Tuesday, August 2, 2011

Finally...an update!

Well I totally dropped the ball on promising to update with Madie’s latest progress.  I swear if I had more time I would update daily.  I can’t believe that we have been home from OCH for over a month!  Madie’s therapists here all agree that she definitely benefited from her two week stay there.  We have implemented all of the ideas we got during out stay there and are starting to see some results. 
Madie is eating more and more by mouth every day so that means smaller and shorter tube feeds.  She needs to eat 240 calories 4 times a day and we haven’t been able to get an entire 240 in her during one sitting but we are seeing major improvements.  She is also doing really well with her sippy cup and can pick it up and drink all by herself!  I have started giving her some of her formula in the sippy cup as well.  Keeping up with Madie’s fluid and calorie intake is almost a fine science and there is a lot of measuring taking place in our kitchen.  A very sweet friend of mine bought Madie an amazing assortment of tasty ready to eat pureed foods.  I’ve tried almost all of them myself and they are really good.  Madie definitely has her mind made up which ones she likes and which she doesn’t.  I’m also learning how to puree what the rest of us are eating.  Some things are proving to be trickier than others. 
We are also starting to see Madie “talk” more.  She can say Dada, Mama, Da(dog), Bye-bye(sometimes) and sometimes I think she is saying “that”.  She definitely has her own language and she knows what she is saying…if only the rest of us could figure it out.  There are times when it sounds like she says something so clear and then we try to get her to repeat it but she doesn’t.  It is very evident that Madie understands almost everything that is going on and what you are saying to her.  She really wants to talk so bad.  Her babbles are different when you are making eye contact with her versus when she is playing with a toy or sitting alone in her seat.  She will also often mimic your lip movements when you try to get her to repeat words.   
Madie’s PT and OT are both going really well.  She is getting much better at sitting up but still needs support most of the time. Madie’s therapists at OCH felt that Madie’s brain is aware of what her limbs need to do to walk, crawl, sit, etc.  But maybe, her body isn’t quite aware of where her limbs are, the brain is a tricky thing!  So we ordered Madie a compression suit (Spio Suit) with the hope that the deep pressure she receives when wearing it will help her brain realize where her arms and legs are.  So far it really seems to be working.  Her therapists agree that her ataxia seems much better when she has her Spio suit on and her movements are noticeably much more controlled.  
Madie has also started some aquatic therapy with her physical therapist.  A friend of mine has amazing pool and offered to let us use it for Madie’s therapy and it is going really well.  I am fairly certain that Madie would have no problem at all swimming every day!
Before we left OCH Madie’s therapist suggested that we try Madie in a piece of equipment called a lite gait.  The lite gait is designed to help patients walk on a treadmill.  When I called our equipment company, Madie’s rep let me know that we couldn’t order one until October but in the meantime we could try Madie’s gait trainer on a treadmill.  The only problem was that the treadmill would have to be wider than the gait trainer and it would need to have a slowest speed of .01 MPH.  Well wouldn’t you know that the old treadmill that I have been hanging clothes on in bedroom for years was the perfect fit and speed!  So the idea behind all of this is that we will put Madie in her gait trainer, lock the wheels, turn the treadmill on its lowest speed and we will move her feet for her.  She knows to pick her feet up and take steps if you hold her up but when she is done she is done.  Plus she weighs 32 pounds so it is tough to do.  So this new way allows us to pick Madie’s feet up for her and help her take steps.  In theory, the repetitive nature of walking on the treadmill will help Madie’s brain reroute the message that this is how to walk.  I’m sure this sounds crazy and I really need to get a video of her doing it and hopefully it will make better sense.  We tried this for this first time Saturday and she did great and was taking beautiful steps with little to no initiative from us after just a few minutes.   
I can’t believe summer is almost over.  Molly Michael will be starting her last year of pre-k(snif snif) in just a few weeks.  She has had a busy summer but is ready to be back with all her peeps at school.  I’m ready to have the routine back too!  I think I forgot to mention in my last update that Molly Michael broke her arm.  She had a brilliant idea to take all of the cushions off the couch and THEN jump on the it.  Well, she fell and broke her left arm but trust me when I say it did not slow her down one bit!  She was supposed to wear the cast for 3 weeks but after 2 weeks and the 100+ degree temps here, the cast started smelling.  Once I could smell it in the front seat when she was in the back, I felt like it was time for a change.  They x-rayed her arm and there was already a good amount of new bone growth so she got to go cast free a little early.  Thank goodness! 
As we get closer and closer to the one year mark since Madie’s accident, I want to sincerely thank each of you for continuing to follow our story.  God has absolutely blessed our family!
With greatest gratitude,
Kristin, Matt, Molly Michael and  Miracle Madie

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