I have been terrible about blogging lately (as some of my best friends have no trouble reminding me)!! I have been so tired. It seems like this has been the craziest summer! Luckily we have a slow week this week so I can try and catch my breath before the next crazy stretch begins!
Alex was discharged from the hospital on July 1st. After setting up fluids to be delivered to us in Houston we were able to head to the Knights house for a fun weekend! We left the hospital with a temp in the hundreds still and orders to run IV fluids through the weekend until we could come up with a plan at our appointment on Tuesday.
Friday afternoon Alex made a special trip to the cemetary with Ben to fly airplanes and have some boy time with Samuel. Saturday the boys and Lauren went to see Cars 2 while Missy and I went to meet a friend for lunch. Then we had a quiet evening. Sunday was a quiet day as we got ready for Monday's festivities. We did get to enjoy the afternoon at a friends house to celebrate her girls birthdays. It was a fun day of swimming at their new house with a pool. Monday we had a cookout at Missy's house complete with an inflatable water slide. I swear the kids must have gone down that slide a hundred times! The kids had a blast in the backyard and Missy and I were able to have some good girl time with her Mom and Sister in laws. And I got some much needed "baby time" by holding Missy's neice Amelia! We finished off the night watching fireworks. I had to chuckle as I listened to Alex and Lauren discussing how Samuel much be hopping around in Heaven to avoid burning his feet on the fireworks.
Tuesday we had two appointments. We saw Dr. N (GI) first. We discussed a plan for trying to keep Alex better hydrated. The fact of the matter is that we are stuck between a rock and a hard place. I have watched too many kids with mito die this year. The truth is that most don't die from mito. They die from a central line infection that their little bodies can't fight off. We all saw in December how close Alex came to losing his life to this same kind of infection. Alex's doctors know his body will not survive many more (if any) line infections. So the decision is not to use his port if we can help it. However, his motility is pretty poor so we can only get a limited amount of fluids in through his GI tract. So you can see our dilemma. There are no good answers. We use the line and risk death or Alex is chronically dehydrated. Not a choice that has a good answer. But the easy choice (at least for us) is to deal with the dehydration. At least with that we stand a fighting chance at life! So we have a plan, but it has many flaws.
From GI we moved on to Dr. K. There really wasn't much to discuss. We are leaving things as are for the most part. We did discuss when to repeat the Spine MRI, but we decided that we will hold off for now because Alex struggles so much after anesthesia and we don't want his GI system to take a hit right now. We also discussed a little more about the clinic trial that Alex may get to be a part of. We are still waiting to hear if we will be included.
We headed home on Tuesday exhausted and ready to sleep in our own beds. Plus Alex was anxious to see Daddy. Alex barely got out of bed on Wednesday. He just lounged around while I tried to get caught up around the house. Thursday was another quiet day as was Friday except fro therapy and a n appointment with his psychologist. As I have mentioned many times we are so blessed to have such incredible people working with Alex who love him and are willing to work with him at whatever level his is capable on any given day. So many of our medical team are so much more like family after years of working with them.
Yesterday, we headed to the waterpark for a family fun day. It was a pretty short day as Alex doesn't handle being unhooked from his feeds for long, but it sure was fun while we were there. I love watching Alex conquer his fears and push himself to grow. He really expects a lot of himself and continuously strives to make himself better.
This morning we went to church where we have been blessed with a new pastor that we really like. Bruce and I are really enjoying this change and the pastor's messages and personality. Alex went to Sunday school and had a great day!
So this week we will have a slow week except for our usual therapy and psychology appointments. Then we hit the road again. Alex and I cannot wait to begin our annual vacation to Mimi and Pop-Pop's. We always spend 3 weeks there in July/August and it is one of our favorite times of the year. This year should be extra fun because we start off the trip with Aunt Jenn-Jenn, Skye-Skye and Pop-Pop's daughter Kim and her two girls joining us for a week. The kids should have a blast!
I ask that you pray for The Hilliard Family- Jessica, Sean and Gabriel as they said their final goodbyes to their precious princess Eithene this week. I pray that they are comforted knowing that their sweet girl is playing with all our other mito angels: running free from all the attachments and illness that limits them here on earth.
I also ask that pray that Alex stays healthy over the next month as we leave our comfort zone and travel out of state. Alex and I love to be surrounded by the love of our extended family, but we are always concerned about the possibilities of getting sick in a place unfamiliar with Alex's complex medical needs.