Saturday, May 9, 2009

20 Days of NDD & Woe is Mommy...

Wow … 20 entries already. Just seems like yesterday we started this upon his Neurologists suggestion. Well she didn’t say Hey, go to and create a daily diary for Nathan ......Nah… it’s just my choice of places to store and share it. If I am going to make the effort, I might as well let those who follow the kids (family, friends, readers) read it also.

I appreciate all those of you who follow and take time to read about Nathan’s journey, even if many of the days it’s repetitive. He has his schedule and he likes things a certain way – if you deviate from it without it being HIS idea, all hell breaks loose as the tears start rolling and the body starts throwing itself around and these wails of attitude come forth out of his precious mouth. It’s a scary sight – one I prefer not to witness. So yeah, he gets his way to a degree.

Someone commented on how tiny Nathan looks compared to his Dad. Well that’s easy, cuz he is. He is 2 years old and he is only 16lbs. Now I got very excited the other day because he had gained 5 oz in a couple weeks. I am excited to find out how much he has gained since then, and I hope it’s substantial! I hope. I’m going to call his nurse on Monday morning… and ask her to come and weigh him. Yay! Then I will update, and I will ask her to bring me a copy of her weights in (same scale and not different ones like on his DR growth chart) and share his growth with you all, but this is what his last growth chart from the DR looked like… (from his 2 yr check up) … you can see that he is below the 3% line, far below, because technically, he’s not even ON a percent, he’s not even on the growth chart… but he was following his own growth curve, until recently when even THAT started to drop off .. you can see how his growth curve has gotten farther from the 3% growth curve. That is why he was recently “officially” diagnosed with Failure to Thrive.

In the past there was discussion – at least touching on the option – of placing a G-tube. I have been very anti G-tube. Nathan came home on an NG-Tube .. we had to learn to place it, to replace it, to clean it, to feed with it – etc. However, I noticed it made him a very lazy eater. He didn’t try. Sure he had a cleft palate, sure it was harder for him to eat, but I knew he could do it. I wanted him off the NG-Tube, I could see he hated it as much as I did, and not only would he pull it out every chance he got, but he would scream every time we had to replace it. It’s not an easy thing to HAVE to cause your child pain or discomfort, regardless of if it’s for their best. Anyway – watching him become lazy eating, knowing that he COULD do it… I asked his Ped if I could take the tube out and just nipple feed him, yeah I realized he MIGHT lose some weight, but in the long run he would be eating on his own and be able to eat food when the time came. IF he was going to be a successful eater … I knew he had to get off that NG tube. His Ped strongly suggested that we don’t do it, but after a couple of weeks seeing him digress more with his nipple feedings, I changed him NG tube one morning, and he pulled it out, I put it back, and put him in his swing, then went to feed him and suddenly milk was all over – here he pulled out the NG tube without MOVING the tape .. WTHeck child you are getting TOO talented at this! That was it… I couldn’t put him through the replacing it again. So I put the milk in a bottle, and fed him. He didn’t eat well, but he ate. The 2nd bottle he did okay again. The next bottle, he did fine, cuz he worked up a hunger. By the following day, he was doing really good, and by the end of the week, he was eating like a champ! And officially OFF the NG Tube! Whoohoooo …

So I have problems wrapping my mind around the fact that IF we were to go the NG Tube route, he wouldn’t get lazy again. So I asked them to wait, to give him a chance.

Now he’s officially Failure to Thrivedid I do the right thing? I don’t know. I feel like I did, in the long run. BUT… there is that wonder and worry there.

G-tube isn’t under discussion right now, but if he doesn’t start to digest protein the way he is suppose to (or eating more of it) … I have a feeling that it’ll come back on the table.

This time, I won’t fight it…

He isn’t eating again today. He has a migraine again, but it’s not as bad as usual I don’t think. I know the migraine prevention medication is helping, I have NO DOUBT about that. It’s not going to curb everything.

I have moments where I really wish he could talk. He’s 2 years old and we’ve been playing this “guessing game” for years now and it’s not easy. Sure he can point… he can sign a few things, say (and when I say SAY I mean hum) … a few words. But he can’t tell us what hurts. It’s hard to watch him suffer. We are working on ALL of us learning ASL (American Sign Language) and it's not easy., but we're doing it. We are changing his sign for "all done" (which looks like you are opening a book - eh - kinda) that his therapists showed him, to the ASL "done" sign (it makes more sense). We also looked up "hurt" and a few other ones to work on him with. I'm looking for good ASL sites, so if anyone knows any I'd appreciate a heads up!

I love my kids, I will do what is right for them… what I feel is best for them. I just hate seeing them in pain, begging in their eyes, just for some help, and I have no idea how to help them.

Anyway – I need to do some research and such so I better get to that since Nathan is sleeping…

OH I almost forgot!!!

A couple of links to blogs that I want to share.

First off I want to thank Melissa over at "A Pocket Full of Memories and Thoughts" for the kind words she said about the blurb I wrote for my blog description, and the blog she just put up about Bullying because yesterday I decided that I am pulling Cal out of school next year and Homeschooling him.. (more on that later) .. and I urge you all to go listen to the song she put on her blog by Mark Wills called "Don't Laugh At Me" that I think a lot of parents of unique children would appreciate. It is a wonderful song! Melissa's daughter Isabella has Spina Bifida and is one of those wonderful lights that inspire many people!

Secondly - I want to send you all over to "Don't Bite The Dog" where Jayme's Mom talks about how she struggles with just the right answer in response to explaining to other kids why Jayme, who has autism, doesn't act the same way they do. It's titled: Well Kids, It's Like This... It's a great insight on something that a lot of us struggle with.

That's just two of the things I wanted to say :) Thanks for reading!!


Lynanne said...

Great updates!

We used Basic Signed English with MysterE, who was non-verbal until he was 4. The signs are simplified and unlike ASL, the grammer is identical to spoken english (thus it's easier to transition between the two).

Melissa said...

Annisa, thanks for sharing my blog with your friends.

Happy MOther's Day, you are a great mommy.

Simoney said...

Hey Annissa, I just came across your blog at MBC. Happy Mothers Day to you; God bless! (Following you) xx

CandiceR said...

I'm a new follower to your blog and I'd like to present you with a Sushi Award.

Come pick it up!

Shelly said...

Hi, thank you for following me. I know a little bit about what you are going through with your boys. My oldest son, who is now 17 was diagnosed with Crohns Disease when he was 10. He spent 2 scary weeks at Childrens Hospital in Boston. It was just awful what he went through. He went from being the most energetic boy to no energy at all. To top it off the steroids they gave him not only made him overweight but deteriorated a bone in his ankle, so he wore a cast, then a brace on his leg for over a year. So I know what it is like for your child to be bullied in school because of something they have no control over. I'm sorry to hear about the conditions your children have, they are so adorable, and I hope everything works out for the best. You seem like a very good person and mom.
I'll definitely be following you regularly.