My pissy day

Yesterday sucked. It has been colder than cold which may seem expected to many of you who don't really understand the true Colorado weather in the northern Colorado foothills. Seriously, it is sunny 300+ days a year here and often very mild throughout the winter. We get some snow (though not nearly as much as people envision or expect) but it usually melts away inn a day or two. This last snowstorm we had has left the white stuff as frozen as the day it arrived. On one hand we haven't had to deal with the slushy, muddy, sloppy mess but nonetheless to keep the white stuff frozen has cost the temperatures to be freakin freezing cold!

I have been hunkered down in my home for a few days with just the token "driving the kids" to and fro. I'm getting cabin fever and am ready for it to warm up. Of course I could bundle up the Beckster and go somewhere but Becca's crappy sleeping habits have made that tough. Becca is going through some kind of crazy sleep pattern where she goes to sleep at night then wakes up for often hours at a time. Then she is of course all tuckered out in the morning when I'm supposed to be getting her dressed and ready for preschool. Now most of you who are parents know the rule, "never wake a sleeping baby". Well that rule goes for 3 year old Autistic girls too. If you do, you'll pay in spades. So instead, we work around her schedule.

Her new doctor discovered some interesting results from one of her many labs that the doctors at The Children's Hospital ordered. Now I should say that although they ordered these tests I never actually heard anything back from them except, "her results are normal". However, when I brought Becca's "book" of medical records to her new doctor, he poured over them and actually learned quite a lot from them. One thing he noticed immediately is that Becca's body is storing melatonin and for some reason isn't able to access it. He was baffled why her Doctor at Children's wouldn't have spoken to us about this. There were a few other discoveries to be found in her records as well. It was enlightening and dismaying at the same time. Dismaying that the thousands of dollars worth of tests that were ordered by a doctor were pretty much useless to us until we gave them to our new doctor. Enlightening because although her new doctor didn't have immediate answers, he saw her results as clues and made notes to himself so he could do the proper research as to what this all meant.

Now that I'm talking about Becca's doctor, I guess I should go all out. I attended this Autism Support Group with one of Becca's paras from her school. It was all very divine how it all worked out. Lori (her para) gave me a flyer about the meeting the morning of and asked if I wanted to go with her. I jumped on board and we went to hear a lecture by a BioMedical doctor, Dr. Roger Billica. He is a DAN (Defeat Autism Now) doctor and was awe inspiring with his information and his great success stories with Autistic patients. He didn't claim that there was a cure for Autism but rather cures that differed for each individual person. What works for one person, doesn't for another etc.... I was so impressed and couldn't wait for the next morning to come around to make an appointment for Becca. He was pretty booked so her appointment wasn't for months away. We knew that the first protocol he would recommend would be a GFCF diet (gluten-free, casein-free) so we prepared ourselves by learning about it before the appointment.

Dr. Billica recommends getting very specific genetic testing done on his patients so that he can really and truly see what is going on inside their bodies. We were prepared so we jumped on board and took all the home testing kits home. There are 4 different tests we are doing. One requires that we collect Becca's urine for 24 hours and then send it overnight to the lab. Another requires the first morning urine. One was a blood test and involved us pricking her finger and squeezing the blood out onto a card. The last test was testing for heavy metals so we had to cut some of her hair and send it in. We've successfully done the blood and hair but the urine tests have been a complete failure. We were familiar with the urine collection bags that they use on kids who aren't potty trained. The Children's Hospital did one of those too. The lab tech placed one on her and put the diaper back on. We waited and waited hours for her to pee only for the pee to completely bypass the bag and go right into the diaper. Fortunately they only needed a tiny bit so there was just enough drops in the bag to use.

When we left Dr. Billica's office armed with 20 collection bags we thought it wouldn't be too tough. Wrong! The bags do not stay put and the diaper just absorbs the liquid gold known as pee. We bought vinyl pants to put on Becca over the bag and thought surely we could just use a medicine syringe to suck up the pee that made it out of the bag. Instead most of the pee bypassed the bag, the pants and ran down her leg. It has been so frustrating and very messy. We finally told Dr. Billica's office that we just couldn't do it. So it seems she'll need to go to a lab and have a panel of blood work done instead. So we need to wait until we can afford it and will have to head back to Children's since they are the only lab that has a clue how to do labs on a child. You may be wondering about insurance. Well, they are done paying for Becca's testing. They also don't cover Becca's Doctor visits with Dr. Billica. Their excuse is that it is redundant. Yes we are appealing. We are also in the middle of an appeal with the insurance over Becca's therapy as well.

Meanwhile Dr. Billica won't have the results of the blood and hair for awhile yet so we wait. When he gets them back he will do an individualized supplement and health plan for Becca. We are rubbing Gabba cream on her daily and are slowly transitioning to a GFCF diet. We met with his nutritionist and she suggested we transition slowly after the holidays (wise advice since this time of year is rough to get something like that going).

I totally got of track of what this posting was even going to be about. I was supposed to complaining. Well, I don't really have much to complain about. I really have a blessed life and feel pretty stupid for letting myself get in a funk. After all, I have some friends who are going through hell right now so what do I have to complain about? Their 3 daughters were in a very serious car accident 12 days ago. Their middle daughter is still in the ICU down in Children's Hospital with a BOLT, an AVD and PICC line. Her brain is so swollen that they haven't been able to take her off of sedation to have her wake up and do serious testing to find out the extent of her damage. She's only 10 years old and it has been extremely rough. Her oldest sister was also hurt very seriously but is doing much better. Her younger sister is better physically but was extremely traumatized by the accident (she was the only one conscious during the accident).


So I guess the fact that I am feeling a little down is pretty pathetic. I need to suck it up and be grateful for all my many blessings. I have a lot of them after all.