Logan J. Stout

Because my flight was cancelled, I had to listen to what the doctor was saying over the phone – which is a bit difficult when you have a child that sometimes doesn’t understand voice control. While I didn’t get all the information, I did pickup both good and bad things.

An MRI of the brain showed improvement over what it was last year, which the doctors like. This follows the theory that progression of the disease will stop and that it could actually improve. I didn’t get to hear all of it, but I imagine it’s the buildup that Hurler’s causes that is continuing to be cleared out. In other words, (if my theory is right) the missing enzyme that was introduced with the transplant is doing exactly what it should be doing.

Glasses is no longer necessary anymore either. His vision has returned to one of a normal four-year old. He normally had an astigmatism, but apparently that has gotten much better. So with his corneal clouding being minimal in addition to the astigmatism getting better, they see no reason for him to wear glasses anymore.

His facial features also continue to improve and lose the “Hurler’s” look which is also common in post-transplant kids where the coarse facial features that they have will slowly fade away. The doctor commented again this year at how much less he is looking like a child with MPS.

Otherwise, almost all the tests that the doctor received was normal or he thought there was nothing to worry about.

Unfortunately, it sounds like there may be some surgery needed on his left hand within the next year due to a potential development of carpal tunnel’s syndrome in his left hand. Occupational and Physical therapy was recommended, but the doctor stated that whether it’s three, six, nine months or a year … surgery on his left hand will probably be necessary.

All-in-all though, it’s what we expected. While the transplant does fix a lot of things – there can still be issues that will need to be dealt with. But, for the time being – outside with getting him to a few doctors and into the therapy, it’ll be back to a normal life for him once he gets situated in Michigan again.

So, on Tuesday, the appointment with the bone doctor didn’t actually happen – it was this morning. Luckily, the curve of his spine hasn’t gotten any worse, I guess it just looks like it has – but for the time being they will leave it alone and may address it down the line. His knees are still in good shape, but they think they will need to be stapled down the line (common for kids with Hurler’s) and for the curled fingers, occupational therapy was suggested.

Otherwise, it was mainly routine things that happened today – he had an MRI today and I believe he got his behavior evaluated, so hopefully some good news comes out of that. Tomorrow at around 3, I will be taking off for North Carolina, so I wouldn’t expect a big update on what happened tomorrow unless I choose to do that over my phone.

But Friday evening I plan on making the big post, where all of this results are given by his transplant doctor. The only thing we won’t know are his T-Cell count, which tells us the percentage of donor cells in his body – we’ll find that out within the next few weeks.

Logan is down in North Carolina for the week. I will be going down on Thursday night to meet with his transplant doctor, Dr. Prasad, on Friday. But, I got some info on what happened today.

All that really happened was that they did something along the lines of a nerve-function test. They did this on his hands to determine any potential carpal tunnel syndrome that he may be developing. Apparently, the boy didn’t like it and essentially had to be held down … which probably didn’t make things much better.

No results were really given (as in, what the person doing the testing saw as good or bad) so we will most likely get the results on Friday. Though, a nerve-function test was never done in any of the other post-transplant checkups … so I’m not sure if this is new to the general testing for Hurler’s kids, or if this was specifically ordered.

That was his only appointment for today. Tomorrow will probably have a bunch of more testing – including an appointment with Dr. Fitch, who is the pediatric orthopedic doctor down there. He’ll be the one looking at his knees, curled fingers and curved back – so it’s kind of a big deal for us. If anything will need to be done or suggested, the doctor will probably let them know – and then the results will be sent for Dr. Prasad to see and discuss with us on Friday as well.

He has adapted to staying in a hotel quite well. Despite asking to go home after getting off the plane while heading to the hotel, he crashed from roughly midnight until 10 a.m., and even then he had to be woken up. Generally, with his sleeping issues, we don’t like to “stir the pot,” so to speak – so putting him in an environment that he isn’t used to makes us worry that it may screw up his sleeping schedule or keep him up all night … but apparently everything went fine.