Raegan update 5.19.2015

At the end of April we started the IEP process for Raegan. I took her to her first of three separate appointments. This initial meeting was with the school nurse at an elementary school that worked closely with Alta Regional. Upon meeting this lady and discussing birth history and getting all the basic health information on Raegan, she asked if she could be a little "forward" with me and ask me something. I replied with an, "of course." What she proceeded to tell me blew my mind. She was describing to me certain characteristics that Raegan had that I had never paid any attention to or just thought that was part of her chemical make up. She pointed out a number of things and then said that these were all characteristics of Down's Syndrome. It took everything in me not to loose it right at that moment because I wanted to hear out what she had to say. She was gentle in her words and was sensitive with the information. She herself has a Down's syndrome son and knew how rocky this conversation could be. She asked if I was ever genetically tested during pregnancy and I told her I wasn't because my husband and I were prepared to love our child no matter the outcome. She suggested I have Raegan do a simple blood test to rule it out. She was surprised that none of her Drs thought to have this done sooner because it would have certainly explained her delays. 

After the appointment I called our pediatrician in a panic with all the information that was just laid on me, and requested this lab test be ordered. I was taken a back. I couldn't help but cry. Cry, because of the unknown and cry because of the possibility. How could this be? After almost three years of life this was never a thought. How could after a year and a half of therapy this was never even brought up? I was devastated to say the least. Here this whole time I was thinking my child was completely healthy and "normal" (I hate using that word) but that was the thought that entered my mind and didn't leave. And wouldn't leave for the next three weeks.

We had her lab done and I found out from her Drs office that the result could take up to a month to process. That answer wasn't good enough for me so I called the lab myself to confirm. They said it should take about 16 business days. Well just shoot me in the head why don't you. Talk about going crazy! I called our pediatrician's office to check if the result was in about 50 times in these last three weeks. 

During those weeks my husband and I googled everything. I tried to soak up as much information as I possibly could about this diagnosis that I knew nothing about. What really tore me up inside was what her future would hold. If she would ever be able to live on her own. If she would ever want to get married. The fact that she wouldn't be able to bear children. Would she have trouble in any other aspect of her life? Would she understand everyday things? What I learned is that this is such an individual diagnosis. Each person with this is different in how they function, what characteristics the have, and how well they understand simple concepts. The future was simply unknown if this came back positive. I would interact and talk and play with Raegan and think, "No, there is just no way. Absolutely not a possibility." But then I would think, "no, this really could be a possibility." Our minds were cluttered with this constant juggle. 

Today I decided to call her Drs office once again to see if the result was in. The girl I spoke to was the same girl I had bothered so many times before with the same question. She put me on hold and when she returned she informed me that the result was back however her dr had not reviewed it yet and was out of the office until tomorrow. She explained to me that he will sometimes work from home and would get back to me if not tonight then first thing in the morning. The call ended and my whole body was shaking. My heart was beating a mile a minute and I felt as though I was going to be sick. I called back about a half hour later and pleaded to see if his covering dr would read the results and relay them to me. I explained that I have been anxiously waiting and how this would change everything and basically that I needed to know..now. A message was sent in the hopes that someone would call me back with answers. 

An hour later, her Dr himself called me, from home, to relay the news. He was very sweet in his words and understood my urgency. He happily said that her chromosome count came back NORMAL. I burst into tears. I have never in my life sighed a larger breath of relief. A weight had been lifted and I was able to breathe again. Of course if the outcome had been different we would love our daughter no less. We would work out whatever we needed to in order for life to be perfect for her. It was a hard few weeks that put our minds in a puzzle and we are so overjoyed with the clean bill of health that we received today. Our hearts will sleep peaceful tonight.