Can hardly believe 8 months is here! We have been busy the last few weeks. Mark has been out of school and we have had Alex (my nephew) a couple days a week. We have been playing hard, going to dialysis and I have been working. It's been hard to find a balance. We have had a busy schedule with events for Mark as well. He received a trip to Gillette to attend a Revolutions game, a trip to the zoo..and yesterday a trip to Canobie! At least he will have some good memories of this summer :) I have lots of pictures to post later as well!
On the medical front things have not been that great :( We have been listed for 25 days now!!! That is exciting because I feel like each day that passes we are one day closer! I'm not sure if you remember the dreaded PTH level...well it's back!!!! I was promised they would not draw that level anymore and just watch his calcium levels a little closer. Well there was a change in plans...The doctor that was on this month said it was necessary to watch the level. Of course after the first draw it came back over 1000. The second draw...same thing. I thought that was going to push me over the edge. At one point the listing doctor has said if the level spikes he will be removed from the list. The first chance I got to speak with him I did. He said at this point Mark will not be off the list. My fear is that he is the doctor that gets the call when they have found a possible match. He can refuse the organ or expect. In his eyes if Mark's levels are compromised then he could bypass an organ...and we would never know. He claims that is not the case...but how do we really know? Also when Mark's levels have spiked on and off ( they have been this whole time) and they can't figure it out, it seems to feel like it's an automatic parent blame. I can say I'm not the only parent that feels that way as well. Only with certain doctors. Most recently when this happened I was a bit rude to the team. They ended up eating their words...I feel as if I'm a pretty involved and dedicated parent to Mark. It just kills me that in a moment they can make me doubt myself, and how far Mark has come. We are lucky to be working with the #1 Children's Hospital and #1 Children's Kidney Transplant Team in the country. That is no joke. I wouldn't want my child to be anywhere else...and to think it is practically in our back yard! When I run those stats through my head I try to forget my frustrations...sometimes it works, other times...not so much!
On a happier note there has been so excitement around the dialysis clinic this week. There is a small group of kids that all became sick in December with Mark. We have grown close as families through all of this..these are people actually go through exactly what we are. One of the kids was listed on the transplant list around the same time as Mark. He received his call late Tuesday night!! Also one of the girls went in yesterday for planned transplant! I can't wait to see her today and get all the details...I did receive a text late last night from her mom. She said it was a long day, but a success! We also have a friend that will be going in for transplant in 2 weeks! If we don't get a call soon, we will be the last one standing in the group we started with. It's funny how it all works out, because we all thought Mark would be the first to transplant out of the group! I'm happy that these kids are starting their journey to recovery (it's still a long road ahead)and we will be right behind them!
