Having another sleep study since Caleb suddenly got off o2. We will decide if we need to reschedule his surgery for the removal of his adenoids. He had a lot of sleep apnea and we will see what it is like now. Caleb is being pretty sassy :) He is 21 months old and has full trisomy18
Saturday, January 8, 2011
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Caleb defines 'PERSONALITY'.
ReplyDeleteHello Caleb and family! We were so encouraged and inspired to read your story thanks to a friend who lives in Gainesville and brought it to us. I live in Jacksonville, (Orange Park,) and have a great niece, Lilly Hollowell who is a Trisomy 18 baby. Lilly was born on the 4th of July, 2010, in North Carolina and sent home the same day to die. The dreadful doctors in that tri-state research area refused to treat her in any way except as 'incompatible with life.' So I found her some wonderful, wonderful, U of Fl doctors right here at Wolfson's Children's hospital. They took Lilly in at 3 months old, 4lbs 7oz, (1 lb lower than her birth weight) and fattened her up to 5 lbs and loved her for 2 weeks before putting a pulmonary artery band on to keep the fluid away from her heart. She came through it with flying colors,proving to be the little firecracker that she was born to be and thanks to prayers from all over the world and doctors and nurses who are believers. She will have the hole in her heart repaired when she is 10 lbs or close to it back at Wolfson's. She has been back home in North Carolina since October on an NG feeding tube and is slowly but steadily gaining weight.
We are so excited and thankful to know about Caleb's journey and to see his absolutely GORGEOUS face! Watching him laugh at the paper on the table brought tears to my eyes.
My niece, Lisa Hollowell, the mommy, will be contacting you soon as I sent her the article from the newspaper and Carie (Stinky's mom) gave her your blogspot and she gave it to me.
I hope you 2 families will have a chance to meet when they are back here for Lilly's surgery since you are so close. In fact, Lisa lived in Ocala for several years before Lilly was born.
I saw that Caleb has a Urologist in Jax. If you ever need a place to stay here, I have a whole upper story with enough bedrooms and bathrooms for your family and would be honored to have you. (We love these special babies!)
Please know that we will be following Caleb's blog and he will now be added to our prayers along with Lilly. As we know, God is in control and has plans for these babies.
I am on facebook. Pam Bowers
email pam@thebowersplace.com
and here is Lilly's blog
pray4lilly.blogspot.com
Lilly and Caleb look like they could be brother and sister.
God Bless you,
Pam
I haven't been by in a while and can't believe how much he has grown. My daughter is Annabel with full T18, she is almost 6 yrs. I saw where you said he suddenly didn't need oxygen any more or as of late. I wanted to say I am glad for Caleb and this has recently happened to Annabel. I am interested in what his sleep study shows. Thank you for this post.
ReplyDeleteCathy
annabelgrace.blogspot.com
Jeannette,
ReplyDeleteThank you so much for sharing your story. It always gives me so much hope for our son when I find boy survivors with Trisomy 18. I am 24 weeks pregnant and we were given our Trisomy diagnosis about three weeks ago. Dr. Richards is my doctor and I was told that he delivered your son. I was wondering you gave you your prenatal care. I have so many questions for you. I know your time is precious but I'd love to be in contact with you. Either way thank you so much for a ray of hope where before we had only seen tiny glimpses!
Sincerely,
Heather Haynes Gainesville, Fl
What an amazing little boy you have!
ReplyDeleteHi caleb
ReplyDeleteMy name is Jenna and I came across your site. You are a brave courageous fighter, an inspiration and a hero. You are full of life, spunk, happiness, smiles, joy, love, courage and fight. I was born with a rare life threatening disease. http://www.miraclechamp.webs.com I love it when people sign my guestbook or email me. I lvo emeeting new friends.