It has been forever since I posted but I want all of you to know that I think of you fondly. I hope you are all finding joy and solutions for your family concerns. We recently passed the 40th week post op with Clay...hip, hip, hooray! He has basically regained everything he lost from the medical crises. His weight is now back at 80 pounds after dropping to 63 or so pounds in July/August. He has grown approximately 3" of bone length (documented). He will celebrate his 25th birthday on May 19. He received a new power wheelchair a couple of weeks ago. We hope to attain a new 'hospital type' bed in the coming months called a sleep safe bed. I'll try to post the link for those interested in a very safe sleeping environment. We battled trying to keep him in a standard hospital bed during the approximate five months he was inpatient. The feeding pump setup is going well and we have adapted accordingly. We are back with using the pump via the Mickey gastrostomy button, able to discontinue with the jejeunostomy placement last August. All in all things are going well and we are amazingly blessed that Clay survived this last year. God still has greater plans than any of us realize in a given moment. Keep your seat belts fastened and hold tight to your faith. You are all stronger than you understand! I love you all~
www.sleepsafebed.com
2 comments:
Hooray for Clay! And so glad to hear from you after all this time. And so glad to hear that Clay is doing so well.. You truly have had a rough year, but I know your faith has pulled you through. thanks for the inspiratioin.
YAY! I'm so glad you post here, we can all learn so much from you!
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