Wow, I can't believe it has been so long since I last wrote.  I guess I wanted to keep Lily's birthday video up as long as possible!  I hope you enjoyed it.  Her birthday party was amazing... fit for a princess with lots of friends and family to help her celebrate.  There will be pictures coming.  I promise!

Since then things have been crazy around here.  There were the 1 and 5 year old appointments to be had for both kiddos.  And we've all been sick.  Tuesday was actually the first day in a week and a half that everyone was back at daycare/school/work!

On top of it all I've been working, working, and working some more.  And so... the blog and sadly Weight Watchers in general has been a little a lot neglected.  I'm lucky that I'm holding steady, but I've been around the same 2 pounds - still 20 pounds to go back to goal - now for pretty much the entire summer.  I need to break on through, and at the risk of sounding like I'm making excuses, I just can't seem to make it happen right now with all the extra "stuff" going on.  Weight Watchers before Lily, and Weight Watchers after Lily is sure a different experience. 

Initially I was so "not OK" with that.  I was angry with my results.  But I've come to accept that this is a different journey than it was before, and this time it is going to take me longer, and so I've made peace with that fact, even if I still feel frustrated at times.

Next week, I am off to North Carolina again for appointments with Lily - similar to what we did back in April.  Lily and I will be taking a little vacation after the appointments to the beach.  We are so ready for a break, and some time in the sand and sun.

My vacation plan is to simple and something that CWWL (Crazy Weight Watchers Leader if you need a reminder) taught me.  If you are simply replacing a "normal" meal that you'd eat, eat like you would at home.  If it's a celebration, than take the time to eat what you enjoy.  I think that's amazing advice for a balanced life!

I can do hard things!

I think I first read about this saying on Ann's blog.

This past week, I LIVED this saying.  I did hard things.  Several times I felt like I needed a Valium, but I survived.

Last Saturday morning I boarded a plane... alone... with a 6 month old baby.  She was amazing on our flights and as we switched planes in Chicago.  Several times I wondered what I was thinking trying to do this trip alone.  It was hard, I won't lie, but I did it.

Lily and I spent Easter with my cousin and her family, and then Monday and Tuesday of last week Lily participated in a Turner Syndrome study at UNC Chapel Hill.  We visited with Dr. Davenport, a pediatric endocrinologist, who is one of the leading researchers on Turner Syndrome, then Lily had a brain MRI, full developmental assessment, and blood taken. It is because of Dr. Davenport's research that girls with TS are starting growth hormone earlier and earlier. Lily and I were honored to meet her.

We are doing this #1 - to be able to meet with Dr. Davenport and gather as much information and get another set of eyes on Lily, and #2 - because it might help other girls with TS in the future, just like some of her previous work is going to help Lily now. We are not doing this because there is a cure, or something will change Lily's syndrome. Lily is missing a chromosome - it is not coming back. There is no cure for Turner Syndrome. It is just management of symptoms and challenges along the way.

During the appointments I found out some information related to Lily's height.  Lily is projected to be 4'11-1/2" if you use Dr. Davenport's formulas using my husband and my heights. I was told that about 90% of girls will fall very close to their projected height based on using the genetics of their parents. Almost 5 ft... that would be great! That is without growth hormone injections too (which a lot of girls with TS take). But... as with anything else with Lily, Lily is not falling in the majority. Right now if she continues to track on her current curve (On the TS growth chart she is only 10th percentile - and she is not on the regular chart), she would only be 4'4" or 4'5" tall! 

My biggest concern for her at that height would be the limiting factors making her life really difficult. She would need special equipment to drive a car, she would need to live in an adapted house to be able to do some of the "regular stuff" that most of us take for granted. She wouldn't be able to shop in a regular store. Because of this Dr. Davenport has recommended that Lily start growth hormone injections early - around age 1.   We will be back at UNC in early Oct, and will consult with Dr. Davenport again to see if anything has changed with her curve.  At that point we will likely begin growth hormone unless something changes dramatically.

After we were done with all the appointments I flew home on Tuesday afternoon. 

Sometimes when I stop and think about this it all seems like a blur.  There are so many times that things present themselves and I stop and think "I can't do this, its too hard!"  I thought that at my 19 week ultrasound.  I thought that as I was preparing to fly to North Carolina and have these appointments, I thought that as I was starting to run for the first time, and as I recently started running again.  I thought it today as Lily was sick for what seemed like the millionth time since starting daycare back in January.

But you know what?  Every single time I made it through.  I can do hard things!  I rock at hard things!  And you know what else?  SO CAN YOU!

What hard things can do you?

What are you doing for Easter?  Egg hunts?  church?  fancy dresses?  ham?

Well... I'm going to North Carolina!  And its not really for Easter - although I am visiting some family while I happen to be there.  I'm actually leaving tomorrow (Saturday) morning with Lily, to travel to North Carolina so that Lily can be a in Turner Syndrome study at UNC Chapel Hill.

I have heard nothing but good about Dr. Davenport and her colleagues.  I am so excited to be able to consult with someone who has studied Turner Syndrome for many, many years.  I am so thankful for the opportunity to gather more information, but also for Lily to possible help other girls with Turner Syndrome in the future - as some of the girls that came before her have done.

Sunday I'll be celebrating Easter with a cousin and family.
Monday and Tuesday will be the appointments for the study and we'll head home Tuesday.

Pray for us as I travel alone with Lily.  She had an ear infection early in the week, and is still really congested from a cold she is getting over.  She is already on antibiotics and we have numbing drops and Tylenol in case her ears bother her.

To the people that will be sitting around us on the airplane.  I am sorry.  You will love my daughter, she is smiley and happy, but also VERY unpredictable.  I promise I will buy you a Bloody Mary if you can just be kind and tolerant!

And I would be remiss if I didn't make mention to Good Friday, the day that Christians around the world remember the death of Jesus.  I believe it is through his death and his Resurrection that we are redeemed

How deep the Father's love for us!  Happy Easter!


How deep the Father's love for us,
How vast beyond all measure
That He should give His only Son
To make a wretch His treasure

How great the pain of searing loss,
The Father turns His face away
As wounds which mar the chosen One,
Bring many sons to glory

Behold the Man upon a cross,
My sin upon His shoulders
Ashamed I hear my mocking voice,
Call out among the scoffers

It was my sin that left Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished

I will not boast in anything
No gifts, no power, no wisdom
But I will boast in Jesus Christ
His death and resurrection

Why should I gain from His reward?
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom