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!

Max is sick :(

Here we are again in the hospital. It's been a while since our last overnight stay at the hospital so I'm out of practice, cranky and exhausted. Max hasn't really been having a great time either. So here's what happened. On Saturday Max spent the day vomiting and not eating or drinking much of anything. He threw up 3 times and was pretty weak, but playing all day. Then he had some Pedialyte through the night and looked like he was getting better Sunday morning except that his temp went up to 37.5C. And then came a little bit of diarrhea and then Max's temp went up to 38.6 and after a conversation with the Cincy doctor on call, off to the emergency room we went. Why did we go to the ER for something that looks like a stomach virus? Because Max has a port and with a port, there is always the threat of an infection. When there is a fever, there may be bacteria floating around in Max's blood causing trouble. So here we are. We're still waiting for the blood cultures to come back but so far nothing has grown, thank G-d. Anyways, Max's fevers and diarrhea are continuing as would be expected with a virus, but just in case, Max is on an antibiotic. I'm really hoping that tomorrow evening we can go home with clear cultures and they won't make us stay any longer. Please G-d let Max's engraftment go up so that he makes enough enzyme that he doesn't need ERT and we can get rid of this stupid port!!! P.S. Please let that engraftment go up without the need for another transplant...:(

just an update

Well, I'll get to the point. After 12%, Max's engraftment went back to 13% and today's news was 15% so we're still on the roller coaster, just at a lower point. Otherwise, Max is doing well and we're enjoying it!