Ben's Doctor's Appointment... good news and bad

Ben had two doctor's appointments this week. One was another follow-up on his nasal opening surgery. I'm still dilating his nose twice a day and every time I dilate, I feel like I'm having to push through some membranes. His scar tissue is trying hard to close over and I'm not giving up the fight. So far I'm winning! The nose is still open on both sides (I was worried the left side closed up before the sinuses because I couldn't get through). This is great news because this is the LONGEST Ben's nose has ever stayed open. We are going down to a smaller size dilating tool. The thought behind this is that maybe the smaller tool won't cause as much trauma and will allow the nose to heal a little but still allowing me to make sure it stays open. Maybe the other one was just too big and his nose isn't meant to have an opening that large. The goal is that I will one day be able to stop having to dilate and his nose will stay open on its own. We will continue twice a day dilations in the meantime and will follow-up again in a month.


Ben also saw his Ortho doctor to follow-up on his femur fracture from last December. The bone is completely healed with only a small amount of scaring. That is the good news. The bad news is the his bone is curved. They seem confident that over time Ben's bone will remodel itself into the correct position. His bone also healed rotated a little, so that too will have to remodel. And, we learned something that we weren't aware of. Ben's hip sockets are not where they should be. They see hips like his in their CP kids. The good news is that when he was put in frog position for one of the Xrays, the hip moved into the correct position. That would have been very bad if it didn't. But, they need to keep a close eye on it and make sure it doesn't slip anymore out of place. This hip socket issue was present even on his original Xray the day he had the break, so this isn't related. They also said that some of their CP kids do walk with hips even worse than Ben... that was my main concern. They didn't say, but I'm sure this hip issue only adds another challenge to Ben learning to walk. Not only does he have weak muscle tone and tight ligaments, a major break to add weakness in his legs, missing semi-circular canals (the part of the ear that controls balance), a small and damaged cerebellum (the part of the brain that helps with balance if the semi-circular canals are not functioning), he also has this hip issue.


I'm still holding out hope that Ben will be able to walk one day, but with all he has to deal with... I'm starting to wonder how he could possibly overcome all of that. It is just starting to seem like I'm holding on to an impossible dream. I just haven't been ready to accept that fact that Ben may never walk, and I'm still not ready to accept that.

He needs to see a different Ortho doctor in 4 months... one who specializes in Hips. There are only two of them. One of them was the previous doctor Ben saw who we really disliked. She seemed too busy to even take the time to look at his Xray. And, she NEVER even mentioned this hip issue and has seen his a dozen times. Needless to say, I choose the other doctor. I also have called to set Ben up for Hippo Therapy come Spring. I'm hoping that may help his hips and balance. Katie Kauffman does Hippo Therapy and her family says it has helped her a bunch.


Here are Ben's Xrays. The notes are more reminders and comments to myself so I remember what I'm looking at. You can click on the image to view it larger.

So Proud

I am so proud of Ben and his progress at school. He is doing amazing and has such a wonderful team working with him. It seems his team really understands the best way for him to learn and is presenting him with new things every day... new things that he is picking up so quickly! He is able to match colors and pictures, hand over the correct picture card when asked for it with sign language, sort the right chip into the same colored bowl and much more. As long as you give him a big applause after each correct answer, he keeps on working away. I'm just thrilled and impressed with our little hard worker.

I also took his cochlear implant in to Audiology today to make some modifications to it. Hopefully with these new modifications, he won't yank it off when someone yells (he hates that) and will wear it more at school.

Itsy Bitsy Spider

Ben was our little itsy bitsy spider for Halloween. I think the costume scared him. He probably thought is was another medical contraption we were putting on him.

"What is this thing I'm wearing? Get it off, get it off, get it off!"
"Oh my goodness, I have 6 arms now"

"Maybe I can chew off the extra four"

"The best defense is to just sit still. I'll mentally go to my happy place."