When Charlie was born, my wonderful friend, Bettyann, put her on the waiting list for Rehab Right, a nearby place where Charlie could get therapy. I was so unfamiliar with all of this, it never occured to me to think about therapy. Bettyann asked, "I hope I wasn't out of line doing that?" I assured that I was very grateful because it was one less thing for me to worry about. So because of Bettyann's quick thinking, Charlie has been able to receive therapy from the time she came home. She started out just getting Occupational therapy twice a week. At about 4 months, she started getting Speech twice a week. People are always asking, "Why does a little baby need speech?" Speech therapy for little babies is pretty much just oral and feeding therapy so they can begin eating and prepare their muscles for speech. If you can't coordinate those muscles to eat, they aren't going to work right when you try to talk. Just 3 weeks ago, she started Physical therapy once a week.
Whew! That's on top of her medical appointments! Thankfully, RR coordinated her schedule so she recieves OT and Speech the same days. So she only goes monday, tuesday, and wednesday.
Her OT's name is Angie. She just loves her to pieces. She says getting to work with Charlie is therapy for *her*, because she's just so sweet and loving and cuddly. LOL She's done a lot to help Charlie's tone. It's weird because hypotonia is low muscle tone...Charlie is still floppy, yet she is often ridgid from being inactive. So basically, she's stiff, but with low muscle tone. We used to have to fight to get a diaper on Charlie because her hips stayed fixed in one position. Now it's no longer a fight and we can actually get Charlie to straddle our laps or a ball! I used to have to physically bend Charlie in half to set her in her car seat, but now she goes in easily and without a fuss. Charlie also used to keep her head fixed to the right and therapy has helped there too. She still sometimes prefers her right side, but she's no longer doing an "Exorcist" scene, trying to turn her head completely around.
Charlie's Speech therapist is Kim. She's very sweet and is not afraid to tell us what to expect or not to expect. She's very understanding of me wanting to nurse Charlie, if at all possible. She even invited my midwife/lactation consultant to come in and help when we are ready to try Charlie at the breast. I like that she is willing to accept help in areas she is unfamiliar with. She's learning alot about nursing though, for Charlie's sake. She goes out of her way to look up information for us. So far, Charlie has improved greatly with ST. Her oral skills have come a long way. Before speech, she really only sucked and didn't do much else. Now, she can move her tongue all around and stick it out. Her jaw is loosening up. She's handling her secretions a little better. And her suck is getting a lot stronger. She started accepting a pacifier as well. She used to balk whenever we tried to put anything bigger than a suction catheter in her mouth.
Finally, her PT's name is Michelle. Michelle just started working at RR and found Charlie a spot ASAP. She works with Charlie more on strength, where Angie works more on movement and loosening her up. Michelle has great goals for Charlie. She thinks Charlie will be able to sit with minimal support, roll both ways, and get up on all fours by the time she is one. This is the first anyone has told me what they think Charlie CAN do. Everyone always says, "oh we just have to wait and see." While they are right in a sense, can't anyone give me an *idea*? Michelle did that. I asked her, "You really think she can do all this?" She said, "Actually I have very conservative goals. If she's doing more than that, then great!" I was floored. It's hard to believe my little girl, who is functioning at about 4-6 weeks at 6 months might really be almost ready to crawl by a year. Michelle has given me hope and she's only worked with Charlie 3 times!