Some good news, some not so good news

Happy upcoming Halloween everyone, stay safe and enjoy the parties. Max's engraftment went up a little bit to 18%!!! Although it doesn't change anything really, it is better than what we have been expecting and does give us a little bit of hope. Our doctor said that we could easily wait a few months if nothing changed and she doesn't think that Max is getting any GAG deposits in his brain for now. She does think that his engraftment will eventually start going down again though. So a couple percentage points up was a very pleasant surprise. Also his last GAG test found even fewer GAGs in his urine, about 30 was the number. When we started looking at a second transplant it was around 60, then went down to 44 without ERT. Max's GAGs going down to 30 which is very close to normal range is a good thing, but also to be expected with ERT. We're really praying hard that Max's engraftment goes up to a level where we know for sure it is safe for his brain and he doesn't need any more ERT, a consistent 25% would probably be great...
The not so good news is that Max will be needing surgery for his trigger fingers. From what the doctor explained and I read online, it is better to get those fingers taken care of as soon as possible so there is less risk of permanent damage. We went to see the hand specialist and he also said that Max may have some very early signs of carpal tunnel syndrome. We'll get an EMG to test if he does on Tuesday and then decide on a surgery plan. Most likely, Max will get his fingers and his carpal tunnel (if it exists) done in one surgery and G-d willing it will be a smooth success. It does break my heart a little that someone is going to cut into my baby's sweet little hands, but compared to everything else Max went through, I'd say this is less scary although we will be dealing with anesthesia which is never good for a little MPSer. Anyways, we'll deal with it as necessary.
The happily usual news is that Max is growing and playing and learning and we went hiking again in our park today.
Thanks for keeping up and have an enjoyable Halloween!

slow and steady

engraftment 16%. Everything else is ok. Max has a couple of trigger fingers that we're going to see a hand specialist in Cincinnati for. I'll post more as we have some more answers I guess. Also last Friday, Max's line ripped on the inside and we had to replace half of it, pretty short process, except to see if it works, you have to wait 4 hrs. in the hospital for the glue to set. We were supposed to be there from 9-3, instead we were there from 9-9. Oh well.

Max is 20 months today!

As the title suggests, Max is 2o months old today, which means he's only 4 months away from being 2 years old. Where has the time gone? We went hiking through our park yesterday and Max had a great time playing in the forest. In general we've been playing and dancing and learning and just having such a great time that it's almost unbelievable that Max's engraftment came back this time at 16%. It took a little bit longer to get the results because I switched the ERT sessions to Louisville, which is much easier, but they have to send his blood to Cincy for testing.

This last week was a little bit frustrating because they didn't have the Aldurazyme on Wed morning when we came. They promised it would be ordered for Thursday, but it wasn't. Then, the scheduler in OMO told me there was no room for Max so he'd have to wait until Monday. What!? After arguing with everyone I could, we managed a room for Max in Inpatient Friday night so he could get his medicine. We finally left the hospital at 10:30 at night, but at least we got his meds. Hopefully it gets better.

Also, Max has been taking his dressing off recently. We are currently trying the double shirt + one shirt backwards technique; we'll see how long it lasts. We need a more permanent solution though so if anyone has any suggestions please let me know. God willing, Max's engraftment will go back up and we could get rid of this stupid line and go swimming.

Much Love, and thanks for keeping up with us.