justin has been a busy boy this month!
we recently "fired" our in-home PT and requested a new one through early intervention. i've always kind of had an issue with our original and at the last appointment we had with her, i realized she is just not working for us anymore. i talked it over with pretty much anyone who would listen, and everyone had suggested to request a new PT. the only thing holding me back was guilt. i felt so bad for wanting to fire her, because i knew she had no idea how much i dislike(d) her. i know she cares a lot about justin and his progress, but i felt like she wasn't doing her job. it had even got to the point where she would cut his appointments short if he was beginning to get fussy. of the 18 months we worked with her, honestly, she was only here on time TWICE. and it's not just 5 or 10 minutes here or there... i'm talking full 30-45 minutes late. every appointment! i couldn't take it anymore, so i finally talked to our nurse through EI. she could see how unhappy i was, so she agreed that we needed to find someone to work with us.
since then, we've had our new PT maybe 3 times so far and i think she is great. she's such a breath of fresh air! i love her techniques and her suggestions. i'm really glad we made the switch for him. i feel like she's very positive. she actually made the comment at his last session, "wow! you can really see he is motivated to walk!" i almost burst into tears! it's just nice to have some new people enter the picture to see what he can do. i hope this is the last time i have to "fire" a PT, but i know that i have to do what is best for justin, and we just weren't getting what we needed from our first.
we are still going to dupont twice a week for PT. he has been working with a rifton pacer gait trainer and it is really great to see the improvements he makes weekly. in fact, last week, he just took off! he didn't have anyone pushing or pulling him. he just started taking his own steps. he walked a complete circle around the gym, which is about 100ft (per the PT). TWICE! it was incredible! we are looking into getting a walker or gait trainer for home, and i am so excited!! i can't wait to have justin outside with madi and tyler when the weather breaks. i think it is going to be a big motivator for him to see his big sister and uncle outside, running around. and giving him a chance to tag along will be so exciting!
in december, we had a swallow study. it was determined that he was aspirating thin liquids. we were quite disappointed, but it explained a lot. we were then scheduled to have an MRI to make sure they could find a source, whether it be a chiari issue or a shunt issue. the MRI results came back as normal. nothing had changed since his first MRI (8 days old). no new issues were reported, so we didn't have to change anything as far as his liquids and the thickener.
then, justin had a feeding evaluation last week. everything looked good. we are still having to thicken his liquids to a honey thickness, but the lady we met with suggested that we make a goal to have him down to nectar liquids by the time of his next swallow study, which should be sometime this summer. this evaluation was also to rule out additional speech/feeding therapy. we don't have to have anything more than our weekly appointment through early intervention.
friday, we had a PT appointment at dupont and our therapist had asked us if we would be interested in allowing justin to be a "demo baby" for a big conference the PT's are having at the end of the month. i will get a packet with more information, but the short version of it, and the only thing i know so far, is that a big, huge, world known PT/presenter will be doing a 3 day conference. they would like to use some of the patients at dupont to demonstrate a few things, and they want to use justin. i'm pretty excited about it!