Nathan Matthew... progress... what that means...
Everyday that Nate gets through is progress.
Everyday that I get through, I believe is progress for Nate. Days that go by without progress are not happening. The progress Nate makes is very, very minimal by many accounts. But, each day that passes without regression... that's PROGRESS!
I'm so sorry that I've been lax in the "updating" department. Here's the latest.
As you may have read in previous posts, Nate has severe and profound hearing loss in his right ear. That means completely deaf. Now, his left ear has "only" severe hearing loss, not profound. So, that's hopeful. The ENT we met with last Friday suggested to go ahead with the cochlear implants process. This will involve evaluations and different testing before the actual procedure. From what I understand, there will be a "wire" fed into his inner ear (the cochlea), that will somehow send the right impulses to stimulate the nerves that are not responding. This is not a "guarantee" that he will hear. But it's probably the best shot that we know of at this point. I'm not sure if they will do both ears or just the left. Hopefully, the healing his brain is trying to do (in between almost constant siezing), will be able to interpret the "sound" and deliver the messages. We had a CAT scan of Nate's temporal lobes done just after the ENT appt. That should show if the cochlea has any bone matter in it. The ENT mentioned that occasionally, they won't see it on the CAT scan, but when they go in to feed the wire, they meet resistance. So, fingers crossed people! He has his first evaluation with the Midwest Hearing Institute on Nov. 10. Unfortunately, we also found out that our insurance has an exclusion for all that has to do with the implants. So, that will be all "out of pocket". Yuk! But what needs to be done is just that. It needs to be done. It's worth a try. I want to give this sweet baby every chance possible to experience this world. What ever I need to do will, without question, be done.
Meanwhile, Nate's vision does seem to be improving (minutely) every week. His opthamologist mentioned that if his vision is continuely improving by the next time she see's him, we might go ahead and get him started with glasses. Can you imagine??? How cute will he be? I thought Charlie was cute with glasses. I thought Nate couldn't get any cuter. I think I might seriously explode if he does. I mean sometimes I really need to stop myself from squeezing my adorable, cuddly baby too hard! I almost can't help it! He makes me giddy! And I think he just might be the most kissed baby EVER!
Nate's siezures have changed a bit. This is pretty much the sequence of his siezures that we see:
1. Staring off to the lower right
2. Tounge thrusting
(usually this happens for a few minutes, so sometimes we don't time it until....)
3. A myclonic jerk, his arms raise up, his head lurges forward and he brings his knees up.
4. Then his eyes get really wide and his seems VERY alert. (but really it's electrical surges throughout the brain)
5. He might have a few of the jerks for about 3-4 minutes
6. Usually, he then reverts back to the staring and toungue thrusting for another few minutes.
So, for a total of maybe 10 minutes his has this siezure.
Now, they just upped his phenobarbital again to 45 mg 2x a day a week ago. We were to do this for 2 weeks and see how that went.
Since, Monday Nate's siezures have been longer, but without the jerks. He definitely doesn't seem "with it". So, we called the neurologist yesterday after we went ahead and gave his his Diastat (rectal valium). When they finally got back to us, they decided to try some other medications for this weekend only. I'm not sure what they are, I need to go pick them up today. He has an EEG scheduled for Nov. 14. I wish we could do it earlier, but I guess it's only 2 weeks.
Here's some Team Nate Dog news...
we are very excited for the next year! We plan to do plenty of fundraisers and hopefully find a kid or two to be able to help. Crazy Aunt Carrie will be heading up the foundation and with the help of her awesomely smart husband Erin, determined and protective dad (Papa Ken), myself and Craig, and many, many handy dandy friends (you know who you are!), we hope to make this BIG! We have plans for fun, fun ways to raise money! But what we really need is just support and prayers! The foundation of this foundation is LOVE! What every you can give is very, very much appreciated, but all we really want is to help make this world a better place. And to help families with children who have brain injuries not be scared of their financial woes.
Pass it on!
Thank you all so much for reading these posts and always sending your support our way!
I can't wait to sport my brand new Hoodie soon! Wink, wink!
Love,
Carolyn
I love you.
ReplyDeleteDear Carolyn,
ReplyDeleteI had the pleasure and privilege of meeting your father and mother-in-law and your sister-in-law this last Sunday. They showed me the beautiful CD Carrie had made of Nate and your family. He is such a beautiful boy! I find myself having trouble coming up with words to explain my own life with my son, but reading what you've put down here about your life with Nate sounds like you're writing what I'm thinking. My son has seizures like Nate does, and there are those moments before when I just know that one's coming on. There are the constant appointments, with neurologists, medicaid workers, pediatricians, lab appts. for blood work, meetings with teachers and daycare providers and that's just my son! I also have a 9 year old and a 6 month old! Half the time I don't know if I'm coming or going!
But what I really wanted to say, is that I know where you are. I understand the way you feel about Nate as I feel the same about my son. And from what I read, you are doing a wonderful job. You are doing everything you can for Nate and that's all God will ever ask of you. And those minute little improvements are huge! I hope you celebrate them! It's a long road, but God is with you each and every day. I pray for Nate all the time and for the rest of your family as well. As I said before, it was absolutely wonderful meeting Ken, Jane and Carrie. What a wonderful family you have!
Carolyn-
ReplyDeleteI'm Melinda (smithchaos on livejournal). I told my husband about Nate and your family. We both remember so clearly sitting in disbelief that we had no control of whether our child would make the night. Our beloved Collin just turned 10. His laugh is the best sound in the world.
I would love to speak to you about Collin, what we've learned, how to deal with the emotions, and anything and everything in between. It's not been an easy path, but it gets better.
Feel free to email me at anytime: smithchaos@yahoo.com
And, just for what it's worth, my other 2 kids (Collin is the middle) are the most compassionate and caring children I've ever seen. They are the protectors of special needs children in any environment that they meet them in. Never have they batted an eye at stepping in and helping someone who's needed help.
I look forward to hearing from you!