The failing to keep up with Sam’s journal/blog/whatever we want to call it these days keeps up.
I guess life is moving to fast or maybe I am losing interest in writing and well the lack of time in front of the computer. I hate typing on my phone. I already struggle with good writing as it is but then trying to blog while on the run makes it even more difficult.
One day I will be better.
Maybe I am falling into that world of other preemie moms, once you get past that magic or not so magic age of 2 years old you don’t have much else to share? I mean you are past the preemie issues and well in Sam’s case onto a whole new set of issues. The struggle of therapy and seeing other specialists for things they don’t know if they are *blame on prematurity*
I don’t know…
Maybe it’s the winter funk and maybe it’s me still trying to get my body figured out. They are messing with my thyroid meds so I am a mix of crazy tired at times to crazy anxious to crazy awake.
Ah such is life…
Anyways, Sam, this all about Sam anyways.
Therapies overall I guess you could say are going well.
In PT, he’s all about the walking still and tries to walk up the stairs at the clinic. He can start it by himself and then needs assistance. He likes to do it sideways so he needs help and more work on forward walking.
He struggles a lot with going down. Sheila thinks/feels he lacks confidence in himself.
We are also working on trying to get those stomach muscles to active too.
We got the office word that he pretty much can kiss the AFO’s goodbye! I am keeping them for his memory box that I have yet to really put together. I have a bunch of things from the early days to know that I want to box up for him to look back later on in life and see how far he has come. That lil dude has a lot to be proud of.
In OT they have spent the last few sessions doing the Peabody testing. I forgot to ask today what the outcome of that was. He seems to really like the student Annika but still isn’t sold on Julia yet.
In ST, we are in a odd place I guess. Miranda doesn’t have a lot of time to work with him on feeding and communication. We do a little of both though depending on Sam’s mood.
He recently had a swallow study that has me very concerned as well as Miranda. I will have to write a separate post about that when I have time but if I don’t basically the run down..
–it was done kind of wrong. They should have used different thicknesses and she didn’t. She said to stop thickening his liquids. Miranda disagrees
–He has soft palette issues
–he has eppologitis (sp?) insufficiency which wasn’t noted on the report but Miranda saw in the video. I guess this could be due to his seizures so we have to learn techniques to help him. I guess it’s something that Miranda can’t *fix*
–he has delayed swallow, some penetration which puts him at risk for aspirtation but they said he is not at risk in the report.
–refering to a ENT and GI doc
–fluid in his ears could be reflux. I knew his reflux was bad but didn’t think it was that bad. His pedi disagrees that the fluid is reflux though.
So yeah, that’s life at the moment.