Wednesday, March 19, 2014

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.

Friday, March 14, 2014

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.

Thursday, March 6, 2014

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.

Thursday, February 27, 2014

Check up with Specialist

Every time I go to Miami Children's to see Dr. Grossman  I always feel over emotional. It's so hard hearing what he has to say. Most the time I usually know what he's going to say beforehand and today I knew part of it. Camryn needs more botox. She has tightness under her arm in her muscles there and her peck muscle. This is preventing her from getting over head. Dr. Grossman said she may need three more botox procedures in order to correct the muscles from working the wrong way. She'll probably have it done in the next three weeks. After leaving today I really felt defeated. He said she's regressing a bit because she has grown so much over the past couple of months. It's so hard as a parent who has put so much into Cam's recovery to hear that. I felt completely beaten. For the first time ever he said in black and white that she will never have 100% function in her arm and that this is a lifelong injury and she'll need lifelong therapies and procedures. I guess I have always known that but today it really hit home to hear her doctor say it. It felt so real. Who wants to think their child will never be 100%? Especially, after all the sacrifices my husband and I have made for her and all the hard work we have done. I know, she wouldn't be where she is today if we hadn't but it still hurts.

Some great things that happened today were that they are finally starting a support group for Erb's Palsy at Miami Children's Hospital. Two things, I wish the hospital were closer and I wish this had happened 2 years ago. I'm so thankful that other parents will finally have the support they need. This will be the first type of group in South Florida so it's very exciting. I will try and be a part of it but it's hard with work and it being so far away.

Another thing that is in the works and beginning stages of planning is the start of an annual picnic for South Florida families that see Dr. Grossman. I think it will be so nice to see other families in our area and be able to network and have a good time with them. I can't wait to see how all the children interact with each other too! Maybe Cam will make a lifelong friend :)

That's it for now as I'm completely wiped from chasing a toddler around all day.