The good news is his pain seems to be under control for now and he is sleeping peacefully. We received the genetic test results back today from the lab in Pennslyvania and they confirmed the diagnosis. Again, we weren't surprised. They have also mapped his HLA (bone marrow) type, so now we can move forward with the priliminary search to find a donor match. The best part of today was when Kelptyn was able to open his eyes a bit...I think this made him less scared. His swelling is starting to go down. :)
So after a rough night with discomfort, Kelptyn was NPO again today from 6:30-4:20 because he had a PICC line put in. Thank the Lord he got a PICC line! This way the nurses can draw the daily blood labs without poking his tender body multiple times and digging around for his veins (most of which have been used/blown). I think I'm still suffering from Post Tramatic Stress Nightmares related to his multiple pokes while he's screaming. Seriously, an awful experience. However, we're moving on. I told Matthew, my husband, that we've done walks for breast cancer, autism, triathlons for ovarian cancer, and bike rides for MS....but that today I had to walk for Osteopetrosis....I walked out of my baby's intensive care room, I took a shower/nap, and I walked back. Sometimes I just have to make myself walk.
The good news is his pain seems to be under control for now and he is sleeping peacefully. We received the genetic test results back today from the lab in Pennslyvania and they confirmed the diagnosis. Again, we weren't surprised. They have also mapped his HLA (bone marrow) type, so now we can move forward with the priliminary search to find a donor match. The best part of today was when Kelptyn was able to open his eyes a bit...I think this made him less scared. His swelling is starting to go down. :)
7 Comments
Raquel Dixon
9/28/2011 01:15:48 pm
My heart goes out to you, your husband and that little fighter,Kelptyn. I continue to pray for your family. Much love, Raquel
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Eileen Randall
9/28/2011 01:24:06 pm
Dear Sarah, Matthew and Kelptyn,
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Bec
9/28/2011 02:38:07 pm
SO HAPPY to read he can already open his eyes, when the doctor was describing what could be expected I felt so helpless for the little guy, how would one even know what was going on, then looking at you both I felt more helpless for you as his parents. Keep walking Sarah, sounds like there is a definite plan and route you have in mind and we WILL all help you get there. Love you.
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L&L Grandma D
9/29/2011 07:28:47 am
Sweet beautiful boy.. my prayers are with you.. My prayers also for all the amazing doctors and nurses as well.. love you guys.. stay strong.. Im walking with you Sarah.. Lots of love
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Georgia Brito
9/29/2011 01:05:52 pm
Sarah, Thank you so much for sharing your story with us, and keeping us updated on your beautiful son. Kelptyn Jack and your family are in our prayers everyday. If you need anything, someone to bring you a coffee, cook dinner, a scalp massage at the salon, anything, please let us know. We will continue to pray for your family. Give Kelptyn kisses from the britos =)
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Stephanie I
9/29/2011 01:25:36 pm
We say a prayers all day and night for you our dear little friend. We love you more than you can know and we can't wait to get to play with you again. Sarah and Matthew...sending love and prayers. Let me know what you need! Love and prayers from all of us.
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aunt tinker
10/1/2011 12:05:55 pm
So nice to spend some time with you and hold Kelptyn and hear his chatter. He is really looking good considering it is only 5 days since the surgery. For those of you who can't get up to see him he loves to lay just about anywhere he can kick his feet into something, preferably something that makes noise. He like to go out in the playground and feel the sun. He loves to hear his dad play the ukelele snd let him acompany on the drums. He is a happy baby for sure but having such loving giving parents helps. love you
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AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
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