Day + I'm not sure...

Clearly it's time for an update. The last couple of weeks have been kind of more difficult, although not too bad.

Saturday, May 15th: Max started working on the fever in the morning and by around 6pm he woke up from his nap with a fever of 38.5C. We went to the ER here in Louisville and while waiting for his antibiotics, Max took a dive, head first, into the wooden arm rest of the chair. He was fine, but he did chip his front tooth pretty badly and so we needed to get it removed on Tuesday. Finally, we got to our room and went to sleep around 2:30am.

Sunday, May 16th: Max's blood cultures came back positive for a gram positive bacteria, so I asked that we be transferred to Cincinnati Children's Hospital in case Max's situation was to get serious. We rode there in an ambulance, and I must say that it was pretty cool. Max watched the Clifford movie the whole way except for a brief time that he was napping and I read a book and chatted. When there was traffic on the highway, the driver turned on the siren and traffic split, no kidding, like the red sea. When an exit was closed because of an accident (no one was hurt) we were waved through. I think other than Max being sick, this was the best ride to Cincinnati ever. We got to Cincinnati and started another antibiotic, Vancomycin.

Monday, May 17th: We found out that Max's blood culture came back positive and were thinking that we may possibly have to remove his central line, something we were not looking forward to. We also consulted with the dentist who confirmed for us that Max's tooth had to be removed.

Tuesday, May 18th: Max's tooth was removed. Max's first negative blood culture!!! We also found out that the bacteria in Max's blood is sensitive to Vancomyocin.

Wednesday, May 19th: Another negative blood culture!

Thursday, May 20th: Another negative blood culture! This means we don't need to have the line removed and we can go ahead with the boost of donor cells on Friday.

Friday, May 21st: Max gets a boost of donor cells and Roman comes to take us home!!!! Finally I can have a quiet night...But not so fast, Max still needs fluids overnight and his antibiotics so at 5:30am we have to wake up and switch the fluids to Vancomyocin. Not Fun. But, this is MUCH better than being in the hospital 24/7.

Since then we've been doing well. Max has been walking everywhere and now he walks around with his bottle and rubs his belly, the sign for yummy. Really funny and thrilling to watch him thinking and growing into a real person.

Yesterday, we got some bad news about Max's engraftment; it went down to 19% and now we're worried. I wish there was something more we could do, it seems like we keep doing the same thing (giving Max extra donor cells) and expecting a different result. We used up the last bag of blood on the DLI and now the donor agreed to give more blood. Our donor is such an amazing and inspiring person and we are really blessed to have him in our lives, even though we haven't met him yet. I hope some day I will have the honor of donating my bone marrow. We emailed Dr. O at Univ. of Minnesota to see if he has any other suggestions as to what to do. We trust Dr. D and think she is brilliant, experienced and really knows her stuff, but maybe an extra brain couldn't hurt. We are just so worried because we want Max to live a long healthy, happy, and successful life and for that to happen Max's engraftment needs to go up. We need to know that we are doing everything. Tomorrow we're meeting with Dr. D again and hoping that we hear good things (and that they're true).

and one more video...

Max eating ice-cream!

Day +265

Enjoy!

Day +261

Max took 4-5 confident, forward steps today!!! I was in too much shock to even count how many or to get a camera. He just started walking and I stood there, stunned, with my mouth open. I thought that he wouldn't be repeating this trick for a while, but then when I was changing him before bed, he took four steps to the dresser and looked at me like, "what's the big deal, mom?" I was clapping and cheering, but he doesn't seem to be nearly as excited as I am. As soon as I can catch this on video, if he does it again, I'll post it. He also started saying "day," the russian word for "give," pretty regularly to get what he wants. Those are some BIG leaps for my little man.
He weighed 10.37 kgs today at the doctor's office and measured 79 cm. I'm not surprised at all judging by how his appetite increased. Unfortunately though, Max's engraftment from last Friday came back at 23%. Next week we'll have to come back and get IVIG, and the week after we'll get Max some more donor cells. Otherwise, not much to report, thankfully. We're just happy that Max can play in the grass like a normal little boy, just as long as there aren't any other little people around. We thank G-d a lot.

Day +254

Max finally hit 10 kgs!!! He weighed in at 10.2 kilograms. Finally! Max's engraftment went up a little bit to 27%, but that still means we need to do some more boosts of donor cells. We also had our first meeting with our new occupational therapist and our new speech therapist on Thursday. It went really well and we can't wait to see them again the week after next. They both seem really nice and very knowledgeable. Also Max's mitogen immune system study came back normal!!! This means that Max's immune system is attacking everything it needs to be attacking. I guess we're getting closer and closer to a fully functioning immune system. Max has also been taking one step for about a week now and on Wednesday he took 3 whole steps on his own! They were side steps, but steps. Otherwise we're just trying to enjoy our park privileges and stay healthy. We just need Max's engraftment to go up already!

Day +241

We're allowed to go outside and play in the grass without the rain cover!!!!!!!!!!

Day +238

Sorry for the lack of updates... Our latest engraftment level is 24% and at this point I would just like to at least know that its for sure enough enzyme for Max to live a normal independent life. Max still isn't walking, but the Child Evaluation Specialist came by last Thursday and said that she expects him to walk any day. She did however say that he is a little bit delayed in speech and fine motor skills and recommends that we get one hour of speech and one hour of occupational therapy every week! I'm very excited to have the help and I'm hoping that Max will thrive with the extra interaction. Him hanging out with just me and in just one room all day every day can't be helping. The First Steps coordinator even found a Russian speaking speech therapist so we'll just have to hope that she's available.
We all got sick on Monday night. First, I spent the night in the bathroom. Then the next day on Tuesday Max and Roman both sick and I was better. But switching Max from formula to Pedialyte did the trick and we're back on track today. Luckily Max's temp. never got higher then 37.3C so we didn't have to go to the hospital. We did quite a bit of praying though yesterday and were pretty worried.
On Friday we're going to do another d.l.i., aka boost of donor cells and take an engraftment test. Also, we're still waiting for the results of Max's immune study to see how much of his immune system has returned. I'm really hoping that he will be able to go outside without a mask and get to play in the grass. I think he'll really enjoy it.