
2) To see just how bad the CP is and how it affects her cognitively, physically, and developmentally
3) To get her doctors on board with giving us a strong recommendation for the schools here so that she can start receiving therapy services ASAP
4)To see if there is anything that can be done right now to help her physically be more mobile.

I took Wyatt along on this trip and while he wasn't awful, he demands a lot of attention so its hard for me to pay attention to what the doctor is telling me while trying to keep the 2 year old from digging through the hazardous waste container or trying to play with the developmental assessment blocks the OT was using for Mariah. Oy... poor baby he was so tired from getting up early. He also ate ALL of the snacks that I brought for the ENTIRE day for all 3 of us in the first visit! Then decided to let go of it via the exit valve while we were in radiology getting a hip x-ray for Mariah. I'm sure those ladies just Loooooved me!

We saw an orthopedic doctor who specializes in kids with CP. He looked at Mariah and checked the tone and flexibility of her muscles in her legs. He said that given the short amount of time she's been here, had her AFOs and walker and has actually been using them, she has made remarkable progress. While watching her walk down the hall with her walker he said that she really doesn't need it to walk and that she is basically hauling it around with her. He said that's fine, its a confidence builder just like the AFOs but he thinks that in 6 months or so we'll try to move her to walking with a crutch or crutches. I asked about botox or serial casting and he said that he really didn't want to do anything right now because she is improving so much. He said that she will probably be a good candidate for botox injections later on but we'll wait to see where she quits improving.

The orthopedic doctor said that he would probably classify Mariah with stage 2 spastic diplegia. Cerebral Palsy is classified in stages 1-5 with 1 being the mildest and 5 being the most severe. Stage 2 means she'll probably learn to walk on her own for at least indoor stuff, and will most likely need a crutch or cane to walk around outside. He said that she'll probably always need AFOs of some sort for her entire life. Also, in a couple of months he wants Mariah to have an MRI. Her medical records in Ukraine indicated a stage 2 brain bleed when she was an infant so because of that and the fact that she has CP (which is caused by brain damage) he said it would be a good idea for her to have an MRI just to see what exactly went on in her little head.

The ortho Dr. also had us go up to radiology and have a hip x-ray done of Mariah just to make sure she doesn't have any additional issues with her hips like hip displaysia which is common in kids with CP.

The occupational therapist...

This guy was a nice man, but evidently had no understanding of how quickly an internationally adopted child who is immersed in another culture will lose their native language. (Hello, its why we wanted a MUCH earlier appointment!) He decided that since Mariah wasn't speaking Russian in full sentences a month ago when we had her evaluated that she must be speech delayed. I told him that she not only spoke complete sentences, she had conversations with adults who had no trouble understanding her at all. (Our translator told us over and over how smart she was and how well she spoke; and she was originally very hesitant about us adopting Mariah b/c of her CP.) It is what it is, and while she has some very obvious delays, speech is absolutely NOT one of them. He insisted that the Russian translator stay for her evaluation even though the translator told him that she understood English just fine. The translator would ask her a question in Russian and she'd answer in English lol

So what the OT did find out from his evaluation of Mariah that I found to be the most interesting is that Mariah is functioning on a 30 month level for many basic skills. She can only copy a single line on a piece of paper with a pen. She had a very difficult time with adding eyes, nose, mouth to a picture of a face (with a pen). She was not able to button or un-button buttons. (I'm not sure about this because I don't think she has ever seen buttons before that time)

The OT said that she very much needs occupational therapy to help her build her skills. She is at a great risk for having trouble in school with handwriting, and anything else that requires that relationship between the eye seeing and the hand doing. She has a lot of trouble with awareness in relation to how objects fit together (puzzles are impossible for her). The therapist wasn't sure if her delays are just due to being in an institutional environment or due to damage in her brain related to her CP. He did at one point look at me and ask if I thought she was very bright. I said YES! He said, yeah I get the feeling she is very smart just needing work in some areas. So, my thoughts about this area being difficult for her were correct. She is very behind kids her age and has a lot of work to do to catch up.

The OT did say that Mariah is VERY persistant. She doesn't get upset or frustrated and quit trying just because something is hard for her. She will find a way to do it even if it takes her a long time. The OT thinks that she was born right handed, but b/c the CP affects her right side that she uses her left hand equally as much as her right. He said that its great that she uses her right hand at all because a lot of kids with CP just won't use the affected hand because its harder. Mariah will use the right hand and many times try it first then switch to left if she needs to. I had to laugh when Mariah stood up, placed one hand on the table and one hand on her chair and moved it to where she wanted to sit then sat back down. The OT commented that most kids with CP won't try to do something like that for themselves. I told him that if she wants to do it, she's gonna make it happen!

We also saw another Dr. who evaluated her more cognitively. Its funny because I saw how Dr. Yuri in Ukraine did little evaluations with different designs of blocks and stringing beads and lacing up laces. These doctors at Kluges did exactly the same exercises that he did! I was very fascinated. Anyways, Mariah was able to complete most things up to a 3 year old level which is about right when you take into account her orphanage delays. I had really felt that 3 years old is about the level she was functioning at right now anyways. This does not mean she is cognitively impaired, it just means she's delayed will hopefully catch up. This doctor seemed to think that she might always be a little slower than her peers and at the bottom of the normal end for IQ, but I am just not feeling that... Mariah is one sharp cookie and not always ready to show what she can really do for strangers in a 30 minute time box.

So the occupational delays are VERY real. The physical effects of CP are very visible and will always be there but are actually less severe than we originally thought. So right now, Mariah does not need surgery or botox and we'll just go back in 6 months to see everyone and see how she's progressed to get a better idea of what she really needs help with and what she is catching up on her own. (I can't wait to see her chattering a mile a minute in perfect English to the OT who thinks she has a speech delay)

So on the "To Do List" for the next several months:

See an optometrist
Have a sedated MRI
Start PT
Try to start OT

On a side note, please pray for our tax return to be processed and deposited right away! Its been held up for a long time and just got pushed out even further (like middle of April). We need that money for Mariah's medical bills. We are JUST under the salary limit for our family size to qualify for financial help from the hospital so we've really been counting on the tax refund and now its not coming when we were told it would. I know there is a reason for everything and its all in God's timing, but I am having a hard time letting go of this one!

"Processing delays" ::::Eye Roll::::


Ellen Stumbo said...

Well M sounds a lot like Nina! And as we worked on OT skills she has improved dramatically and I was so excited to go back to our OT and have Nna show her skills. OT was impressed :) Six months gave her plenty of time to catch up!

I do find it interesthat the OT feels so sure that M has a speech delay. He might be hearing something though, especially if he deals with many kids with CP. We really though Nina had no delay, especially because she spoke fluently and in complete sentences, and we just thought some of her words were a little harder to understand because of her accent or learning new sounds. It turns out Nina does have a speech disorder (not delay) that is common in kids with CP. Nina's is so mild, that most people don't even hear it, but she does get speech tehrapy.I am surprised they did not have you see a PT.

I will be looking forward to M going back in 6 months and surprising them all! Just think how much other kids will push her once she goes to school, sounds like she has a personality where she will not be left behind, no way! She will do it and she will try!

Mama of 3 said...

The OT was going off of what the hospital translator (who speaks Russian Russian not Ukrainian Russian) said about how much Russian Mariah was speaking when he met Mariah a month ago, 2 1/2 months after being home. I'm open to whatever she needs, but her English pronunciation is excellent and the translator said she spoke excellent Russian when he met her, she was just very scared of him since he was the first Russian speaking person she had met in the U.S.

We saw a PT & OT last time when we got the walker and AFOs. They were basing her progress off of that visit.

You are right about her not wanting to be left behind. She will take 10 minutes to push her walker uphill through our yard to the sandbox so she can play with her brothers. She was in a normal baby house with non-special needs kids so she HAD to keep up with them and I think that was probably good for her :) The director said she was quite smart which we wondered about at first b/c she was so delayed in things like coloring, or playing with playdoh but we quickly realized she had never seen those things before!

I am glad that we know what to work on. Her physical needs are obvious so it was nice to know what to work on mentally.

We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson