11%

Engraftment

The one from 8/29 we have is 10%, and we're waiting this week for an engraftment from 9/6/2011.

11% again.

engraftments

11%, 12%, then 11% again. we sent another one out today. we'll see.

2 years post transplant!

and its fabulous! other than our minor engraftment problem, Max is doing well. Thank G-d.

ok a real update!

We've been enjoying Max, and on Wednesday, it was his very first day of "school!" He loved it, and didn't even care or notice when we left, not for lack of trying on our part. I barely even got a picture. But that is good news, I'm glad that Max loves school and doesn't want to leave. The teachers say he's doing well, but we need to be potty trained for next year and the whole thing really stresses me out. Some bad news is that Max's engraftment from August 4th came back at 10%, and that's a new low. I've been looking at our numbers and it seems we get a new low every 3 months on average, but I hope it slows down. That's it for bad news, thank G-d.
More Good News:
Max was doing a weird squinting thing and so we were worried about his eyes and decided it was time to see an ophthalmologist. After a few tests and some drops in the eyes and some more tests Max's eyes were ruled to be perfectly fine and normal. Yay! Also, we had our semi-annual orthopoedic checkup and again everything is good. I was really scared about going in for x-rays, judging by the screaming performance of January, but this time Max was cooperative and perfect. We took pictures of his hips, knees and back. All good. Thank G-d.
So, mostly very good news, and the last engraftment we got back as 12%; a little better. I'm also praying that the brilliant scientists and researchers of the world come up with a better treatment ASAP. Even if the non brilliant scientists come up with the cure, that would be ok too.

first day of school

i know i owe an update. but all I'm doing is posting this video and going to bed :)

engraftment from 7/20/2011

13%

an actual update.

We've been doing well thank G-d. While we were in Rochester, Max used his first 3 word phrase, "Dai peets please," which translates to, "give me a drink please." I guess I shouldn't be surprised that his first 3 word sentence is a mix of Russian and English. On the way home Max said a 4 word phrase. "Papa mumum chhrr please," which translates from Max's language into "Papa cracker food please." I noticed he started to repeat more often when we teach him words, instead of just smiling at us. Thank G-d, I take this as a sign that his brain is in fact developing and MPS isn't causing damage yet. Of course our next MRS is in October and I have high hopes that Max will really thrive in daycare. This will probably be the moment I would really expect him to have to start talking seriously. We'll see and we'll pray. In the meantime it looks like the engraftment is very very very slowly dropping. Still praying that it goes up. I can't imagine putting Max through another transplant when he's come so far, but if necessary....
On a happier note, Max is getting better and better in the pool. He can stay under water for a very impressive amount of time now and hold his breath. He loves jumping in to the pool and then swims up on his own, except for the last bit to get his head out of the water where I help. Hoping that he'll swim a few feet forward on his own by the end of the summer but we'll see what happens. Also, as much as I have loved Max being in a crib, it is time for a big boy bed. He has already demonstrated his ability to climb over by throwing his leg over the rail and pushing up with his arms. Good thing we were there to catch him. Hopefully he won't decide to try it on his own and we'll get him a bed ASAP. Probably I'm forgetting something. Thank you for keeping up :)

12%

12%

Engraftment

13%. We're in Rochester!!!!

Engraftment

13%.

Engraftment

12%. yeah its a bummer. but we'll just have to keep chugging along.

Engraftment and trip to Cincy

Well Max's engraftment is 13%. No change.
We went to Cincinnati this Friday for Max's dose of IVIG and it actually went very smoothly. We didn't have to wake up early since our appt. was at 12:30, so after a nice breakfast with Daddy we were on our way. After a little nap in the car, Max played and had lunch at the hospital, visited with our Nurse Coordinator and Dr. D. All in all it was a good day. The only questions I had were regarding whether it is any more or less safe do to a transplant as a younger/older baby. The answer was that it's all the same. Also, I asked about immunizations, this depends on whether Max still needs IVIG so we took another IGG level.
Otherwise, Max has been spending a lot of time in the pool and getting really strong! Thanks for following us, we're happy you're still around :)

Engraftment

14%.

Max has learned to jump. It's hilarious because he does it without bending his knees and looks like an elephant jumping. I'll post a video asap. Otherwise, we just love our freedom :)

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!

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!

Engraftment

most recently 12%. starting to seriously plan another transplant. :(

pictures!

Engraftment

15%. The DLI did nothing.

we've been having too much fun to update

So Max had his DLI a few weeks back on a Tuesday and we went on vacation to Rochester and had a great time. Max got ERT at Children's Hospital in Buffalo (it was great and the nurses were awesome) and since we had no orders to take an engraftment level, we kind of enjoyed a vacation away from that too. It was very nice, we LOVE vacation!!! Max's engraftment level went from 16% in the last update, to 17% and then down to 14% the day of the DLI, before any cells were given. Now that we're back in Louisville, Max had ERT here and they took an engraftment level which we can now worry about until Tuesday or Wednesday of next week. I really enjoyed not worrying and just having fun with Max, but life is good so I can worry a little too. Enjoy 2011 and a happy belated new year to all. I'll post some pictures next time, I promise.