Tuesday, May 5, 2009

May 5 ~ Entry 17 (NDD)

Tuesday, May 5, 2009 ... Nathan's Daily Diary entry 17


This morning started out around 6, straight to his morning ritual (if we deviate, screams happen. It’s just the way he finishes “waking up”) … at 7 though, his morning relaxation came to an end when we had to run Calahan to school. He went to school early to get some help with homework. We got home, got Noah off on the bus, and then it was time for breakfast. We had grapes and some cereal, while he ate I got some stuff done in the kitchen. Including giving him his morning medicine and I added allergy meds this morning too because of his runny nose – to see if it helped over the cold meds and IT DID! Not only that, but we went back in the living room and Nathan crawled up in his nappy spot on the couch, so I turned on Blues Clues again. Kaedyn woke up, and by the time I got him changed and a bottle made, came back into the living room, Nathan was fast asleep!!


He ended up sleeping until 11:15 when his therapist showed up. Erika came in and started laughing seeing him sleeping there. ::sigh:: But he did wake up and after a little bit was doing well. He loves when his “friends” come to play with him. Erika and I were talking about how he is better and I was telling her all the new things he was doing – the signs I’ve caught him doing, the ones we are working on, foods he’s been eating… they worked on eating, puzzles w/ animal sounds (we kept the puzzle work on sounds and signs) … bubbles is always a huge hit with him … and books. Nathan walked her to the door when it was time to leave, and watched her go – while sitting on his horses head.


I swear, I am waiting for the day that he’s going to be standing on that horse trying to open that door! It’s coming soon, I just know it. I’ve already started the habit of locking the screen door


After she left, I went into the kitchen to make lunch. We decided on pizza and as soon as I opened the fridge and he saw those grapes, it was added to the menu also. So he had lunch and he ate very well! And then ate MORE grapes. Then I gave him his 2nd does of the day of his migraine med (he started taking it THREE times today, and now we are at our max dosing where the DR wanted him to be) ... it was about this time that Nathan discovered the best use for Dr. Pepper I've ever seen (pictures)


It was about then that the DR’s office called and said that Dr. W wanted to see us as soon as possible to review the hearing test results. They gave me a choice of pretty much any day this week, including today at 3:50. I took one for tomorrow, but after talking to Dennis a few minutes later he asked me to change it to the one today so he could go too. So I got off the phone with him and switched it. Luckily I could still get in.


So after feeding Kaedyn and playing with Nathan who was suddenly a giggle box… we got ready to go to pick up Cal, and then to the DR. We got Cal, and then dropped him off at home, and headed off to the DR. Daddy met us there (across town – he wouldn’t have made it home by the time we would have had to leave – we go there about the same time.) So he came and got Nathan while I grabbed Kaedyn … and then in we went.


He was 16lbs 6oz!!! That’s a 5oz weight gain in 17 days!! I mean I know ya’ll don’t realize how HUGE that is…. So here is a run down. He was gaining ONE OUNCE a month for awhile … and then lately he was gaining FOUR OUNCES a month which was HUGE to us… and then he fell back off and the last couple of times he was just hanging out at another ounce or two gain, IF we were lucky. So 5 oz in less them a month is HUGE!! (he was 16lbs 1oz on April 21st)


Dr. W talked about how Kaedyn passed and Nathan failed. He checked his ears and said he could see the fluid but it wasn’t infected. So he wants us to wait a couple weeks and then get the hearing test re-done. He said basically, if he fails again, the next step is tubes. Then we go from there. We have to get rid of the fluid, and that’s the first step.


Dennis and I were testing Nathan – at one point there was a train toy in there, and it makes noise (bells) … Nathan was just loving playing with it. So he had his back turned for a minute and Dennis grabbed it, hiding it behind his back. Nathan looked where it had been and then started looking all around, you could tell he was looking for it. So Dennis started dinging the bell, and Nate would have been on top of it – but we really don’t think he was hearing it. We realize that a lot of his reactions for looking one way or another, is either vibration or catching movement out of the corner of his eye. Now, we know he hears SOMEWHAT cuz he does sing and say … hummm some words … So yeah. Honestly I don’t think at this point, either Dennis or I would be shocked if he had a significant hearing loss. Hope not… that’s all I can say…


We came home and made dinner (chicken, green beans, potatoes, buns) … and he ate okay – not real good, but not bad either.


Right before dinner I got another call. The results from his blood tests & bone age x-ray were in, and Dr. Z (the Endocrinologist) had reviewed them. So… they discovered his thyroid levels are still off and so they want him to start meds for hypothyroidism. (insert dramatic sigh here … we’ve gone from no meds, to two in a few weeks) … this is a medication he’ll have to take that is in pill form. Gah – PILL FORM?? He’s TWO – how do you expect me to pull this one off? Oh – plus he has to take it on an empty stomach? Eh…. Seriously, I’m just sayin… HOW?

Okay – whatever, we can deal with that. Then she say that he was really surprised at the results for another test. That he’s not getting enough protein? He was very surprised by that based on us saying he eats really well.


Well maybe I should make something clear. Nathan eats well for NATHAN… he isn’t his piggy brother Kaedyn. Nathan has never eaten *a lot* and he only drank 2 oz bottles for so long before moving up to 4oz. He eats certain things, he has sensitivity issues with others, and sometimes he just refuses to eat – like when he’s got a migraine. And when he gets sick, the weight fairy decides to stay away for fear of catching … oh… say … the swine flu!


So he eats … he eats a lot of meat. But for some reason this blood tests basically said that he was malnourished.


I could cry right now.


I mean I know that I’m not doing anything wrong. He is given food, 3 meals a day PLUS snacks are offered all day. It’s not like the food isn’t there. I can only *hope* he’ll eat it. He does like to throw it though. Apparently he wants to be an aeronautic engineer someday?


But hearing that word, and failure to thrive … it makes you, as a parent, feel like a failure. The boys eat all the time. I don’t know…maybe he doesn’t eat enough? I keep hearing though, that his stomach is only the size of his fist and think of how much will fill that space – he’s fine with that. This whole time I thought he was fine. On the other hand, you can’t force feed him either.


So anyway … because he’s not getting enough protein, or his body isn’t absorbing it the way it should (remind me to call the gastro doc for a follow up) … he wants Pediasure supplemented once a day. Wish me luck with that one too – considering – all he will drink is chocolate milk and MAYBE water. Seriously – Pediasure is NOT milk, and no matter how much I play it up to be a “yummy milkshake just for Nate” like I did with Noah, I don’t think it’ll fly with Nate… so we are going to try to get that covered through his insurance. I thought I had some around here, I’ve been thinking about starting it with him for a couple months now, and I just haven’t had the guts to do it. Now I have to. I know it’s going to be a huge fight, and if it’s not and he drinks it like a champ, I’ll kick myself!


And in regards to his bone age x-ray, it showed between 15 months and 18 months bone age. So he’s about 6-9 months off.


So we are holding off on the HGH ... whew, that's fine with me!! To see how this other stuff works w/ weight gain first. Between the migraine meds making him hungrier... yay for that! ... and this other stuff, maybe (crossing fingers) just MAYBE it'll work, and he won't have to live with daily shots of HGH.


So… that was that. After dinner there was jammies, milk, cuddles … book and bed.


He just woke up at 11pm as I was writing this. I ended up getting him a cuppie of water, but he was up on the rail of his bed, like it was the most comfy thing, but he was complaining and trying to push himself further into the corner there. So I pulled him away… he did settle – hopefully for the rest of the night.


Goodnight all – tomorrow is another day…

4 comments:

tracy said...

oh boy. that is so much stuff to deal with...

honestly. im overwhelmed reading it... i dont even know what to say with all of it... and I have no ideas how to make pediasure yummy.

tracy

MommaD said...

my son had moderate hearing loss that cleared after tubes, as did behavioral issues, speech issues and sleep issues. it was the easiest cure to many things troubling him...

Tess said...

Sorry to hear about that. Alot to deal with for a mom.

Shanda said...

Our son is small too and is undergoing many tests. He was 15lbs at 12 mos and at 22 mos he is 19lbs (just got there last week) He frequently looses weight and gains it back. Right now on top of his 3 meals and snacks he is also getting 8oz of Carnation Breakfast Shake...Our son loves the stuff (it comes in chocolate, strawberry and vanilla) If Nathan won't take the pedisure maybe you could try that?

We are seeing geneticsts, allergist (all allergy's have been ruled out), Dieticans, Peds and were about to have our first GI consult.

Some days I feel I need to pay rent to dr.s offices...we basically live there...yiyiyi

I can understand some of your frustrations...especially when it comes to feeding them. All you can do is offer the found...it is their job to eat it...Haidyn will go a few days of eating a bite here and there then go days of pigging out....it comes in waves. We are lucky if he drinks 16oz of fluid a day...more like 8-12 and that takes him ALL day. He never drank more than 4oz out of a bottle at a time...and even that would take him 4-6 hours to complete and he never graduated from a nb nipple.

I hope they are able to come up with some answers for you guys soon...GL