Tuesday, May 29, 2012

Riding the Roller Coaster

Well, its been a couple of weeks since I last posted and after this post, I think you’ll understand why. Since writing last, we have ticked the following off of our “to do” list:

1. Visited Aerin’s pulmonologist and gastroenterologist in Orlando. Her pulmonologist is actually treating another patient with PWS so he was on the ball with everything that Aerin needed. He ordered her baseline sleep study and explained that we will keep her on the apnea monitor for at least 4-6 months while she starts the growth hormone. The GI doctor was wonderful as well, even if she doesn’t have any PWS experience. She looked at Aerin’s stoma, cauterized the site so it would no longer form granulation tissue and set some volume guidelines for the next couple of months. 

2. Received our Family Service Coordinator for Early Steps and set an evaluation date. I met with our Family Service Coordinator to do Aerin’s work-up and sign all of the papers. She was very kind and I am so thankful that she seems very easy to communicate with.

3. Had a physical therapy and speech evaluation to start therapies while waiting for Early Steps to get started. We kept hearing over and over that the earlier therapy is started, the better. So we went through our insurance to get the ball rolling while we wait for the state early intervention program to get going. We are super blessed with a Speech Language Pathologist in Melbourne and a Physical Therapist in Orlando--both of whom have truly connected with Aerin...and us. :)

4. Started speech and physical therapy! Yay!!! Admittedly, it’s really hard to watch her have to work so much to do such basic things. I left our first PT session in tears because it brought home how many challenges Aerin faces. But our therapist, the sweetest thing on EARTH, loved me right through it.

5. Drove to Gainesville to meet Aerin’s Endocrinologist. Dr.Miller runs the largest Prader Willi Syndrome clinic in the world and has extensive working knowledge of this rare genetic disorder. Talking to her was SUCH a blessing! Everything other PWS families had said about her was true--she was full of hope for Aerin’s future, she connected with us and with Aerin immediately and she is truly an expert in her field. Under her watchful care, we are closely monitoring Aerin’s total volume to make sure she is getting enough nutrition to optimize her physical and mental growth. We will also be starting Growth Hormone Therapy under Dr. Miller within the next week or so--the most promising medical breakthrough for PWS kids in the last decade.

6. Completed Aerin’s first sleep study. I don’t think she’s ever cried as much as she did when they hooked her up to all of those sensors for the study. Poor thing! But she did great and actually PASSED! PWS kids have narrow airways and are significantly more susceptible to sleep apnea and, in some cases, sudden death--particularly as the Growth Hormone causes the tonsils and adenoids to grow large and fast. Aerin had ZERO apneic episodes during her study and the pulmonologist will continue to monitor this with regular sleep studies after starting the GH.

Whew! And those are just the BIG, MAJOR things. They don’t include all of the daily victories, like when Aerin lifts her head for the briefest moment or when she powers through 30 mls on the bottle. Like when she makes long eye contact with you and you can feel her tiny spirit burning through those big, beautiful eyes and you know that she’s inside that little, frail, limp body just waiting to burst out as soon as she’s strong enough to do so. And when a small smile flits across her face as she falls asleep and you know that you cannot possibly love anything as much as you love this sweet girl.

But there are so many hard days. Days when I feel like life is just one, big insurmountable mountain that I will never get over. And I fret and worry and grieve and despair.

And I wonder...when will my life no longer feel like this frantic roller coaster ride of super highs followed by leveling lows? When will I be able to fully surrender to His peace--the peace of truly knowing that He is sovereign over all of this and that life doesn’t have to be a roller coaster. I prefer the carousel anyhow.


  1. Kristin,
    What a long way you've come already! In just over 2 months, you have accomplished and overcome so much, and so has Aerin! She is such a precious baby and think of how many people's lives she has touched already. This isn't the road (or roller coaster:) you would have chosen, but the Lord is with you in the highs and lows, each moment of each day. We pray Aerin gets stronger, and you can fight this battle everyday. You're doing great!!! Love,

  2. What a sweet little girl she is. What a busy few weeks it has been for you and yet a lot has been accomplished! Praising God.
    William prays for her everyday during meals and bedtime! He loves looking at her pictures.
    Love to you all