Day +433: Getting Back on Track!

It's day +433 for Max and he is finally feeling better, thank goodness. Things have calmed down around here again and we are slowly getting back on track. I spoke to the hospital on Monday and the results of the labs they sent on Friday were all negative - in other words, Max did not have chicken pox or any of the other viruses that they typically check for down there. That was a huge relief, of course. His ears continued to really bother him until this morning, unfortunately. He had some bloody drainage come out of both of them over the past few days but, they seem to finally be feeling better tonight. Poor fella...he was really in some serious pain with them. He told me tonight that they had hurt worse than an IV...we all know that is really saying something for Max! Given all this, I have requested that an ENT see him as soon as possible so that we can have an expert look in those ears, etc. and see what is going on. Hopefully we will get into one later this week or early next. In the meantime, no swimming for now! We are also going to check into some ear plugs that they recommended so that Max can hopefully get back to swimming safely before too long this summer.

Based on last Friday's difficulty for Max, we are also going to be talking to a psychologist with him. I am glad that we are doing this and feel that it will be very helpful for him. His Nurse Practitioner and I agree that he could use some outside help to just get some of his feelings out and to help him learn some coping mechanisms. I have been surprised that there has not been more involvement from the psychological perspective throughout his journey so, I am happy to be getting some help in this area soon.

The last week has been scary for all of us and has shaken our confidence again. I think we are just tired of getting a bit "burned" when trying to return to some normalcy. However, this situation has been important because it has made us realize that this is part of our "new normal" and that being prepared for it will help us all to deal with it more effectively. We have requested a meeting with Dr. Davies also so that Matt and I can have some time to sit with her, without Max there, to really understand the path moving forward and all the possibilities. We feel like we need to know this so that we can strike the right balance for Max. We want him to be back in the real world as much as possible but, we also want things to be as safe as possible for his health. If that means that remaining patient for a while yet and not doing everything we might like to do right now is the best thing for Max, then that is absolutely what we will do. To ensure a bright future for Max, we have no problem being more patient!

Alex and Ellee continue to roll with the punches pretty well too. Having Max under the weather the last week was tough on them too. It requires more of mommy's time to look after him again and to be at the hospital, etc. and I sense that it makes them uneasy as well. They are just as worried about their big brother as anybody. He means the world to them and they don't want to see him sufferring or unhappy either.

As we have said many times in the past, the BMT process is a marathon, not a sprint. One of the favorite sayings among BMT families is, "slow and steady wins the race." We have lived by that motto for over 18 months now and will continue taking things one day at a time, enjoying every moment we spend together, weathering this journey as a family.

More soon...

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