With so much going on lately I haven't updated on these two all week... But I HAVE written up a LONG post about them... that then got lost. So here's some pictures of our playtime today while Micah was sleeping. I've missed Brianna and Kristopher! I only spent a little time with them this week because they stayed home during both hospital trips. I'm so glad we got to play together today!
Awww...I love them! The one of K holding B is precious and beautiful!
ReplyDeleteMeredith, They are just beautiful & their sweetness radiates like sunshine. The pics of Emma & Micah just below are incredible, too. I couldn't get on Yuku to message you but wanted to share some info Sky's cardiologist from The Children's Heart Institute shared w- me here in Chicago. If you can email me at tschoonveld@hotmail.com I'd love to share with you. Or call me-- you have my #. Hugs & prayers to all of you.
ReplyDeleteTanya
Hi my name is April I have three daughters 4,6,and 8 and a son 2 with DS, I take my hat off to you. I know there are very hard time for us (can't imagine with DS children) but I would never change it for the world. WIlliam has changed us all for the better, he's just wonderful. He had a CAVC repair at 6 mos old,and you know from experience what a difference that made in his life. Have you been able to tallk to doctors online to maybe see if they can give you a better prognosis on your daughter? What state do yo live in? I hope to hear from you soon your story really pulled at my heart. My address is narrettog@yahoo.com If there is anything I can do to help you and your daughter please let me know, I dont mind emailing people to get info for you.
ReplyDeleteAs far as the sticky tape from the hosp I think we just used rubbing alchohol.
Good luck,
April
I have read a little about your family and about Emma's prognosis. I read on the Wild Angel's website about your family, and thought I would check it out. My son passed away in September after terrible complications from complete AV canal repair. The repair was sufficient, but the care afterwards was deplorable, and led to his death two months later. I am now working on a position at our local hospital as a volunteer OB patient advocate for families that are surprised at birth with a medical diagnosis. We didn't know until our son Penn was born that he had DS and AV canal. We blindly accepted our physicians opinions on where he should have surgery etc. Since then I have done extensive research on sources available to the public about hospitals for children, and Children's hospitals. I have produced and am working on publishing a document for the families that I council with regard to their options of hospitals out there. I know God is in control. He leads us in directions that bring out his Glory, and well....perhaps I was meant to visit your site for a reason?? According to my research Boston Children's is the #1 hospital for cardiac surgeries on children. I could send you my research if you'd like. I just thought that maybe you could get yet another opinion...i know you seem to really have a great relationship with your cardiologist, and the surgeon that took care of Brianna really touched you as well. But, maybe there is someone else out there better suited for such a delicate gril such as Emma? Well, that's my unsolicited 2 cents worth. I will keep your family in my prayers daily. If you want my research, you can email me at tadharding@hotmail.com. Thanks. Tanya
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