Thank you all for your prayers, e-mails and phone calls. It has been such an encouragement to us in this challenging time.
The last several days have been a crazy flurry of tests and meetings with doctors and specialists. Josiah “graduated” from the neonatal ICU to the neurosurgical floor (and a big boy crib!) on Monday afternoon. Because the nurses on that floor specialize in the care of children with neural tube defects, his being there has allowed to learn so much about spina bifida and what we should expect for the future.
So many specialists have been monitoring his progress… one of the more interesting meetings I have had so far was with the physical therapist. She is a very gentle, soft-spoken lady who is eager to teach. She spent time yesterday showing me how to properly position Josiah while he is in bed, to promote even growth of his spine and muscles. He has been through muscle testing, and at this time they are predicting that he will be able to walk with lower-leg bracing – with a possible need for crutches. He has already been fitted for ankle-foot orthosis (AFOs) – similar to braces, but used on infants to promote proper leg and foot positioning. They are so tiny and cute, but they look huge on him!
There are a number of other things that are being closely watched by specialists, and if there is one thing we have heard often and learned well it is that we need to be prepared for the unexpected… that there is no way to know or predict anything about his condition with any certainty.
But, all things considered, he is doing very well (we hear that often from the doctors and nurses), and we are very thankful for how the Lord has provided for us at this time. The opportunity to stay at the Ronald McDonald House has relieved the pressure of having to think about a lot of daily responsibilities – they have a fully stocked pantry, groups that make dinners in the evenings… even the small things like laundry detergent and shampoo. Hannah has warmed up to the staff, and, because she’s one of only a few young children here right now, they spoil her horribly! The hospital staff has also been very enthusiastic,helpful and encouraging – I would not want our son to be anywhere else right now. I sleep well at night, knowing that Josiah is being cared for by people who really do care about his comfort and health. (That doesn’t mean I’m getting a lot of sleep! )
Speaking of which… my goal was to be in bed an hour ago, and I still haven’t had dinner. Thank you all again – we are thankful for all the friendships that have been such an encouragement – I’m sorry that I have not been able to return all your phone calls just yet… I will continue returning calls as I have spare moments (and remaining minutes on my cell phone!)
