Therapy

We are really finding where we fit for Sam’s therapy needs. I always stuck with Fairview because they knew him, his doctors are in the system there, etc… I hate how it went down but I’m glad we pulled him and found Capable Kids. Speech and OT are wonderful and a good fit. Co treating together I think/ feel with get him going on speech . Last eval for services was PT. I wasn’t sure they’d even say he needed it being Fairview was putting him on a break. She feels he does specifically to get his core strength up. The low tone is the worst there. She feels getting back in the pool would benefit him. Their pool though is in Chaska. She is thinking getting him in there in the summer. Till then she suggested getting him to the Y pool more which honestly I have slacked on a lot but yeah life… stupid cancer, doctor appointments up the ying yang.

She seems like a good fit and has a grasp on Sam which is hard to have right off the bat. Heck Sam even held her hand walking to the gym from the treatment room. He fights holding most people’s hands.

Bonus about the PT… she’s a huge Harry Potter fan.

#sam #pt #specialneeds #capablekids

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It’s been a very long time

I didn’t even check to see when I last used this.

Today I’m going to attempt to use this journal along with my other one for my oldest.

Sam’s new OT started this today and here’s to hoping it works. He definitely seemed calmer in therapy after she did it

6 years old

Oh Mr Sammy Sam

It’s been another year since I posted. You turned 6 a few days ago.

6!!!

It’s cliche but time flies. You are becoming such an amazing little man. You are making progress developmentally and getting quite the attitude.

You just finished summer school and in s few weeks will be off to the big bad world of kindergarten. We are excited to see where this takes you.

We love you 💕

And I need to get back to writing in here

5 years old

It’s been awhile…

I guess as time goes on, I don’t blog anywhere like I used too. Channeling stress into pictures I guess

Anywho, Tuesday Sam turned 5 years old.

He’s still in all the therapies and we still travel to Cleveland yearly for the study he is in. 

We opted to hold him back and he’s doing another year of preschool.

Not much else is happening 

Defeated…

Well feeling that way and wondering if it’s worth appealing being we don’t seem to have a leg to stand on.

I was suppose to have a meeting with Social Security for Sam today. About 2 Hours before I was going to meet them I got a call about income. In previous conversations and paperwork I filled that out.
No one ever mentioned I make to much.
Turns out I do by a hair.
Defeated that his medical needs comes down to money 

Focal discognitive 

Today at pool therapy, Sam got in the pool all excited like usual.

He petered out rather quick. I wasn’t to surprised as his sleep has been pretty bad lately to the point possible sleep apnea is on the table again.

Even when Sam’s tired he can be easily engaged in the pool. It’s his space, what brings a smile to his face.

We tried different things to get his attention. Finally I tossed a ball at him and in my bad aim narrowly missed smacking him in the face. He didn’t move, he didn’t bat an eyelash, etc.. He just didn’t react .

About 2 long minutes went by of Sam! Sam! And touching him, etc. He finally snapped out of it. 

Then he was just foggy/confused for about 30 minutes after.

Being he does not have a neurologist local, I called the Mayo and Cleveland Clinic.

Mayo said he had the seizure noted above and to increase his meds.

Cleveland wants another EEG and not comfortable with increasing dosage. He would recommend a switch to a different seizure med. 

.. Cleveland is sending an order for another EEG to me to get done here. Then send to them. 

I don’t know..

It’s been a long time

I should go back and look to when I last posted.

Life has been crazy but that’s nothing new right? Life with Sam keeps us busy.

So, what’s been happening with Sam?

–He started pool therapy. It wasn’t to consistent but now it will be. I am not super sure how it’s all going to work when school starts but as with everything we make it work.

–He’s doing well in the pool. It’s the only therapy that he doesn’t fit and actually works without getting super tired out.

–The AAC device we trialed for him didn’t work so well. His ST is suppose to be writing something up to try and get a Ipad ok’ed as his dedicated speech device. He does well with the one at ST but the one at home he’s now used to using it for some speech games.

–He finished his first year of preschool and at the end of July 2016 finished his summer school. He will be starting school again on Sept 12th.

–We will be heading back to the Cleveland at the end of January 2017 to visit the Cleveland Clinic again.

–He turned 4 on 8/1. Crazy that my little 2 pounder is now 4 years old.

That’s about it. Hopefully I can start writing in here more.

24 hour EEG

Monday into Tuesday was Sam’s EEG down at the Mayo.

 

The purpose of the EEG was something the neurologist we saw in September of 2015 wanted but after our rather bumpy visit and lack of PTO time at work, I opted to try and find a neurologist up here which we failed at finding.

 

Then we went to Cleveland and the neurologist there wanted one to compare to his others to see if he needs to be on the medication.

 

Long story short, Sam has never shown a clinical seizure on his EEG’s. He has “hard spikes” which put him at high risk for seizures or at the neurologist we saw Monday and yesterday put it, he has “the fuel” to have a seizure at anytime.

 

The 24 EEG from the Mayo showed the same/or similar to the others from the U of M and Gillette.

 

We won’t have a hard answer/decision until I get the images and reports from the Mayo to send to Cleveland. Apparently it’s “cleaner” for me to send them to Cleveland according to the neurologist we saw. Personally, I think they just want the 25.00 fee that they charge you if you ask for it rather then institution to institution which usually doesn’t require a payment. I was to tired to fight her with yesterday and just wanted to get home and in the end if I send it at least I know they will get it. This stems from a call from the Cleveland Clinic telling me that the Gillette and the Mayo told the CC that they have no images of Sam in his records and the U of M won’t get back to her.

 

Anyways, enough of the tired angsty mom rant there…

 

Some things I learned:

 

– these hard spikes are typical of kids with the brain malformation that Sam has.

-these spikes aren’t present in deep sleep which is not typical but a good not typical so yay for that.

-They couldn’t tell me the long term effects of seizure meds on a developing brain because there is no hard research and you get into theory, etc.

 

Which leads me to, if it was up to Mayo, the neuro we saw said that in the end it’s up to Dan and I. It’s what do we feel comfortable with:

 

–stopping the seizure meds and just being aware the risk for seizures is more then on the meds.

–he will still be at risk for seizures but the meds lessen the risk to just a high risk then the higher risk without meds

 

She said Sam tolerates it and the meds seem to help with some development. So she thinks it would be fine to be on it.

 

We aren’t making a decision until the CC sees the images and records.

 

This is just a bit of an overwhelming decision. So much *unknown* and then add into other things like the medication trial he can be a part of in Cleveland but that can’t happen till 6 so that adds another possibility. Keep him on the keppra till these med trial? Take him off the keppra and monitor for seizures and be prepared to do more EEG’s if things go wonky? Keep on the keppra.