Yesterday was Sam’s GI follow up.
It was a little iffy I guess if we were going to be seen as we were 8 mins late.
That’s a whole other story…
Overall it was a good appointment. Stay on meds as prescribed except for one where that will be bumped up.
See her in 3 months.
She thinks meds will do the trick.
Here’s to hoping.
I swear Sam thinks he owns Fairview Pediatric Rehab in Burnsville.
He kind of does though considering how often we are there.
Well, the first time in a long time Sam
had really great therapy sessions across the board.
In speech he did some imitation .
In pt, he kicked a ball all by himself. It took a lot of work but he made. It’s always such a sweet moment seeing all of his hard work start to pay off.
In early intervention he scooted forward a little on his riding toy.
It was a good Monday
Again this week Sam had a light therapy week and it was just odd as I think we all are trying to get back into the swing of things after his hospital stay.
He didn’t have ST as his therapist was out.
PT started rough but in the end fairly productive. She did note we need to work on his upper body strength .
Despite the holiday on Monday, EI came out at 3. Sam was very sleepy so it took a long time for him to get into the groove.
OT tonight was a mixed bag. It started rough then got better then got interesting as Paige put a compression vest on him. He was happy but just walked in circles.
Next week it’s back to everything and GI follow up Continue reading
So , we got the results of Sam’s GI procedures they did last week.
— colonospy looked good but due to his low tone he has a very slow moving colon
–endoscopy showed non specific mild chronic gastritis, which is common with some with acid reflux and probably from the ibuprofen we give him for pain. Lovely… Not sure what pain meds we can give him. Tylenol doesn’t help him.
— ph probe study came back showing ph levels of less then 4 which is bad.
So basically the diagnosis is he has an incompitant esphogeal sphincter . So the acid comes up and his reflux meds don’t help.
Plan of action is to keep prilesec in the am and add Zantac back on but bump it to 3 mls, he was on 1.6.
Then also add this laxative along with miralax to keep things moving. When they don’t move his reflux flairs up bad
We see the GI doc next week to assess how the new plan goes. If not going well then I am not sure what plan B is.
Why is it only Wednesday ?
I guess things could be worse and I am glad we are getting somewhere finally.
I just hate it took this long to get somewhere.
We asked a lot about seeing GI and NICU follow brushed it off, pedi brushed it off…
I know you can’t ask for an instant fix but I hate that all of Sam’s life has been wait and see.
This past week was a light week in therapy for Sam.
He had PT and early intervention. His speech therapist was out sick on Monday and then Wednesday we had to cancel OT due to his surgery.
PT went well and he wanted to walk a lot.
Early intervention didn’t go well at all as he was tired, fussy and didn’t want to do much of anything.
It’s been a very busy week or so in Sam’s world.
On Wednesday we checked into the U of M for his tube surgery and ABR hearing test. At the last minute a endoscopy, colonoscopy and ph impedence (spelling?) probe study. The probe study required an overnight hospital stay.
He busted out on Thursday.
Overall it was a fairly uneventful 2 days but he did pull his probe out once so they had to call the nurse who placed it while in surgery back to the hospital. It was hard watching that get put in. The first time they put it in while he was in the OR.
Speaking of the OR. It was odd going back with him and watching them put him under. I think having a familiar face helped though.
He really didn’t like coming out being knocked out. The recovery room was rough for him.
I can’t quite tell yet if the tubes are making a difference or not. They were not able to do the ABR hearing test due to the interference from the probe. I am not sure why they didn’t plan that stuff accordingly. They did do something called an AEO which ruled out severe hearing loss but couldn’t rule out mild hearing loss.
and now we wait for the GI results.
Monday was back to reality and full of business for Sam.
It was back to speech and physical therapy in the morning. He struggled a little in speech but in the end had a great session. He even has a new sound.
Physical therapy went fairly well too. After trying the compression vest in OT, they tried the one that came with his spio suit. After a brief freak out he was a happy Sam again. He seemed more motivated to do things with that added compression.
Then it was home till school came over. She worked with him playing with puzzles, some toys and riding a push toy. He actually was able to scoot back on the toy so that was new and kind of exciting.
The rest of the day he pretty much sacked out.
In the afternoon though, we had someone from Dakota County come out for a MN Choices assessment. So that means a lot of paperwork for me but that’s fine if it helps him. We are looking into a grant and PCA services a long with the worker wants me to look into SSI for him a long with getting him certified disabled which is kind of a hard pill to swallow for me. If it helps him I am all for it but just hearing the words you need to get him certified disabled is kind of a bit of a kick in the gut you know?
Tonight it’s back to OT with Paige.
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Therapy has been rough for Sam the last few weeks and no one is really sure why.
He just hadn’t been himself and either was meltdown with no way of consoling him or he just wanted to sleep.
So nothing really new to report in terms of therapy except for OT this past week where Julia tried a compression vest.
OMG, that seemed to make a world of difference for him. He really seemed to respond well to it and I guess I shouldn’t be to surprised being he did well with the spio suit in the past.
He doesn’t have speech or pt this coming week so hopefully OT will go well.