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

Tuesday, March 8, 2011

Calling other CP and AFO mommies...

Katya just got her AFOs last week. The guy showed me how to put them on her and I am pretty sure I am doing it right, but foot keeps sneaking up out of it a little bit (her heel lifts up) and then it hurts her. I think maybe I am not tightening the strap enough but I don't want to end blood flow to her feet lol Is this maybe a sign that we need to stretch more or mom is just not hooking the strap well enough? Her left foot is very tight. So much so that I have to have her lay on her back so I can flex her foot enough to get it flat and fit in the AFO. She tries to help by pushing her foot in and down. I am pretty confident we're getting it on, its just riding up especially when she crawls and the toes of her shoes are dragging a bit more than if she was walking.

While we're on the subject of stretching, I'd like to mention I HATE it. Katya hates it. We're supposed to stretch with her 3 times a day and she absolutely hates it. She tenses up and screams so that I don't know if there is even a point to stretching because she just fights the whole time and how can you stretch if you fight it? Some days she is fine. We play music and she'll sing and help stretch. Yesterday she even ASKED me to stretch. Most of the time though, its a fight. I mention it and she starts crying. Some days I feel like we've gotten set back with our bonding a whole month just from one day of stretching, but if we don't do it, she'll be back to a stiff little board like she was when we met her. UGH. Bottom line: We need to get therapy set up at least one day a week with someone other than mom and dad! I'm sending a certified letter to the school tomorrow. I have tried several other ways to get her evaluated and its all been a no go. Finally someone at the Kluge Childrens Rehab Center called around our county, and then told me exactly where, and to who I need to send a letter and what to say.

So other CP mommies, how many times a day do you stretch? How long do you stretch? We had a translator tell Katya that she has to stretch and wear her AFOs so she can learn to walk by herself. That seemed to help. She told him she liked to stretch! (umm not!) The therapist we saw seems to think that she was overstretched and is aprehensive about it happening again. I think that is probably the case, but we still have to do it. She tenses the moment you put a hand on her which makes getting anywhere with an actual relaxed muscle stretch very hard!

In other news, we bought pansies and tomatoes today for the kids to plant. Katya and the boys loved planting their own little tomato plant and Katya then helped me plant the pansies in flower pots. She was SO excited to help. I sniffed the flower and she said "ee ya!" (and me!) and practically inhaled it -haha! After we planted them all she sat on the steps and said (in Russian) "I love the flowers!" So cute!

Another result of finally having a translator at her last Dr. visit is that he told her that we had named her Mariah. We have been calling her Katya like they did at the orphanage but her legal name is Mariah. The translator told her this and asked her if she liked it. She said she did and now she tells me "Ya Mariah!" She will even answer to being called Mariah. I originally wanted to just call her Mariah but now she's been Katya for so long I have a hard time calling her anything else. We'll see where it goes but she seems to want to be Mariah...


Just Another Day In Paradise said...

Sweet girl... I pray the stretching gets easier on you both :(
Our daughter asked for a new name, I had no idea how I could ever call her anything except Luba. At first I laughed when I said Luba, it was such a unique name, but then she became our sweet Luba-loo. After court she still wanted to be called Luba. But the day I picked her up, she said I AM ALINA GRACE. I slipped and called her Luba, Aluba, Lu-lina.... oooooh boy did I get the death stare from her. She has never looked back from the moment we walked out those doors. Maybe some day sweet Katya will be Mariah in your eyes, but man, is it hard to change. I love both of her names btw :)

Mama of 3 said...

Our translator's name is Luba. She is such a nice person that I couldn't help but like her name :)
Part of me wants her to be Mariah because it represents the new life she has now. They also called her Kahtoosha at the orphanage, but we couldn't go around calling her that LOL! Her "real" name was Katarina, but I never heard anyone call her that.

Just Another Day In Paradise said...

Yeah, Luba was Lubitchkuh... ummm I couldnt call her THAT either! lol

Mama of 3 said...

LOL! yeah they put those little "itchka" and "ooshka" endings on things. Katya calls her brothers "bratchik" and says "sabatchka" instead of "brat" or "sabaka." Someone explained to us its endearing. Now instead of saying "pee" she says "peeshka" ummmm.... :-D

Zack & Jenn said...

Hey Erin - do you follow my friend Erin Loraine's blog? They adopted Oksana at the same time we adopted Daniel. I'll bet you guys would have lots to talk about.


Not sure if her email is on her blog or not, but let me know if you want me to connect you two!


Paul and Diana said...

We've been following your blog and it's great to see the progress your daughter is making. We just got back from Ukraine, Odessa region, with our son. One of your earlier post you said you hired a PI to find info on her bio parents. Would you be able to email the PI info to us. Thanks - riske@juno.com.
Paul and Diana

Ellen Stumbo said...

We adopted Nina from Ukraine over a year ago (time sure has gone by so fast!)
She will be 5 in May and also has CP.

What you are describing with stretching is quite common for any kid with CP, especially one that has not been stretched before! Unless they told you that she was stretched on a regular basis. I know in Nina's orphanage it would have been impossible, there are too many kids and not enough workers. They can barely get some things done, taking the time to stretch her would have been impossible.
Nina cries every time we stretch her, unless I can really distract her, which does not happen often.
AS far as the AFO's, you are not doing it wrong, the same thing happened sith Nina and we got botox. Botox was our miracle to get her heels to stay in the AFO's. She was so very tight that there were no straps to get her foot to stay!
As for stretching, we do it once a day. By words of our PT, stretching really is not doing anything for Nina, it is good for her muscles to be stretched, very good, but to actually see any benefit other than that, we missed the mark. So for Nina, any real difference will come from surgery.
We see a little improvement after we stretch her, but only for a short time. I would have to stretch it every hour to make a real difference, and with 3 little girls, there is no way I can do that!
So I don't stress over it.
We also just bought epsom salt lotion and I try to rub her legs with it before I stretch, it really does help (I think) just a thought :)
Let's connect!
ellenstumbo at yahoo dot com

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