Summary of the Week

I've been posting on Facebook most of the week but don't have much to write about to date, so I thought I would just give a refresher of the week :)
Darein's back has been increasing in pain and her illness to her stomach is getting worse. She missed 3 days last week due to an upset stomach and ultrasound tests. She has been ill at least 1 day a week for the past 7 weeks due to either kidney or gall stones most likely. She has been getting her xrays done here in Springfield and the clinic has been mailing those xrays to Kansas City. It has been taking them a week and a half to receive them which causes it to be that much longer before we can move to the next test. The doctor in Kansas City finally agreed to let us proceed with a pelvic and abdominal ultrasound before he viewed the KUB xray. We had the radiology department make a CD for us and then we directly sent it via FedEx that same day. I called today and found out that Kansas City received the xray finally yesterday afternoon and the ultrasound today. The doctor was out this afternoon and has a full clinic tomorrow so they will try to get him to review the tests and let us know how to proceed by the end of the week, hopefully. I did stress on a phone call earlier in the week that I would like the doctor in Kansas City to perform the surgery to remove the stones if he wants to look at the anatomy of her kidneys for her left kidney reflux and at her spastic bladder. I also stated that if all he was going to do was remove the stones then we would prefer to have that done here in Springfield so that her recovery will be close to home and easier travel wise. So now we wait to see what, if anything will be done and then go from there.
As far as Darein's back goes, she has been anxiously awaiting her orthotic back brace to come in as she is hoping that it will help her pain. I finally received a phone call this morning stating that the orthotic department had to work with the orthopedic doctor appointment so that they could both see her on the same day. They happened to have an opening this Friday and so we will head to St. Louis on Friday to pick up the brace and see the orthopedic doctor.
Darein's geneticist is at Cardinal Glennon Hospital in St. Louis and is wanting to see Darein and get some labs for some further research needed to send to the UK. He has agreed to make a special appointment just to see us since Darein is in town. Darein is a little concerned about having her blood drawn at a hospital other than the usual as they know how hard it is to get blood from her. She wants to make sure that the hospital knows that she is a great finger stick, even for large amounts if possible. I assured her I would pass the message along and we would work through things once we were there and knew more about what was going to take place.
During all of my down time that I have had these past couple of weeks I finally managed to get all of Darein's paperwork taken in to see if she will qualify as disabled and receive the same benefits as a disabled person over the age of 18 or if she will receive at least a minimum of Medicaid with a $800/month deductible when we choose to use it. It will take at least a week or two to get the results. This would help if Shane's insurance caps out due to the increased medical care that she is starting to require. I also am finally filling out Children's Miracle Network paperwork to see if we can get some relief for traveling expenses and maybe help with her back brace and hearing aids that will be needed again in another couple of years. There are only certain days of the week that they are able to help you so need to get information turned in tomorrow in order to get help with her scoliosis issues.
Tomorrow I will spend the day dropping off the CMN paperwork and hopefully an interview as well as calling the doctor's office in St. Louis and asking them to fax the necessary paperwork showing that Darein has an upcoming appointment and her diagnosis, etc. Then, we head to a baseball game where Damein is expected to pitch. Thursday is errand day and so the day will be spent running errands and going to watch another baseball game. We are debating on whether to go to St. Louis Thursday night after the baseball game and staying so that we can already be up there the following morning for all of the appointments. It will be very difficult on us if we decide to wait until the morning of the appointments as we would need to leave by 5 or 5:30am, drive 4 hours to head to two doctor appointments in the morning, eat lunch and find our way over to the other hospital which we have never been to before for another appointment and then driving home 4 hours in order for Shane to be at work the next day. It makes for an extremely long day. Damein takes his ACT test Saturday for one last time to see if it helps improve his score and helps improve any chances for scholarships. In the meantime, we are still trying to find time to take Damein to get his tuxedo for prom and to pick Darein's 4-wheeler up from the repairman. I will definitely be ready for a rest next week but not planning on getting too relaxed until we hear what the plan is for Darein's kidney or gall stones. We may end up taking another trip, this time to Kansas City the very next week in order to get her to feeling better. I am very thankful that God has given me and my family the stamina that he has. Our bodies naturally seem to relax and rest when we need to and we seem to be able to find time for that down time which is very nice. This allows us to go and go for long amounts of time until we get to a place where we can finally crash again :)
Thank you to all of those that have been keeping Darein and our family in your prayers. The road is long and tedious right now but as each day passes it brings us a day closer to the light at the end of the tunnel. Darein is looking forward to going to Florida in July with her Acteen group. Because of her back brace and the care she may require I am going to go with her. We are both looking forward to some downtime and it is nice for sis to have something positive to look forward to.