I apologize for the delay in posting an update on Josiah. The last few weeks have been unbelievably busy, and as I was thinking yesterday, I realized that it has been almost three weeks since surgery!
The surgery went safely (as I’m sure most of you have already heard.) We are so thankful!! Josiah was able to come home the next day… I was apprehensive about it, but it was for the best, as we were not able to get quality sleep in a hospital room with several other children. Within a couple of days after discharge from the hospital, he began to have flu-like symptoms. Hannah and I had the flu over Christmas, so my instinct told me that it was the flu. But red flags went up because signs of problems with hydrocephalus are almost identical to signs of flu. So, following the recommendation of the surgeon’s nurse, we made a trip into the emergency room at Children’s on Monday (the 5th.) It did turn out to be the flu, thankfully!
The following Monday (the 12th) he had an MRI, and then an appointment with the surgeon on Tuesday. She did note some changes in his head, and when I asked some more detailed questions about what his body might be doing, her answer was to shrug her shoulders and whisper “I don’t know.” We are not extremely concerned about her response on one hand, but on the other, it is hard to wonder about how things will progress. The surgeon has a motto of allowing the child’s body (through tests) to dictate what is done next, rather than following a “cookie cutter” plan. While spina bifida patients have many of the same problems, no two cases are alike – the neurological system is so sensitive, and every body learns to “re-wire” itself in a different way.
So we are, once again, waiting. Josiah is scheduled for another MRI and consultation the end of February. I would like to say that we will have answers at that point, but, most likely, we will either find out that a shunt is needed, or that we will have watch and wait longer.
Josiah continues with a full schedule of therapy sessions – we are looking forward to adding speech therapy, as well as an additional session of occupational therapy every week. More equipment and supplies are making their way into our home… we will be picking up his standing frame in a few days. I’m so excited about this! And we were able to increase and change our monthly catheter orders, with the hope that it will help reduce the risk of bladder infections.
Hannah has been such a helper around the house, learning to pick up her toys and make her bed. Even washing her crayon “artwork” off of the wall and floor a couple of days ago!😉 She has so much fun being a big sister.
Again, I’m so sorry for not posting this sooner – the last few weeks have evaporated rather quickly. Please continue to pray for Josiah’s health. He has been consistently struggling with various bugs since surgery. His current cough and congestion are rather unpleasant – I would love to see him feeling 100% again.