Tuesday, June 30, 2009

My last post as a 26 year old


I promised I would do a better job of updating this blog, but I am already failing miserably!! But nevermind the self pity, let's get down to business.

Violet has had her DOC band for nearly two weeks and is doing awesome with it. The first week she had a red spot that merited an unexpected trip back to charlotte. That was an unhappy surprise. A simple phone call on a monday morning at 9 AM and we were back in charlotte at 2:30. I had to find someone to cover my shift at work and then, find a buddy to ride along. It all worked out though and it was a relatively easy trip.

We had our first normal visit to CT Friday and Violet's head grew 2 mm in a week. I don't know why I was shocked because I know she's growing fast, but actually seeing the difference was cool. We also got to see the model of her head and there is already a difference in her head shape. I thought I was just being hopeful but her therapist, Chalawn, confirmed it!

Friday, Ben was perfect in the car! He's never been that good. It was awesome!! So, I was a little shocked when we got home from dinner Friday night and checked his temperature. I noticed he felt a little warm earlier in the day, but I just assumed it was from the near 100 degree temperature outside. When I was changing him for bed, he still felt really warm. His temperature was 102. He was acting fine and didn't have any other symptoms of sickness. To be on the safe side, I took him to the pediatrician's office Saturday morning. He did a strep test because he said his throat was raw. Negative. He also checked his ears for infection. Negative. The Ped's guess was just a virus. However, he failed to mention that scooping the wax out of his ears (GROSS) could cause bleeding. I guess he didn't want to sound like an alarmist. SO, there was another surprise when he woke up from his nap and there was dried blood all in his right ear and all over his sheets. A quick call to the triage nurse and we felt much better. Apparently, that's not uncommon and perfectly ok as long as the bleeding stops. Ben was not very happy with me when I tried to clean his ears out with cotton balls, but I triumphed when I turned it into a game. I would use a cottonball and let him throw it in the toilet. That kept him coming back for more.

Tomorrow is my 27th birthday and true to my complaints about getting older, we're not celebrating until Thursday. Put it off as long as I can, right? Violet's appt is scheduled for thursday so, David is taking the day off so we can go as a family and do some fun things. I'm thinking Cheesecake Factory, IKEA, and Concord Mills. I'm really looking forward to it and especially excited David will have a 4 day weekend. I also can't wait to see how much Violet has grown this week.


(sorry the picture's fuzzy. I took it with my phone. We haven't uploaded any from our camera to the computer yet.)

Tuesday, June 2, 2009

Plagio Saurus

One of the most helpful things I have found since we started this adventure in correcting Violet's head shape has been reading other parents' blogs about their experiences. I am hoping that when it is all said and done, our story can help encourage another parent going through this ordeal.

We had our first appointment with Cranial Tech in Charlotte last Tuesday and it went well. It was a long day and a bit overwhelming, but I'm glad we're on the right road. I was happy and blessed to have a friend who was willing to ride with me. Glenna was great company and Her GPS was a great help too!

Right now we are waiting for the preauthorization from our insurance so, we can go back to charlotte and get V fitted for her DOC band. After she's fitted, it will be 10-14 days before her band is made and shipped. The therapist we saw Tuesday told us she would likely need a second Band, but she also said that would be a decision left completely up to us. I asked how long one would last and she said each band allows for 1 1/2 to 2 cms of growth and at Violet's age, that would probably be around 2 1/2 months, give or take a few weeks. At that point, we would need to decide if we were happy with the results from one or if we wanted to continue her treatment. The biggest holdup I could see us having is financially. We are going to be paying cranial tech $2,000 when we go to pick up her band and then, anything that insurance covers will be reimbursed directly to us.

I've decided to have custom stickers made and am very excited. I met a very sweet woman from Arizona online who has her own business making vinyl decals. Her daughter had plagiocephaly too and she has made and sold custom vinyl decals to other parents. Her website is www.blingyourband.blogspot.com. Take a look! The stickers are awesome and have had great reviews. I decided this was the best way to go. I love the way the bands look painted, but from what I understand, it is a lot of upkeep because the paint chips. These stickers are pretty and durable so, I think this is a better avenue than just going to hobby lobby. And since Violet will be in her band 23 hours a day, we want it to be as stylin as possible!

So, that's where we are now. As soon as we here from BCBS we'll make our next appointment with Cranial Tech and I'll have more to share!