Rude February

What an incredibly busy February we have started off with!! I'm not really sure where to start. February may have been fairly mild with its weather but it has been a little rude to start off the new year!
Darein started the month off going to St. Louis. We are told each and every 4 months that we go that no xrays will be needed for the next visit as the surgeon likes to keep xrays as limited as possible. However, Darein has managed to need one every single time when we show up. We started off our visit by forgetting the original xrays for him to compare the other xrays to. The surgeon's assistant reviewed the xrays from the last visit and wrote 38 degrees on it. The previous visit in June had shown 35 degrees. We were told in October that there was minimal to no change. However, it appeared that there was a 3 degree change in October. The prosthetic back brace doctor came in and reviewed the xray and then both walked out. Darein's surgeon finally came in, looked at the xray and stated that with the change he saw on the xray we should have another one done with and without the brace. We were running late for Darein's genetics appointment (her geneticist was coming in on his day off to see her) so I made a phone call and let his office know that we were running quite a bit late. We were told just to call before we left and it would be fine, he would see us. Darein got her xray and then we returned to see what the results were. We were called back to the surgeon's office and told that it was now at 42 degrees without the back brace. We are to go back in 4 months and if it is 45 degrees or greater then he has to start considering surgery on her. He told us that a lot of parents ask, "if surgery was inevitable then was it a waste of time and money to have the back brace put on?". He stated that no it isn't as it at the very least helps to prolong the time before surgery is necessary and time is essential when the bones are still growing. Needless to say, we are very disheartened to hear this news as we were hoping for NO surgery. There is also a possibility that Darein will have to wear the back brace for an additional 4 months from the time that she goes back to see the surgeon which would leave her in it another summer. The brace is wearing on her nerves as she cannot wear jeans (only pants or pajama jeans) or do much exercise or bending in the brace. She is doing very well though and wearing it during school, taking it off when she gets home and putting it back on at bedtime.
We went to see Darein's geneticist after the surgeon appointment and visited for quite some time. I asked about several concerns and was told that we have enough on our plate for now without adding to it. Glad to know that a doctor knows when enough is enough for awhile as well :) He gave us the research paper from Darein's last research study and I was told that not much was discovered, was just kind of a baseline study. He also gave me parent paperwork as well as doctor paperwork for a new research study he was asked to pass along to us. England now wants to do a study about how and if certain medications work in kids with Antley-Bixler syndrome and how these medications react with their systems. Darein has to be off of certain medications for a period of time though so we have to work with the endocrinologist to see if it is safe and if he wants her to participate in this or not. I have read through the new study information and already sent questions back to her geneticist for further review on some things but have not had the time to sit and read about the study that was done last time. We were told though that Darein is not the oldest patient with Antley-Bixler as previously thought. Her geneticist did not have the information readily available but was thinking the oldest was around 23 or 24. As Darein gets older as well as other children with Antley-Bixler, it becomes increasingly important to figure out what new challenges they might face through adolescence as well as young adults medically. It is also important to figure out how safe the steroids are for long time use as well as if there will ever come a point and time when they are no longer needed. Part of Darein's pituitary gland as well as other important glands such as her adrenal glands do not function properly and as we were told by her endocrinologist, "we just have to treat each symptom as they appear. There is no cure or preventive measures at this time".
We also put my grandparents in a nursing home this month. This was the hardest thing that I have ever endured outside of Darein's medical issues. My grandmother has Alzheimer's and my grandfather's health is failing. I went to visit with them this month and am planning another trip hopefully in the next week or so. I have never lost anyone close to me and I am extremely close with my grandparents. This has been an especially emotional drain on me. They live in Oklahoma so it isn't like I can visit them every day or on any kind of regular basis. On the bright side, the home is very nice and they finally got my grandma into a room with my grandpa. They have lots of activities for them to participate in and considering the state of their health, it is a very nice place for them to live.
We have started braces on Darein's teeth this month as well. Her first appointment consisted of getting 4 spacers placed for two weeks. One of them fell out that was on a shallow tooth the first day so we made an appointment to go back the following week to have it replaced. It made it two days before falling out for a second time. Today we went back and had the spacers removed, impressions made and 6 new spacers placed. We were told that 2 of them might fall out and if they did, just to wait until the week before we go back for the braces to come in and have the spacers replaced. We also found out that Darein has to have a palate expansion along with her braces. We did a palate expansion with headgear and a retainer once the expansion was out when she was 7 or 8 I think. We were told at the age of 10 - 12 by her now plastic surgeon in St. Louis that it was a waste of time to continue with orthodontics as there was the possibility that it wouldn't hold and we could end up spending a lot of money on orthodontics before she was really ready for all of that. Thankfully, we stopped and did not proceed further. So now, here we are again back to square 1 of needing a palate expansion. At least now she is ready for it but she is going to be in quite a bit of pain for awhile I am afraid. She has very sensitive teeth and with the 6 spacers on tonight she was already complaining of how much just the rubber bands were hurting. We took her out after her appointment for pasta and soup. Tonight though, she made a bowl of cheerios for a snack and couldn't eat it because of the pain. I had her take some Ibuprofen and an extra steroid pill so that she could sleep tonight and hopefully wake up in not such terrible pain in the morning. She gets extra steroids when she is sick or in a lot of pain as her body does not produce the extra cortisol needed like it does in me and you when we are in pain or sick.
Damein is still doing well in college though he is finding it to be quite difficult. He has some hard classes but is keeping his head above water for now. My husband asked him this past weekend if he had decided to change his major and he said not yet. He is in Calculus 1 this semester and got a 85 on his test the other day which should help his grade some. He did tell us that for his Chemical Engineering grade he has to go through Calculus 4 he thought. Hopefully, he will get a good base and really start to understand it by next semester so that he can continue to move forward with his degree. I know that we will be happy no matter what he decides for a degree though as long as he is happy and content with his path.
March should be a fairly mellow month as Darein is on Spring Break next week and Damein will be on Spring Break in 3 weeks. We will mostly consume our time getting Darein adjusted to her braces and getting them placed as well as visiting with my grandparents. We are helping with my husband's mom and aunt as much as possible as they have had their share of health issues as well. My husband will change hours again starting next week for the next 4 months so we will be adjusting to his new schedule as well. Our winter has been mild without any snow really to speak of but I have to say I am more than a little apprehensive about the upcoming Spring as we are already showing lots of signs of more tornadoes than normal. I have started a 10 day cleanse though and only have 2 days left and then will start with my new diet program. I have started to do Winsor Pilates and just have to stick with everything. Consistency is always a problem for me, so will be working on that as part of my New Years resolution to take a little bit of time out for improving my health and overall well being.
I hope everyone's New Year has started off a little better than mine but if not, just remember there is still 10 months for things to improve or 10 months until a New Year ;)