Life Expectancy

So for the first few weeks of learning of Reese's disorder, the thing that made me the most upset was the "life expectancy". You know, the probably less than 10 years to live thing, but maybe 10 - 20. That was the ONE thing I could not accept, or even come to terms with. But I'm probably not alone on that, I think many parents won't accept that part of this disorder.
I also hate the seizures. They scare me to death! I don't know what to do for him, especially when he stops breathing. (By the way when that happens you do 'rescue breaths' NOT CPR, and call 911!)
Luckily he hasn't had to have an ambulance called. Just excess phlegm suctioned out that he is choking on and no air for a couple of seconds.
So anyway, through all of this I was finally able to gain some peace. I honestly, completely, 100% attribute it to prayers. My own and those offered on our behalf by our many, many friends and family.
I was finally really and truly able to forget the life expectancy and come to the realization that my darling little Reesie would be here for exactly as long as he was supposed to be.
Whether that be 5 years, 50 years, or even just 5 more days. He would not be taken one second before it was really his time to go. (That is not to say I will be able to handle it with any amount of grace, courage, or even sanity when that time comes.)

Most children with this disorder die from either uncontrolled seizures, or pneumonia. It's very easy for these kids to get pneumonia. Due to this disease, the swallowing mechanism in the throat doesn't work properly. Some children have this problem with much more severity than others. Because the swallowing function in their bodies does not work right, they aspirate very, very,easily. Aspiration is when you choke on, or throw up liquids or solids and it gets into your lungs, there by causing pneumonia. After this happening a lot it weakens the lungs, causing it to be easier and easier to get respiratory illnesses, and damaging the lungs even further.

Reesies swallowing doesn't seem to be to bad off. He can drink formula well, or liquids as long as they're thickened a little, and does really well eating baby food that is thickened a little. We have yet to try regular foods, not too sure how that will work out with him as he doesn't really know how to chew yet.
The unfortunate possibility that I have to think about daily is that many (not all, but many) children with this disorder digress with their eating & swallowing skills as they get older. And most end up on a feeding tube. Every parent I've talked to so far that has had to go that route has said it was the best decision. It made meal time so much easier for them and their child. But it is a surgical procedure, that in some cases comes with problems with the tube afterwards.
I guess we'll cross that bridge if ever we have to come to it.


And so far, his seizures have been controlled. Do you know how many types of seizures there are? There's like 50!! It's unreal! And sometimes (in the case of "Absence Seizures") you don't even know they're having them unless you watch them non-stop and know what to look for! They just stare off into space. Good grief I do that all the time myself! I think I even drool when I do it sometimes. Maybe he inherited those from me??
In hind sight, I realize now Reese was having seizures a little here and there months before we knew that he had Liss. But at the time, we didn't know that's what was happening.
He's had the one round of Infantile Spasms. Those were the ones he had to be put on medication for. The ones that are very damaging to the brain. The medication got rid of them, and he was even able to go off that medicine and not have to start any others as 'control' methods.
He does still have seizures when he gets sick. Even something as small as a cold or mild sore throat will cause him to have a seizure. But so far, they've been few and far between. Unfortunately, seizures are one of the things with this disorder that can change in a second. He can be going along just fine for weeks, months, in some cases even years with no problems, and then seizures will set in and medication to help with them will have to be found.

This is one of the hardest parts for me to deal with. All of this ......... additional problems I guess you'd say. I just feel like every new thing we have to do medically, every new problem that arises that we have to take care of, it just feels like this disease has that much more control. Do you know what I mean?
It's like the disease is gaining that much more of a hold over him, and I'm losing that much more.
But this feeling only lasts for a little while. I educate myself on whatever the newest thing is we're dealing with, probably drive the doctors insane with questions for a week, and then I settle into a 'new' routine and I get my 'control' back,

But above all of this I just love him SO much. He is the sweetest baby with the sweetest little spirit. I often wonder why I was blessed with him. Did I do something really good to be able to have him come to my life, or did the Lord just know how much we would need him?
So his length of time here isn't so much of an issue with me now. Although I do still think about it sometimes.
I will love and enjoy every second I have here with him. And look forward to an eternity together in the next life, where there is no death to separate us.