It has been a rough couple of weeks with Cohen. He has had a terrible virus and we have spent lots of time at the doctor and even an eventful E.R. trip I will detail for you later. He is still hanging onto a cold, but is finally getting back to his normal happy self. I am so happy he wasn't admitted to the hospital this time, even though it was close a couple of times!
Yesterday, We headed to Vandy to 2 appointments. His G tube has been leaking and having some yucky discharge, so we had it checked out. All looked fine there.
Next we headed to the Orthopedic doctor to talk about scheduling his foot surgery. At our last appointment in the late fall, I asked the doctor if we could wait until flu/RSV season was over to perform surgery. He said yes, so we are just now going back. Cohen has been doing physical therapy on his feet all winter and spring.
This is the only doctors office at Vandy that we consistently wait for hours. We brought books, magazines, etc. to prepare for the hours of misery! Our appointment time was 2:45. I think Dr. Lovejoy walked in the room at 2:40! SHOCKING!!
Unfortunately, that is the only positive part of our visit. The Doctor now thinks both feet need the surgery ( heel cord clipped) , and then casts for 6 weeks (he told us 3 weeks last time). Then he said Cohen would wear leg braces "indefinitely". You could have knocked me over with a feather at this point. There has never been any mention of this before.
We thought we understood that the surgery and casting would be the end of this. Apparently, that is not the case. This ortho doctor (like the first one we had) thinks that the problem is neurological. So, meaning if we do the surgery and he does not wear leg braces the feet will go back to how they were before surgery.
He said the braces will go up to the knee. All I could think of was poor little Forest Gump. I know that is not what they will look like, but it was just the image that popped into my head.
I kept saying, "What do you mean by that?" and "Are you sure?". The doctor is really nice and very patient, but I feel like he is so used to seeing all this that he is immune to it.
SO-----here is where we go from here.
Cohen will have heel cord surgery on both feet, along with another small procedure done by his ENT. We are waiting on both doctors to coordinate their schedules so we don't have the exact date yet. They said it should be soon though. I forgot to mention that this surgery is known for a easy recovery and is very quick. We are thankful for those things.
Cohen will then be in cast for 6 weeks before going into the leg braces. He will also continue his PT during and after all this.
Let me say all that to say this. I firmly believe they still just don't know why his feet are the way they are. Is it neurological? Is it because my water broke so early and he couldn't move? This is what we don't know. Probably will never know for sure.
What I do know is we will do everything in our power for him to be able to walk, hop, skip, jump, and everything else children do! Cohen is such a strong willed little trooper. I have no doubt he will be running circles around us soon. Braces or not!
Please continue to pray for sweet Cohen! We love and appreciate you all so much. I will keep you updated.
