What now

What do we do now? 

That's the question I asked his doctor today (his temporary fill in doctor since his regular is on leave).

Karsn has been on robinul for his drooling for a week now, we had a brief thirty minutes of no drool the first day and that was it. Drooling like normal, which means back to the horrendous rash. So, I called the doc. After a good 15 minutes on the phone with him, there is nothing more they an do. What do we do now? Well,I contact his doctor at Shriners to talk about Botox. Yep, that's right Botox. I know very little about it, but that's the next step. Time to research.

My poor little man. I wish he could catch a break, I was really hoping he could be bib less for his birthday. Sorry little man. I'm working on it. We'll figure this out.

*sigh* feeling frustrated and very heart broken. I want him to stop itching! I want him to stop bleeding! I just want the drool to be gone.

GO, GO, GO!

We had a good day yesterday filled with OT and speech therapy and the usual Monday run arounds. I love my Mondays. Karsen seems to respond really well to his sessions of OT with Tom when I'm not around. It's funny because I never thought I would leave him during a session until I realized I was doing more damage than good. Tom has been able to get Karsen to sit in a chair for a straight 45 minutes working on fine motor skills and involving his left hand. So Monday morning are my new favorite since I get one on one time with my oldest. Yesterday we practiced riding his bike. He loves that I get to give him 100% of my attention, and I love seeing him light up. After OT we headed home to meet up with Miss Colleen to have our third speech session. Let me just say what a huge difference a few weeks can make. Karsen has a clear yes and no and after yesterdays session he now signs Go! He did it three times at group therapy today. I wanted to jump up and down.

After I had spent countless hours of deciding what to do next with Karsen's drool we had decided to start him on a medication. It will help lessen the drooling. I never thought I would be excited about it, but after the worst rash last night I was ready. He was literally bleeding from his chin. Enough is enough. When we went to go get the prescription filled I was told they couldn't get the generic form (which means we'd have to pay out of pocket since our insurance wont cover it) and the name brand was on back order. Ugh! Seriously?! So, I decided to call around. Well, wouldn't you know another pharmacy carries the generic and can get it tomorrow, the name brand is available now. Interesting. Not really sure why I was told otherwise, but I am glad that I searched around. We will pick up the meds tomorrow and start them first thing. Yay!!!! (Insert happy dance here) Maybe I wont have to wash so many bibs!

I cringe just looking at this picture. Here is how truly bad his rash gets. Not sure if people really believe me when I say it's the worst drool rash I have EVER seen.

 

Hard at work at speech therapy.

I take that back

Earlier I was talking about Karsen walking and shooting for October, just in time for Halloween. Well, I take that back. After spending some time at a friends house combined with this morning, I changed my mind. I'm thinking it is going to be a lot sooner. 

Yesterday, he took four independent steps, lost his balance so I helped him gain it back, four steps again, then again, and again! What?! So this morning I put him at the end of the hallway and he decided to do this....

He's pretty amazing, I'm one proud mama over here.