Camping with a special needs toddler

Yikes! That about sums up how I felt camping last week. We have a tent trailer which makes things easier with kids but doesn't change any of the issues outside of cooking and sleeping. (Not to mention our pump went out so showers didn't happen either). All in all we had a fun time. We had a lot of extended family there who were all a huge help. It made it a little mini vacation for me. I got to go kayaking with my mom and cousin, then for a morning trail run and kayaking again with my hubby. Those moments were just what I needed. 

Since Karsen is still not walking we had to really embrace the dirty part of camping. There was never a moment he wasn't covered in dirt. We had constant outbursts, tantrums, and boo boos to deal with. It was hard, no other way to put it. In fact, Kuper and I both agree we will not be camping solo until Karsen is walking. He definitely got his dose of sensory play while we were there, and I think the big crowd of family was sometimes too much for him, but Karter was having the time of his life and I think he was thoroughly enjoying the attention he was getting from all of our family. 

It was a little hard on me to let people see (yes, even family) what Karsen is like outside of short visits and this blog. Too see the real tantrums, the real frustration that stems from the lack of communication, frustration he and I both expirience. Raising a special needs child is no picnic, its not all the smiles and giggles, it can getbe down right dirty and ugly but it sure is rewarding when they hit milestones you've been working on for months, sometimes years. 

Last week was also Karsen's birthday. Two years old, when did this happen?! We had a small party for him at a friends house. It apparently wasn't small enough. I caught him several times trying to escape the crowd and go play solo. He just doesn't handle large groups of people well. It was a hard day for me. It took him throwing a fit and melting down for me to realize I wasn't throwing this party for him, I was throwing it for myself. I wanted things to be "normal" for him and in the process I made it miserable for him. Karsen has his own normal, it's taken me along time to come to terms with that, in fact I think I am still trying to come around. At what point did throwing a birthday party become such a necessity? When did we are start feeling like we need to be the Pinterest mom and throw these huge parties when really a toddler could care less if there is enough puff balls, streamers, or cupcakes frosted the perfect way. Lets be honest, they just want to play with toys, open presents, and eat copious amounts of sugar. So, I learned my lesson, I am taking cues from my boys. Doing what they really want to do for their birthday, it's only fair. I'm no longer forcing them to form to what they "should" want to what they really want. Embracing who my kids are. It was a big mommy fail on my part, but I'm willing to admit it and make it right from here on out.

Today Karsen signed music. His signing is really starting to take off. He also got a new thumb splint today, bright green to match his newest pair of AFO and SMO's. (the kid has gone through three pairs now).  We also have an appointment tomorrow at Shriners to see what our other options are for the drool. I'm going in guns loaded with all the pictures of how bad Karsen's rash can get, let's hope they listen. Say a little prayer for us, we really need a solution to this problem.

Here's a picture of his new thumb splint, along with a sweet shots of my sweet boys, they truly know how to melt my heart and make my bad days good.

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.