Trying To Figure Things Out

Well, as most of you that keep up with me on Facebook know by now Darein was not accepted to the Shriners Hospital in St. Louis. They do not have an ICU and the anesthesiologist and team of experts at that hospital felt that Darein had too many other medical issues to feel comfortable accepting her in case there were difficulties during or after surgery that would require extra care. The same surgeons do perform the surgery however at the Children's Hospital in St. Louis and therefore we were referred over there. However, when I called they told me that her curves by themselves were not significant enough for their doctors to see her but if I had her orthopedic doctor here in town send records they would review them and they might accept her based on how rapid her curves had progressed. I called to request these records be sent. However, the nurse was out that day and so I had to wait until yesterday before being able to speak with her. After speaking with the nurse here in town, she said that she would make a phone call to the doctor's office in St. Louis as sometimes they were more likely to accept patients if they spoke with the doctor's office and could get more information. Therefore, she will be making the phone call and faxing over records this week. In the meantime, she gave me more xrays to take with me when we go. I was concerned about the amount of time that we would have to wait prior to surgery being done and how it would affect her lungs. I was assured that we had time though she told me that this surgery would not totally correct Darein's curves in her spine. She said that they straighten it the best that they can with the rib bones and then place the rods to keep it from progressing. If they were to do surgery at the degrees of 32 and 35 that they are at now, they could probably get her spine pretty straight but she was unable to tell me if they would try to get it done now before it got worse or if they would want to wait until it got worse before proceeding. We will have to wait until we go for our consult appointment to find this out.
After finding this information out I looked the surgery up online and found that it can cost as must as $500,000.00 for this surgery and if it is performed in kids there is a good chance that the rods will need to be replaced as they tend to deteriorate over time. I will be checking that article against other articles in the days to come to verify the information that I read but sounds a little overwhelming as of now. According to the article I read it also said that she would be disabled once this surgery was performed. I'm guessing its because she will always have back pain from here on out.
With the expense of this surgery, the possibility of having to replace the rods later on, braces on her teeth, jaw surgery and nose surgery as well as possible kidney/bladder surgery we feel as though we have taken care of her medical bills the best that we could up to this point and are ready to start figuring out what resources might be available to us. I called the disability office today but most likely she will not qualify as we make too much money. However, it is important for us to go ahead through the process as there is a slight chance they might approve her anyways based on the severity of her disability and if not then I was told that sometimes in order to qualify for other resources a denial letter is required from the disability department. Therefore, we will pursue this avenue and see where it leads us. I was also given the names of a few other organizations that we are pursuing as well. It is very frustrating that she did not qualify at birth for disability due to the fact that we had no diagnosis and therefore no prognosis for how well she would do. Then once she was diagnosed at the age of 10, still not likely she would be accepted as the condition was so rare and so little was known and therefore unable to decide if it would keep her from being able to hold a job later in life or not. Now, that she might qualify as we know a little more about the syndrome and now that she has scoliosis which is debilitating she most likely still won't qualify because we make too much. This kind of thing makes it very frustrating trying to get help knowing that we are trying to make a good income for our family and take care of our kids the best that we can but yet there are people out there who have chosen just not to work and to let the government take care of them and they qualify for all kinds of services. So now, as if worrying about your sick kid isn't enough we get to jump through hoops and fill out paperwork in our "spare" time to try to get some relief from past medical bills as well as future higher cost medical bills.
I try to make some sort of a positive note on my blogs so for my positive note today I just have to say that I have the most incredible friends and family imaginable. I would not be able to get through all that I have without God, of course nor my family and friends! My sister has offered to hold a fundraiser for Darein. We have asked her to wait until we go for the consult so that we have a good understanding of what the plan will be before deciding to let her proceed. I also have received many phone calls from family and friends over the past few days offering support, knowledge and someone to talk to. I had to tell Darein tonight that there was a good chance that she would miss out on her Blume Acteens trip to Florida this summer that she was looking forward to as well as a mission trip to St. Louis with her youth group. She was devastated as she really wanted to participate in these events and has never rode on a plane and wanted to ride on a plane this summer. We promised her that when she was able we would take her on a trip and let her ride on a plane :) She seemed to be feeling a little better after that but is starting to understand the magnitude of what is about to happen and how it might limit her. She wants to be a Vet Tech when she graduates and so I talked to her about the fact that she can still try to achieve that but may just have to work part time or do volunteer work as she is able so that she gets to still do something that she loves and yet still take care of herself. She also loves to do art work and paint so we talked about the fact that she will be able to do that in her spare time as well. She will continue to work towards her goals in life and we will continue to support and help her reach her goals but with limitations and guidelines that will work for her. Her sleep study did come back normal in the preliminary results and so that is one hurdle that we have overcome through everything else. We will still continue to push forward and work everyday towards accomplishing goals whether it is catching up on rest, getting the house cleaned and organized so that I can focus on caring for her after her surgery, filling out paperwork, attending appointments or whatever else may come up. I did call her urologist's office today to check on the results of her xray we had done a few weeks ago and the nurse was out so I will hear something tomorrow or next week as to where we are at on that issue.
For every few steps we take forward it seems as though we take even more back. However, with all of the steps back it allows us to learn more than if we only move forward and therefore I am as grateful for the steps back as I am for the steps forward and will continue to hold fast to the fact that God will deliver us and see us through each trial and we will continue to come out with a stronger character than we started with.