When things are not normal

When most people see Jillian they do not think "sick kid," they think "adorable little girl... what is that white thing coming out from under her shirt?" I love my adorable little girl with the odd white thing coming out from under her shirt. If you only observed Jillian for a moment or two you probably would not be able to tell all of her "stuff." Yea she is small for her age, around the 3-5th percentile for both height and weight (although we finally made it over 31in and over 10kg! Just barely for both but after over a year at work at that I will take just barely!) Most people think she is around a year old. Yes, that is closer to what her speech and motor skills are at but for everything that Jillian has been though in her life we look at a lot of little goals that she has met.
We have had some hard discussions this week with her ped. Some discussions that we needed to have. There is some frustration with a couple of doctors and it is not just us that is frustrated but some of her other doctors as well, the doctors who have taken the time to form a relationship with us. We see the areas that she has grown developmentally (she is up to 31 words that she can use sometimes spontaneously) and that she is very intelligent (watch this kid do a puzzle for 3 year olds sometime...) It was odd making her birthday wishlist because it included "3 year old" fine motor tasks and younger then her age speech and gross motor.
The hard thing is that while she is making some gains, it is coming with a lot of work. Milestones just come to most kids. It does not take therapy multiple times a week.
While she is making some gains in therapy, her health stuff is not any better. No we have not been in the hospital recently (although if she had been a "normal" kid twice in the past few months they would have hospitalized her but because we knew how to deal with it at home they let us go) but that does not mean that she has been "healthy." Making it 48 hours without a neb right now is a big deal and sadly not one that we are making very frequently. This fall we have used over 150 viles of nebulizer meds at our house! WOW! We are just starting to see poop for the first time in 6 days! 6 days without poop!!!
Most of this is just ordinary everyday life to us. Just like pumps beeping and nebulizers and medications... it is our normal.

However every once and a while it hits you.
Friday morning she was on the playground with her peers. My classroom looks onto the playground. When she first got outside she was playing with her friends. Within 10 min she walked over to the picnic and sat down and watched her friends play on the playground. She was exhausted. In making the 15 foot walk she face planted once. It was 40 degrees outside... she was dressed for the weather... she loves her friends and being outside. But doing "normal" kid stuff exhausts her.  She can walk, but doing it for a typical amount of time makes her exhausted.

After I talked with the doctor I went back into research mode. Honestly most of the time I stay off the internet with Jillian stuff. There is too much crazy and odd things out there. I'm not a doctor and while I can comprehend a lot of medical jargon, it does not make me a doctor. I try to leave the doctoring to the doctors. I typically only turn to research when we are making choices. I want to make informed choices. I am her best advocate. I want to do the best things for her.
So here we are, a week away from her 2nd birthday, and still don't have a name for what is causing all of this. I have a mother's gut instinct about some possible things, and with time hopefully we will know, but for now we are two years out and just have a long list of symptoms.
I am thankful to be getting to celebrate her 2nd birthday soon! I am thankful for the people who have loved us though the past two years. For the friends who have sat in the hospital with us, and read up on medical terms so they could speak our same crazy language.

No the last two years have not looked like I have imagined when the two lines showed up on that test, but I love my little girl even more as each day passes. She is an amazing girl! Truly amazing.  While I might not understand all of it, I understand that it all to points back to Him! She points me back to my knees so often, both in frustration and in praise.

We are blessed to be her parents, not because we have some superhuman strength as special needs parents, but because God gave us the gift to love her. That love fuels us to want to give her the world and do the best things that we can for her.

Happy almost birthday baby girl! I am so proud of you, and proud of how you now tell us "2" with you two pointer finger raised. I don't take all of your heard work for granted!

Putting her shoes on baby. Two of her favorite things!