Therapy

Emma has been getting therapy since shortly after birth. It was her 10th day of life that the OT (occupational therapist) in Orlando created little removable casts for her legs that bend backward. The casts were made out of heat-formed PVC plastic, lined with Tempo fabric, and had a slight bend where the knee would be. They were placed on the top of her legs, like shin guards for the whole leg, with a few soft pieces of fabric that would velcro around the cast and hold it in place. She took pictures of Emma's legs while placing the casts and made a sign so when they were taken off for nightly baths, the nurses would know how to correctly put them back on. However, when Emma had a nurse that was less familiar with her, we would sometimes come in to visit and find them rotated or down lower so the knee part was not in the correct spot. In the middle of August (when Emma was 2 months old) the OT made bigger splints, and this time made it like a shell that opened on one side, so when velcro'ed the casts covered the front and back of her legs. These were a bigger size as she was growing a little bit, but she only wore them for a week or two because the nurses said she seemed aggravated by them and would "desat" while wearing them, meaning she got cranky or cried and her stats would go down. Other times her stats go down even when she's fine just because her leg is kicking so much and the probe on her foot has "poor signal". We would often forget that even though the casts felt so light, for a five pound baby those little casts were the equivalent to having 20 pound weights strapped to your legs! Having her stats up and breathing well has always been the top priority, so the casts have not been used since August.
Since OT was no longer able to work with her legs in that way, the therapist would sit Emma up and let her work on using neck muscles to look around more and hold her own head up. They also worked with using her hands to comfort herself- bringing her hands to the midline, where they are folded over her chest, and playing with her hands in her mouth or sucking her thumb. I also think this was around the time that she began using mirrors and instantly loved them! She loves looking at "the baby" and often smiles or laughs at herself. 
Physical therapy worked with her a lot too in Orlando, as well as with me and Michael when we were there at the same time. That therapist would very gently move Emma's hips and legs to practice them bending properly in different directions. She showed us how to help calm Emma down by placing our hands on her and taking deep slow breaths. The first time I showed this technique to Michael it worked magically and he was very impressed! ;) 
We were surprised when Emma was also assigned a speech therapist in August since she obviously wouldn't be talking any time soon, but we learned that speech also helps with oral stimulation and swallowing so she could later learn to bottle feed. They were not able to do much with speech because that was around the time they said she needed the G-tube for feedings and had the feeding tube taken out of her nose. She got the G-tube placed at the beginning of September. They did a test the day before where they put dye in her mouth to see where it goes. Unfortunately hers went down her trachea and into her lungs rather than down her esophagus. A couple other times she would accidentally get condensation from the ventilator that went down her trach and she would instantly turn red and began coughing. One time she quickly passed out because of it. 
As for the therapies in Ann Arbor, Michigan, it is interesting to see the different things they work on. Granted they couldn't do much in November for Emma in Orlando because she was still passing out every day and sleeping a lot of the time. But with the higher vent settings in Michigan, she has not passed out in 11 days -hooray!!!- so the therapists have been able to do more with her.
Physical Therapy would lay her flat in the bed and work on her rolling from side to side. She can't roll over all the way yet because of her trach and stomach prolapse where the G-tube site is. They first had her turn her head by getting her attention with her circular mirror and moving it to the other side, then giving her a small nudge. She kicks her legs so much and if she kicked in the direction that they wanted her to roll, the momentum of that leg would roll the rest of her little body. The Buddha belly helps too! They also sat her up straight and held her head up or would scoop Emma with the therapist's forearms against her back and then she would lean back so Emma was upright more. She fell asleep during that part on Thursday. One day (they have come twice a week) they brought a baby table that they were able to lean her over on to stretch out and work different parts of her body since Emma is almost always on her back or left side. A couple times per week she gets tummy time, which is completely safe due to her breathing through the trach. 
Occupational therapy came in on Monday and Friday this week. Yesterday she worked more with sitting up and rolling Emma on her right side. That side is a little weaker due to the right upper side of her lungs not working well. She did some massage type moves to help relax Emma's shoulders since she tends to hold them high. The therapist also laid her on her left side with a roll under her armpit so she could learn that she needs to support herself with her arms. Then she laid on her stomach with a roll under her chest and held her head up while working on tracking with bells. Emma has tolerated the therapies very well when she's not falling asleep. Or pretending to fall asleep. Sometimes she seriously opens her eyes once the therapist walks out the door.
The speech therapist gave us a nifty tool like a toothbrush to help get Emma used to having objects in her mouth such as a spoon in the future. One side has raised lines and the other side has bumps. We just have to practice with it in her checks, on her tongue, and against the roof of her mouth. Michael and I have done it twice for a few minutes without the therapist and Emma did great! She even laughed a little bit. Tonight I practiced her sucking on a pacifier that was dipped in formula and she held her cheeks together and chin up as instructed which helps her mouth get the swallowing reflex. I wondered recently if Emma's swallowing reflexes have improved at all, so the speech therapist in Michigan says we can do more trials for it next month when she's healed from her surgery. 
Everyone will try to come back on Tuesday (the 26th) for one more round of therapy since Emma is having her big surgery on the 27th and won't be able to do anything for a few weeks -or more?- after that. She's a fighter though so I bet she'll be back to smiling and kicking her legs around by that weekend! The Mott Children's Hospital also has Cupcake Therapy every Friday! But really it's just an excuse for everyone to decorate and eat cupcakes. We've done that twice so far. ;)