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.

Saturday, May 5, 2012

Get out the vote!

Being a rare genetic condition, Prader-Willi Syndrome struggles to get funding for research into medical breakthroughs that can significantly improve the quality of life of those with the disorder. The more people know about PWS, the more support we can give to those living with this life-threatening condition. 

And you can help!

Help the Prader-Willi Syndrome Association (PWSA) win Michelle Obama's Video Challenge and take PWS awareness to the next level! You just need an email address to sign up and you can vote once a day through the end of the competition.  

I'm STILL moving...

Imagine my surprise when I opened up my Kindle to today's entry in My Utmost for His Highest and found this:

If Jesus ever commanded us to do something that He was unable to equip us to accomplish, He would be a liar. And if we make our own inability a stumbling block or an excuse not to be obedient, it means that we are telling God that there is something which He has not yet taken into account. Every element of our own self-reliance must be put to death by the power of God. The moment we recognize our complete weakness and our dependence upon Him will be the very moment that the Spirit of God will exhibit His power. (Oswald Chambers, My Utmost for His Highest, May 5)

I was thinking more on yesterday's post and I came to the conclusion that the main work going on in my heart right now is really humility. Yes, I am experiencing complete and utter reliance on the Lord but that is only because I was brought to my knees before Him first. It is so very humbling to be brought to that place where everything I think I can DO is really meaningless. Instead it is really coming to that place where I know that everything is BEING DONE in me by the work of the Holy Spirit.

So, today I will pump (a million times) and I will change her dressing and I will calculate tube feedings and I will try to bottle feed and I will make phone calls and I will read and sing and rock and revel in the joy of living through Him instead of through myself.

Friday, May 4, 2012

I'm moving...right out of my comfort zone

Well, I thought I would have more time to write here but the days are a crazy haze of pumping, cleaning pump parts, bottle feeding, tube feeding, pumping, cleaning out the feeding bag, flushing the line, turning off the false alarm on the apnea monitor, pumping, changing diapers, pumping, doing PT exercises, changing the G-tube dressing, giving a bath to someone, pumping, singing every children's song I can remember on four hours of sleep (which, incidentally, is like three), pumping, placating playing with the two big kids, scheduling doctor and therapy appointments, pumping, throwing a load of laundry somewhere, doing a load of dishes, reading books to or with someone, helping someone use the potty, pumping, holding my sweet girl and--wait--did I mention pumping? And those are just the days we stay home all day. Most days include at least one outing to speech therapy, a doctor's appointment or church.


So, here it is. I am living square in the middle of God's grace because He has effectively evicted me from the cozy little comfort-zone-home where I have happily resided all these years. I loathe making phone calls, but have to call everyone under the sun to get going with Early Steps, schedule private therapy, reschedule conflicting doctor appointments, and order more feeding bags. My stomach hurts--I mean clenches with mortal dread-- when I have to put a bandaid on someone, but I have to clean and tend to the hole in my daughter's stomach twice a day. I detest doing math in my head, but I work those ancient brain cells to calculate the amount and rate of each tube feed. I absolutely hate making babies cry, but I have to do tummy time with Aerin to help her neck and trunk muscles get strong (Okay, I admit I cheat on this one. I do tummy time on my chest and let dad do the rest.) And I know that this is just the tip of the iceberg. I don't think I can even fathom what is to come. This is, I suspect, just how God likes it since, otherwise, I'd be heading for the hills in retreat.

I hope that this doesn't sound as much like complaining as it probably is. To be honest, each time I take that tiny leap towards doing something that I swear I can't do, I find that I am amazed at how God gives me just what I need to get through it. It has given the verse "I can do all things through Christ who strengthens me. (Philippians 4:13)" several new layers of meaning for me.

In close, here are some pictures of my sweet thing. She just makes the best faces!

99 Balloons

A friend recently sent me an email with the subject "99 Balloons." It turns out that her niece and her niece's husband gained a powerful testimony through the birth, life and death of their little boy, Eliot. Grab a box of tissues and watch their story here:

Their story reminds me of how God is always at work in us, helping us turn our heartache into joy. In Him, death gives way to life, disability reveals ability, and pain reflects glory. I love how this couple allowed their hearts to remain fertile ground for His work and out of their son's life came 99 Balloons.

One precious part of their organization is to provide Prayer Cards--cards featuring a special needs child from another country--to those willing to pray. This is a wonderful opportunity for all of us to open our homes and hearts to those with disabilities!