...And Now We Wait

I spent part of yesterday calling Darein's endocrinologist to find out if she needed to go back on her Florinef that he took her off of about two weeks ago as she was craving water. We were supposed to watch her and make sure that she wasn't craving salty foods as this would be a warning sign that she was losing salt. She wasn't craving salty foods but had been craving water. I was kind of glad to see her craving water as it is good for her but was concerned as this was not the norm for her. His nurse said that he wanted Darein to go back on her Florinef for now. She had her labs drawn when he first took her off of the medication and had her lab drawn two weeks later. Her first labs he had back and I guess they were high but the nurse didn't know if it was high for Darein and her congenital adrenal hyperplasia. She said that since we had the necessary labs drawn to go ahead and put her back on her medicine so that I didn't have to worry about it and then he would look at her lab work when he received it and make further decisions from there. Darein takes Florinef for her CAH. Most children with this disease are salt losers. If your body loses salt you can fall into a coma the same as a diabetic or possible lose your life. If a child is born and is not diagnosed with this condition it is very likely that they will not survive so it is extremely important to watch her and know her eating habits as well as have labs drawn regularly to check these levels. I also asked the nurse if we would need to take Darein off of her estrogen since it seemed to be increasing her height and I was concerned that it might cause her scoliosis to get worse at a rate that was faster than what was desired. She said that she would speak with him and called me back today to let me know that he said that she needs to stay on it. She is not producing the hormone that she needs and there are many ill effects to taking her off of it at this time including problems with osteoporosis and other problems with her bones. Since Antley-Bixler syndrome is a musculoskeletal disease and we are finding more and more of her bones that are fused every year for the past two years, her bone development is very important.
Yesterday, I also called to cancel her appointment with her orthodontist today as we were scheduled to get her molds and xrays so that she could get her braces put on in two weeks. Because of the uncertainty of her scoliosis surgery and possible tests that might be needed we felt as though it would be better not to get started with the braces at this time. We will postpone starting her braces and therefore the facial jaw and nose surgery until we have her scoliosis taken care of as this is now our priority.
I faxed our application to the Shriners Hospital yesterday and called and made sure that they received it. After making that phone call I then called her orthopedic doctor's nurse and let her know that I had faxed this and she stated that she would get her paperwork together yesterday and get it faxed as well as make a phone call to them yesterday. She said that the office notes won't be ready until next week but as soon as they are done she will then take care of faxing that as well. I have the xray so we can hand carry that to St. Louis when we are scheduled for Darein's appointment. I asked her what the chances were of us getting in to the hospital and she said that every child is accepted and they only take whatever your insurance pays them and no out of pocket expense for us which will be something new and wonderful to our pocketbook :)
I looked online at the Shriner Hospital website and learned a little about it. It looks as though when we receive the phone call from the hospital of an appointment, we will go for a 3 - 4 hour visit with a team of doctors. St. Louis has 80 beds and is an orthopedic specialty hospital. If for some reason they are unable to help us then they will find a surgeon outside of the hospital to help her. I have heard many good things about this hospital and have asked all the questions possible, done my research and contacted the physicians necessary to coordinate any possible care so now we sit back and wait for an appointment.
On a different note, Toyota contacted me yesterday and they have received all the parts on my truck and have disassembled it and are working on it now so hopefully it will be back to us by the first of next week. Things seems to be going fairly smooth with the insurance company so far though they are trying to get me to pay for 1/2 the bumper since it was wrecked previously by Damein but so far thankfully they aren't being pushy about it and I talked to the adjuster today and told him we were already out money with the rental car for deciding to pay for the insurance through the rental company instead of using our own and due to the fact that my husband missed out on a whole days worth of pay to help me pick the rental vehicle up and take his mom's truck back to her. He didn't say anything more about it and so I didn't think that we would be willing to split the cost of the bumper with him. So hopefully, this won't be an issue and we get this all resolved and get our vehicle back before we have to deal with Darein's medical issues.
Darein's 4-wheeler is also almost done and so hopefully we will receive it back at the first of next week as well so we can get that issue resolved prior to her hospitalization as well. Of course, she is disappointed that we had a record high snow and she didn't have her 4-wheeler to ride or to pull her on the sled and she won't be able to ride it for quite some time once she has the surgery but at least it will be ready for her when she is able and ready to ride again.
Trying to focus on the positive and Darein of course has the best temperament possible and is doing incredibly well which is a blessing in and of itself. She told me that she doesn't know why I'm so worried because it can't be anymore painful or scary than her facial surgery and I was okay with her undergoing that surgery. I explained to her that the facial surgery is very worrisome as well but that it was the biggest surgery she would encounter that we were prepared for. We have been preparing for that surgery since about the age of 2 or 3 so we are a little more comfortable with it knowing that that was the only major surgery she would have. She has had about 7 or 8 surgeries to date but none of them have been anything very major, all minor routine surgeries so this is very different for us. However, knowing that she has a great attitude keeps me from worrying so much and keeps me trying to strive for the same attitude though you do have to realize that I am still a mom so I will never fully achieve that but I can at least try and keep my fears to myself and not voice them so much :) She never ceases to amaze me with how well she adjusts to so much. Of all things, she is mad because she doesn't get her braces now and she really wanted them so this keeps me laughing at her perspective on things and makes me more and more proud of the young lady that she is turning into each and every day.
Hope everyone is enjoying the weather changes as it is starting to feel a lot like Spring!!