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!