Alayna Makes Front Page of The Muscatine Journal

I enjoy giving Alayna hugs! Here she is full of giggles. If you catch her in the right mood her laugh is very cute. I just wish she was like this all of the time. Trust me, she has her fussy moments quite often. I guess we take the good with the bad.

Relaxing with dad tonight. About 10 minutes after this photo, she was fast asleep in her bean bag chair. Her eyes are looking a bit heavy, huh?!

Newspaper Debut

We feel very lucky that a journalist from the Muscatine Journal was willing to write an article about Alayna. The Muscatine Journal is one of our local newspapers that covers news in Muscatine and the surrounding towns. The article served two purposes in our minds. One, to spread the word about 1p36 Deletion Syndrome and to educate anyone we could reach. That was the most important purpose to both Dana and myself. And secondly, to publish the information about the upcoming benefit being held this Saturday night. Here is a link to the article as it is on the web. In the actual newspaper it was printed right on the front page with a cute photo of Alayna. We are very proud parents and of course love the opportunity to glorify Alayna and tell everyone what blessing she truly is.
http://www.muscatinejournal.com/articles/2008/11/11/news/doc4919aae172b8a671062428.txt

Neurology Update in Iowa City

Today we went to Iowa City to see Dr. Mathews, Alayna's neurologist that saw her last November during her 2 week stay at the hospital with RSV. The reason why we are seeing her again is because Alayna had 2 seizures back in September just out of the blue. Alayna was put back on phenobarbital and since she started the medication has only had 1 seizure that we have witnessed. Normally, Alayna has been on the liquid form and it tastes nasty. Usually we put it in her formula bottle to help disguise it. Fortunately, we get to try the tablet form and put it in food. She is a good eater, so I hope she swallows it okay and it's small enough that it won't gag her. We are allowed to cut it in half if we need to, but not crush it as it also has a terrible taste like the liquid. Dr. Mathews didn't feel like an EEG was necessary at this time, so the plan is to revisit her in 6 months. If things change or an issue suddenly comes up, we will handle it over the phone. Alayna weighed in at 22 pounds with clothes on and was 31 inches long. She's doing good!

Referrals to Other Iowa City Doctors Made

While we were at Iowa City, I asked Dr. Mathews if she would be willing to make referrals to a vision doctor, cardiologist, and a geneticist right there at the hospital. It has been our goal for awhile to get all Alayna's records and doctors at the University of Iowa. It is convenient and much closer to us than Peoria. Plus, we can always do two or more appointments in the same day because they are always willing to coordinate with the other doctors. So, Dr. Mathews made the referrals and we are in the process of setting up all of those appointments. She also reinforced to us that she is familiar with 1p36 Deletion Syndrome and believe that they did a study on it about 10 years ago. The geneticist she referred us to is very familiar to it and interested in it. We were so thrilled to hear this! Dana and I feel like Alayna is in the best hands at University of Iowa Hospitals and Clinics.

Thanks again everyone for all of your continued support. We look forward to spending this Saturday evening with a lot of you! We have a feeling that Alayna will be benefiting from this fundraiser for a long time. We are blessed to have her in our lives, to have a wonderful family, and to have you as our friends.