Life at home

Wow, I know it's been awhile since I've posted but the past few months have been a transition that's for sure.

I am happy to announce that Ellie no longer goes to daycare and I stay home with her! This happened in mid-April and I think we're both very excited about the change. Since being home Ellie has started standing again and touching things more with her hands and allowing us to touch her hands! She is also talking more (and babbling mama!!) and has not been sick since leaving daycare! Her feeding is still not happening, but we have been able to make more appointments to dentists, opthomologists, second opinion therapies, and much more!

I'm very lucky to have a husband who supported this decision to leave active duty AF and cut our income in half. It was not an easy decision and to be honest it took us a year to get to this decision and see it through, but I think we're happier overall.

We have also started with with the Help Me Grow program and she's started to see a teacher for the visually impaired (TVI), we'll call her Ms. L. We really like her and enjoy what she brings to the table and she knows a lot about Ellie just based on her lack of vision. Ms. L is blind as well, although she has some vision it's so small but she is amazing at how she functions and works with Ellie. We went to see the new pediatric opthomologist, who is the first optho that I've felt confident in, and Ms. L came with us. We (the optho, Ms. L., Dusty, and I) believe that Ellie has some vision, but it is VERY minimal. Ms. L explained that she has to learn how to use it in order for it to be beneficial, which if you think about it makes a lot of sense, so Ms. L works on vision stimulation and vestibular (movement that Ellie craves since she's missing vision which compensates some for the movement).

I may have complained about her PT and OT before but they are really helping her and we're seeing good progress from Ellie. I got second opinions done, and for as much as I like the other PT, Dusty and I decided that right now changing her PT may not be the best idea. Her current PT has invested a lot with Ellie and vice versa.

I'll close this entry with some videos but I first want to make you all aware we are looking into going to China for stem cell treatment. We have done a lot of research, talked to families who have seen vision improvement and those who saw none and decided that the benefits outweigh the costs. So, stay tuned for updates on that too!

Spread the word to end the word.

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.
Do you? Will you? Spread the word to end the word

There are so many blogs out there with explainations on why you shouldn't use the word, how it makes us parents of children who have fallen behind feel, but I'm sure those things aren't hard to figure out. But just to put it in perspective: I remember when the doctor told us Ellie had Septo Optic Dysplasia. "It could mean that she could have no vision, from completely blind, to having no vision problems....(as if in slow motion)... and she could be developmentally delayed, from no problems to severely retarded." As I told him to wait so I could get my notebook to start writing down what he was saying, because lets be honest these are major blows and I need to remember this, "Retarded" echoed in my head. The thought of some one, some child, some adult, calling my baby, my daughter, my life retarded was... well there are no words to describe how it felt. It's taken me a while to get to this point where the R word is unacceptable because now I see the delays and now I see how far behind she is. Before you use the word try to imagine how it feels for someone to call someone you love more than life such a word instead of using stupid, loser, weirdo, or whatever the implied meaning was meant to be.

Resources

I got an email from the Ohio State School for the Blind and it included this website with a nice Shopping List. I need to pick and choose.

Annoyed Mom of a Blind Kid

I try to keep this blog positive and happy. I try to see the silver lining in all that we have been dealt but I'm feeling a little more annoyed lately than normal.

You see we moved here to get better services for Ellie. By services I mean medical and theraputic and we have better medical services now, but theraputic is lacking terribly! I'm so sick of going and seeing the same therapists every week who haven't worked with a blind infant before. They've gotten better and Ellie has progressed more (after my long email pointing them to new therapy methods) but I feel like there is some one or some place that can get us further than we are now. I'm tired and pissed that I'm always tracking down the next place for us to go or person to see. Why in the hell don't the therapists or doctors or nurses point us in the right direction?!? They get paid for this! Why am I constantly asking for adaptive equipment and not getting responses?

And most of all, WHY ARE WE HERE?!?!? WHY ISN'T ANY PERSON ON OUR HEALTH TEAM HELPING? Sure, they answer questions but why did I track down a feeding clinic in Cincinnati? Why didn't Endo, the pediatrician, the feeding therapist, or occupation therapist mention this to me before!?!?

And if someone could PLEASE tell me what a developmental specialist does I would appreciate it. We've had 2 and we have a referral to a new one and I can't bring myself to make an appt when the previous two had me so confused on their purpose and I felt as though it was a waste of time!

I feel like I'm going in circles and I already don't have enough hours in the day with work (that's a whole new bag of aggravation) so when am I supposed to call and get Ellie into the Help Me Grow program again? When do I have time to focus on all of these referrals, appointments, and new methods? I don't, this is what our "team" gets paid to do so why aren't they doing it?!?

Videos

Starting the year off right!

Over the holidays we got to spend extra time with the lil miss which was absolutely GREAT! She liked it too because when I did have to take her back to daycare she cried when I gave her to the provider. (Hurts my heart but it’s good to know she’s going to miss us too.) Anyway, extra time with her meant extra activities and in-home therapy sessions with mommy and daddy. She got to relax and lounge with us and then we played (therapy activities) too. Man, what a great time!... Anyway...

She’s starting to get bursts of energy, I can imagine that these little spazes (that’s what I like to call them) would normally result in a toddler running around or being rambunctious, but she has mobility limitations so she just tenses up and screams with excitement.* We’re engaging her more at home so I can really tell a difference in how she’s acting and exploring more and doing more things and so last night this little girl pushed up on her legs supporting all of her weight by herself! Super proud but thought it was one of those things like the first time she rolled over... she rolled but didn’t know what she did; it took her another 3-4 or months to do it again. Well tonight when Dusty was working with her not only did she stand ALL BY HERSELF! (with daddy behind her) she did it multiple times and at one point it lasted about 10 seconds.

There’s woman “the mom” from Uncommon Sense Blog who basically explained this time is when hope moves to reality. That we are moving from hoping that she’ll stand to knowing that she will one day and it’s not too far off. We hoped that she would stand and walk but quite frankly, I was preparing myself for wheel chairs.

Then, just when I thought I just witnessed the best thing of my day, week, and possibly month Dusty came up with an idea to try whip cream when feeding her.** So, he tried the whip cream and what an excellent idea! It has texture, solid without being too thick to make her sick, and she should gag that bad because it will water down quickly. She did GREAT! It was awesome and amazing and was eating it up! She didn’t gag or fuss! She ate a lot and did great.

Proud doesn’t even cover tonight!

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As for daycare and therapy... well I sent the therapists and email with alternate therapy methods and told them hand-over-hand isn't effective and it's time to try something else.... and daycare, well it's time for me to get out of the military. We talked and made a list and decided it's time for Ellie. It's scary to 1/2 our income but it's Ellie, she's need people who know her needs. Now it's just a matter of finding a reserve position open for me (I don't want to completely throw away 10 years in the military).

*Yes it’s really excitement; she’s not over stimulated or any of that stuff.

** Yeah, I know what you’re thinking, “But you’ve got to be worried about her teeth and you’re giving her sugar?” The answer is yes and we will continue because if we don’t move past the feeding issue then she’ll have teeth for no reason that will rot out anyway.

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

Click here to view these pictures larger

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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