A whole lot of growing and playing around here

Blair has been playing nonstop all day long lately. She is learning so many new things. We finally got to play in the yard before the rain came again. We planted veggies and a few flowers in a pot. Blair recently learned how to pick grass and flowers so first thing she did was pick the biggest flower out of the bunch, I laughed Darren gasped. Really funny. She is now putting her doll into her little play stroller and pushing her around everywhere, and she drags her dirty clothes basket and then makes different piles in every room. We've been having a hard time at night though, she tosses and turns and cries. I don't know if it's her teeth, hips or growing pains(which I remember very vividly). As I write she is running around with her toothpaste gigggling.

With bad news...

With the bad news I wrote about I figured I should write some good things that are going on. Blair is growing up so fast, she is saying "up", trying to say "shoes", mama, mom, etc. She is playing with Josh all day long, she loves to take his toys and have him chase her around. She's walking outside in her pedi peds that finally fit! Blair is still so loving and sweet, she gives rasberries and kisses and lots of hugs. She loves going to see grandpa and the horses, another word she is trying to say. She is so cute socializing with other kids, she likes to observe and quietly hang around them. She prefers being with older kids, babies aren't that interesting to her. I'm hoping we'll be done teething for awhile, the 5am screaming wake up call is getting to me lately. I'm not sure when we'll be even considering having another baby or moving so for right now we're having a great time being a little family.

What is the future going to hold??

As I assumed I knew this appt wouldn't be the best. NO PROGRESS, no progress for the last 3 appts. This time I was prepaired with questions: what degree are the hips at? What does this mean? When do we have to make the operation decision? Her hips are at 32degrees which in comparison she started out at 39 and 37....and the big number to get to is 25degrees by her 25th month, if not then surgery. I'm not sure how we're going to get down 10degrees when we have only gone down 4degrees with bracing. Dr. Hoffinger was particularly talkative and very understanding. Hip Dysplasia is filled with ups and downs he told us, and it's a prediction game, as in WILL HER HIPS BE AT THE POINT I WANT THEM TO BE BY THIS TIME and if not then we'll go in and fix it.
The trip was fun though otherwise, Blair was extremely social this time around. At the carter outlet she played with a little girl and waved to every kid we saw and every nurse. She walked around and really enjoyed going out in the stroller at night. She fell asleep earlier than I expected but did not want to wake up early. Blair had her first bite of hamburger from in and out and I got her so many cute clothes and pjs. We needed new pjs because she's no longer in the brace. There is something about 14months where the baby stops standing it or learns to take it off. Majic month 14.
As for our future I'm not sure what is going to happen. We go back in November and most likely will find out if surgery is going to happen or not. The cap off age is 4, but how can you put a freedom loving four year old into a full body cast from the chest down for 6 weeks?? How am i going to handle having a baby in a cast? Not to mention if anything goes wrong we're 5 hours away? I pray for no surgery because I know an experience like that will change our lives forever. I'm a planner and I hate not knowing what's going to happen, I NEED A PLAN! For now HD hangs over our heads until we go back and see the results.

Feeling super sensitive about everything!

This week before we go, maybe it's hormonal, but I am so SENSITIVE when it comes to Blair lately. I lost it with darren when he didn't know she had a poopy diaper right away, I can't stand to hear anymore people's "thoughts" or "advice" about our situation. Here's an idea just be supportive and listen don't tell me "you'll get through it", if it was your daughter do you think you'd be so nonchalaunt about it???? NOPE didn't think so. One thing I have learned from being a mommy: WHATEVER HURTS YOUR CHILD, HURTS YOU! Which lately has been everything, I feel like crying when she's crying, I get mad when she's mad, all I feel like doing is sheltering her from the world right now. But for now I'm watching her walk around with a cup in her hand almost ready for her morning bath.

The thing about HD

One thing that I have found with Hip Dysplasia is that it's an up and down process, yes a process. To go from one harness to another, one brace to another, U/S to x-rays and good news to bad news in a matter of months. From the histories I read online our stories are all similar inwhich there is never one fast cure. I want to have faith that everything will work out, and that our doctors are competent. It's times like this that I wish we didn't live behind the "Redwood Curtain", I wish we lived in the city where there are doctors who know what they are doing. Darren recently told me that Blair had an x-ray the morning after her birth, X-RAY?? Her bones hadn't ossified yet to even see anything, admist my grogginess I apparently didn't know what was going on. We have a week until our big trip, the trip that I have a feeling is going to set our future. That is: Surgery or No Surgery? Bracing hasn't been going well lately, between a diaper rash and teething.

Thoughts of how my life could have been easier...

I try not to feel sorry for myself, I'd like to think that we're given things in life that we can handle. So I handle Hip Dysplasia, I handle sleepless nights, I handle 10hour trips, and for the most part I handle the stress, and the What IF? I think I handle this in stride because I have such a GOOD baby, which somedays I don't realize until we go out to eat or are out in public and complete strangers, anywhere from a "thug" looking kid, mothers, and men with hairy beards come up to tell me how cute and well behaved she is. Which amazes me because I thought that is how all babies are supposed to be. But my daughter is so sweet to me, so cute, and happy...which is something you wouldn't expect when she sleeps in a hard restricting brace that I can't image being comfortable in.
My thoughts on how life could have been easier certainly includes Blair never being born with HD but becuase that is the cards we have been dealt I like to think about things that could have made our life easeir. First of those being someone who would put their emotions aside and listen to the doctors because to be honest the first 3 doctors I saw I can't even remember what they said, it was all a cloud and crying.
Second I wish someone would make higher neck turtle neck onsies so the harness wouldn't have scraped her neck and socks that are soft and stay in place so that her legs didn't get scraped.
One thing that I was so jealous of were mother's that got to wear the front packs, we weren't able to because of the pressure it would put on her hips. So I wish someone would invite some other way that a HD baby can be carried.
One other important thing that we missed out on was swaddling, because Blair's legs needed to be open as wide as they would go we couldn't swaddle her. I should have made something that would swaddle the top half of her.
I also wish the U/S and x-rays were easier and faster and came out right the first time. I wish there was a book that told everything you needed to know about HD that wasn't written in the 80's and that would address feelings.
I wish people would just listen and not try to tell me "everything is fine" "look at her she looks fine" or the latest "she's walking so how bad could it be?" Until you have a baby with HD or something similar you DON'T know what it's like, walk a mile, or even a night in my shoes and see how it feels.
And lastly for my rantings today is: Hello it's 2010 you'd think they could make a better brace that doesn't have a hard plastic back that is too small, and maybe 1/2 sizes since all babies don't fit into S, M, or L...

STEPS

At 13months old my baby girl took her first steps. She went to Grandma's house yesterday and took a few over there, then took some more in front of her daddy while I was in the bathroom, and FINALLY today she took a few for me!! It seems like a huge milestone, especially for having hip dysplasia. I'm not sure what our next Oakland appt will bring.