Visit to Peoria!

Oh boy mom, headed to Walmart again!?


Alexis loves her baby sister!


Yesterday we made a trip to visit Dr. Horwitz, Alayna's genetic doctor, in Peoria. He is actually a doctor from Chicago and comes to Peoria the third Thursday each month. When we got there, Alayna was weighed in at 16 lbs 6 oz (with an outfit and diaper on) and measured 25 inches. That put her on the charts at about the 75-90th percentile for weight and the 50th percentile for height. Next week we visit the pediatrician and he is a bit more precise. So we'll have to see how things measure up there in comparison. But nonetheless, she is growing well and he was pleased about that. And like I've said before, I'm thankful about that too.

We were then escorted to our room and two genetic counselors and a resident doctor came in to ask questions and see if we had any concerns. They are the ones who gather the information and then go present it back to the doctor. One question we asked was when should she visit the cardiologist again. She had been released by him, but that was prior to her diagnosis. She will be going in February. Another question I asked was how often we would be seeing Dr. Horwitz and what his main role was. He is basically the "coordinator" of her care, which I'm thankful for. It can be overwhelming at times. He will be the one making sure we are going to certain follow-up appointments, getting Alayna the proper interventions, and he will order any further testing if necessary conditions arise. I also wanted to know where her exact break point in the chromosome was. She is missing material around the 1p36.33 region. The good thing about this is there is some scientific information supporting that .3 deletions are more mild than .2 or .1 deletions. Less material is missing. Chromosome 1 is the largest are carries the most genetic material. Unfortunately, any deletion means that many genes are missing. This is such a learning process for all of us and I'm sure for all of you too. I'd guess that most of us had not ever heard of a chromosome deletion prior to Alayna.

Overall, the visit went well. Dr. Horwitz checked her out. He will continue to monitor her progress. Again, his primary concern, along with ours, is her development. He definitely thinks she has the necessary "muscles" to do what she needs to do physically, it's just getting the mental part of it in sync with the body. Her mental development is a concern and we can only do things to maximize her potential. We visit Dr. Horwitz again in January right before her birthday. We will follow up yearly after that. Our next planned visit to Peoria will be in August for her vision and hearing screens.

Alayna is getting stronger. Lexi and Drake are feeling more comfortable carrying her and playing with her because she is more stable and getting easier to hold. They love her so much and I think they will be the best teachers for Alayna. They are constantly in her face and she does watch them. A parent loves their child unconditionally. It's definitely a different kind of love that you just don't realize until you have children. We love Alayna unconditionally and we will do whatever we have to do to make sure she is taken care of for the rest of her life. God has blessed us with a gift. I may never know why God gave us Alayna, but I must believe that he holds the ultimate plan and for everything there is a reason.