Just some recent pictures :)

Engraftment

13%. ok, we'll certainly take that.

MRI/MRS results

Sorry again, long time no update. Max had an MRI done and an MRS done recently to measure the amount of GAG buildup in his brain. This was done mostly as a baseline scan so that we can continue to monitor whether or not the engraftment he has is in fact enough with his ERT to live happily and healthily. Great News!!! ALL CLEAR! The MRI was perfectly normal and the MRS showed no sign of any GAG buildup. We will measure again in 6 months and we hope to have the same results again. So long as his engraftment stays high enough and his tests are normal we can avoid another transplant. G-d willing.
Now, the bad news. Max's engraftment results from last week were 11% which is in fact a new low. Please pray that it never goes any lower and bounces back so Max and we can continue our very blessed and happy life. I guess we can never just have too much good news in one week, otherwise it'd be weird and we just would get confused, lol!
Thanks for keeping up with us :) Much love to you all!

Sorry I haven't updated in a looooong time :)

Everything has been great. Max's engraftment still hasn't gone up at all, and has been stuck at 14% for the last 4 weeks. So happily, Max's engraftment hasn't fallen anymore either. We started going to the pool and teaching Max to swim. He loves it! We have such a great time, and I think swimming will come in handy for him through out his life as a physical therapy. I'm very happy that we're able to do it. We also started infusions at home, and I can't put into words how much better it is. To say the least, instead of waking up at 6:30am and spending a 6-8 hour day in the hospital being miserable, we wake up when Max does and a nurse spends under 4 hours with us at home. This doesn't get in the way of Max's potty training or his naps or anything. It is GREAT!!! Otherwise, Max is just playing and learning and having fun. It's pure pleasure to watch and I'm grateful for it. Thanks for keeping up with us. We love and need your support.

Some more birthday pics!

I was feeling better starting on Friday morning. We have to keep plowing and that is what we'll do. In the meantime, here are some more pictures.

Max is two today!

First of all, I'd like to say that I can't believe we made it this far! Max has come out stronger and smarter and better (see the pictures from our fun museum trip). The only problem is that we're kind of exactly where we were, scared and on the verge of a transplant. When I imagined Max at two years old, I thought of bone issues and surgeries, not another transplant. I can't believe we're still here, but I'm grateful that Max is still here. So my feelings today are mixed and I wish I was feeling pure joy. We did everything we could to make it a fun day for everyone, but somehow I just wasn't feeling the happiness I imagined I would feel. We went to the preschooler area in the local art museum where Max was busy having fun and we even got to go with Roman! It was fun and hopefully we can come back again soon. After Max's nap we ate and watched some cartoons. When Roman came home we went to Toys R Us to pick out a toy. All very fun and Max loved every minute except when we were leaving. That he didn't like at all. Maybe I'm just tired from the failed IVF attempt that sent me to the hospital, or maybe it was this weekend in the hospital with Max that did it. I'm exhausted. I'm just tired. It's like everything that can go wrong does. Even the car ride home from the hospital took 3 hours instead of the usual 20 minutes. Are you kidding me? How can everything go wrong? Max's engraftment today could've come back at 14% or 15%, it came back as 12%. I know that the numbers are essentially the same, but couldn't it be at the higher end today? Anyways, tomorrow we have a difficult day ahead of us. Max and I have to go to Cincinnati for ERT and a meeting with Dr. Davies, hopefully everything goes smoothly. They changed Max's ERT rate so that it goes in over 3 hours instead of 4, which should help a lot. Hopefully we can catch a break and at least have a restful Saturday and Sunday so that I can rest up for the coming weeks. So I can feel finally less tired and more like myself again. As always, we're praying for a higher engraftment, but I'm getting tired of doing that too. It doesn't seem to be doing any good for us at all. I'm sorry for such a depressing update on my baby's birthday, but it is what it is. I wish it was better.

Max is better :)

We finally came home last night. Not to say that this happened without adventure. Max's cultures didn't grow anything so we were discharged at the 48 hour mark at around 6:15 pm. I packed everything up and in the car, started driving out of the garage at Kosair Children's hospital and noticed that my tire was flat. Great! So I called Roman and when he came we started blowing up the tire (thankfully my dad bought me a tire blowing thingy a while ago), about 15 minutes later the tire was good enough to drive on at least for a little while. After blowing up the tire 4 times and 2 hours after we left the hospital we finally made it home!!! Good thing we weren't in Cincinnati this time :) Anyways, I'm just grateful that Max is feeling better and that we're home again!