A Very Long Day....

Today was such a long day. Camryn had her 4th round of botox and it wasn't scheduled until 10am. We left for the hospital at 6:30 and were there by 7:45. We finally went upstairs to pre-op at 8:45 and Cam started getting fussy. They gave her something to make her more comfortable and she almost threw it all up :(  The procedure went well but Dr. Grossman wasn't happy. She was super tight under her arm even under anesthesia. He wants us to see Dr. Price next time we go and he wants us to come soon. They said they may even have to do another botox soon. Who knows it may even mean a secondary surgery. After the procedure Cam was a hot mess. She cried for almost 2 hours. We finally left and drove home and almost made it the whole way home without her throwing up. Literally, as we turned the corner to our street she threw up all over me. Awesome....Cam didn't nap at all today so we decided to put her down a little early so we could get a chance to process everything.

Yesterday and today have been two of the harder days I've had in a really long time emotionally. Yesterday, I was nervous about today and today I was upset about the outcome. It's really hard to think that with all the hard work we've been doing it's not really making a difference.

I'm exhausted

 After working for a while and probably being lazy and see a lag in Camryn's progress I've gone into overdrive with her therapy. I know I can't get everything done every day but after a long day of work and getting up at 5 I do therapy when we get home. We get home by 4:30 and between 4:30 and 6 I'm trying to get in the constraint and STEM Machine at the same time. I also want her to use her elbow splint. Her school is putting on her elbow splint during the day too. After finally finishing therapy with her and having dinner we bathe and get ready for bed. At around 6:30 I come downstairs and get dinner ready for by husband and I. I'm exhausted....I feel completely drained...Next week is our botox again and I'm hoping from now until next Wednesday Camryn stays healthy.

3/6 and CAMP UBPN

As it stands right now Cam's botox is scheduled for March19th. Hopefully, we won't have any issues with the insurance company. The first time she had the insurance company wouldn't cover it because they said it was experimental. It was a lot of money and we had to pay some of it up front. Cam has a different insurance agency now so hopefully that won't happen. We are still having issues with her current insurance company with paying the hospital bill from her last procedure. We know they are responsible for paying but the hospital keeps sending us reminder bills that the insurance hasn't paid their portion yet. It is all so frustrating. It baffles my mind that if my husband and I didn't work and try to provide for our family that we would never have to worry about this because it would be covered by medicaid or social security which we don't qualify for. Anyway, I think I'm getting pretty run down and coming down with something, hopefully Cam doesn't get it or hasn't given me something that she had.  (hoping it's bad allergies)

Another thought I've just had. Has anyone been to CAMP UBPN? I want to go with Cam and my husband but we would have to fly out there and rent a car etc...It can be costly. In my mind it looks like a great experience to meet so many people who have gone through what we are going through etc. I'm all about advocating and networking. My only issue and hesitation is that I don't know if I can emotionally handle it. Just thinking about seeing other families struggling the way we have makes me upset and to see all the different prognosis scare me. (I know every child with a BPI is different) I just wanted to know other people's thoughts on going or if they have gone and if they think it's been worth it.

Stem at Therapy

Since I started going back to work I've had a hard time trying to get everything I need to do with Cam in a day done. I decided it would save time and get more accomplished if we started using her stem during therapy sessions. Day one was a success. Camryn's amazing daycare has also been stretching her during the day and will start splintig her with the elbow splint. We were so lucky to have found discovery kids experience in Hollywood. They have been amazing and so accommodating. 

Learning What Hands Up Means

Cam has finally learned what Hands up means. Though she can only get her arm up a little past 45 degrees against gravity it's a step in the right direction. My husband put a toy she wanted over her head today and she got really high! He couldn't believe it, of course her arm was a little bent but again we are moving in the right direction.

Has anyone had experience with things taking longer to heal on their affected arm? Camryn's bug bite is taking forever to heal and was just wondering how common it is.