Frontal lobe 

So my previous post lacked in some information. My computer was dying which made it hard to type. 

Anyways, one thing I wanted to write about was the fact of where the brain malformation is and Sam’s delays. 

Being it is the left frontal lobe it explains as to why Sam’s has the struggles he does.


So with a lot of therapy which he already gets, he can learn strategies on how to deal and cope with these issues and thus be able to function.


Time for a long overdue update

I haven’t written in here much lately and really haven’t written in my other blogs either. I am not sure why but I do feel kind of bad not keeping up with the kids blogs. I really wanted to have something for them to look back on.

I guess long story short, it has been busy, stressful and rather overwhelming at times.

Overwhelming is how things have been with Sam of late. A lot of wondering, guessing, doctor visits, tests to try and figure out what is happening with him.

Recently, he had an EEG done to see how his seizures were doing, along with a MRI to run out an possible tumors (there was a lot that maybe he was having headaches and maybe that was due to tumors being with his PTEN he is at higher risk for them), and then had an ABR hearing test.

The good news was the hearing test showed things were normal. So that was nice to hear.

The EEG showed no seizure activity which on the surface is a good thing but being he was coming out of sedation that can affect things. So who really knows if there is any or not.

They typically don’t sedate for an EEG but with Sam, that’s pretty much the only way that you are going to get him to sit still.

Now the MRI.

That was a rather conflicting in terms of how things were explained.

Thankfully after a long wait at the genetics doctor, we got some answers in a way and also some direction of where to go from here.

Sam’s left frontal lobe of his brain is malformed and there is scarring from seizures in that area. The doctor showed me on the MRI how it looked and how the right frontal lobe looked. The right part is *normal*. in terms of how it should look for someone Sam’s age. The left does not look like it should. I guess this is consistant with PTEN and it was explained that basically his brain did not form right when he was cooking and then being born early did not help.

She referred us to a new neurologist to see what her thoughts on Sam are along with trying to figure out if his seizures are not under control.

She also believes he has headaches so we are working on that piece.

She has is working on getting him higher up on the list for neuro psych testing.

I asked the genetics doctor about what does this mean long term for Sam. She can’t tell the future but she belief is that he will need some sort of support long term. I asked his OT tonight in plain English what would that entail. She  gave me some ideas. I feel better I guess about how OT explained it but it’s still overwhelming and a lot of emotions going on.

In the end thought, you know Sam is Sam , one hell of a lil guy who has kicked butt and took names since birth. He will continue to do so and show the world you can’t stop a Penwarden.


I think he thinks he owns the joint


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


Light therapy week again

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


GI stuffs

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.


Light Therapy Week

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.


Tubes, ABR, and GI testing

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.


Busy busy Monday

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.