There is a question that I am asked frequently.... "How's Nate doing?" It's a simple question. It's a question that, by no means bothers me when asked. I am never quite sure how to answer that. I'm never sure what it is that people would like to hear. Do I shrug my shoulders and say "good" or "about the same". Or should I go into great detail about what he does on a day to day basis? I struggle each time the question is put forth to me, because I want so badly to say, "He's GREAT!" I'd love to tell all these cute new stories about my growing baby.
But I can't.
When I see a perfectly healthy little baby, right around Nate's age, I smile so big at what an amazing life they have. I hope that their parents don't take it for granted. The smiles, the cries for communication, the hands in the mouth and drool everywhere, the little belly laughs, the new world that baby is learning about through their sight, hearing, smells, touch. All of that seems so simple when you've been through it with no complications. But to someone who's baby doesn't grow that way, it is truely AMAZING! When I see pictures of Nate's perfectly healthy smile before he got sick, I have a sickening twinge go through my stomach, because I miss that. These days though, I find excitement in a blink that shows me he's noticing something. Or maybe it's him breathing faster. These small but simple things are things only someone who knows Nate can notice. But they are amazing all the same. Somehow, someway, that same smiling baby is in this body fighting to come out. Maybe someday he will, but maybe not in the way he was. Maybe someday, I will see my son smile again. Maybe a sweet belly laugh. Maybe he will reach for me again. Until then, I will treasure the simple things.
So, to answer the question.... Nate is doing just fine. He finally got in to have his sedated auditory brainstem response test today. Here's the results as far as I understand them.... he had no nerve response in his right here, none. But, he did have some response through his left. The quietest sound he heard was about 65 decibles which is equivalent to me speaking pretty loudly. Now, just because he COULD HEAR that, doesn't mean his brain knows what to do with that sound. So, we will follow up with the ENT and talk about whether to start with some hearing aids, or go straight to cochlear implants. Apparently, the meningitis caused nerve damage (DUH!!) to his auditory abilities. But however the sound is interpreted by the brain is the new question of the day. We will just have to pay attention to his responses to noises, and it may be just a blink or something, but that IS something.
Nate's vision DOES seems to be strengthening. He definitely seems to focus on certain thing for a few seconds at a time. Again, we of course have no way of knowing what his brain is doing for those images, but it is a start.
He's doing very well with "Mo" at the Britian Center. Mo is his physical therapist and she is absolutely phenomenal! She of course has been doing this for close to 20 years, so she knows just how to hold him to get him to do what she wants him to do. She seems very impressed and pleased when she's working with him. We try to do what she does at home, but honestly I never see the strides he makes with her when I do it. I'm working on it. Someday I'll get it. And then I'm sure Nate will move on to some thing else to work on once I'M a pro! Ha!!!
We the Zellers, went to one of our favorite traditions today. The Pumpkin Patch! Yippee! It was a perfect morning for it, crispy, chilly (but not tooooo chilly), and there were many, many pumpkins to choose from. We got 5 pumpkins, one for each of us. Usually, we do all this late and all the pumpkins are totally picked over! But this day was perfect! The kids had a BLAST and it feels great to give them memories that will last forever! I want my kids to remember our traditions and ask for them every year! And hopefully pass on their traditions to their families in the future!
Well, I am about to fall asleep as I write this... the "back space" has been my friend throughout this entire blog. I'm sure I didn't get every typo. I'm gonna go to bed now, but I'm still praying for guidance and strength and intervention and signs! All the signs have pointed me in the right direction so far.... right????
Love to you all! Don't forget about the hoodies!
MUAH!
Carolyn
You guys are in my thoughts daily. So many things you feel are the same things I feel about Ty. I am excited about the little things that everyone else takes for granted. I am asked all the time how Ty is. I never have the answer either. People want to hear great and I want to say that. We have good days and bad days and few pretty good days. Never hearing Mommy, or I want a drink, or can I go play with my friends in any of those days is hard. It would be nice even he didnt talk to his friends but had the ability to do so. Our days havnt been too good the last few weeks. Dave has been in Houston since Sept 30th so my Rock is gone. Ty hasnt been sleeping well and the doctors up until today havent given me any guidance. I have asked for help for about 4 years now. I got an email from our Texas doctor telling me there is some testing we can do. FINALLY!!!! His brain just doesnt tell him to sleep. Its been hard but I am so use to as I am sure you are use to everything Nate does or does not do. Hang in there. You will be continued to be asked how he is doing. Some days you will want to go into great length maybe more than person wanted to hear but sure was nice to get it off your chest and some days you will say fine so you dont have to go any further. I didnt ever blog until you started Nates. I blog every day, mainly for myself and it has been so nice.
ReplyDeleteTake Care,
Amy Hayden