The first week of January Pastor and I headed to Salt Lake City, Utah with #3. We originally had scheduled for November 13, 2013, to see the genetic doctors to see if they thought testing was something that needed to be done (to see if she has OI, go here if your not sure what I'm talking about). Then, miraculously we got a call in late December asking of January 2nd would work for us. At first I told them no, because its about a 2.5hr drive from here, and they wanted us to be there by 8:30, which meant we would've had to get up before the sun....not happening. I texted Pastor after I got the call from them and he immediately told me to call back and take the appointment (they are first come first serve, and its a LONG waiting list). So I called them back and took the appointment.
Know the coincidence in getting this appointment? A friend of mine had a baby in December (6 weeks early) and he was in the NICU for being so little and such. I went to visit them in the NICU, because it was a HUGE blessing to me and #3 when we have NICU visitors, and I had cookies to bring the nurses. I was chatting with my friend. She has a 19 month old daughter who wears hearing aides because of something that happened at birth and they think it is genetic. She ORIGINALLY had her appointment on Jan 2nd at 8:30am, the SAME appointment I got called for, because she had called to cancel her appointment since she had her baby she couldn't make it down there that soon. It was so a God thing!
Getting back to the story, Pastor suggested we find someone to watch #1 & #2 so we could go down the night before, stay in a hotel and enjoy ourselves.
I'm blessed to say that we have an A-M-A-Z-I-N-G church family and some A-W-E-S-O-M-E people from the church volunteered to watch the big kids OVERNIGHT. They watched them at their own home, so it was a new experience for #1 and #2. They got to bring they new sleeping bags over and had a "sleep over". They did wonderful I guess, is what the people who watched them said. I'm glad to hear that when I'm not around my kids still behave, sometimes I wonder!
We met with the doctor in the morning. When the doctor came in he looked all puzzled. He replied, tell me about #3, because her medical file is E M P T Y. It's what? I beg your pardon? Where did all those documents go that the doctors were calling down here while #3 was in the NICU? Where is the referral form that I got a call on the 28th of December was being sent down? Where was her full skeletal survey that the hospital sent to them? UGH! I was NOT happy. Thank goodness I'm a prepared person. I had earlier requested #3s complete medical file from the hospital, a whole 215 pages for her first 8 days of life. I brought that with. We had also requested to have a copy of her skeletal xrays. I brought that as well. Praise God I did, because otherwise things would have been a waste!
The doctor talked with us, looked at #3, looked at the xrays, read through her medical file. He didn't have any "medical" conclusions, but had some ideas. Now a "side affect" of OI is having greyish to robin color blue whites of their eyes. #s whites of her eyes aren't white, but aren't blue. They are greyish in color. BUT The doctor said that it looked normal for a newborn. Ok, so no real answers there.
He said that he would write the request for genetic testing to be done, if we so choose. Pastor is still unsure this is the right route, he wants to leave it up to God, but I want the testing done. I want to know if she has OI, or I want some answers. This may not even give us any answers, but it is a start.
So he wrote the request for the testing. Now we're waiting for the insurance company. Joy. This is a fun process. We will be able to do the testing here where we live, then they will send her blood work to another hospital to do the actual testing, then they will send the results to the doctor in Salt Lake City. Let's hope no one looses any information in that process! I'll keep you posted on what the tests conclude, if anything.