Wednesday, October 15, 2008

Happy Birthday Big Brother!!!

Happy 3rd Birthday Jimmy!!!
Yum...Cake!!!
Did someone say cake???

Happy 3rd birthday to Jimmy! This big brother has been through many adjustments this year and has passed with flying colors. He's going to be a great big brother through the years and we are so blessed to have two beautiful children to share our lives with. Just had a cupcake he picked out at the store with Mommy today and the family party will come shortly. Grandma and Grandpa stopped by as well to wish the big guy a happy birthday along with his cousin Raymond.

Jenna continues to do well, she is over 8lbs now and it seems she is getting bigger each day. Thank all of you for your thoughts and prayers. Since the article about Jenna was in the paper, we have received so many letters of support, cards and e-mails with wonderful thoughts. Don McCormack did an outstanding job on the article. If you didn't see it, here is the LINK to the article in the Star Beacon.

Above is a recent picture of Jenna, with Grandpa (can't see much of Grandpa, but it's him!)

Thanks for checking in and we'll see you all soon!

Tuesday, October 7, 2008

Genetics Visit...

Daddy's Little Heralds...

Daddy's Littlest Herald...

Hello again everyone! Janice and I are truly amazed every time we visit Jenna's site to see how many people have visited. To know you are still thinking about us and getting angry with me for not posting as soon as we got back from our Genetics appointment Monday is a wonderful feeling. Thank you all again for all your thoughts, prayers and support.

Janice, Jenna and I ventured back to Cleveland to meet with her Genetics doctors and to begin to get an understanding of what is ahead. Jenna, as you know, has Turners Syndrome, a 45, X karyotype. Basically, this means Jenna has 22 complete pairs of chromosomes, and the last contains only an X chromosome. Here is a good picture of what the chromosomes look like in her. Notice the single X in the lower right hand corner of the diagram. Jenna should have received 23 chromosomes from Mom, and 23 from Dad. In one of us, one X was not there. The level of deletion of this X in her DNA is what causes the abnormalities such as the coarctation of the aorta and her horseshoe kidneys. (We did find out her kidneys are connected only by a fibrous bridge and not kidney tissue.)

We know that there are cells in her that contain both X's, but unless we took biopsies all over her body, we will not know what contains both. There is really no reason to do this either. Jenna is presenting with all of the symptoms of Turners Syndrome, she has been treated for the heart defect, we have been educated about her bicuspid aortic valve and issues we will have to face with this and her horseshoe kidney...In our opinion, it is time to settle down and enjoy our gift.

We have been told to take the next 6 months to a year and just enjoy our new life with our two children. There are things we need to be more aware of, but it looks like we get a break for a little while...

Our next step is to meet with an Endocrinologist to begin to discuss growth hormone therapy and estrogen therapy for her. From what we have learned we could start hormone therapy as early as 9 months and estrogen therapy when she is 12. There is so many things that can happen from now until then, and we will continue to be educated on her condition and can now truly dive into what is reality for her.

There will be many decisions to make in the upcoming year for her. At this point, we just do not have enough information to start Jenna on anything. Not to mention, we need this break. Football season is in its last two weeks, and although the Holiday are hectic, it is actually the slower part of the year for us. Janice will go back to work after Thanksgiving and Jenna will continue to get stronger and healthier.

This will probably be the last post for a while since we really will not have much to report. There are no doctors appointments in the near future besides the normal pediatrician visits each month. I will try and post new pictures of Jenna periodically. Again, we cannot thank all of you enough for all your prayers, gifts and support. We are so thankful for the friends and family we have. This has been quite an experience for my entire family. We felt your prayers and were energized by your kind words and comments on this site. God bless you all, and here is to a happy, healthy and safe Holiday season and years to come.