I exited a phone call today from Gavin’s amazing immunologist. She called for two reasons, the first being his latest lab results.
As for the labs, everything looks pretty good but some of his immunoglobulins were low but not low enough to require a dosage change.
If he gets sick. I have to call and we will likely adjust the infusions accordingly.
This next part is what sorta knocked me on my ass because I was not prepared for the conversation to go that way.
His specialist explained that Gavin qualifies for Make a Wish and she thinks I need to pursue it.
Apparently, she’s had other patients with far less going on, qualified for and received amazing wishes..
While Gavin isn’t terminal, he still has very, very serious health issues that are each life-threatening on their own. When I wake up in the morning, I never know what to expect from Gavin’s health.
Frankly, I’ve become a bit complacent because he’s been so stable-ish lately but the reality is that he has a severely compromised immune system, asthma, epilepsy, a very rare autonomic disorder and is currently being genetically evaluated for Jalili syndrome.
He has very serious mental health issues on top of a regressive form of Autism.
His doctor is sending us paperwork and wants to help get this going.
I’m still not sure what to do with this but I definitely think Gavin is deserving and I will absolutely fill out the paperwork..
While it’s an amazing opportunity to possibly have a wish granted, he also qualifies to have a wish possibly granted.
That sorta makes things a bit more real and reinforces that Gavin’s health is not good.
He’s had a few very close calls over the years and there were at least two times we actually had to have the discussion about the fact that he might not pull through.
What am I going to do with this?
I’m going to do whatever I can to give Gavin the life he deserves, within the confines of his health boundaries.
What an amazing opportunity for him to do something truly amazing and make some memories that he can look back on and smile….
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My son with autism was granted a wish from The Sunshine Foundation. These organizations are awesome
We have went through the exact same thing in the past month. As much as my son is not terminal…he’s not extremely stable. He cycles with all his illnesses and has been on a slow decent since February. It’s kind of a reality check when you think things are going good…there is still that shitty part in the back of your mind that things can always go south quickly. The process for us was quick. We spoke with someone at make-a-wish, she sent the paperwork to his dr to fill out the next week and the following week we got a phonecall saying he qualified and the wish granter made an appointment to meet with us within the month. I hope Gavin gets something awesome. Travel may not work with him due to his issues…but they can grant some pretty awesome things within the community, or help with making a room over into a safe haven for him, etc. I know it’s hard to look past the reason as why he’s being granted this awesomeness…but keep in mind the positive side of it!
Congrats I hope the wish he makes is something he really really wants to do!
That’s awesome! You and the boys could really use a little fun.
Does Gavin have CDD? It seems odd for him to still be regressing as a teenager.
I’m a Wish Granter in IL. Let me know if you have questions.
IMPOSSIBLE =I’MPOSSIBLE U0001f60e
We have went through the exact same thing in the past month. As much as my son is not terminal…he’s not extremely stable. He cycles with all his illnesses and has been on a slow decent since February. It’s kind of a reality check when you think things are going good…there is still that shitty part in the back of your mind that things can always go south quickly. The process for us was quick. We spoke with someone at make-a-wish, she sent the paperwork to his dr to fill out the next week and the following week we got a phonecall saying he qualified and the wish granter made an appointment to meet with us within the month. I hope Gavin gets something awesome. Travel may not work with him due to his issues…but they can grant some pretty awesome things within the community, or help with making a room over into a safe haven for him, etc. I know it’s hard to look past the reason as why he’s being granted this awesomeness…but keep in mind the positive side of it!
Congrats I hope the wish he makes is something he really really wants to do!
My son with autism was granted a wish from The Sunshine Foundation. These organizations are awesome
That’s awesome! You and the boys could really use a little fun.
I’m a Wish Granter in IL. Let me know if you have questions.
Does Gavin have CDD? It seems odd for him to still be regressing as a teenager.