Updates from our four office visits last week

Hello friends and family.

It has been almost a year since our last blog update. Overall, it has been one of the best years for Jacob, physically and healthwise, in the four and a half short years he has been with us. He hasn't required any surgeries and really only had one noteworthy procedure (an annual MRI). He was generally free from significant illness and grew a ton (gained 15 pounds and grew about 9 inches). Praise the Lord! This past week, we made a trip to Johns Hopkins Hospital in Baltimore, MD to visit with each of the four surgeons and also attend the annual picnic for extrophy patients. Below is a summary of what each doctor had to say and some info on what might be needed in the coming months and years.

1. Neurosurgeon (handles the spinal aspects) – advised that there is (and probably always will be) some tethering of the spinal cord. He said that at some point in the future, Jacob will likely need to have a surgery to release the tethered cord again, similar to what he had done in 2007. He advised that he will be looking for symptoms rather than relying MRI’s and indicated that unless things change, we can actually wait two years before getting another MRI (instead of getting one every year).

2. Orthopedic (all things bone related) – was pleased with Jacob’s mobility overall. He did notice that one of the supporting screws in his pelvic bones (originally put in during the 2008 surgery and redone in 2010) had pulled away from the bone. He’d like to replace the screw with a longer one, but feels like we can wait until the next Urology surgery in order to “combine efforts” and save anesthesia.

3. General Surgery (handles the colostomy/stoma/bowels) – we were a little concerned going into this visit because our regular doctor had to cancel due to an emergency issue that came up. The doctor we saw this time was one who had previously wanted to perform surgery on Jacob that we were uncomfortable with him having at this age. This time, however, he did not take that approach and really deferred to our regular doctor and the Urologist to help make this decision. We are thankful for this answer to prayer. They are, however, still quite concerned with the amount bowel he has on the outside of his body. The Lord has sustained Jacob, though, for over a year now with this “prolapsed stoma/bowel”. We do hope to speak with the General Pediatric Surgeon to get his thoughts and it is certainly a possibility that Jacob will need to have this concern addressed sometime before he goes to Kindergarten in the fall of next year.

4. Urology (all things bladder related) - because Jacob’s condition, cloacal exstrophy, is largely a Urological defect, we kind of refer to this doctor as the main/primary doctor of the four. He examined Jacob and was extremely pleased with how good he looked and how much he had grown in the past year. He was also concerned about the prolapsed stoma, even though that is not his area of expertise. We discussed when the next Urology surgery might take place (it would likely be a continence stoma surgery to allow Jacob to be “dry”). He said that it will typically between ages 5-8. After discussing it further, Courtney and I feel like we may want to wait until later so that Jacob will be able to “cath” himself and have more independence rather than relying on us to do if for him. In the meantime, though, the Urologist would like to check Jacob’s bladder capacity this fall to get a better idea of where he stands. This is an outpatient procedure and so far we have not scheduled a date for this to happen.

Overall, the doctors were very pleased with how much Jacob has grown, both in height and weight, during the past year. However, as noted above, there are a few areas of concern. We continue to covet your prayers for wisdom and direction on how to best proceed with the upcoming procedures and possible surgeries. As it stands now, we may see about combining the bladder procedure with the colostomy repair/revision so as to do as much as possible during our next visit.

God was so very gracious in allowing us to get into the Children’s House for our entire visit last week and for allowing our meetings with each doctor to go smoothly. We never cease to be amazed by HIS grace, mercy and love, demonstrated time-in-time again throughout this journey in our life.

Mommy and Daddy