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Therapy, Swallow Study, to keep writing or not?

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.

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Therapy Round Up

As I have been recovering from my thyroid removal surgery, it was back to all of Sam’s therapy.

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In speech, it was all about making choices. Miranda wanted to try using the iPad with yes and no. She couldn’t figure it out well so used a different program on it. Sam sort of got it.

PT was all about walking

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Then school came by. She worked on some speech and actually got him to say Bub Bub for bubbles. Then more walking.

In OT, a lot of playing and trying to get him to try in different ways. He struggled with it.

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speech, physical and occupational therapy

Despite my thyroid surgery, life is trying to get somewhat back to normal.

Sam had all of his therapies this week already except EI as the school district has this week off.

Speech was a lot of work with feeding

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Miranda was pretty happy with his chewing once she did some exercises. He seemed to eat without choking issues and she is working on cup drinking with him.

In PT , it was all about the walking

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The boy is on the move. I have more videos I need to share.

He went to OT today and worked with Julia . Paige is off to China so we will be seeing her until January.

I really like her and Sam seemed receptive to her.

Today was a get to know you session.

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More walking and 2 years 2 months old

Life has been insanely crazy so I am horribly behind here.

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Nothing to new has been happening.

He finally walked again in PT. He won’t walk at home or in OT.

ST wants to schedule a swallow study ( ok I guess this is new). She is concerned about some aspects of his eating and drinking.

And back on October 1st I should have wrote my 26 month letter to Sam.

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OT

Wednesday was a pretty productive session for Sam. He really just wanted to be on the move but Paige was able to redirect him so they played in the small gym and read a book too

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We talked about how next week is basically our last visit with her until January. We will be trying a different time and person while she is in China.

He ended on a high note almost walking

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Last week and the start of this week

Last week was a rough week for Sam with therapy.

He had a nasty cold and with his Keppra dosage going up, he was a hot mess.

Overall sam therapies didn’t go well and we canceled EI.

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The start of this week has went well though.

He did a lot of assisted walking in PT

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He was very vocal ( in a good way ) with speech and EI.

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Neurology and OT

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Back to Amplatz today for Sam’s neurology follow up. We hadn’t seen them in a while and there was so thought/ concern he was possibly seizing again so they decided to up his dosage

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We are suppose to watch him for a month and the touch base with his nurse. We may revisit doing an EEG as it’s been a long time.

He also had OT with Paige and did quite well playing with different toys and playing with another person (Paige)

I think he could have played the drums the whole time

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