No more meds?

Ellie is supposed to have a lab draw this week but it's turned into a full appt with her endocrinologist because she's getting so big so quick! We're going to measure her and I can't wait to see how big our little angel is doing! Also, she is weaning herself off her DDAVP this is her DI medicine (DI=diabetes inspidus, this is NOT insulin or even related to that!). Her endo made this prediction a few months ago. Her dose was SO low to begin and now I've 1/2 it. Her "dose", and I use the term loosely because there is no mark to be sure, was approximately 0.0175 mcg. Do you know anything about mcg? Well 0.0175 mcg is not even quite a tear drop and I've 1/2'd that! It's pretty darn exciting. Now I weigh her diapers and measure how much fluid she takes in every day on DDAVP, since she's prone to DI we can NOT stop until we know she's good and she's not going to go back on the meds. I know Dusty and I are just fine with this, a small price to pay for her not being on this medicine. And she may need it some other time, such as if she doesn't get enough fluid and pee's too much, she'll get a little to get her back on track but should go a while without. With DI, you pee A LOT! She's pee's about the amount a "normal" baby would through the night say in 2 hours so you can imagine that we wake up in the morning and she may be laying in a pool of urine (I try to elimate this by changing her when I go to bed and since we get up at 0430 so it's not that often now-a-days). But she drinks a lot and pee's a lot, more than most kids.

Anyway, she's also having a hard time with her tooth. She has two bottom and one top has popped through but the other one is just lingering and taking it's time. She's not upset just uncomfortable, drooly, and has to have something in her mouth at all times and playing with her teeth (which is funny).

See those teefers!

Her lastest accessory... safety first!

Our 1st MAGIC Foundation Convention!

Last weekend we went to the 2011 MAGIC Foundation Convention and it was absolutely AMAZING!!! I can't even begin to tell how happy Ellie and I were. But we'll focus on Ellie since this is her blog ;). Let's start with the flights. Well it was her nap time flying up there but have no fear, she did AMAZING! She got a little cranky but quickly hushed when I layed her on the empty seat to sleep. I was worried about the expo and crowds and El's attitude, no reason! She did great! She let a rep at Nova Nordisk (her growth hormone supplier) at the expo hold her without so much as a peep. She did more laughing and smiling then crying or being cranky. And she was perfect on the way back. She got to spend time with her Mamaw and Aunt Jess, and her cousin Em and Wes. It was just an amazing weekend all around!!!

I feel like I learned a lot. There were some things I already knew because Dusty likes to learn as much as he can, which means I have to learn to keep up with him. But I learned the correct term for her condition (ONH), I learned more about hormone replacements and when combinations could pose risks, what to do in emergency situations, anatomy and physiology of the brain, and a few other things that I can't think of right now. We met lovely new friends, especially Ellie's ONH "twin" Carsen and her mommy. Very few kids have similar symptoms but Carsen seems to be spot on with Ellie. (Minus the feeding issues.) Either way it was nice to meet another mom and baby with some of the same hormone issues. DI is rare so it's nice to meet another mom with a baby that has DI. It's one of those relating with one another things. I also met two adult girls with ONH, Mandy and Lisa. They are both independant and doing awesome things. Mandy drives but Lisa doesn't, but that doesn't stop her from going places.

As for lately with Ellie. She got another tooth! Her top teeth are coming in which is super exciting and A-D-O-R-ABLE! We were going from 10 bites to 1/2 jar of food everyday but now she's refusing anything. And I say again, it's not the taste but the food just the texture or the spoon or something. She's also rolling over now. Well, I've been saying that she can from her back to belly and belly to back. She did it from belly to back when she was upset and I made her roll over so she could wake up and eat, she just needed a reminder and then over she went. While I'm excited she's rolling, I'm also nervous. No more letting her be on the bed by herself anymore. All in all she's doing great! Soon I'll be posting links to a couple of seminars with the leading researcher Dr. Mark Borchert.

El relaxing in bed before Friday of seminars started.

Friday at dinner with Amanda, Carsen, Me, Ellie, Lisa, Mandy, Becky

The dinner was silly hat themed and someone gave Ellie a star headband!

Wesley, Ellie, Emma

My sister Jessica, Wes and El. Wesley said "Can I please hold baby Ellie now?"

Two amazing girls! Em and El

Ellie listening intently to Mamaw

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …about Holland.
--------------------------------------------------------------------

New mommies and old mommies. We have our good days and we have our bad, as long as our good out weigh our bad and we still manage to get up and press on during the bad, I don't see the harm in mourning what we thought once would be. It's tough when you expect one thing or your friend's kid who's younger passes yours. But this is our path. We didn't get the mass-produced path, we got a special, handmade, path that was made for us and our kids to follow. I have my days where I just want to cry and cry because I'm not getting the experience that I had expected or hoped for. But there are more days that I feel lucky and I thank my stars to #1 have my angel and 2 have my special angel who makes me appreciate the finer things and who helps me appreciate just exactly what life is all about.

10 months old and in 18 month clothes

Yesterday Ellie celebrated her 10 month birthday with her smoothie bottles ;) The whole solid food thing is not always working for her. And it's not the food, it's something to do with the spoon, because I mix the food in her bottle after we try to spoon feed and she drinks it without problems. I'm trying to think about what's new with her and the only thing that I'm coming up with is she's in 18 month clothes. We met up with my dearest friend Jade and her daughter Phoneix and Jade couldn't stop talking about how long Ellie was getting. She is really getting big! Growth hormone (GH) or not she's jumping through the clothes now. All of her hormones getting replaced are minimal. Her GH is 0.25 mg, her thyroid pill is 25mcg and her DDAVP is .0175 mcg every 3 days. (0.0175 mcg is less than a tear drop! Imagine measuring that out.) Some other kids take 4mg of DDAVP every day so we really are on the low scale of things. I know that saying that people are going to ask so may be able to get off of it one day, well maybe. Maybe Earth isn't the only planet with human life, maybe it will rain tomorrow, maybe I'll shave my hair. We really can't count on anything with her health or meds for the future. There are so many things that could change for better or worse that planning for it doesn't do any good.

There are some online support groups for parents now! We're so happy and lucky to have these! It makes the loneliness of her condition less isolating. Having some one else to talk to, and listen to. It really puts things in perspective and just shows all of us that not one child is alike. The problems and issues that each kid has is unique to them and not the same as someone else's. Some kids just have vision problems, others have hormone and vision, some have autism and vision or autism and hormone. But let me share some pages of other kids. First there's handsome Wes, his mom and siblings live in Apalachicola! I hope to meet him and his mom before we move. His mom was the first person I had a long talk with about SOD/ONH. Then there's Baby Belly Allie Rae, she is still being carried by her mommy and was diagnoised in utero (not sure if I used that term correctly but you get the point). (Allie Rae also has a facebook fan page, which I'm going to snoop through since I just noticed nursery pictures are up.) And we have Emma, ok, so I haven't read this one yet but I've very excited to.

And Lisa gets her own paragraph. Lisa is a 33 y/o woman with ONH/SOD. She has been so kind to talk to all of us parents about what she has gone through and goes through daily. She will be at the convention in a couple of weeks (WOO-HOO!) and she is so open to people asking her questions that she's just super! Her blog is http://pituitaryprowess.wordpress.com/ and she has a disability/craft blog http://craft-able-ity.blogspot.com/.

I'm going to sign off for now. I have some things I'd like to share first, so please enjoy:

Her touchy feely book

Trying to get the pages in her mouth of course



She has BLING in her ears now!

One of the rare bites she takes. She fed herself here. The face is b/c she didn't know food was on the spoon!

She doesn't need or want your help holding the bottle.

Katie Price, the british mum of Harvey. Standing up for her special boy!