Believe in what your heart is saying
Hear the melody that's playing
There's no time to waste
There's so much to celebrate
Believe in what you feel inside
And give your dreams the wings to fly
You have everything you need
If you just believe
This has been an emotional week for me. It has been three years since Alex recieved his diagnosis of Mitochondrial Disease and I learned that he most likely will not be able to fulfill all the dreams his little heart desires. Since that day I have strived everyday to make his life full, to let him experience as many things as he can, and to help him create dreams that he can accomplish. I have worked to keep my fears in check so that I don't force him to live "in a bubble". And yet he still has so many limitations placed on him. It makes me sad and angry to know that there are people who throw this all away. How could you possibly sell out on your child like that? I will continue to believe and fight for sweet Bug.
So we made a detour on our way home Friday to complete Alex's last requirement to move up in Cub Scouts. I am very proud of him. Despite all of the obstacles he is faced, he completed all 15 tasks to be able to graduate to a Wolf Cub in April. Cub Scouts has been such a positive addition this year and we are blessed with the best Den and Pack who have really taken Alex under their wing.
We finally arrived home around 6:00 PM and did a few things before crashing for the night. We woke up yesterday morning and I continued to get everything reorganized so we could get back to "normal" this week. Alex went with Bruce to get a haircut and mail a package for me. Right before nap Alex started complaining of a bad headache. But he went right to sleep and I finally got a chance to hit the couch and relax. Alex woke up sooner then usual and called me in his room. He told me his throat hurt too bad to swallow. When I checked his temp he had a fever of 102.3. I knew what this meant. There was a brief thought about trying to get someone to just look at his throat locally, but I reminded myself of the promise I had made in December. In December, we almost lost our precious Bug and only quick action kept him alive. At that time I promised myself and my family that no matter how tired I am and how much I hate the drive, I would not risk Alex's life. And so the frantic routine of throwing together supplies began. We were on the road less then an hour later. Antibiotics have been started and labs drawn. His White Blood Count (a sign of infection) is VERY high for him. We are waiting on the culture from his line as wellas a flu test and strep. At this point his throat and head are better. Unfortunately his gut appears to have shut down as he was HUGELY distended last night forcing us to stop feeds. We are in a wait and watch mode right now as we try and figure out what is going on.
I have to admit to feeling a little defeated today. We have barely been home since the beginning of the new year. I am tired physically and emotionally. We are falling behind on our schoolwork. We had a fun day planned today. We were supposed to be heading to Six Flags for the day. We were excited to enjoy some fun, family time. I have promised Alex we will still go when we get home. I am just ready to get back to a routine and stop living out of a suitcase. I am trying to just grin and bear it, but I am ready for a break. I am just lucky to have such an incredible group of family and friends to keep me going.
Thanks for putting up with my crankiness today!