It's hard to believe that poor Isaiah has been at CHOP for 7 weeks and has not been home in 10! This has been an incredibly long journey and terribly painful at times. Thankfully, Isaiah has been in relatively good spirits the last few weeks, considering all he has been through. It has helped that he has had different friends and family stay with him, distract him, and bring fun things to play with. Thank you to everyone that has helped Isaiah cope with not so normal circumstances.
As of right now, we have a tentative surgical date for August 20th. Isaiah has continued to dump his food/nutrients out into the ostomy bag and has not been able to come off of his IV nutrition, despite all of their tricks. Dr. Collins is hoping that by reattaching the rest of his bowels, Isaiah will have a better chance of absorbing. It is not guaranteed that Isaiah's bowels will start reabsorbing, and that scares us. We have no where else to go right now, except into surgery. Please, please, please pray that this reattaching works. This will be a multi-step surgery as pulmonology and ENT need to get biopsies from Isaiah's lungs and nasal passages.. They are trying to rule out PCD, a possible diagnosis we were given back in March. We are still looking at another 6 weeks here.
As school starts soon for Josiah, we are just not sure how to manage everything. We won't be home before he starts kindergarten. Isaiah was also to start a specialized pre-K that incorporated some of his therapies. Pray that we can somehow figure out how to manage the boys, because so much has already been stripped from them. Regularly, one or both will say to us, "I want to go home and sleep in my own bed," or, "I want to be with you"; "I miss you"; "Don't leave me," or "I'll be good." It's heartbreaking for us to see them in pain. We just wish they could have a normal childhood, running and jumping, playing with their friends, looking forward to school. This year alone, we've been home only in January and May. The rest has been spent in a hospital or rehab setting. However, we've adapted the saying, "It could always be worse."
Continue to pray for the following children: baby Kaitlyn and her family, as they are in a very tough situation. Also, Dwayne (9 yrs. old) is waiting for a new heart. Seth starts a new therapy regimen. Aidan is still fighting brain cancer and his mom just had another baby boy, Brenden, who has a heart condition. Thank you for praying for Taylor. She finished her cancer treatments and was able to go home. Babies Fatima and Maria continue to get better, though it is very slow going. Baby Jenny was stable enough to be transported back to a hospital in Canada where she is from. We know all these parents covet your prayers just as much as we do and would say thank you if they had the opportunity.
On a side note, my grandpa, Dr. David Solt, had a heart attack this weekend. He was rushed to Doylestown hospital where had a catheterization and stent placement. He is doing ok, but we would covet your prayers for him as well. Both he and my grandma have been our faithful prayer warriors for years.