New Year Resolutions

This is Ellie's blog, but she's not old enough to type or write, or even talk yet so I'll tell you my new year resolutions.

1) Not to accept anything less then the best. This goes for Ellie's medical care, her daycare, her therapists, her clothes and toys. This is the least I can do for her. She has been through more in her life then she deserves, as have most special needs kids, so that is what I can do for her.

2) To do the best I can. I work full time and take a full load of classes and take care of the house (ok so that's mutual between me and the husband but still). Dusty and I have a lot going on in our lives, we have our own wants and desires and we have ones that we want and desire for Ellie. She take precedence but that doesn't mean that we won't take time for ourselves. We will do the best that we can for her and ourselves. (Luckily I have a husband who makes me take time for myself! We're good for each other like that.)

3) To make progress. Heck yes I want her to eat, even baby food. I want her to stand and talk and walk and twist and turn like she's supposed to. BUT that may or may not happen in the next year, who knows! What I do know is that she will make progress, little by little she will do something better today then she did yesterday and that's all we can expect and ask for.

4) To learn! We will go to the The MAGIC Foundation's Convention in July again. It's great to be around people who understand or know about your daily struggles as a parent of a child like Ellie. It's also educational, even if we learn just one thing new, it's completely worth it! And just like not settling for anything less then the best we will be on par with the doc's and their terminology. In order to get the best care it's nice to have two people speaking the same language.

5) VIDEO'S! I bought a small and easy video camera last year for the convention and thought, sure I'll use it again... well I just got it out of storage. I also bought a small (and portable) tripod to get better videos.

Here are some new and old videos from the video camera for you to enjoy.

Lazy Dayz

This is our second lazy weekend. Lazy in our world means no therapy. I hate the guilt that I feel for not doing tummy time or feeding time. It should be easy to just feed a child or put them on their stomach to play or push up, especially at 15 months but it's not. It takes work and persistance and some tears and time. In order to do it we have to plan feeding just right. She can't have just ate, she can't be thirsty, it has to be just right. Tummy time, well we should just do that anyway but I feel like she gets beat up enough during her one 30 minutes OT session and 45 minutes PT session once a week that I don't want to put her through it at home when we can just have an enjoyable time together. 

I know we need to do these things to help her not be so difficult during therapy. I swear though, I just want to hold down her therapists, blind fold them, and shove their hands out into the unknown and touch things they don't know. She cries from discomfort and frustration just about the whole time and it's starting to wear on this mommy. I just keep quite until her cries go from discomfort to meltdown and then I intervene. My other job there is to cheer her on when she does things that she doesn't normally do or like. Luckily feeding therapy is less tramatic, we try to prevent the crying there. And her sensory issues with things touching her mouth and going inside are doing much better! She'll let me get a spoon in there now but she doesn't exactly swallow. She'll just leave it in her mouth until she can't anymore and then either swallow or spit it out. But she doesn't throw a fit when her lips are touched with a spoon so that's progress.

For the mommies out there with kids with no issues. Be thankful when they roll over... it took a lot of work and 9 months before she did it for the first time. For the mommies out there with kids who lock their legs and try to stand at 5 months be thankful, Ellie still doesn't. I'm not bitter, or down, I'm thankful for every moment, for her licking her lips for the first time a month ago, for the first roll, and for the first twist to pick up a toy.

Tomorrow and the next day and every following day we'll do better... we have to. We want her to progress and that's going to take work. 

Resolution?

Well I talked to daycare and I felt like I got brushed off by the program director. BUT something has changed or clicked. She's been changed at daycare two days in a row and they are writing down her daily activites now. She was changed because she has a faucet of drool coming out of her mouth and it's soaking her shirt... to save on clothes we're going to have to get some bibs! I also randomly went into daycare this week. I told them I was going to do it but didnt' exactly tell them when. As for the daytime provider... I think we're on the same page and we understand eachother a little better. She doesn't have kids of her own which makes me nervous but my cousin and friends have worked at a daycare and they don't have kids of their own and they love the babies, so maybe that is a feeling that isn't valid and I just need to get over.

Ellie has a cough that has been going on for a few weeks now. Partly because of a runny nose, partly because she was sick a couple of weeks ago. Either way, I hope it goes away soon. Each cough is like a dagger in my heart. She was getting melatonin to help her sleep through the night but she'd still wake up at 2 or 3, so one night she didn't get it and slept through the night, she hasn't gotten it for a week and has been doing better at sleeping through the night. (Yes, melatonin is not exactly normal for children to get to help them sleep but when you can't see day or night you can get a little mixed up on sleeping times.) I think melatonin has jump-started her normal sleeping pattern, I just hope it continues.

She's still not eating food, but since she started feeding therapy her mouth is a little less sensative... baby steps right? And she has teeth! 4 on top, 4 on bottom and 2 coming in on the sides (random premolars). Anyway, it's time to hit the books before my deadline comes and goes. Have a great weekend!

2011 Christmas Family Photos

Check out our family photos!

Dear God, I'm at work but I need you at daycare please

Let me start by saying, we are very thankful for the healthcare that we have gotten since moving here to Ohio. Work is a struggle for Dusty and I; he's learning a new portion of his job, and I'm getting back into the heart of mine for the first time in years.

Anyway, Ellie's daycare has her PT, OT, and feeding therapy. (That's right, she's getting feeding therapy! Onto that later...) Dropping her off the first day was incredibly scary, as with any child. She's still in the infant room since it's safer then the toddler room where kids are running around not paying attention. She had her adjustment drinking so she was getting DDAVP more than normal which interfered with her drinking and it was a vicious circle. After about a month and a half she got on a routine, and I grew to really appreciate the daytime care provider. I had my worries about the afternoon care provider.

With all of that said since her daytime care provider quit less than two weeks ago Ellie has come home with a wet shirt on two occasions, and Friday... well that’s why I’m praying. I’m praying for patience and understanding because I want to know WHY Ellie came home with her shirt smelling like puke, front AND back. I don’t have the patience not to go in there fuming. I forgot about it yesterday and honestly that’s best because my blood boils too hot when I think about it, and tonight before I started typing I had to have two glasses of wine (all I needed was an excuse).I’ll do my best to update quicker but until then I’ve got to sign off...

Please look below and see the link to our family photos. Yes, we’re cute/awesome/loving and any other adjective you can think of ;) And I know, they both look exactly like Dusty... damn those genes are strong, let’s hope my nose gene is stronger ;) just kidding, I don’t notice those things. (haha, although weight I do...)

Anyway, more to come later...

Ellie's 1st Birthday

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Getting Settled In

We're starting to settle in a little more and more everyday. Ellie is a hoot that's for sure. She's definitely developing her personality and it shows even more everyday. I'd say right about now it's more of a spoiled personality ;) She's been extra winey lately, but it could be a tooth. She won't let us feel in her mouth to see. The past couple of days we've had a hard time getting her to drink more than 2 oz at a time (and not taking more than an hour drinking the 2). We're really hoping that it's a fluke so we'll see. We got her enrolled into Tricare up here and then scheduled her a dr's appt for her 1 year follow up. At that appt I had a nice little "cheat sheet" explaining Ellie since birth with all of her medical issues which was helpful (and I'll keep up to date and pass out to who needs it). Apparently there are other children in the area with SOD/ONH too! I asked the pediatrician to hand out my info, I doubt she'll do it but as you all know, I'm serious!

We have her endocrinologist appt coming up and we're trying to get PT, OT, and a feeding therapist going as soon as possible. But #1 on our list now is finding some one watch her while we're at work. Luckily, Dusty has a little more time off work but it's not much and we're scrambling. Dusty called around and found a daycare in her therapy place so hopefully we're comfortable with taking her there otherwise we nervously have to leave her in the care of a nanny that we're looking online for. It will all work out right? Yeah, try reminding a mom who has to give her baby to someone new, it's terrifying!

O HI O

Hi all! I just wanted to do a quick update to let you know that we made it to Ohio! We got up here Wednesday of last week and we move into our house and get our shipment today! I'm excited to finally have a place to call our own again and I know everyone else feels the same way.

So far Ellie has done well with the traveling. I actually bought her a Scentsy Lamb that she started sleeping with before we left and while I'm not sure that it's helped her adjust or sleep it's brought me piece of mind that she has a few things that are just the same. We have also continued to use her night time Violet dog that plays lullabys. None of it has really helped her stay asleep through the night. We're running into the problem of her waking up at 2:30-3am. She doesn't cry but she does bang her legs/feet on the pack and play (and bed) until we get up. Dusty and i are hoping this stops when she gets back in her crib and a more solid routine...

Well it's time to get all the stuff out of our temporary lodging and take it over to the house. I'll probably have a better update this weekend since we don't get internet until Thursday.

Wow, how time flies

Well Dusty got back from Afghanistan about 2 weeks ago and Ellie greeted him with a cold/cough that has last the past week and is hanging in tough. Poor girl is starting to feel better but she's on a steroid, which is helping but it complicates some of her medication so we really have to watch her. We went to the ER the other night and was there for about 5 hours (1-5am), luckily we only had movers coming to the storage unit and not work.

We have had movers coming and going pretty much all week, luckily today is the last day and then we go into temporary lodging on base until we head out Sept 6th for Ohio!

For those who are smart with dates (that typically does not include me) you know Ellie's 1st birthday is coming up! Now I personally am not going to say, Oh the last year has just flown by... It has been the longest and most emotionally challenging year of my life! I can hardly believe that I have a baby that's a year old though.


Her feeding issues are still around and I actually got her to play with food and take a few bites the other day but she really has to be in a good mood to even try. I'm hoping that she smashes up her birthday cake but if not then at least we can still eat it... By "we" I mean dad

I'll soon have a new battery for my laptop which should make updates easier. (I hate being chained by my power cord.)

As for the last posting of no more meds.... Unfortunately that's not the case. She needs the medication we just don't give it to her as frequently. Depends of her and how much is absorbed when blown in her nose (sounds funny but don't get hung up on the details )

Until next time....






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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.
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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!



Snap shots

Mom, I know you want me to make a mess but this texture feels a little weird. I think I'll wait before my hands go back in. (For the record she dumped it out but wasn't too sure about it so she just played with her hands.)


My new play chair, thanks to Children's Home Society, aka Early Steps. This is temporary until we can get her own.


Good morning! (I love her bed head!)


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The Most Beautiful Flower, by Cheryl Costello-Forshey

Another mommy to a SOD/ONH baby posted this. It makes my heart melt!

The Most Beautiful Flower
By Cheryl Costello-Forshey

The park bench was deserted as I sat down to read
Beneath the long, straggly branches of an old willow tree.
Disillusioned by life with good reason to frown,
For the world was intent on dragging me down.

And if that weren't enough to ruin my day,
A young boy out of breath approached me, all tired from play.
He stood right before me with his head tilted down
And said with great excitement, "Look what I found!"

In his hand was a flower, and what a pitiful sight,
With its petals all worn - not enough rain, or too little light.
Wanting him to take his dead flower and go off to play,
I faked a small smile and then shifted away.

But instead of retreating he sat next to my side
And placed the flower to his nose and declared with overacted surprise,
"It sure smells pretty and it's beautiful, too. That's why I picked it;
here, it's for you."

The weed before me was dying or dead.
Not vibrant of colors, orange, yellow or red.
But I knew I must take it, or he might never leave.
So I reached for the flower, and replied, "Just what I need."

But instead of him placing the flower in my hand,
He held it mid-air without reason or plan.
It was then that I noticed for the very first time
That weed-toting boy could not see: he was blind.

I heard my voice quiver, tears shone like the sun
As I thanked him for picking the very best one.
You're welcome," he smiled, and then ran off to play
Unaware of the impact he'd had on my day.

I sat there and wondered how he managed to see
A self-pitying woman beneath an old willow tree.
How did he know of my self-indulged plight?
Perhaps from his heart, he'd been blessed with true sight.

Through the eyes of a blind child, at last I could see
The problem was not with the world; the problem was me.
And for all of those times I myself had been blind,
I vowed to see the beauty in life, and appreciate every second
that's mine.

And then I held that wilted flower up to my nose
And breathed in the fragrance of a beautiful rose
And smiled as I watched that young boy, another weed in his hand,
About to change the life of an unsuspecting old man.

http://www.focusfamilies.org/focus/poetry/poem5.asp

2 teeth and heading to Ohio!

I'm not sure what's going on with my iPhone but I can't get pictures off so I'll just upload them later.

Latest breaking news: Ellie turned 9 months old on the 2nd! She got another tooth! We finally got our assignment and it's to Wright-Patterson AFB in Dayton, Ohio! Ellie started growth hormone replacement. She's holding her own bottle!

Alright so the second tooth coming in was not fun... at all. But with the help of motrin on the last day it made her a little happier. Also, on the 2nd she saw her endo and started growth hormone replacement. This is a shot that she gets every day. The needle is pretty small and the only time she cries is when she's in a bad mood which isn't often. I'm starting to think the top ones are coming in. She's slobbery and cranky and warm, but we'll see, it does take forever for those things to pop through.

Her holding her own bottle is so convenient! She's not a pro yet but she's pretty darn good :) She is slowly starting to eat baby food again. I think she just gets frustrated and wants something right away. So I give her bottle first and then I (pry) it out of her hands and start with the food before she screams that I took the bottle away. She's not eating a whole jar like she used to but she's doing something and that's all I'm going to ask of her right now. I didn't think her eating was as big of a deal as it could be. There's a facebook page and yahoo group for parents of munchkins with SOD/ONH and it seems as though a lot of the kids have eating problems. It's terrifying to think that this could be a problem in the future, Dusty and I both don't want her to have a g-tube  (http://kidshealth.org/parent/system/surgery/g_tube.html) but today is not the day to think of it and we only take one day at a time.

So, she's on growth hormone replacement, ADH replacement, and thyroid hormone replacement. She gets cortisol replacement as needed. These 4 cover the hormones that she should be producing at her age. Yes, it stinks that she's getting all of them replaced BUT it's better to replace them then not to. And it kind of feels like a relief not wondering if there's something we're missing. Her ADH replacement (medication is DDAVP) for her Diabetes Insipidus was being given every 36-24 hours. But guess what! For the last few weeks she's been getting it about every 72 hours! It could mean a number of things 1) I wasn't calculating her I's and O's correctly or 2) she's weaning herself off. There's always the chance she will stop taking hormone replacements, if she does she might need them some other time, but then again there's the chance she'll always need them.

We weren't expecting Ohio. It was a little deflating hearing that's where we were going, but it will be great because we'll be about 2-3 hours from my family! I saw 2 ped endo's when I did a quick search and I'm sure they have therapists that will work with her. I just hope that we can have better confidence in the healthcare if she ever has to go to the ER again. I'm terrified to bring her to one in Panama City, they're not bad, they just don't know any of her conditions. When I do get out of the military there are a ton of AF civilian paralegal jobs available. Dusty's squadron will help set up his career so that he can continue burning through the ranks and showing how awesome he is, and we're hoping that he won't deploy as much. So while it's not Colorado like we were hoping, it's going to be great!

I think this is long enough, again, thanks for reading and feel free to pass along this blog to whomever would be interested. It's hear for education, understanding, and love.

Cute pictures

Just had to share these precious pictures!












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Someone call the WAAAmbulance

This little girl is becoming a whiner. I probably condone it but I'm really not going to stop picking her up, walking her around, or trying to make her smile and laugh. She has been a little more whiny then usual the past few days and running a higher temp. Another tooth? I feel like I keep crying wolf when I say that but seems like those little things are just taking their sweet time to pop through. She's getting big though. We are definitely out of 6 month clothes and into 9 month clothes. Which means we need to go shopping! I love shopping for her, but she has to be around because when I buy and she's not they always end up too small.

She said MA!!!!! The other morning I had just got done changing her diaper and putting clothes on her (which you have to do when she's sitting up like a big girl otherwise you get scream-central) and she lifted her hands up higher (because they are naturally in the field goal position) and said MA in her little pouty face :) I was super excited! I'm going to say she knew what she was doing with that one. She also said DA the other day when we were skyping with daddy. He doesn't believe it but she really did! She has also pulled herself up from a reclined positon... all on her own. Pretty darn cool if you ask me! We're so proud of her!!!!

She is still tight-lipping food :( It's so frustrating because of how much food I ordered right before she started... Well one day when I went to the grocery I figured she's almost 9 months now, it's time for her to try some meat and I bought veggies and turkey. I gave it to her this afternoon and there was definitely no tight-lipping the spoon that time! She only ate about 1/2 the jar but I'll try some other food tonight and then give her the rest of the turkey tomorrow. Too bad all that food I ordered was mostly fruits and veggies, I'm really kicking myself for that. It was $80 worth!

Ellie got her growth hormone medicine in the mail. We go this week to see her endo and maybe she's going to start on that. This stuff is no joke and I've had pharmacy's calling me and drug company's calling all to provide me with info and supplies. But we're pretty well set to start, I'm not going to look forward to poking her with needles :( It's enough of a pain to crush up and give her thyroid medicine and the nasal tube for her other medicine. It's the nature of the beast I suppose.

Oh how I love Vista Print! I ordered business cards for this site from there and I also ordered invitations for her 1st birthday part (and Dusty and my wedding reception) for really cheap AND got a FREE $75 gift card for Google Ad Words. Which I just initiated our Ad Word account. Ad Words is going to link this site any time someone googles one of my key terms. I'm pretty excited! I'm hoping that this is going to reach more parents and family members who have or is dealing with SOD/ONH/DI or any of the other issues that come from them. Which reminds me.... Ellie and I will be attending the Magic Foundation's Convention in July!!!! I'm so excited because there I am hoping to meet other families who know what we're going through, even if they don't have SOD, rare diseases are enough to bond people, we understand that very few really understand. If you want to know more here's the link to the Convention. (the highlighted words are actually hyperlinks, click to follow to the page)

If you're a parent or educator for visionally impaired children email me!
Till next time... enjoy the videos :)

I'm sure you've all been wondering...

The past week or two Ellie has been doing great! There was a week that she had a cold and cough that scared me enough to go to the ER but she was just fine and that same weekend a tooth broke the surface. Related? I'm not sure but I'm on alert if it happens again.

So she has a tooth and she likes to play and chop her gums. It's quite funny. She's also making her tummy time more effective, meaning she's kicking and lifting up and it's only a matter of time before she rolls over.

I have deactivated my Facebook account since I'm taking an online class. I'm just not disciplined enough to stay off of it while I'm doing, or attempting to do schoolwork. I'll get back on eventually but your Ellie 'fixes' will have to be satisfied here for now. Good news is I have an app on my phone to update from anywhere :)

Here are some photos






- Posted using BlogPress from my iPhone

Cortisol Deficient

Well, Ellie doesn't have an ear infection however, we got medicine just in case. She also got some poop medicine (it's been a few too many days). Just thought I'd share something about her poop ;)

We went to Sacred Heart Hospital in Pensacola today and had the test ran. Ellie has an acute cortisol deficiency. When she was in the NICU they tested her and she was within normal limits, but now she is below normal limits (I don't know what the measurement is but the cutoff is 18 and she's at 16.9). The endo said she has hypo-pit (hypopituitarism), but I just looked it up and it said if the body was deficient in one or more hormones produced by the pituitary gland; with her DI that would mean that she already had hypo-pit. Semantics I guess.

Brief med history about cortisol: an important and helpful part of the body’s response to stress, it’s important that the body’s relaxation response to be activated so the body’s functions can return to normal following a stressful event. Other positive effects: A quick burst of energy for survival reasons. Heightened memory functions. A burst of increased immunity. Lower sensitivity to pain. Helps maintain homeostasis in the body. http://stress.about.com/od/stresshealth/a/cortisol.htm

Her body is still producing cortisol but it may not be enough to help her during high stress situations, which include but are not limited to fevers over 102, medical procedures that last over 15 minutes if they cause her pain, or any surgeries or hospitalizations. We only have to give her the medicine when she needs it, and we'll have a pill for the fevers and shots for the other stuff. There's actually a letter with instructions from the doctor telling us when we should use it. But just like her DI medicine it's "as needed" which just adds more responsibility and stress to Dusty and I to make sure she gets it when she needs it and only then. What happens if she doesn't get it when she needs it? Well she could have an adrenal crisis, and there's a laundry list of problems that could happen but in short, she could go into shock or a coma. Highly unlikely at this point because she is still producing some, so maybe she'd show signs of being faint, but still something to be aware of.

She's not unfamiliar with the medicine though. When she was in the PICU and intubated they gave her some to help her relax and heal faster. It helped, and her endo even made reference to it in the PICU and today.

What does it all mean? It means this is what we were told to expect... the unexpected. It is a little disheartening to hear that there's something else that she (and Dusty and I) have to deal with, but that's what SOD is. It's a bucket of possible problems and only time will tell what ones we have to deal with. I'm not the doctor and I'm just getting to scratch the surface of all the hormones the pituitary gland makes and if the hormone is produced in the anterior or posterior (front and back of the gland, I did learn something in A&P), but it looks like we're getting all of the pituitary hormones that she needs right now replaced. Once she hits puberty we'll have to see how those work. so it goes back to... the unexpected.

Happy Easter

Ellie had an appointment with her endocrinologist last week. It went well, for the most part. She weighs almost 19lbs and is 2' 1" tall. That puts her weight in the 50th percentile and her height is right at or below the 10th percentile. Now here's the part where you need to keep up... SOD causes hormone deficiencies in the pituitary gland. There are eight major hormones. ADH is one, and that one controls the sodium levels in her body which is why we watch them and that causes her DI. Others include, but are not limited to, Cortisol (your ability to deal with stress, your fight or flight hormone), another is Thyroid (more to come on this), and IGF 1 (growth hormone, short stature syndrome, just being a very short person). These are the ones I'm going to talk about, but there are others that are important just not on our list at the moment.

Last week she got her thyroid and growth hormone (IGF 1) and sodium checked. Her sodium was perfect but the others are hovering just barely above normal range. If she develops a thyroid problem that could reek havoc on her brain development. SOD can cause mental retardation and there is research that links hypothyroidism to mental retardation (see link below to read more about this). Our endocrin has been very concerned and watching her thyroid since we left the NICU. Her cortisol levels haven't been checked since she was in the NICU so we need to make sure that's not a cause to the other low levels. Checking this hormone requires them to give her the medicine and see how her body reacts by taking scheduled blood draws. We got lucky and we go to Pensacola one day this week to have this test done, and we only have to wait until after lunch to find out the results. Ok, still keeping up?

If her cortisol is normal, pretty confident it will be, then we will start her on thyroid medicine. It's safer to have her on the high side of the hormone than the low. Meanwhile, doctor is submitting documents to the insurance company to see if they'll approve it, if not then she'll have to go through the testing and that takes 3 hours and 6 blood draws. It has to have insurance approval since once you start you have to take it, pretty much, for the rest of your life. I've heard that she'll be on the meds for the rest of her life but I've also heard that she can come off and I saw on a YouTube video that one person had to go back on once they came off. So there's no real definitive answer on this. Hopefully they'll go ahead and approve it, Tricare isn't that bad but the base clinic sucks. No offense Dr. K.Nation, you're good ;)

As for her Easter, well she's been a cranky baby this weekend and has been running a low-grade fever and is refusing solid foods (her mouth snaps shut when the spoon goes to her mouth). She's still drinking but I'm not sure if it's just teething or she has a new ear infection. She only seems to be happy with her sippy cup in her mouth or sleeping. Below is a picture of her Easter outfit. We went to church but had to leave before the service because she started crying. So we came home and then later went over to Jade's momma's (Kim) house for an Easter egg hunt. Kim had ordered eggs that make noise and one that says, "I'm over here." They're super cute and Ellie really liked them. She giggled at them because they bark (it's a safe/cute bark, not a big dog bark). We came home and she refused more teething toy options and then went to sleep. Hopefully we'll get in to see the pediatrician tomorrow. Hope you all had a wonderful Easter and your week is wonderful. I'll try to update once we're done with Pensacola but it may have to wait until the weekend.

SOD and Throid:  http://www.nmsbvi.k12.nm.us/downloads/PDFs-ForWeb-InfantToddlerProgram-FromECPCindyFaris-Late5.09/PediatricsJournal_ONHproposedStudyArticle1.pdf
and
http://www.soditalia.it/attachments/052_cortical_developement.pdf

2 weeks later...

It's been a busy two weeks since the last post, but Ellie is doing great! She has started OT and has met with her early interventionist. They have both left some pretty awesome toys that she absolutely loves. One is a moracca that fits perfectly in her hands and the other is a little chick that makes chirping noises. She has been doing rasberry's but the other night she started making the wa-wa-wa noise. I'm terrible at explaining her noises but I'll attach the videos. Also, she is sitting on her own with minimal assistance. She topples but it's after a good minute or two. Now that she's sitting it makes it a little easier for her to reach out and grab toys. We're practicing that and rolling over. I must say, I'm so proud of her and how well she's doing. And not to mention her using a sippy cup. I started letting her play with it about a week ago, and since she's teething and biting down a lot it helped her realize that's how you get the liquid out. It's taken her a little bit, but she took 3 oz out of it yesterday and took 5 oz out of it today. I mean, she's not even 8 months old and her gestational age is a month behind and she's already picking up the sippy cup! I'm going to give her another week before I move her completely over to the sippy cup. And if you're thinking it's too early, well I don't want her to be 2 y/o and still on the bottle so the earlier the better and why not if she's picking it up and not making a mess.

I'm about a month behind on her vaccinations so she just got her 6 month shots on Wednesday and that was not a good experience. She gets her blood taken and it doesn't nearly compare to the cries and screams of shots. But anyway, she got fussy and wasn't as nearly as hungry as she normally is... and then the fever and crabbiness. She had a couple of days of fever, but she is over and back to 100%. It's so nice to have such a happy baby. Really, she is absolutely wonderful and loving.

Last weekend we went to Aunt Stacey's house (daddy's Aunt) and there were a lot of people and a lot of stuff going on so she was a little crankier than normal but she took a nap and seemed to do better when I had her. I really think it was too much going on for her to be comfortable but it was neat to see part of the "normal baby" stuff of seperation anxiety, and to be honest, made my heart warm that she wanted her momma. ;) (Sorry Aunt Stacey and Memaw)

At Aunt Stacey's sitting like a big girl.

Wheeling around Target. She got to touch and explore a lot of new things.





Playing with her toys and sitting so great!



1st time in her exersaucer playing with her plastic slinky



7 months old :)

Last Wednesday Ellie had her appt with PT, OT, and the DS (developmental specialist). The appt went well and we got an idea of how much later it usually takes a VI (visionally impared) child to develop. She's is doing good and on the right track. She's going to have appointments which each of the therapists once a week, luckily they'll come to the house and daycare. This way Christie gets experience on how to help her develop while she's with her and I get to participate without being out of work all the time.

The last post was Ellie being sick. She's doing much better now, but she's still on her antibiotics but she'll finish those later this week. Friday night Ellie made her first rasberry! She had been working on it for a while but she finally figured it out. It was really nice because we were skype'ing with Dusty so he got to see/hear too! She doesn't have it locked down but she likes trying. One thing PT pointed out was, when you pull her up by her arms she doesn't try to lift her head, it just stays back. So El and I have been working on that and she lifted her head a few times last night when we were practicing. She also is doing SUPER on sitting up on her own, she did it for about 10 seconds on her own. The poor baby doesn't use the bumbo anymore because her little chunky-chunk legs are too think for it.

Monday starts her first week of therapies. I'm super excited to see how she progresses. We have a lot of help now and we're so lucky because of it. Hopefully this week one of her teeth pops through!

I almost forgot that when I took Ellie to the clinic to get her follow-up appt that someone said "Oh, she's tracking things so well." Ummm... No, no she's not. She's blind, he responded "Are you sure because she's looking around." Let's get this out of the way now... Ellie can't see! She may have some light perception out of her right eye but we won't know how much until she can talk and tell us. Blind people can still move their eyes around. It's not like us sighted people when we pretend to be blind and close our eyes. That seriously made me laugh. Am I sure?

Then someone yesterday at a derby function told me what she was looking at while I was holding her. It's not the first thing I say to people but I felt the urge in this case and then the lady apologized to me. I politely said No reason to apologize. I should say sorry to you that you don't get the experience to raise a blind child and get the wonderful experiences that I do. She smiled and said you're right. :)

As the Kenny Chesney song goes... ♪ She's got it all ♪

Man-o-man does she got it all! Christie, the wonderful daycare provider, called this afternoon and at first all I could hear was a screaming baby, then she said, she won't stop crying. So I go pick her up and she points out a bump on her gums. I know what you're thinking, OH A TOOTH! This is definitely not a tooth but more of a bump. So I take the puffy eyed-tear falling-crying baby and drive her (she finally gets quite!) to the on base peds clinic. Well our peds dr is out so we are referred off base to another dr. I would usually throw a fit (a-duh! my baby is special needs darnit!) but luckily I had heard good things about this pediatrician.

Our pediatrician calls Dr. Azam (yep, I'm going to use her name) and apparently talked to some nurse instead of the Dr or PA. PA comes in and starts talking about Ellie's history. Nothing in her "history" that they got from my pediatrician was correct, as I suspected. So I correct every bit of it and then said here's her story (for those of you who don't know). "Ellie was born 5 weeks premature with gastroschsis, she was on a ventilator for 2 weeks. During her 29 days at Gulf Coast they noticed crazy sodium levels so we were transferred to Shands where they diagnosed her with Diabetes Insipidus, that has to do with sodium not sugar (yes I had to say that), and Septo Optic Dysplasia. She was in the NICU for a total of 35 days. She got broncialitis and two ear infections beginning of January. At the end of January she was diagnosed as blind. On Valentines day she got RSV and was transferred to Sacred Heart and was on life support for a week, then stayed in the hospital for another week while they watched her sodium and changed her medication over to the hormone replacement DDAVP. After that she's been my happy and wonderful baby! Until now..."

PA "So when was the last time her sugar was check?"
Me "She does NOT have sugar diabetes, it's serum sodium and it's only checked by lab draws."
I realize this will forever be my conversations with new doctors/physician assistants/nurses while stationed in Panama City. Sucks for them because I will look at them stupid every time, Diabetes Insipidus is more common then SOD.

I'm pretty sure I scared the PA. Sorry, but brush up... I learned about this in Anatomy and Physiology 2.

The outcome is... she has... (wait for it)... an ear infection, a cyst on her gums, and on top of it all she's teething. Not only do these suck individually, combined they make a super pissed off Elliana. So, ♫ She's got it all ♫

On the plus side, they gave her bubble gum amoxycillen... hmmmm, momma wants some ;)

Time to start cataloging Ellie's adventures.

My mom gave me this notebook after Ellie was born. I had every intention of using it, but I never did. It's very nice and the outside is a faux-leather with the "Footprints" poem on it. I didn't want to use it for just anything so I've kept it around until now when I started writing in it. Then I thought, well it takes me longer to write then to type so let's finally give this blog thing a go.

Onto what started this whole thing off...
At 8pm tonight I got a call from Ellie's occupational therapist (OT). We haven't met yet and our first meeting is this week with OT, PT (physical therapy), the developmental specialist (DS), and the Early Steps Coordinator. She called becasue she just got back into town froma conference or meeting or something at St. Augastine's where there is a school for the deaf and blind. She met another parent of a child with SOD and a teacher who has a class full of SOD munchkins! She just wanted to call and tell me that she never assisted a child with SOD and she's happy to bring some more insight into Ellie's therapy. But moreso, she wanted to tell me she's going to try to bring me SOD parents to get in touch with because after all, parents are the best resources when you have a child with a rare condition like she has. I definitely share in her excitement and look forward to this meeting, not only for myself, but for what it will do for Ellie!

Ellie at 6 months