New Doctor, New Adventures

To say we have been crazy busy around here would be quite the understatement! It is the peak of bridal season for me in the shop, Mike has had people coming out of the woodwork with automotive projects, and then we decide to switch pediatricians for Lily.
Switching doctors in and of its self was not really a big deal, but combine it with everything else and new tests and more appointments makes for a little bit of craziness:-)
So why switch doctors now? Well we weren't exactly unhappy with our old doctor, but we weren't really pleased either. She was adequate, I think, but Lily was never really "sick" in the typical sense of the word. The little contact we did have with her was for basic well baby visits or to have her refer us out for Lily's club feet or hearing issues. We never consulted with her for therapy because Lily qualified for therapy though Wisconsin's Birth to 3 program. But Lily is going to be 3 in a few short weeks, which would mean that we would have to go to our doctor and request continued therapy for her, much more than is typically allowed per year through insurance. And we just didn't feel like this doctor would fight for Lily to get her the treatment she needed. So we said good bye and found a doctor who would fight for any and all treatments Lily might need.
Our good friends Roy and Kari found this doctor through one of the specialist's their daughter Mei sees at the UW Children's Hospital in Madison. He is awesome!!! He specializes in internationally adopted children and children with special needs. It was very obvious that he had extensive experience with children like Lily who come from difficult backgrounds. The questions he asked and the interest he showed in what we knew of her past told us that he knew what he was doing. He immediately ordered a whole battery of tests on her thyroid, liver and kidneys because he is concerned about her continued low weight even as she eats 5 full meals a day. She is still below the 3rd percentile for weight. He also referred us out for a genetics consult just to make sure we are not missing some weird or rare syndrome.
He also gave us strict orders not to discontinue any therapy what so ever and told us he will sign off for any and all therapies that her therapists requests. Yeah! We were really afraid that once Lily turned 3 that we would have to cut back and slow down or lose the progress that we have made so far. And she can keep her same therapists which will be awesome for her.
So far all of her blood work has come back normal. I think we are still waiting for a couple that will be back next week. The genetics consult is scheduled for August - I am looking forward to that, I have always been fascinated by genetics.
All I can say is it sure is nice to have a doctor who is so intensely interested in your child - we have some one who is a partner with us now who will advocate for her medical needs.

Momentous Day!!

Our little girl who can't even talk or walk yet(although she is working mightily at both) has decided that she wants to potty train herself. For about the last month already she hasn't been wetting at night. At first we thought it was a fluke but it soon became obvious that as soon as we would open up her diaper in the morning she would visibly push/grunt to relieve her bladder. She was sick of peeing in her diaper. She also started getting very agitated at different times during the day, which we have come to discover is her way of trying to tell us she has to potty.
So we started working on the sign for potty with her and just this weekend we got her a potty chair of her very own. We sat her on it a few times with her clothes on just so she could get used to sitting on it and she did very well. She has been on it a total of maybe 4 times with her diaper off. She has been rather puzzled by the new routine, but I just sat her on it for the heck of it before I got her dressed for the day, and what do you know! Lily peed on the potty!!! She was loving all of the praise:-)
I am not sure where this will go from here. We want this to be entirely positive and driven by Lily's desire, not ours. She continues to amaze us everyday. She maybe can't walk yet, but she sure is letting us know there are other things she can do and she is going to do them!

New Month, New Adventures

Can we really be in March already?! Time gets screwed up when you have kids I am finding:-) It feels like just yesterday that we brought Lily home, and at the same time it feels like she has been with us forever.
Lily is changing so fast we can't even keep track of all of the progress she is making on a daily and sometimes hourly basis. She is getting so strong and she is really beginning to develop her own personality. She is sweet and quirky and a little goofy.
What can I say - we are so blessed by God to have this little firecracker of a girl in our lives. I can't even begin to describe what it is like to watch God working so directly and evidently in our lives - in her life.
Thank you God.

Jennifer

Poem

From Dear Abby's column today, a request for a reprint of a poem that had appeared in her column before:

The author, Edna Massimilla, wrote it after her daughter -- a child with Down syndrome -- was born.

I have always found its message to be very moving and, when I spoke to Edna, she told me it was written to emphasize that every creation is for a purpose. She's in her 90s now and still writing poems and songs -- especially for children with disabilities. Read on:

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth.

It was time again for another birth.

Said the Angels to the Lord above --

This special child will need much love.

Her progress may be very slow,

Accomplishment she may not show.

And she'll require extra care

From the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away.

So many times she will be labeled

'different,' 'helpless' and disabled.

So, let's be careful where she's sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith, and richer love.

And soon they'll know the privilege given

In caring for their gift from heaven.

Their precious charge, so meek and mild

Is heaven's very special child."

******************

While we feel quite confident at this point that Lily will overcome all of the delays and difficulties she is currently facing, this poem gets to the heart of why we decided to take a "risk" on a special needs child. After three years of agonizing waiting and frustration God showed us that we were actually the ones with special needs. That we had hardened our hearts to His beautiful and wonderful creation. Once we allowed Him to repair our hearts we were finally able to receive the precious gift He had in mind for us. Lily is exactly what the poem says "so meek and mild" and she is most definitely "heaven's very special child." We are extra special blessed in understanding that God guided our path in such a way as to allow us to choose this little girl for our very own, simply out of the faith and love He put in our hearts.