Sunday, January 11, 2015

Have Faith

We've had so much going on around here lately regarding David and appointments for David, I can barely keep it all straight. Even before he got the flu in early December, we had made some appointments in hopes of finding some answers. The first appointment we had was with the genetics doctor that David began seeing when he was 2. We saw him every 3 months for almost 6 years without any definitive answers. After Kyle was born, we agreed with Dr S that it was time to take a break. He had been tested for everything under the sun & we wanted a chance to have a somewhat normal life with the family we had just expanded on. Research was still (and always will be) progressing in the area of genetics. We all thought if we took a break, research could catch up, giving us a better chance of a diagnosis. Fast forward 7 years. It turns out that research still might not be able to provide us an answer. The dr is trying his best to get a full genome sequencing approved through insurance. And even then, it still only gives us a 30-40% chance of finding an answer. At this point, the reason for having a genetic diagnosis isn't as much for us as it is for Kyle. One day when he hopefully decides to have a family, we would love for him to have testing to see if he could possibly be a carrier for whatever it is that David really has. For us, a diagnosis of CP is absolutely fine. No diagnosis will change how we treat David. We've gone years just treating his symptoms as they appear. Genetically speaking, the seizure David had before Christmas sort of changes the way Dr S has always looked at  his case. We still have no idea why the seizure occurred or if he will have another one. As always, going to this kind of dr is very emotionally draining. We've always been told by this dr that David's life expectancy is highly shortened due to his disabilities. It's SO much harder to hear though now that he's almost 15, than when he was only 5. "A couple of decades" are the exact words spoken by the dr. I can hardly talk about it without crying. Even typing it is hard to do. BUT......after talking to a friend who has a terminally ill daughter, I accept it. She said that she can only handle the reality she's been dealt because she knows it's no dr that holds her daughters days. God is the only one that does. So we will continue to have faith in The Lord & keep doing what it best for David. Because giving him quality over quantity is really important to us.

Another appointment we just had was with an ENT. David has been snoring terribly for quite some time now. We highly suspect sleep apnea. And so does the dr. Unfortunately, there isn't really much hope for treating him without a successful sleep study. Which kind of makes me laugh. Because  David barely sleeps at home (last night being a prime example. He was awake ALL night), let alone in a hospital setting with wires hooked to him all night. I have very little hope that we will successfully get this test accomplished. But we will go to the consultation next month just to see of they have ANY ideas to help make for a successful study. I am willing to hear ideas from them. Even if the ENT dr didn't hold much hope either.

This week we have his EEG to check for seizure activity. I am also nervous about this test. We are trying a little sedation with some meds we use at home (the same meds that he had last night to help him sleep, yet he was awake the entire night) in hopes that they will make him drowsy enough to complete the test. I am also going to take one of his weighted blankets to see if we can calm him that way as well. But despite what the test shows, it sort of sounds like no matter what the results show, because he is at such high risk for another seizure, he will be started on some sort of anti-seizure medication. We will follow up with our neurologist after the test results are in to come up with some sort of a plan.

Despite all of these new things going on, both kids are really doing well. David has been happy for the most part. I adore his smiles & laughs. Kyle has been Kyle. He was excited to go back to school & has been a reading machine this weekend. I checked out his report card online & am pleased with his grades. Every grade went up significantly, except for his math. But he did bring that up since progress reports came out, so I'm happy with that! He's also been helping for the most part with his new puppy, Chase. Although since Kyle has a bit of a cough, Michael & I have been the ones taking Chase out in this gross weather we've been having.

New Year. Mostly the same goals. To try to be the best I can be for myself, and for the boys. And with everything that's hit us lately, I'm trying my best just to have faith. Because without it, I don't know how I'd make it through it all.

Here's a peek at what David is doing at 3:00 in the afternoon after staying awake all night. So jealous of him right now!

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