Therapy begins
The day after Easter, Evan had his first cardiologist appointment in a month. It is abundantly clear that Evan is growing more and more aware of his surroundings. Even from the very beginning he has been an extremely observant child. We heard so many comments in his first week of life that he looked much older, alert, and serious than his peers. During every cardio appointment the nurse takes an EKG. This has not been a problem in the past but this time once she even put the little electrodes on his chest he started crying. I guess it comes with the age tho and we are reaching that point with him. His doctor did not hear any murmur or leaking from his valves so that is great! Evan weighed in at just shy of 20lbs, despite still puking a decent amount, so she upped a couple of his meds due to his increased size. Dr. Dommer wants to have an echo done but due to his past fussiness with them he now has to have a sedated echo. It’s a much bigger production involving the pediatric sedation team and needs to be scheduled for another day for ~ 2 hours. So much for the easier times… I knew these days were coming when everything gets to be much more of a handful.
Evan has begun his weekly OT appointments every Tuesday. We did some decent progress last week and it was awesome to have Nana (Will’s mom) there so she can get in on the at-home therapy practices. We have to do some sensory touching on his face and, if allowed, some gum massage. We should do this frequently, like every diaper change, but make it a fun experience and stop when he wants to. (this is what is being used on him in the picture). Today tho, his therapy appointment was much different. 
Very fussy and irritated. I thought he was tired but his mouth might just be too tender. Evan is starting to get his top teeth so his gums are a little sad (one tooth is a little faster than the other). You would think he would like to chew on things but really he chews on fabric toys or blankets – no plastic. He will gnaw a little on his nuk brush and Angie tried to get him to use a tri-chew, which was moderately successful until it was jammed down the middle of his tongue instead of along the side of his cheek/gum and he started to gag and barf. Our new at-home treatment is to also rub his lips and try to pinch them together a bit to help stimulate the muscles that are used to pull food off of a spoon.
Tomorrow (Wednesday) Evan has a PT evaluation to see if he needs physical therapy. He could probably benefit from a couple sessions as I know his arm/chest muscles aren’t as strong as they could be (surprising to no one). Otherwise Evan has been doing great jumping at home and the other day he even moved his walker a little bit so this shows great improvement in the use of his legs.
Other than that he has been a fantastic little boy. We benefited greatly from some mild weather and took advantage of as many walks as possible. Although he still uses the infant seat in the car, we decided to put the toddler seat on his stroller to see how he would like it – plus it will allow us to always have the stroller set up. He does pretty well by kind of leaning to the side but I think he likes the better view this seat provides him. Even better, we can practice using this seat before the March of Dimes walk on May 5th. If you would like to join us in walking or donating, just give us a holler.
