Day +111: Getting Busier

It's day +111 today and things seem to be getting busier all the time! I can't believe it's been another week since I've updated the blog! We've had another quite good week overall and managed to have lots of fun...with only a few worries here and there creeping in. Last Thursday, Aunt Monica offerred to keep Max so that I could take Alex and Ellee to the zoo. Ellee has never been in her life yet and Alex had not been in the summer in probably almost 2 years. We took cousin Ben along with us so that the "big boys", Max and Will, could have some good time playing together alone. I think that they may have enjoyed their "big boy" time alone almost more than anything! When we arrived home from the zoo, Max said, "Mom, I was thinking. Maybe Ben and Alex could play at Aunt Monica's for a while and Will and I can go to our house and play." Although they love their brothers, the two "big boys" really enjoyed their time with just the two of them together. We're going to do it again soon.

The zoo was fun, of course. Ellee was pretty much overwhelmed by all the people, not to mention the animals! She hasn't gotten out much in her young life so far so seeing so many people and then huge animals mixed in, she just wasn't sure how to process it all. But, she had a smile on her face the whole time and kept talking about the elephants and their "poo-poo" for the next couple of days (can you see the influence that two big brothers and four older boy cousins has on her?!?). Alex and Ben had a ball too. They really enjoyed the snakes and the gorillas. We got lucky and got to the gorillas just as the encounter with the keeper was taking place. He was feeding them lots of fruit that they loved and it was amazing to watch the animals interacting with each other. Overall, it was a great day. Mommy was exhausted from pushing the double stroller around our hilly Cincinnati zoo with all three of them in it but, so happy to be able to get out and enjoy some fun with Alex, Ellee and Benny. The pics of the four boys in the basketball jerseys were taken after we got home and they had a rousing Slam Dunk contest while pretending to be one of their favorite players (thus the jerseys).

Our visit to the Day Hospital on Friday was very uneventful which is always a good thing! The big news of the day was that they removed another one of Max's medicines, a potassium supplement. This now brings his list of meds to just over one page long! He is down to five in the morning, one in the afternoon and six at night. Huge progress. Essentially, he is just on the Cyclosporine for immune suppression now (which will probably go for about 6 months post transplant), some profilactic meds (ie anti-viral, anti-fungal and anti-biotic) and one supplement (magnesium). When I think back to the days of his IV pole with four pumps and at least 15 different meds hanging off of it that were going 24 hours, I realize the huge progress that we have made already. Although Max still has quite a distance left to go in this marathon, it is comforting to look back and realize all the miles that we have finished already. I was shocked to realize the other day that this adventure has been going on for almost 7 months now! In some ways it feels like forever but in other ways, it doesn't feel like more than 7 weeks has passed.

On another high note, we got a couple of calls last week from the Make A Wish foundation. One was from the coordinators that have been assigned to Max to get his personal wish facilitated. They are coming out on August 4th to meet with all of us for the first time and really get that process rolling. The other call was from the local southwest Ohio district branch with an amazing opportunity that the Cincinnati Reds are offerring to some local Wish Kids like Max. On July 31st, we will all get to go down to the Reds ballpark for batting practice and meet the Reds before their game that evening! Then, if Max is allowed, we will go to the game afterwards. We have cleared the batting practice portion of the event with Max's doctors but are waiting to hear about whether or not he will be allowed to attend the game. The doctor we had on Friday was not our head doctor so she wanted to check with Dr. Davies before saying for sure. She did comment that Dr. Davies may let Max go, based on how well he is doing. We are hopeful that we will find out more on Friday.

The Make A Wish foundation is an amazing group. They have already really been a bright spot in this difficult journey and we know that they will continue to be as we move forward. Max and Alex are both so looking forward to the Reds event as well as Max's specific personal wish. It is so nice to have something so exciting and fun to look forward to like that when the days get long and tough being here at home and so isolated. As I've said before, I know that once Max is given the "all clear" next spring or so, we will be living it up and enjoying life as much as possible and Make A Wish will be a big part of that, I'm sure!

We did have some worry creep in on us this past week, as I said earlier...it just can't stay away! Last Wednesday, Ellee came down with a little runny nose and by Saturday, Alex and I both had it. I called our Nurse Practitioner last Thursday and she said that we should still do our best to keep the kids separated from Max if they were sick at all. So, we tried our best to keep Ellee away from Max and then Alex and I away from him this weekend. We were washing hands like crazy and wiping everything down. But, despite our best efforts, Max started a dripy nose on Sunday evening. I called down to the hospital yesterday and talked to our Nurse Practitioner again, fearful that she would say we should head down there for testing, etc. Much to my surprise, they said that we just need to watch Max's symptoms and let them know if he worsens but that he should manage through alright given the IVIG medication that they are continuing to give him every other week, etc. What a relief! Max was so thrilled! We had to get ice cream from Graeters to celebrate last night after dinner! Once again, worry for naught! Why can't I learn?!?

I said to my mom the other day that it seems like I am spending more time on the blog writing about the fun things we are doing rather than the medical stuff...a great sign that things are progressing. Life is not "normal" yet, to say the least. We still can't go outside without Max wearing his mask, he has a double lumen line hanging out of his chest that we have to clean and flush everyday, he takes lots of medicine multiple times a day still, we can't go to church or out to eat at a restaurant as a family or go shopping at Target together, we have to be massive germ-a-phobes in everything that each of us does, we still spend a day each week at the hospital, the kids can only play with their cousins essentially still right now to try to minimize germ exposure and Max won't be able to return to school in the fall. But, despite these continued challenges, we are making progress and everyday we can see the light at the end of the tunnel getting brighter and brighter! We are so grateful just to be together as a family as much as possible and to be able to spend more and more time with our extended families. We know that worry will continue to creep in on us and give us difficult moments but, we have all the faith in the world that Max is going to make it through all of this and go on to lead a full and wonderful life. I picture myself at his college graduation all the time with Matt, Alex and Ellee sittiing next to me, cheering him on...all of us with tears running down our cheeks in celebration of the amazing life that he has led and all that he has accomplished. And then I imagine someone saying to me, "why are you crying?" and me responding, "well, let me tell you a little story about my son out there..." That will be a glorious day, as is every day now that Max has been blessed with the opportunity to live again!

Thank you all for your continued support, thoughts and prayers. More soon...

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)