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.
5 comments:
There is no reason to stop posting, Donuts. I think I can speak for everyone (local or not) when I say we want to see the kids grow up via the blog.
PS ... Thank GOD they look like Janice!
My husband & I have recently found out (just this past July) that our 7 year old daughter has Mosaic Turner Syndrome. She also has had many tests done at Cleveland CLinic. She's had hearing tests, renal ultrasounds, Echocardiogram of her heart, and visited pediatric Endocrinology. She too, has a bicuspid aortic valve. Her kidneys are normal, her hearing tests are good, and just 2 weeks ago we started the daily growth hormone injection. Kaitlyn is 7, but not much taller than her 3 year old little brother. I would love to talk more with you, and be a support for one another... we live right here in Ashtabula. Kaitlyn goes to Thomas Jefferson elementary. My email address is: kmcrockett@live.com if you'd like to get in touch. I can share with you the things as Kaitlyn experiences them, and would love to have someone to talk to that understands what I am feeling as another mother with a little princess who has Turners.
~Kristie Crockett
Just wanted to tell you how happy we were to see the story in today's Star Beacon about Jenna. You folks have been in our thoughts and prayers.
We heard a few weeks ago that Jenna was diagnosed with Turner's.
Janice, we lived across from you on 41st street. You may not have realized, but our daughter,Amy, has Turner's Syndrome. Every case is different, Amy is a mosaic. Amy just received her Master's Degree and has lived in New York City for almost 3 years. We are very proud of her.
It sounds like Jenna is in good hands. She is very fortunate to have you as parents.
Michael & Debra Brown
Wha'? Stop posting? Are you kidding? So many of us have taken you on as "family"--you just can't leave us hanging. Some of us who haven't said prayers in too long of a while were having some involved conversations with the "Big Guy upstairs," asking Him to hold tiny Jenna in his big hands and keep her safe and strong. We were asking him to do the same thing for Jenna's daddy, mommy and big brother, too. This little girl has stolen so many hearts in this community already, and she and her little brother have become the little reigning princess and prince of Ashtabula, the way I see it. We are so very, very thrilled that Jenna is surrounded by the love of her family and by the skill and wisdom of great healthcare providers. Jim...we're with ya when the going is rough--so you have to share the "fun" stuff too! So many people in this community have been following the awesome progress and we know that Jenna is in good hands--yours and your family's, the docs' and God Himself. There will be challenges, but you have a community of friends who care about all of you. You decide whether to post or not, but I'm going to work on "guilting" you into keeping us updated from time to time.
I saw your story in the Star Beacon. Truly wonderful! I'm so glad to see that your family is growing and that little Jenna is getting healthier by the day. The two of you are so blessed. Your children are absolutely beautiful! Enjoy every minute of everyday. So sorry to hear of the things you had to endure, but so happy to hear that you're all doing well! Take care, Melanie Carmack (Griffith)
Post a Comment