Thankful For Downtime So That I Can Get Caught Up On Paperwork

Not much has happened since the last time I posted but nonetheless I thought I would give an update. We found out that Darein has either kidney stones or gall stones her urology surgeon believes according to an xray that she had done. Therefore, he wanted her to get another xray in two weeks and then if that comes back showing they are still there then he wants to order an abdominal ultrasound and go from there. Darein just went on Friday and I called and spoke with her pediatrician's office. They are still stating that there are densities still there and will send the films to Kansas City for the urologist to evaluate. We will have to wait at least until the end of this week, if not the beginning of the next week before getting answers saying that we need to proceed with the abdominal ultrasound. Darein has been sick about once a week for about 6 weeks now. Hoping they hurry up and get the necessary tests ordered so that they can get these stones taken care of if that is really what is going on with her. I am guessing that if that is really what is going on with her then she is doing incredibly well only being sick once a week as I would guess that kidney stones and/or gall stones typically make people extremely sick and in a tremendous amount of pain. I think that her steroids probably help mask some of this pain but this girl has some serious pain tolerance and always has too. Hoping they help her soon.
In the meantime, It has been two weeks since Darein went to St. Louis to get measured for her back brace. Anticipating getting a phone call sometime this week stating that we can make an appointment to go back to St. Louis and get her brace.
Me and Shane have also noticed that Darein's hearing isn't what it should be so I will try to find time this week to call her audiologist and set up an appointment for a hearing test so we can figure out if her hearing truly is worse. If it is, then she will see the ENT doctor in the same office and it will be determined if it is just wax build-up or if there is a possibility that the malleus bone prosthesis has fallen once again and surgery will be necessary to fix it.
I have spent our downtime from office visits doing research and paperwork and coming up with new ideas. I have had an appointment with the Division of Social Services to see about getting Darein some Medicaid that would help with out insurance. We make too much money but there is a program where you have a spend down amount that you pay for the month that you decide to use it. If you don't use it that month then you don't have to pay that amount. Unfortunately, our co-pay would be about $800 each month that we decided to use it so will only be able to use it when it is feasible to use. However, it is better than nothing. Lots of paperwork and documentation are needed to turn in and has taken quite a bit of time for me to gather. I have the paperwork finally done this evening and now just need to collect my documentation and make copies of everything. Hopefully, I can get it turned in by next week or the end of this week. I have also called and checked out a few other resources, had some that we don't qualify for and another one that I am waiting for paperwork in the mail so that I can work on completing that application process. I also heard from Darein's geneticist this week and he is willing to see Darein and get some blood work from her when she is in St. Louis next time so that we don't have to make an extra trip. He has offered to see her even if it isn't one of his regular clinic days! What an incredible physician and person this man is, we are so very fortunate to have him in our lives. He is working with the UK to continue their research on Darein as not much is known about her syndrome and they are learning most of what they know through her and a few rare others. Hopefully eventually one day there will be enough information out there about Antley-Bixler syndrome that other families will be helped. Knowledge is such a wonderful thing and I appreciate it more and more all the time as we continue to go through helping Darein so blindly.
As I have done all of this research and searching for organizations that are willing to help some with Darein's medical costs it is becoming increasingly aware to me that there are not any organizations out there that help within the guidelines that we need help with. Therefore, me and Darein have decided to put into action a thought that we have had for quite some time...we are going to try and start a foundation for kids with rare syndromes. I have talked with my sister and my best friend and they are going to join our team and help us with this endeavor. Me and Darein came up with a name and a logo and Darein designed it on the computer and has done a fantastic job. The other teammates are going to help set up the organization, help with legal advice and we are going to start organizing on paper and see if this is going to be something that we can pursue. I therefore will be working on this project in my spare time as well. We are getting very excited about it and have lots and lots of ideas. Unfortunately, we have to take care of the boring stuff first and get all of our ducks in a row before we can proceed but I am very grateful to have family and friends that are good at weeding through the boring stuff so that me and Darein can do more of the creative stuff :)It is nice to have a team that is working towards the same goal as me and Darein. We are hoping to be able to help children with rare syndromes with their medical bills. We have to set up guidelines but do not want financial income restrictions to be placed and instead want to be an organization that looks at the bigger picture and can help people find resources as well as be a resource to help them. Me and Darein are so excited at the vision that we see and can't wait to try and make it come true. Again, we need to figure out the details first to see if it is going to be something that is doable before we venture too much time and effort only to get to a huge roadblock so please be praying for us. I have been praying diligently about this as I know that no matter what a good hearted or great idea it is, it will never work unless it is part of God's plan for our lives so I just ask that you pray that God opens doors for us if this is what we are supposed to do and closes them rapidly if it is not in the cards for us.
In the meantime, I have called the University of Missouri and talked to them somewhat about different scholarships, etc. that Damein might receive for college but basically we just have to wait until we get his packet in the mail. We were given another scholarship site and so Damein will continue to fill out scholarships and we should receive our financial aid packet from the college in the next week or two and will have that to go through and work on. Damein did get us registered for summer orientation and approved for a couple of dates and so we look forward to visiting the campus again in June. He is scheduled to take the ACT one more time in another two weeks and so we are continuing to make progress on his college as well. We have finished Damein's senior pictures and now will pick out what we want and what picture to send in the announcements. I started filling out his announcements today and started going through the list of who to get them sent out to and just need to review and make sure I have addresses and then finish these by the end of the first week of April so that I can mail them out the next week. So much to do to finish his senior year and get him ready for his first year of college...Yikes!!!
I hope that everyone has a blessed week and I am super happy that baseball season is here and enjoying some free time watching my son play his last year of baseball!!