Day +68: A Wonderful Weekend

We just enjoyed a wonderful, normal-ish weekend...at least as normal feeling as they can get these days! Max and his cousin and best buddy, Will, finally got the chance to get together to play on Friday night along with cousin Ben and Aunt Monica and Uncle Mark. It felt so good just to be able to hang out together and watch the kids play. They had a ball, as you can see in the video. The smiling and giggling never stopped the whole time they were together. They are dying to see each other again. I think the four of them would play together every minute of every day if possible!


Saturday was a busy day around here as Matt and his dad, Jake, cooked up a huge project with 7 helpers to try to grow grass in our backyard. They spread about 10 yards of soil and seeded it in hopes that we will finally get some grass to grow back there. Max still has to be extremely careful about the sun so having a nice shady area for him to play in the rest of the summer will be great. We are anxious to see little sprouts of green coming up through the straw!


Yesterday was great too. My sister, Aunt Kimmy, came over and we rigged up a little tent on the double stroller for Max and took the boys on a long walk around our local neighborhood. We all loved the fresh air and just being able to "get out" for a bit. The boys are definitely getting a bit cooped up in the house here 90% of the time so we are beginning to look for safe ways to get out here and there. Max still can't be around other kids, with the exception of one "very clean friend", as Dr. Davies put it, from time to time. So, between that and the sun issues, it's a bit hard to find places to go but, I'm working on it and trying to get creative.

Last evening, we headed over to my mom and dad's for dinner and had a great time. Aunt Kimmy and Uncle Benny were there as well as cousin Audrey so the girls had a ball playing this time! Ellee and Audrey just love each other and have barely seen each other in months so it was a real treat for them. Again, the smiles and giggles never stopped!

This morning we had more excitement in the neighborhood as our road was paved! You can tell things are a bit desperate when yourself and your three kids are sitting at your storm door watching a steam roller pave the road and just loving it! What entertainment...and right at our driveway! We met my dad out at the Cincinnati Nature Center for a brief walk in the woods at lunch time today which was also great. I absolutely need to get out into the woods often and it has been a long time for me. It was really rejuvenating just to smell the trees and experience the peacefulness of the forest. I hope we can do it again soon.

Although Max enjoyed every minute of all of this activity, it has worn him out! He finished his steroid last Monday and I have noticed a bit of a change in his energy level without that. He seems to tire a bit more easily and needs to take a few more breaks than normal, something that I would expect with everything he's been through. His body is working overtime right now to recover and get his new marrow clicking away normally so, it's no wonder he needs some extra down time. He is also still taking LOTS of medicines...8 pills in the morning and 11 at night! I included a picture of the bottles just for the fun of it. It's hard to believe when you see it! Some of the pills are huge too but, Max has become a champ at taking them, as with everything else!




So, overall, things are good. We are beginning to relax a teeny bit but are still concerned everyday with Max's health and progress, of course. We still have a long way to go but, we are really beginning to settle into our "new normal" and enjoy life this way. I did talk to Dr. Davies on Friday about Max's return to school and, at this point, we are planning for him to be home all of next year. He may be able to return earlier but, she suggested planning for the full year at home and then it will just be a bonus if he returns before that. I am fine with this and Max is too, so far. I am hoping that we will find other ways for him to be "safely social" with friends, etc so that he will not miss that part of going to school and being 7 and 8 years old. We are starting tutoring with his teacher from the first part of first grade on Wednesday. Max isn't exactly looking forward to it but, I know that once he adjusts to it, he is going to enjoy having something to do and learning new things. Dr. Davies remarked the other day that he is such a bright kid and has really picked up so much knowledge from this experience, much of which we don't even realize he has learned. She is certain that he will have no trouble catching up and keeping up with his peers and returning to Wilson right where he should be grade-wise.

Alex and Ellee are doing well too. Alex struggles sometimes with being home so much...he would like to be more active, of course but, he wants to be with Max, Ellee and I the most and he seems to understand why we can't play with a lot of other kids right now. He absolutely adores Max and wants only the best for him. He would pretty much put up with anything if it meant something good for his brother. Ellee is doing just fine as well. I joke that she has "virtual" music classes and playgroups with her videos of kids singing, Baby Einstein and Elmo. I know that she will really enjoy playing with other kids when that day comes but, in the meantime, she doesn't know the difference and is just fine playing here with her brothers and mommy.


We are headed down to the hospital in the morning for Max's weekly Tuesday check-up. I hope all continues to go as well as it has so far and that it will be uneventful and relatively short. I'll update again soon when I get a few quiet minutes and I'm not asleep! ;)


Thanks for your continued support, thoughts and prayers.


Peace and love,
Kristi (and Matt, Max, Alex and Ellee)