Bouncing Baby! :)

Taking Maelee to physical therapy (PT) can be exhausting but exciting at the same time.  I was so happy that my Dad and Lee were able to join us yesterday for her weekly session. Since Maelee has begun PT I have had to fill in what happens and what is next to Lee....and sometimes I can't remember everything that happens. I know it seems much can't happen in an hour but I promise a lot happens in that tiny span of time.
This week Maelee continues to make strides! She is doing so well. Over the past few weeks she has started "crawling". Let me describe this for anyone who has not seen her....she is not able to put her knees underneath her for any extended amount of time so she looks kinda like a little frog! :) She is doing great and getting places, sometimes a little too quick for me. Emily (her PT) said that we will keep working with her to pull those legs under but this is all related to her hypertonia. She is not able to pull her legs under without her tone kicking in and making her legs go out. Some days she does really good and then there are days when she is really stiff and she just drags her legs around behind her....either way we are so proud of her!
We have decided to hold off on bracing her feet until her muscle strength is stronger. We talked about this with her PT and decided that if we braced now she might become dependent on them.....something I would hate to do prematurely if not needed. Bracing will help hold her feet down and give her good form, but until her strength is better we will hold off.
Emily has begun doing deep pressure massages on her feet and that has helped. Maelee not only has hypertonia but also has a sensory integration concern. We are not sure exactly what this will turn into or not into. She curls her toes a lot and sometimes it is difficult to put shoes, socks, or when you touch her feet she gets very upset. So her standing concern is not only related to hypertonia but a sensory problem. Now the question: Is what is causing the hypertonia causing the sensory problem? or Is the sensory problem making her kick in her muscle tone? We don't know and we are not sure if we will ever know.

With Maelee's sensory concern comes her love for bouncing. I have been explaining this to Lee over the past month...and until yesterday he really did not understand. Maelee has always loved to jump but there is something different about her when you bounce her on an exercise ball. Yesterday she was overstimulated and would not stop crying during therapy (something that does happen every so often) and Emily did exactly what she always does; She got the exercise ball out, sat Maelee on it while she was still crying, and began to bounce her gently. Within seconds she stopped crying, was calm, and peaceful. Her muscle tone decreased and she relaxed. It was amazing!! Lee got to see what I was talking about. She loves the vestibular input this gives her and finds it soothing. Throughout her therapy session anytime she gets upset, extra stiff, or just beside herself- the ball is used and it works great! We bought a ball yesterday......where has this thing been for the past 8 months!!!!
Maelee has her overstimulation moments. Something many will not understand; It's not always filled with crying, sometimes just stiffness, and other times a little of both. Today she was on the verge of THAT moment......I got the ball out and within seconds she was peaceful, relaxed, and at rest. Her muscle tone started to decrease and I was able to move her again. At the beginning of the week she had a bad day, I can say this and know that we tried to make the day better. She was so tight we couldn't get her in the highchair, it took me 20 minutes to get her pajamas on, and then changing her diaper was a whole other challenge. I wonder what would have happened if we had placed her on the ball for 5 minutes during the day.....would her day have been better!? We will never know about that day but we can see what happens from now on.
Maelee will continue her PT once a week on Fridays and OT on Mondays! During OT she will work on her fine motor skills and more sensory focused activities! We are so thankful for the therapists in her life who we know love and adore her! We do not have an answer and that drives us crazy at times......but until then or if ever we will continue to do our best for Maelee! We will love her with everything we have, fight for the best care, and never give up on getting her all she needs! She has always been a fighter and we will do the same for her! She is our miracle! We do love our sweet peanut! :)