Monday, July 6, 2009

While we're waiting...

A few months ago I saw the movie Fireproof, and I'm once again reminded of the lyrics to a great song from that movie:

While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

As of today, we've been waiting for six months for Lauren to get her new heart.

A few weeks ago, Lauren's physical therapist did a gross motor assessment that didn't show as much improvement as I had hoped. I was also thinking about how Lauren's still not eating anything by mouth. I had such high hopes for what Lauren could accomplish while we were here waiting. After spending a while moping about what hadn't happened, I started trying to think about what sort of progress she has made.

In the past six months, Lauren has gained approximately 3 kg. That's roughly six-and-a-half pounds for those of you that haven't lived in a hospital long enough to start thinking metric measurements.

In the past six months, she's gotten 6-7 cm taller (roughly 2.5 inches). She needed a wardrobe change to go along with the changing of the seasons since we've gotten here.

Six months ago, Lauren walked into the playroom and worked some of the wooden knob puzzles. The ones where the cat piece fits into the cat-shaped hole. She struggled with putting together 12 pieces that made up a picture. Lately, she's easily finishing several 63 piece puzzles. The other day, an older girl (seven) tried to tell her that she couldn't pick that hard of a puzzle. Lauren proved her wrong.

Lauren's talking all the time. She was talking before we got here, but she's made huge improvements. Last night I walked into her room, and she started explaining how "IV team was coming up to flush my PICC line and that they didn't need to do a new IV, just fix the PICC line because the pump had been beeping."

In the past six months, Lauren's picked up quite a medical vocabulary. She knew most of the names of her medicines when we got here, but lately she learned that the often have a generic and a brand name. One night she made her nurse look up the generic name for Singulair. The only thing funnier than hearing her say "Montelukast" is hearing her talk about "Chlorathiazide or Diuril."

Unfortunately, in the past six months, Lauren's also learned to say "wutter." You know you've been in Philly too long when...

I've learned in the past six months that Lauren has an amazing memory. She's big on asking people what their names are, and she rarely forgets a name. For most of the people she sees regularly, she has some sort of "inside joke" with them. For instance, she knows which nursing student will let her draw on her gloves, which nurses will let her hold their ID badge, and which nurse will let her cut tape into little pieces. She calls one of the fellows, "Sticky Tape," which we think refers back to the night back in January when he commented on a Dora episode. Over the weekend, Lauren was talking to one of the nurses on the floor and remembered that she had helped us when Lauren accidentally pulled out her g-tube three months ago.

In the past six months, Lauren's gained a lot of strength (even if she hasn't picked up on many motor milestones). She regularly works out in the gym and is now up to a full 30 minutes on the treadmill. A few weeks ago, she was doing interval training. She'd be walking at her normal pace, and then they'd turn the speed up so that she was jogging for a minute or so. She'd recover at a walking pace for two minutes and then they'd increase the incline so that she was climbing uphill.

Even when Lauren's not in the gym, she's always on the go. I clipped a pedometer onto her pants a week or so ago for fun. She hit a little over 15,000 steps that day. Color me impressed!

Another big accomplishment is that she's starting to jump a little bit. Yesterday afternoon, she was doing quite well and got her feet slightly off the ground a time or two. She has to count, "One, two, three, jump" or it doesn't count, though.

Lauren's made many, many art projects in the playroom. We've been encouraging her to write at least an "L" so that her pages will have her name on them. Even though she can only write an L, she can now spell her first name.

In the past few weeks, Lauren finally convinced me to share my laptop. She can now type her name by herself and play a few online games. I was impressed with just how quickly she picked up on various mouse skills and how quickly she's learned to hunt and peck when I spell words for her to type.

And, finally, I can't think back on the past six months and not marvel at how much her imagination has blossomed. I think that's what Sunday afternoons with nothing going on will do to us. Much of this past weekend was spent picking imaginary apples in the empty unit down the hall. We then got some plates and plasticware out of the kitchen so that we could bake apple pies to share with most everybody on the floor.

About a month ago, Lauren asked one of the nurses to juggle for her. He asked what he should juggle, and she answered, "Pagers." He responded that he only had one and that she's have to go find two more that people didn't mind if theirs got dropped. She turned around, pretended to pick something up off of a nearby counter, and handed him two imaginary pagers. Yes, I was laughing out loud when he then juggled the "three" pagers by tossing his from side-to-side.

Another line from John Waller's song "While I'm Waiting" is "I'm waiting on you Lord, and I am hopeful."

We are hopeful tonight and every night. I know that God has a perfect plan for Lauren and for all of us. I read Isaiah 30:18 last week. "Yet the Lord longs to be gracious to you... Blessed all all who wait for him!" The Message translates this verse slightly differently, "But God's not finished. He's waiting around to be gracious to you. He's gathering strength to show mercy to you. God takes the time to do everything right - everything. Those who wait around for him are the lucky ones." One of these days I'll be able to remind Lauren of all the ways God blessed us while we wait.


  1. Cristi-I found you through KFA and have been "following" your story for a while. I can not imagine the day-to-day life you guys are living right now, but your strength and endurance will succeed over this triumph.

    Lauren is already so strong and amazes me each and every day. Her road may be unclear now, but she has the strength to succeed!
    Hang in there friend!
    HE will overcome all!

  2. I pray for Lauren and all of you daily, I'm glad to read your update and see the encouraging moments, as exhausting (mentally and emotionally) as all of this must be! We will continue praying...

  3. Now you've got me crying right before bed! :) So excited to see all the things Lauren is learning, doing, growing . . . and I can't wait until she and Nelson can play together again! Still praying with you!!

  4. All of Lauren's acquired medical knowledge will be helpful when she heads off to med school some day:) Seriously though, you and your family are such a blessing and encouragement to so many. We think of you guys and keep you close in prayer.

    Karen Conway

  5. Heather aka Sarah's momJuly 7, 2009 at 10:07 AM

    I pray for Lauren to get a new heart daily. Also for you to keep your strength. Does she have a Webkinz? My son is Lauren's age and can pretty easily navigate Webkinz world (not the toddler one, the regular one).

  6. I admire your ability to turn from your sadness to eternal hope in the Giver of Life, who hears all of our prayers and, as you said, waits to answer them in just the right time. You inspire faith in me and everyone who watches you and Lauren wait. I agree....Lauren sounds like she would be an awesome doctor someday. Maybe that's what God has planned for her...

  7. Another Mom who found you and Lauren through KFA. Thanks for the update. You are an amazing inspiration so I wanted to share it with you. Even in this waiting God is using your spirit and willingness to share to bless others too.


  8. You continue to amaze and inspire me with your faith and strength. I pray that God's plan does not include too much more waiting!

  9. another from KFA (Stephanie). your story amazes and inspires me. I think about you guys every day and know that her heart is out there and waiting on the perfect moment. HUGS! thanks for keeping us updated.

  10. Hi Cristi - My name is Toni Jill, I was Caryn's first roommate at CNC and got to see her for a few minutes this summer at Myrtle Beach and she told me about Lauren. I wanted to write and let you know that my husband Chad and I are praying and I sent your story to a couple that we are friends with who went through a similar situation with their son Todd - who had a liver transplant. The Greene family is also praying for you as parents who know what you are going through and can pray like none of the rest of us can. But tonight, I pray peace for you and your family and rest for your weary souls. I will check back with you soon but wanted you to know that we are here....Love in Christ, Toni Jill (Parris) Cox

  11. Your Walter Reed family also continues to pray for Lauren. Reading your anecdotes, I am truly amazed by how much Lauren's mind has grown. (Trust me, she already knows more than many of our new interns!)

  12. What a smart person you are to look for the accomplishments and not at the impediments. When we are climbing a mountain, the top can look very far away -- until we look down and see how far we have come.

    I understand what you are going through. I have two handicapped children (of four birth children), took in a handicapped child from Siberia, and both my grandchildren were born with birth defects. Of these children, my spina bfida daughter (who has several other "issues" as well) was given a 50% chance to live at the time of her birth (now spina bifida is an "easy" thing, sort of -- unless you are the parent or the child), the Siberian lad was given a 0% chance of living past a few months as was my younger son (CHARGE syndrome, which was not even known until he was 12 -- we believe he may have been the first in the USA to survive -- plus 11 other smaller defects and one other serious one which required a tracheotomy for nearly two years), and now a granddaughter fighting to survive OEIS Complex (another rare defect -- it happens once in 440,000 births and only one doctor at Stanford University Hospital where she is being treated has ever seen it; he refuses to discuss the "odds" of survival but fortunately for my son and wife is an irrepressible optimist).

    Perhaps it will help you to know that, except for the granddaughter, these children for whom there was little or no hope are now in their 30s -- happy, productive, and all that good stuff.

    I know the road is rocky. I have been down it. I also know that the road, i.e. the journey, is what it is all about, or to return to the mountain metaphor, the climb is usually more important and more memorable than the summit. Hang in there! God has a way of using these experiences to the good of a greater number of people. I am sure that Lauren has already been a blessing to many people in many ways.

    If you get a chance and have not done so, read Dale Evans Rogers' book, Angel Unaware. It is very touching and especially meaningful to parents of children facing obstacles to a healthy and normal life.

    I will ask my prayer group to pray for Lauren, and I will pray for her, too -- and for her family.


  13. Today, July 28, 2009, the waiting is over! I praise God that Lauren has a new heart! What a blessing this little girl has been and will be to so many. God, I pray for this whole family as they continue on this journey through much transition... give them strength... Your grace... Your mercies... We know that GIGATTAATTGIG!!!!!!!

  14. Laurel (aka Free Food)July 28, 2009 at 6:38 AM

    Cristi, I'm just re-reading this in light of what's happening now and praising God for all the ways He's been working in His perfect timing. Lauren has such a resilient spirit I know she'll bounce back after the transplant and take off at full speed - probably while juggling pagers or something ;-)



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