Thursday, November 15, 2012

Children Come First

The holidays are just around the corner, and my least favorite season is coming upon us.... winter. I am more of a summer gal myself. Lately, I have been in a bit of a funk, and I don't really know what to do to get out of it. I am trying desperately to find some daily happiness or a bright spot.I am surrounded and reminded of theses positive things constantly, but maybe some vitamin D is in order!  It has just been a lot harder to do, although, I will say that I really do have a lot to be thankful for. With that said, I think maybe I will write a few things out, just off the top of my head.

The biggest series of positive things is the results from our hospital visit to Cook Children's hospital. Last time I posted, I talked about his amino acid levels being high, and not really knowing what it meant. I worried for nothing... but I guess that is what caring and loving parents do, right? We drove 600 miles round trip and spent some good quality time with my grandparents. Instead of making a rush trip down there and a rush trip back, we made a long weekend of it, and I think the last time we took a family trip as to go down to see my Mother In Law at Christmas last year. It took us 2 days to drive the trip and 2 days back and although we had some time off in between traveling, it made me wish to never travel in a car with 2 small children for over 5 hours again. This time, we were able to drive down right under 5 hours, spend some decent time recouping, go to visit the doctor, and come back. We worried how we were going to be able to pay for the gas, especially since we have had zero income coming in in the past 2 weeks prior to the trip and mortgage and other bills due. It isn't because my husband wasn't trying his hardest though. Sometimes that is how jobs that pay commission and have charge backs work. I got paychecks from some childcare stuff I had picked up, my parents and both of my husbands parents helped us financially too. That is something to be grateful for. I tend to not ask for money, and would rather have parted with valuables... (if I had any more valuables to part with, haha!)
We went to Cook Children's Hospital in Fort Worth. Let me just tell you, this was the first time I had REALLY seen a major specialty children's hospital, and I was floored. I was amazed at how genuine the staff was, and the waiting area, ect. It made our local resources look like a backwoods shed. They had buzzers that lit up and vibrated when it was your turn to go back, and in the meantime, they had a huge open area where you could let your child play. They had swing seats, wall mounted touch screen video games, a build a bear workshop, movie areas, and  several staff members who were more than willing to assist you by either getting things like drinks or snacks for you, or helping you find a bathroom. But, before we went to the actual hospital, we went to the specialist's office. It was clearly geared towards those kids with chromosomal abnormalities, autism, and developmental disorders. We met with the nurse, and she was super nice. We then met with the doctor, and she spent a good hour going over concerns, collecting detailed family history and other data. She didn't seem rushed at all, and we were clearly more than "just another patient". We were the family of Cameron, and we were treated as so.We asked about the amino acid levels, and that is when we found out that his fasting bloodwork came back normal. She told us that the first numbers were consistent with blood results of a child who had just eaten or drank something. So, in other words, completely normal. She then suggested that we have a full metabolic panel done anyway, since she wanted to make sure she didn't dismiss something, and she also wanted to do a full microarray chromosomal test since it looked like they had only really looked at one chromosome (our of 46) in detail. I was worried about the expense, and she had her insurance specialist on the phone with our healthcare provider, and she kindly put it on speaker phone so we could get a direct answer right then and there. We agreed to the testing, although, she did tell us that chances are unlikely that there would be any abnormality found. sdhe sent us to the hospital for our lab work. This is where a lot of parents have to make the choice... it is a longshot that she will find anything, BUT if that longshot is there, then we know which direction to go. It might even make things easier when we have to battle insurance companies and school for therapies.
This week, the nurse called me to let me know that his genetic profile testing and metabolic panel came out normal. There is a small sense of relief in that news, but also we know that there seems to be no direct medical causation for his symptoms. You could be negative, and focus on a few things, like the fact that we had no money for this trip in the first place, 2 days of missed work,  nothing new was found, and there is still no solid medical cause for his Autism. Instead, I choose to look at the positives. We took a much needed vacation of sorts, spent some time with my grandparents, took the boys on their first commuter train ride throughout the Dallas area, my grandpa treated us to lunch in the West End, We drove by the Fort Worth Stockyards (which isn't REALLY where they sell cattle anymore), met a wonderful doctor and staff who I hold in highest regards, actually enjoyed ourselves at at the hospital, and survived 2 car trips with small children in one week. We also can lay to rest any doubts we had that there was some sort of chromosomal issue affecting our son, and we no longer had to worry about those amino acid levels. We also learned something... there were hundreds of other parents at that hospital that day putting their own children first and pushing through the worry and doubts, and surviving on positive vibes and prayer. If they can do it, so can we!