Meagan has "mixed tone" ... in that she is severely hypotonic in her trunk/back and neck (floppy)..but she has some hypertonia in her legs and arms (tense). So she showed me several exercises and routines I can do with Meagan to help with her tone and also build strength so she can start holding her head up. One in particular she wants us to do as many times a day as possible is to hold Meagan on her tummy and massage deeply down the center of her back. She said this is one of the only ways to stimulate those muscles and it's important because right now her trunk is like a wet noodle.
She did a lot of work with Meagan up on a rolled towel on her tummy. Meagan of course could not hold her head up at all on her own, but the PT showed me a way to support her and also pull her head back so we could add some tension to those floppy back muscles to start working at lifting the head.
A "new" skill she was trying to get Meagan to do today was to grasp and hold on to a toy. The PT hoped this would help Meagan bend her arms more often. She would put a toy in Meagan's hand .. and each time out of habit, I would reach down and help Meagan grasp the toy. Of course Meagan would keep her arms straight and I would be helping her hold on. The PT asked me to not help Meagn...to let Meagan do it... and out of nowhere, for the first time, Meagan grabbed on to a toy and held on to it for a few seconds! She actually cooed with excitement and then did it again! And again! The PT was very proud of her, and so was I. Meagan seemed happy too - she was cooing and smiling the whole time she was holding her toys! Meagan was feeling the reward for her doing something on her OWN.
After seeing Meagan's PT session today, I know she has a long road ahead of her physically. The poor thing was so exhausted when it was over, she literally fell right asleep.. and wouldn't even wake to eat!! She finally woke up almost 6 hours later, ate, and then went back to sleep. So the PT will definitely take its toll on her little body - but it's for the best. Eventually, she'll get more used to the therapy and working hard.Overall today went well. I'm excited for her next PT session....I think that Meagan is finally at a point when PT will start helping her.... she seems to be in a good place with her shunt.. and her seizures (knock on wood) have at least started to lessen with her new medicine.
I've spend so much of my time fighting for Meagan -- and I will continue to do so....but I realized today after the PT told me to let Meagan try on her own... at some point, Meagan also has to start fighting for herself. I will certainly be there every step of the way...but part of my fight for her is so she learns how to push through things on her own as well. I can encourage her, help her, and work with her - and of course I'll always be there to pick up the slack on her hard days.... but ultimately SHE is going to have to be the one that wants to hold her head up, bear weight on her legs, and do other things down the road. I hope I can give her the best foundation possible for her to accomplish these things.
I'm a very independent person - and I feel one of the greatest gifts I can give to Meagan is to help her realize how she can be independent in her own way. It might be as small as her grasping her own toy..and I know she is only just at 4 months old....but I see no reason to not encourage her to start working hard now. It is in even those smallest moments where she will taste a little bit of freedom. It is in those small moments when she will finally realize she decides to take steps forward.. no matter how much the Hydro wants to hold her back. And it is in those small moments when she will hopefully feel so proud of every little accomplishment, it will propel her on to doing other great things -- something I've known she is capable of all along. Let the hard work begin!