Thanks to my mother-in-law, Viviane, staying with Isaiah overnight, we were able to have a really enjoyable time with my immediate and extended family at a picnic and then fireworks. We really needed that time to relax, laugh, and have fun. Plus, it was nice to see Josiah run, play, and just enjoy being a little boy.
We continue to covet your prayers and support. Isaiah is out of ICU, however, he is expected to have a long recovery. Best case scenario, Isaiah's bowels recover enough for reversal surgery before discharge in 2-3 weeks. Worst case, we are stuck her for another 6-8 weeks. Isaiah has been having trouble absorbing nutrients and fluids through his stomach and bowels, and the doctors have had to replace this loss daily. If he continues to lose nutrients, he will have to stay on IV nutrition much longer until he is stable enough for another surgery. Also, we are still dealing with pain management issues. We continue to fight with doctors on how much and how often to medicate Isaiah for comfort.
We are now staying at the Ronald McDonald House. We really enjoyed staying at our friend Sarah's apartment. It was nice, clean, and quiet. However, for Josiah's sake, once the Ronald House had an opening, we accepted a room. There are kids here for him to play with as well as a game room and playground. The House allows for some normalcy for Josiah.
Many ask how we are doing, how we are holding up--well, to be honest, we are incredibly exhausted. Josiah said the other day he is sad because we are not home and that he misses his room. Isaiah is completely out of sorts and has been very difficult to work with and even to be around. This particular hospitalization has been excruciatingly draining.
Besides Isaiah's condition, I think one of the hardest things we are dealing with is disappointment. We thought we saw a light at the end of the tunnel with Good Shepherd's rehab clinic with only 2-3 weeks left in Isaiah's program. Isaiah was doing so well with eating and drinking. Now, we are back at square one. We were looking forward to finally having less people coming through our home every day, ie. nurses, therapists, case managers. For the past 3 years, our house has not been a home, but more like a hospital/treatment/rehab/recovery center for Isaiah. As much as we appreciate all the help we receive for Isaiah, we really long for privacy and to have a safe haven all our own.
Please pray for the following:
1. For rest--that when we do get a break, that we can actually sleep and recuperate.
2. For Isaiah--for quick recovery, pain relief, that his stomach/bowels start absorbing nutrients, and that his fun, obedient, and sweet spirit comes back.
3. For Josiah--that he knows how much we love him and are here for him.
4. For Chris--safety as he commutes back and forth for work. Also, his work is going through a buyout and reconstruction which adds more stress and confusion in his work life.
5. For my neck/back--on Sunday, I headed back to HUP for more tests on my back. I was experiencing numbness in both of my arms for 2 days which was taking awhile to resolve. They did an MRI of my neck and and x-ray of my back--both of which came back normal. I am still having periodic muscle spasms from the accident.
A big thanks to my mom, Lois, that took time off work, flew up from TN, to give us a few nights off from CHOP. Also, to my brother, Doug and my new sister-in-love, Sarah, for also staying at CHOP with Isaiah. Our other friend, Sarah, is going to take the next 2 nights for us. We don't know what we would do without these breaks. Thank you again for all your prayers, support, gifts, emails, calls, letters, etc. We really are very dependent on your strength and love. Somehow, we hope that through all of this, God's name will be glorified and that we can see Him working. Sometimes it's just hard to see His goodness in the midst of all of this.