Genetics

We have had a very adventurous week (last week actually!) so to speak. When Gavyn got sick (after his birth) it was very public. My hubby designed a fb profile picture of Gav that read 'Pray for baby Gavyn' and people went crazy with it. I'm not even sure how many people used it as their own profile picture or just posted it on their wall but I'm sure it was in the hundreds. Everyone we know and everyone 5 degrees removed from us knows about Gav and they all ask about him. It really is awesome that three years later people still genuinely care about him and us. What is odd about it is that not as many people know of our struggles with Nevin. He was just two when Gav was born and at that time his delays were becoming more apparent but were over shadowed (in a way) by Gavyn's illness and recovery. When people ask me if I worry about Gav I can honestly answer them that I do not worry about Gav as much now, and I truly worry about Nevin more. Gavyn has a diagnoses, but Nevin does not, and that adds more anxiety to it. So, while Gavyn has had a great team of therapists and doctors for three years, for those same years we have been searching for answers for Nevin and for the right combination of doctors, therapists and school. He is our little puzzle that we are trying to put together and see what the picture really is all about. Right now we just have bits and pieces.

This week we took the plunge into the very unknown and scary territory or genetics. The idea of having his genetics tested and mapped out has come up a few times over the last three years but each time I would consult with our pediatrician and also Nevin's endocrinologist and they are both of the mindset that his genetics are fine and most of his issues can be traced back to his thyroid condition. I have agreed with them and we kept putting the testing off. But last year during our visit to the cleft team, genetics came up again and we decided to take the plunge, if for nothing else than to rule it out and erase the question from anymore doctors minds. We sent in the paper work and waited. Now - that all happened the last week of May and Gideon was born June 13 so, a lot of things have gone by the wayside. Finally, in December I realized genetics never called us to make an appointment like they were supposed to. I called and was surprised to get the secretary the first try and get an appointment for the following month. Nevin's paperwork was sitting on the doctors desk in the pile of new patents he needed to review and Nevin's had not reached the top yet. Either there are lots of new patients coming to see him or he's very slow making it through the stack!

The idea that I was having my kids genetics tested to see if there is a missing piece did not actually hit me until I was sitting in the office with Nevin and bouncing Gideon on my knee. Suddenly, it hit me like a brick wall that this was not some normal check up, it was not something to just cross off the list, this was a serious visit that would in tail blood work and I was not sure what else. First we met his assistant who was very bubbly and friendly but also knew her stuff and went over a lot. We mapped out the family tree and I answered a lot of questions, hoping I knew all the correct answers. She left to review with the doc and shortly they were back. I was so impressed with the doctor when he came in. He put me at ease, he put Nevin at ease, he completed his testing of Nevin with him not even realizing the doc wasn't just playing with him. Once he was done checking him over and asking me more questions his assistant played with Nevin so that the two of us could talk. He answered the few questions I had but I was very honest with him and told him that although I have a million questions to ask I don't want to ask them or research them until we get the blood work back. There is no point in me worrying about all these what ifs because in two-four weeks we will have a more clear answer. I couldn't tell if that surprised him but I could tell he was pleased by it. I am hopeful we will get a call in two weeks tell us everything was fine but if we get the call to come in for a talk I am glad it will be with a doctor that I feel I can respect and trust. After our chat the nurse walked us to the lab where we waited for forever to get blood taken. The only nice thing about waiting was all of our doctors, nurses and our orthotist Barb ran into us and we got to chat with everyone and pass the time a little faster. Once it was Nevin's turn we saw our favorite tech Dougy who always talks to Nev and understands him. She's awesome

And now we wait. We have already waited a week since I started to write this post and hopefully next week we will get the call. I am already getting nervous every time I hear my phone ring.