While we wait to see what Dr. R will do (or not do), to ease frustration on Meagan's part, and ours, we decided to move forward with Meagan's PT, despite warnings about her arm ligaments. We have just had to shift gears a bit to be sensitive to preserving the health of her arms. We have pretty much abandoned any avid attempts at crawling or stair work...we don't restrict her going on all fours, but we are not pushing that anymore. When she gets her arm braces we can probably go back to that more often but for now we are trying to still take it easy on her arm joints. We decided to move forward working with her legs. Ironically, due to her losing muscle mass in her arms, her legs have been doing more work when she is scooching since she has less and less power in her arms. When she moves forward, she will prop on her arms (think of a picture frame), but, really pulls her body forward with her legs to move quickly. So while her arms have been getting weaker, the unintended (good I guess?) consequence has been her legs getting stronger - which, I cannot complain about! So we are going to go with it. We are working on a lot of standing with support - getting her used to being on her feet..etc. Now that she's been wearing her AFO's for a while, and pulling her body weight across the floor with her legs, her lower legs have the ability to do a lot more work with standing exercises. We have been also holding up her torso and letting her make "walking movements" with her legs. We will hold her and walk behind her twisting her torso so she gets the sensation of how to pick up one leg and then the other to move them separately. This has seemed to work ok with her as long as we tell her she is dancing. Seems odd, I know..but when three older sisters are competitve Irish dancers, she sees QUITE a bit of leg movement. I think this has actually been great for her because she has been watching them dance so long, she seems to want to do it. She will even yell "off you go!!!" when we are working. It cracks me up because that is what she yells at my older girls when they practice their Irish Dance... so it seems as long as we tell Meagan she's dancing, and count her off "5...6....7...." she will continue and yell "off you go!!" and move those feet as fast as she can while we hold her and roam across the floor. It's quite hilarious, and also really good exercise for her legs. The only "downside" is it's not so great on my back, and she does NOT tolerate "walking wings" or other standing support devices just yet. Leaning over and holding up her torso is definitely not good for me...so in the near future we are going to try her in a gait trainer and see if we can get her used to being strapped in. She hates being strapped into anything but we are hoping since she loves her legs so much, she will get over the strapping in part once she realizes she can move herself in the device with her legs. The plus of a gait trainer for her is also that it requires minimal arm use. With a walker, she would be reliant on her arms for a lot of support. Since that is her area of struggle right now we want to steer clear of being reliant on them to ease any possible frustrations that may arise. So we will see. I'm looking forward to her trying a gait trainer soon! Meagan's PT said she should have one we can try in the next few weeks that is Meagan's size.
Another bodily "mismatch" Meagan has been experiencing is between her abdominal muscles and back muscles. From scooching and sitting, her abs are insanely strong. I wish I had her abs! The problem is her back is not strong, and leaning back on those weak arms has exacerbated this problem. So although working on standing is "fun," she won't be able to progress to self standing until we get her back a lot stronger. She will keep collapsing over forward, and with weak arms, that's not a good combo for the ol' noggin! Meagan's PT decided to try a pressure vest on her to see if it would help a little. Meagan has a LOT of sensory issues (putting on her AFO's or anything on her feet is a huge challenge everyday, she hates anything on her head, doesn't like things pressing on her body, doesn't like certain textures..etc.. ) so the vest was quite the challenge. After about 10 minutes of screaming and crying, we were finally able to distract her and play with her, and she calmed down and kept the vest on. The purpose of the vest is to help support her back. This way every time we work on standing, or she pulls up ...etc...she is engaging those back muscles, whereas without it, her abs overcompensate and do all the work. Meagan's PT was able to work with her for about 30 minutes yesterday wearing the vest and we could definitely see it made a huge difference in her stability.
One other thing we are working on as of late is Meagan's growth. She still has issues with weight gain and growing. She is at least back up above 20 pounds since adding in her extra feed, and she still will sometimes snack on food, but she is still shoving a lot of it in her cheeks and not swallowing it all the time... which basically means she's burning calories chewing and chewing and not getting the equal amount of calories from the food she puts in her mouth. What she does eat is minimal, or I end up pulling the bulk of it out of her cheeks when she can't shove anymore inside. We are working on this and try to give her a little more through her tube but at the same time have to keep a balance of calories or she gets nauseous (and no one likes that feeling). I was at Target the other day with the girls and they were asking me what clothes Meagan wore. Out of curiosity, I held up what she wears (9-12 months) along side what she "should" be wearing (2T). Wow! I keep thinking she looks so big, but seeing the difference in clothes reminds me what a peanut she still is. We will see what the next step is in possibly trying to get more weight on her. Weight drives height, and being we haven't had ANY growth in height since last September, we may be visiting the GI again soon to talk about a plan.