May: A Month of Celebration

May was quite a month full of celebrations. We celebrated my best friend's birthday, my birthday, my sister's birthday and my parent's anniversary. The kids were glad to be out of school and the end of the year events that went along with getting ready to be out of school. Shane took some vacation time to help do some work at his aunt's house and to be with me for my birthday and mother's day as well as to help move Damein home from college for the summer. Damein got his first summer job umpiring baseball games for kids 12-under. He is enjoying it though he is just getting started. Darein spent the end of May enjoying some free time before she has a busy June. Here towards the end of May her summer has already started to pick up though and proving to turn into quite a summer. She is easing back into her Venture Crew time at the zoo by attending a few activities and going to her monthly meetings. She has been doing good with her braces, though they are at the point where they are starting to become uncomfortable due to the expander pushing her teeth out towards her cheeks and causing some rubbing that is bothersome. We went to St. Louis to see her plastic surgeon this month and was told that she will most likely be ready for her jaw surgery next summer. Both jaws are turned and twisted in opposite directions. If we only have her top jaw done then her top teeth will be aligned with her midface but the bottom teeth would still remain off. It was suggested that we talk with her orthodontist as to if it was worth the risk or not to have the bottom jaw done. We talked about the fact that Darein would need to have her wisdom teeth taken out prior to the surgery so they wouldn't be in the way. We then talked about the fact that Darein wants to have her nose surgery. We were told that she could have that done at any time and were asked when we wanted to have that done. We told him we thought we would wait until after the jaw surgery as we were afraid she might have to have back surgery. He told us that her back surgery was priority so to get that figured out first and then she could have her nose surgery whenever she wanted. We talked some about how her midface would look when he was done and he explained that she still would not look like me or Shane. He said that he could put cheek implants in at any point if she decided that she wanted to have that done. We are concerned that she will not be ready for back surgery this summer and that she will still need it but that they won't be ready to do it until next summer. If that is the case, then we will have to go back to the plastic surgeon and ask how to proceed. Her braces are on and have to stay on until after the surgery so not sure what would happen or how it would work out. Her plastic surgeon wants her to get a nasendoscopy about 6 months prior to her surgery. They will be looking to make sure there is no bubbling of the palate. This procedure entails them placing a thin tube down her nose with a camera on the end and asking her to talk so they can look at what they need to in that passage area. She has had this twice before when she was little and absolutely hates it. She gets hysterical trying to have it done and it is very traumatizing for her so we are not looking forward to this at all. Evidently, sometimes the palate expander can weaken the soft tissue in the roof of her palate and if this is the case then she would not be able to have the jaw surgery. Just one more piece of the puzzle to figure out :). When she is about 6 months away from being ready for surgery her orthodontist will take some impressions and xrays and send them to the plastic surgeon in St. Louis for his team to review and to start the insurance approval process. We are told she will only be in the hospital for 3-5 days, some patients may end up being in there for as long as 7 days but that is rare. We are supposed to start working on pureeing some foods and letting her try some Ensure and Boost and just try to see what she likes and doesn't like. Her jaw will not be wired shut after the surgery like we originally thought but will have rubber bands at the back of the top jaw and will be attached to the front of the bottom jaw to help keep the jaw pulled forward until it is healed. She will have screws that attach the jaws and will not be able to move her mouth much or feel like moving her mouth much for a little while after the surgery. She should start feeling comfortable within a couple of weeks and hopefully recovery will go good from there though I've been told it can take as long as a year to fully heal. Her nutrition after the surgery will be very important as she will need plenty of protein and that will be difficult with her not being able to eat meat. They will dismiss her with a strict diet of the nutrients she needs and we will be responsible for getting that nutrition to her. Since she has congenital virilizing adrenal hyperplasia she will need IV cortisol during surgery and will also need extra doses following surgery until she is healed. The cortisol is an important hormone that your body makes extra of during times of stress or illness and since she does not make the required amount it will be very important that we get the stress dosing to her body so she will be dealing with that along with the surgery itself. We have decided that once we see her orthopedic surgeon on Monday and get the information from him as far as his plan for Darein and her back then we will start making other medical decisions as to how we proceed on things. We are considering getting done whatever can be done this summer to help spread surgeries out a little bit for her. Our goals for this summer would be to get her wisdom teeth out, go ahead and get her nose surgery done and then get her hearing appointment made and order her new hearing aids. However, by this stage of the game we know all things can and do change at any given moment so we have to be able to roll with the punches and adjust, adjust, adjust to all things! She has VBS, a mission trip, a kidney appointment, volunteer time at the zoo as well as she wants to do some golfing with her Champion Athletes of the Ozarks this summer and a family reunion so the appointments, surgeries, etc. will all have to be carefully orchestrated and all things considered into the bigger picture. Unfortunately, considering a summer where we actually don't have a real vacation planned in the hopes of enjoying some free time for lazing about, going to the lake, etc. I think we are going to be quite busy ;) I'm trying very hard to keep up with my blog and everyone on my social networks but if it seems as though I have been a little distracted lately its probably because I have. I know I have just been liking everyones status' and not commenting much for the past 6 months but now you kind of know why. Yes, this stuff has only come up this month but these things have weighed heavily on my mind for awhile now as it draws closer and as we continue to get bad news about Darein's back. I have enjoyed everyone's summer pictures and it looks like most of you have already started your summer vacations....I am enjoying them greatly and appreciate any and all prayers for Darein. She is handling things fairly well but is getting scared about the jaw surgery now and wants to back out of it. It is hard for us to have her go through with it but we feel as though it will be very beneficial to her in the long run. Since the nose surgery is the one thing that she is looking forward to, we are hoping to be able to get that done for her this summer so she has something to look forward to and will hopefully boost her self-esteem as she moves forward in her teenage years. Oh ya....she told us that she wants them to give her a nose just like mine!!! Made me feel good that my daughter is looking to me for her nose :) Take care and God Bless!!