A Recap of 2007

Enjoying an evening with family, cousins, and of course, Santa!

I'm almost 11 months old!

I can eat both fists now!

Me and my big sis. Like my 1st Christmas hat?

Alayna trying to eat Santa's beard!

Grandma Diana, Alayna and cousin Ava. Both of the little ones were battling a bit of a cold. Aww!

Aren't they all cute? Even Grandma!!!

Grandma Diana and little Alayna. This is a great picture of the two of them.

Angie, Annette, Diana and Mimi at Heritage Woods. We went to have a Christmas lunch with Mimi and I'm so glad we took this picture of all of us. These are 3 of my "rocks."

First of all, happy holidays to you and your family. We are so thankful for the many blessings of this past year and I'd like to take this opportunity to recap 2007. This year our family was delivered a little piece of heaven.

Alayna was born January 29th and was a tiny 6 lbs 2 oz. Her cry was so faint and barely there. This was an alarm for the nurses and one of the many signs that there may be something not quite right. She spent 5 days in the NICU trying to regulate her oxygen all by herself while also waiting for a VSD and ASD in her heart to hopefully heal themselves. She had a chromosome test and it came back that all was fine. We thought we were good to go.

During the first few months at home however, we battled feedings, spitting up, being non-responsive, and other delays. Alayna just wasn't meeting milestones and I questioned her hearing and vision. On Good Friday, it was apparent she was battling some type of infection and we spent the next 5 days at Peoria's Children's Hospital. She had a UTI and many other tests were performed, again due to some of her abnormalities. On April 18th, we were given the bittersweet news that she had what is called 1p36 Chromosome Deletion Syndrome. This was detected by using a very high resolution chromosome test called a FISH test.

April 18, 2007 will be embedded in my mind forever. We were getting ready to go visit Grandma Billie at the college. Plans quickly changed when the phone rang and it was our genetic counselor from Peoria. The news was a shock, but at the same time it was a relief to know what the problem exactly was. It was a big relief to know that we had an answer and we could now address Alayna's needs and move forward.

1p36 Deletion is a name for a deletion on the first chromosome. Alayna is missing the capped end of her 1st chromosome. It is such a small deletion that it is hard to see with basic chromosome testing. The 1st chromosome is the largest in the body and carries millions of genes. She is missing some vital genes on this chromosome that help connect with other chromosomes and allows things to function and communicate. She is globally delayed and many other symptoms go along with it as well. Dana and I were both tested and we do not carry any rearrangement or translocation of any kind. This was just a fluke thing and most 1p36 children are results of that. Research is being done to study why chromosomes break. There is tons to learn.

Alayna began the Children's Therapy Center for physical and speech therapy in June. She continues to go and is progressing nicely. We continue to work on her strength, sitting, rolling, grasping toys, and tons of other things that just come naturally with normal developing children. Alayna has definitely reinforced the fact that we should never take things for granted. Even the simplest thing like smiling didn't come easily for Alayna. She finally grinned at around 4 months old unlike most children who are 4 weeks old.

In November, Dana, Alayna and I went to Jacksonville, Florida to meet our other "family." We are members of a 1p36 Deletion Support Group online and we met about 20 families and their children. It was wonderful and I can't express the gratitude I have for all of them. They are amazing people who provide us with so much advice and support. It is such a comfort to know that there are other people going through the same things we are. We share stories about milestones, advice on medications, tips on therapy, happy moments and even moments of tears. I love all of them and our kids are such inspirations. We literally can feel the positive vibes across the country.

Unfortunately, we spent Thanksgiving at University of Iowa Hospitals with Alayna. She had a very tough battle with RSV and pneumonia. She gave Dana and I quite a fright when she stopped breathing at home and Dana had to perform CPR on her. Alayna had her first ambulance and helicopter ride in about a 18 hour period. We finally got to come home and we are so thankful to be home for her first Christmas holiday. Easter and Thanksgiving were rough and we are going to enjoy this holiday for sure.

Since we've been home from Iowa City, Dana and I have noticed that Alayna is getting so much stronger and meeting some new milestones. Just a few days ago she showed us that she can lay on her back and roll to her side all by herself! We were so excited. Even the kids got excited! She is getting so close to rolling completely over. It is nice to see her becoming more mobile and being able to scootch around. She doesn't go very far, but she can change positions. She also seems to be more interested in her toys and trying to reach for things. Again, we are so thankful to have Grandpa Denny and Patti babysitting her during the day and working one on one with her. It's our goal over Christmas break to get her to roll.

Alayna has taught us to be thankful for the things that come easy in life and to work hard for the things that don't. She has taught us the true meaning of unconditional love, reinforced our faith, and strengthened our family's love for each other. She has showed me that my challenges are mole hills and not mountains. She has introduced us to the special needs community, one of which we were unfamiliar with until she came to us. She has taught me to relax, take one day at a time, and not get so focused on the little stuff. It's the big picture that is so important. She has made the biggest mark on our hearts, especially her brother's and sister's. They have showed more compassion this past year than ever before. They love her so much and even though they don't quite realize the challenges she will face, I think they know in their hearts that she is special in her own way and needs to be protected.

Alayna is just what we needed. God knew that and sent her special delivery to us. We are thankful this holiday season for her and all of the other gifts he has blessed Dana and I with. We cherish these special moments with our children and hope to create special memories for them to treasure forever. They grow up so fast. I know this because it seems like yesterday that I was the kid wishing I was old enough to sit at the adult table to eat Christmas dinner. Boy, how I'd love to be a kid again!


May God bless each one of you as he has blessed me. I have a lot of support from my husband, our parents, sisters, grandparents, aunts, uncles, cousins, and friends. But my ultimate rock is my faith in the Lord. He's always there.