Seven Tips for Interacting with Special Needs Kids (and Their Families)

Being the parents of a child with special needs has been one of the greatest privileges of our lives. Our special needs girl (who has spina bifida) is full of spunk and joy. We know God has created her with a purpose and it's been fun to see her already being used to minister to the people she encounters.

It's also given us a lot of stories, mostly considered humorous by us, related to how people have responded to Butterfly who, unlike some special needs kids, can't often hide her disability, whether it's because she is using a walker, canes or a wheelchair, or crawling on all fours. In sharing some of these moments, I thought it might be fun to frame these stories as a guide for people who'd like some insight on how to interact with a person who is differently abled (or their parents).

If you are going to offer medical advice, do know what you are talking about or soften your "advice" by asking questions to see if you are on the right track.
I was once sent a long e-mail by a well-meaning friend who was eager to inform still-pregnant-with-Butterfly me that all that I needed to do to "fix" Butterfly was to take her to a good chiropractor after she was born. I don't think this person had any idea at all about what spina bifida is. Another acquaintance, also by e-mail, promised that Butterfly's life would be turned around, if I would only purchase the high-priced magic juice she was selling. Even better I could become a distributor under her. I probably don't need to explain how we felt about this.

Pray with understanding.
Prayer is always good and please pray for us, but please don't make our child feel like she is sick, because, praise God, she isn't. Once when Butterfly was a toddler, we were stopped in a McDonalds by a concerned family asking if they could pray for Butterfly. We agreed and they prayed sincerely that God would "heal her" and we were grateful, yet it felt odd because we know Butterfly isn't sick. Now that she is older, people have offered to pray for her healing or pray for her to "get better" and privately she says to us, mildly irritated, "What were they talking about? I'm not sick." I just want to be careful with my girl's heart and her trust in God. What if He chooses not to heal her in this life; chooses to be glorified in her life as she lives abundantly for him WITH spina bifida? Privately, I have prayed thousands of times for her to be restored, to be "healed." I know that hundreds of God's children have prayed the same. At the same time, our faith will not be shaken by God's answer. A good rule of thumb here is to just ask the person or parents, "Is there any way I can pray for you and your family?"

No pity needed or wanted.
We have been overwhelmed by the kindness of people: babysitting, hand-me-down clothes, meals after hospital stays and on and on. So many people have sensed our need or just wished to minister to us and we have been truly blessed. I've even had a few friends cry with me over our sorrows. All of that is compassion. But please don't pity us. Please don't look at my child with sad eyes, shake your head and say for all to hear, including her, "Poor baby." You must not know her. She loves life, makes friends wherever she goes and has even recently said "It's more fun not being able to walk." Perhaps she's right. How can we, who haven't lived her life, argue? Once a man stopped the kids and me in the library and regaled me with how sorry he was for Butterfly and insisted that I take $3 to buy my kids ice cream cones. He intentions were very sweet, but I was glad Butterfly was too young to realize that she'd just been given a hand-out, out of pity.

Don't limit them.
We love to hear about adults with spina bifida who have achieved great things. But please don't tell us stories about how you know someone with spina bifida who was able to live in a group home or get a job as a Walmart greeter, as if we are to take comfort in that. Granted, there is nothing wrong with living in a group home or working at Walmart in any capacity, but to suggest that our daughter doesn't have the full gamut of choices for where she lives and the kind of work she will do really does hurt.

Ask questions.
We love most questions. Questions like, "Do you mind my asking why you (your daughter) uses a wheelchair?" are awesome. However, "What's wrong with you (her)?" not so much. We get that one a lot. And for the record, nothing is wrong with her. She is the way God created her. We've heard of a few plucky kids with SB who have answered that one themselves with, "Nothing's wrong with me, what's wrong with you?" I kind of love that, but I'm still glad Butterfly hasn't responded to anyone that way... yet.

Speak, don't stare.
We love meeting new people, so if you or your kids have questions, just talk to us. Butterfly can't stand to be stared at, but lots of people, kids especially, stare at her... for a LONG time. We are encouraging Butterfly to flash big friendly smiles at kids who stare at her and, when it is appropriate, to go up to them and break the ice. She's had some awesome experiences doing just that; even so, sometimes she just wishes the staring would stop. If you notice your child staring, perhaps you could bring him or her over to meet Butterfly. We realize they're just curious and they'll probably really like Butterfly, and maybe us too. Most kids do.

After reflecting on this particular tip, I want to add that a far worse fate for Butterfly would be to have people vigorously working to AVOID looking at her. I think that sometimes happens as special needs kids become special needs adults. It is ALWAYS lovely to meet someone's eyes (any one's eyes, regardless of their abilities) and smile, perhaps say hello, even if they can't or won't respond in kind, and then go on about your business.

Don't sweat it.
Most importantly, just be yourselves. Few of the stories I've shared have caused us any more than a moment of discomfort.  Ultimately, if worrying about doing or saying the right (or wrong) thing will keep you from getting to know us and deprive us of getting to know you, don't sweat it. Just jump in there and say and do what comes naturally. We think we'll like you too! We usually do!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

I want to do it AGAIN! (overcoming at Great Wolf Lodge)

I love water parks, always have. I remember when they were building the first true water park in Cincinnati. I was 15 and, through a family connection, I got a job selling season passes for the not-yet-opened The Beach water park. In the middle of a typically cold Midwest winter, as Christmas shoppers bustled about in the mall, I and my coworkers wore shorts and t-shirts while tossing around beach balls to draw shoppers to consider choosing water park season passes as Christmas presents.

I admit that those really, really tall slides that boast what seem to be nearly vertical drops never have even been tried by me. I prefer my water park thrills to have twists and turns and bounces and bumps, rather than hurtling my body toward frighteningly small pools of water.

So it was with high hopes that we registered for homeschool days at Great Wolf Lodge, an indoor water park in Williamsburg, VA, the first week of December 2010. Our oldest enjoyed every feature of the park. Our middle daughter was pleased to run around with her friends with some level of freedom, but was reticent to try anything more than the medium slides. The youngest at seven, Butterfly, wore her leg braces and bear crawled her way around the park, making a circuit from the wave pool to the baby pool with baby slides to the hot tub and back, under the vigilant watch of one or both parents.

While we considered that first visit to Great Wolf Lodge a success, it amounted to a droplet of fun compared to the great splashes of delight that were in store for us this December! We arrived on Wednesday and were exceptionally pleased with our suite with living room, kitchenette, two separate bedrooms and two full baths. We wasted no time getting ready for the water park.

Immediately, Lizard, at 11, and with a heightened spirit of adventure, began testing her new-found bravery, joining her older brother on the biggest slides. And she loved them!

In turn, Butterfly, now eight, decided she was ready to try the medium slides. These can be found at nearly every water park. They extend from a large playground-like structure, featuring sprayers and buckets of water to dump on unsuspecting passers-by at every bend in the zig-zagging steps.

Feeling protective, Steady Man and I both escorted Butterfly through the maze of steps and rope bridges to the beginning of the first slide. I explained to the lifeguard on duty that while Butterfly can't walk (perhaps obvious to him by the way she had ascended the structure on all fours), she can sit up well. The young man considered for a moment and said, "Put her on!" For a flash, I was annoyed that this youngster, with so little life experience, was so ready to see my daughter go flying down that deadly slide, forgetting that we were the ones pleading with him for her to be allowed that very pleasure.

Having checked myself, I listened as the young man proposed a plan: I was to go down first, in order to be there to catch Butterfly at the end of the slide. Steady Man would go last, so that he could assist her onto the slide. Great! Here I go! Whoa! This is fast! This is twisty! I suddenly had visions of Butterfly being slammed this way and that, unable to hold herself up while water splashed in her face making her feel as if she would drown. Wait! Stop! Don't send her! My mind screamed. If only I had a cell phone, I could call Steady Man and tell him it's too dangerous, but cell phones and bathing suits on water slides just don't mix. My only recourse was prayer. I leaped off the slide and began praying for Butterfly's safety. Praying that she would be able to hold herself up. Praying that she would have fun.

It seemed like an eternity before I finally saw her coming around the last bend in the slide. Was that astonished look on her face from fear or was she merely anticipating hitting the small splash pool at the end of the slide? I couldn't tell. Then wham, she exploded into the pool of water in front of me. I scooped her up in my arms, looked into her eyes and asked what I was desperate to know, "Did you like it?" Her elated reply: "I LOVED it! It was so much fun! I want to do it AGAIN!" My heart cried, "Thank you Jesus!"

We lost count how many times Butterfly went down the two medium slides, lovingly referred to as "the green one" and "the orange one" that first day at the park. Steady Man and I also took turns going down "the big slides" with Historian and Lizard.

The next day, our only full day at Great Wolf Lodge, Butterfly decided she wanted to try the three big slides for which she met the height requirement. These are the kind of slides that require you to ascend stairs to the roof of the building in order to ride them. The first task was to find a way that Butterfly could sit on the tandem inner tube with Steady Man. Compared to Butterfly's tiny frame, that hole was enormous. That coupled with Butterfly's diminished ability, due to low muscle tone, to keep her frame from folding in half, made Butterfly at risk for disappearing through the hole in the inner tube.

The solution was for Butterfly to sit not so much in "the hole" of the inner tube, but rather on the tube portion that was between the front rider's seat and the back rider's seat. Sitting there, with Steady Man's legs supporting her seemed to work, although I couldn't help feeling the whole plan was a bit reckless. At the same time, we have never wanted to tell Butterfly that she can't do things because she has spina bifida. If she wanted to do it, we were ready to take the responsibility for any mishap.

Steady Man climbed the stairs to talk with the lifeguard-on-duty. He was referred to the lifeguard supervisor and, after discussing Butterfly's situation, she approved Butterfly to ride all slides for which she was tall enough. The only caveat, of course, was that we had to get her to the top of all those steps.

I can take credit for carrying Butterfly up all those steps perhaps three times. A couple of guy friends also took turns carrying her up those numerous flights. And Butterfly climbed many many stairs on all fours on her own. But Steady Man... what a dad! Between the medium and tall slides, he must have carried his sweet 45-pound angel up more than 100 flights of stairs. He was hurting, but he wouldn't let it stop his daughter from fully participating in the pleasures of the day. I was in awe of him.

And she loved those slides too! We all did!

These joys, combined with spending important time with special friends, made this trip to Great Wolf Lodge, a highlight of 2011 for the Smith Family.

I can do all things through Him who gives me strength. Philippians 4:13

Butterfly the Equestrienne

When you have a child who struggles to accomplish (or who will never accomplish) the things for which all good parents await and celebrate: first words, first solid food, first steps, potty training, learning to read, learning to tie her shoes, learning to share and so on, there is an understandable heartache that you carry. However, there is also a special indescribable JOY, a thankful elation, when you witness that child doing above and beyond what you hoped or dreamed they could accomplish. That joy revisited us this past weekend in Lexington, Virginia, as we watched our daughter, Butterfly, who has spina bifida, compete in the Therapeutic Horseback Riding Association of Virginia event.

Butterfly's equestrian gear included paddock boots, jodhpurs, garter straps, show shirt, show collar with pin, show coat, hair net, and riding helmet with faux-velvet cover.

Butterfly's riding center did everything possible to make their riders feel celebrated. Butterfly's photo hung on one of the horse stalls at the event.

 Butterfly was a great sport posing for photos in her riding regalia.

We were blessed to have many out-of-town family members join us for the event including Butterfly's cousin. I regret not getting a photo of the entire family.

More decorations outside our horses' stalls.

Butterfly has mounted Rebel and is ready for her first competition.

Notice that Rebel has his mane braided. His tail is braided too.

Butterfly waits to begin the equitation round.

 We reminded Butterfly to keep focused and not get distracted by her cheering section. An equestrian should always look in the direction she wants her horse to go. In this case Butterfly is asking Rebel to track left (and she is completely ignoring her cheering section). What focus!

Butterfly received a blue ribbon (first place) for equitation. I wish you could have experienced the bubbling-up, tears-spilling-over joy we felt as we watched Butterfly ride. The ribbon was just icing on the cake for incredibly thankful and proud parents.

Butterfly and Rebel after their blue ribbon event. Rebel did a wonderful job too!

Butterfly also competed in pole bending, trails and dressage. 

She received red ribbons (second place) for pole bending and dressage and a yellow (third place) for trail.

Butterfly's total points earned her the title of "Reserve Champion" (second place overall) in her class. Check out that giant ribbon!

Butterfly made a new friend, T, who also competed for Galloping Acres. T received Champion (first place overall) in her and Butterfly's class. Way to go!

On the left are some of the riders and helpers from Galloping Acres. On the right is Shannon Lawson, director of the therapeutic riding program at Galloping Acres. We are so thankful to have them in our lives!

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40: 28-31

Reaching for Life from the Womb: Part Two

The following e-mails chronicle the time between Hannah's in-utero surgical repair of spina bifida until the day before her birth.

Subject: RE: Hannah at 26 weeks
Date: Wed, 27 Nov 2002 14:13:31 -0600

Hi loved ones!
Today's ultrasound found Hannah active and cooperative
for imaging. Her ventricles remain perfectly normal (no
hydrocephalus to date). Praise God! And keep praying!
The doctor indicated that he was already seeing slight
improvement in her hindbrain herniation but didn't
expect to see significant change for about four more
weeks. Thank you for your continued prayers!

Love, Amy

Subject: Hannah at 27 Weeks' Gestation

Sent: Friday, December 06, 2002 6:46 PM
Hello Prayer Warriors!
Our doctor's visit went very well today. Hannah's
ventricles remain normal (no hydrocephalus) and they
are definitely noting some reversal in the hindbrain
herniation, but anticipate continued improvement over
the next few weeks. They looked at amniotic fluid
which was normal and checked her legs for clubbing
and, so far, they are fine. The sonographer also noted
that Hannah's head size is more normal for her
gestational age now. She explained that Hannah's head
had been a bit small for her gestational age a month
ago (something of which we had not been aware). She
suggested that the movement of the brain to a more
normal position (not so compressed into the spinal
column) has allowed her head size to catch up somewhat
to the "norm."

We also toured the NICU and saw a 5-day-old baby born
at 24 weeks' gestation... a miracle child. So tiny and
yet still so perfectly created by the Creator... The
doctor said she was already breathing on her own and
was doing very well.

Pray for our five-day-old friend if you please. And
whatever you've been praying for Hannah, please
continue because our Lord is listening and so
gracious! Obviously, we pray that all of Hannah's good
news will continue and we pray that God will prepare
us for whatever the future may bring.

"You made all the delicate, inner parts of my body and
knit me together in my mother's womb. Thank you for
making me so wonderfully complex! Your workmanship is
marvelous--and how well I know it. You watched me as I
was being formed in utter seclusion, as I was woven
together in the dark of the womb. You saw me before I
was born. Every day of my life was recorded in your
book. Every moment was laid out before a single day
had passed." Psalm 139:13-16

Love,
Brian, Amy, Evan, Elena and Hannah

Subject: Hannah at 28 weeks' gestation
Sent: Saturday, December 14, 2002 1:50 PM
Greetings!
God blessed us with another encouraging doctor's
appointment on Friday! Hannah's ventricles, although
slightly larger than last week, remain in the normal
range which means she has not developed hydrocephalus
to date! Her brain continues progressing to a more
normal position. The doctor was particularly pleased
to see cerebral fluid now flowing at the back of her
skull which is a great indicator of improved brain
position!

When looking at her feet, Dr. Thomas informed us that
he was pretty sure that one of Hannah's feet was
clubbed, but while we were asking him questions about
this, Hannah turned her foot and Dr. Thomas said, "Oh,
see there, now she's showing us it's not clubbed." Dr.
Thomas still believes, however, that both of Hannah's
feet are hyper-extended. This would mean that the
muscles in her legs that are receiving more nerve
stimulation (those muscles that receive nerve stimulus
from higher on the spine) are overcompensating for the
less stimulated muscles and are pulling her feet into
a flexed position. Of course, the doctor can't be sure
given that Hannah already has proven to be a jokester
with her clubbed foot trick. If her feet are
hyper-extended (the doctor actually said he would have
expected her legs to be in a more severe condition
than hyperextension given her lesion level and
gestational age), the condition can be corrected after
she's born by spending a few weeks in short leg casts.

The doctor was also able to put us at ease about some
of the abdominal pain I've been experiencing. It turns
out that after three babies, the ligaments holding up
the uterus are just protesting, "not again!"

The most shocking thing that happened this week
regarded our appeal process to our insurance company,
Blue Cross/Blue Shield. Some of you might remember we
were told that our case would be reviewed by Alcoa
this week. That was misinformation. We still had to
wait for an "independent" doctor hired by BC/BS to
make a recommendation (next we appeal to Alcoa). We
received the denial letter from that doctor's review
earlier in the week. We weren't surprised at all.
Their reasoning is because in-utero correction of
spina bifida is too new and is considered
"investigational." Furthermore, they noted that we had
two other options for "treating" Hannah. This is the
part that shocked us. Here is part of the letter (the
grammatical errors are theirs and not ours):

"This is a review of a pregnant woman and at 21 weeks
gestation sonogram indicated a fetus with spina bifida
and hydrocephalus. The plan of treatment recommended
is intrauterine surgery with spina bifida repair. The
request was refused on grounds that such surgery is
regarded as investigational. Pregnancy with this
problem are usually treated in one of two ways: The
parents may choose pregnancy to terminate prior to 24
weeks, or the baby be delivered by cesarean section
when mature and then undergo closure of the spina
bifida defect..."

It is heartbreaking to us that our country has become
so callous about human life that it is acceptable at a
business level to suggest (after the fact even) that
we as parents would have made a better decision by
killing our differently-abled daughter. So with that,
permit us to remind you of the Bible verse we chose
for our last e-mail. We like to read it with Hannah's
name as the voice speaking. You can use your
children's names or you own and you will be blessed by
it.

"You made all the delicate, inner parts of my body and
knit me together in my mother's womb. Thank you for
making me so wonderfully complex! Your workmanship is
marvelous--and how well I know it. You watched me as I
was being formed in utter seclusion, as I was woven
together in the dark of the womb. You saw me before I
was born. Every day of my life was recorded in your
book. Every moment was laid out before a single day
had passed." Psalm 139:13-16

Thank you for your continued prayers!! We are forever
thankful for you all!

Love, Amy and Brian

Subject: Wiggling Toes at 29 Weeks' Gestation
Sent: Saturday, December 21, 2002 10:10 PM
Praise God for another good doctor's visit!
Hannah's ventricles were unchanged since last week.
They are at the upper end, but still within, normal
range. Continue to pray that God will defy the
statistics and the doctors' predictions and spare
Hannah from hydrocephalus and shunting.

Her brain position continues to improve. I asked the
sonographer how close to normal it was and she
replied, "pretty close." Pray with us that it will
reverse to completely normal. Also, her head size is
now normal for her gestational age. We had not
realized that her head was misshapen until they told
us yesterday that it was now normal. The better shape
would be explained by the improved brain position as
well as good fluid movement.

The most exciting thing we saw was Hannah's toes
wiggling! She wiggled the toes of one foot on five
separate occasions in the short time we watched. While
the doctor would not go so far to say that this means
Hannah will have use of her legs or even just her
toes, we and he found this, to quote Dr. Douhl, "very
encouraging." I had specifically prayed before our
appointment for some gesture of encouragement because
I had had some discouraging days recently. God was
gracious and blessed us with wiggling toes!

Her feet still seem to be hyper-extended, but we are
still praying that if it pleases God, He will reverse
the condition.

My mom is driving back to Cincinnati today for another
time of respite and visiting at home. Aunt Ruby and
Uncle Mike are here with us this weekend and Brian's
mom and brother, Justin, will celebrate Christmas with
us. Jill Wells has been such a gift from the Lord to
me in all the years I've had the privilege of calling
her "friend." She has agreed to play "nanny" for us
the third week of January when my mom will be
vacationing in Florida. Besides Jill's presence, two
incredible things are scheduled to take place Friday,
January 24, of that week: Brian will turn 34 and
Hannah will turn 34 weeks! While Brian turning 34
years is wonderful, 34 weeks for Hannah would be
phenomenal! Doctors say most babies born at or after
34 weeks have little complications and are even likely
to go home at the same time their mothers are
discharged. So please keep this date in mind as you
pray for Hannah's continued growth right where she is!

We are so joyful to be celebrating Christ's birth. God
came as a baby, as prophesied in Isaiah, to be tempted
and live a blameless life, to take the punishment to
death the cross for our sins, so that we might be
declared innocent before God. When life becomes
overwhelming, we are always able to rejoice in this
knowledge.

Have a fabulous Christmas and a wonderful New Year!
Thank you once again for keeping us in your prayers!

Love,
Amy, Brian, Evan, Elena and Hannah

Subject: Hannah at 30 Weeks' Gestation
Sent: Thursday, December 26, 2002 4:23 PM
Today's doctor's visit brought more encouraging news.
Hannah's ventricles actually measured slightly smaller
than last week, so we are thrilled that the
several-week trend of increasing ventricle size has
stopped and perhaps even reversed. Thank you for your
prayers. The sonographer said Hannah's cerebellum is
"almost perfectly normal" with good fluid flow at the
back of the brain which is fantastic. The two doctors
in the office were smiling and used words like "great
news," and "magic" (but we all know better than that
don't we?}

We would love to hear how you celebrated Christmas. We
had a wonderful time with Nanny Smith and Justin. I
(Amy) was able to attend church for the first time
last Sunday. Laney still loves to play dress-up and
wants to be a “wirewider” (firefighter) when she grows
up. Evan has finally accepted preschool as a fact of
life and is as crazy about trains as he ever was.
Brian is glad to be on vacation until the New Year (as
are we) and couldn't be more thrilled to have gotten
THREE golf clubs for Christmas.

Have a blessed New Year and continue to hold us in
your prayers and we will also keep you in ours.

Love, Amy and Brian

Subject: Hannah at 31 Weeks Gestation
Sent: Saturday, January 04, 2003 12:15 PM
Hello All!
We do not take for granted that we will receive good
news about Hannah's condition each week. So it is with
as much joy and thanksgiving as we felt with our first
bit of good news about Hannah that we report on the
good news we received yesterday.

Hannah's ventricles remain normal (7.9 and 7.2 mm for
those of you who understand that) which means no
hydrocephalus has developed to date. As her skull bone
calcifies, it is getting harder for the sonogram to
get a good look at her cerebellum, but all continue to
be pleased with the much more normal position of it.
We watched Hannah kick her right foot (which again,
isn't a guarantee of a good nerve connection). We also
saw her flex her hips several times which we all felt
strongly was of her own will and not simply a reflex
from upper body movement. Praise God! We thank you for
your continued prayers for Hannah's healing!

I received an adjustment on my anti-contraction
medicine this week after some mild pre-labor symptoms
on Wednesday. The medicine did its job well and we
continue to pray for many more weeks of pregnancy.

We had our first conversation about a potential
delivery date. Dr. Celebrezze would like to do an
amniocentesis at 36 weeks' gestation to check Hannah's
lung maturity. If the lungs are doing well, she'd like
to do a c-section the following day. That would put us
somewhere around February 11. Please pray for wisdom
and God's grace regarding delivery.

We have been notified that the Alcoa Benefits
Committee will review and decide on our appeal for
insurance coverage on either Friday, January 10, or
Friday, February 14. A doctor selected by Alcoa has
been contracted to make a recommendation to the
committee on our case. Our appeal papers are currently
with him/her and the date of the Alcoa review is
dependent on the return of those papers accompanied by
the physician's recommendation.

We discovered that our home health care (monitoring
and anti-contraction medicine service) was also denied
by Blue Cross/Blue Shield. We were told that this part
of the fetal surgery process is almost never denied
because once the surgery is done, even the insurance
agencies that denied the surgery itself want to see
the baby go as close to full term as possible. So ours
stands out as one of the few to deny even this. The
cost for the service is $480/day! This would amount to
around $50,000! Praise God that Dr. Bruner from
Vanderbilt has an agreement with Matria that they will
provide services gratis to his "financial hardship"
patients in exchange for his referring all of his
fetal surgery patients (most of whom do get insurance
coverage) to them for home health care. AMAZING!

We've been blessed to have Brian's mom, Steph, and
brother, Justin, with us over New Year's. Not only did
they provide wonderful meals and entertainment, they
also cleaned my house from top to bottom, which it
sorely needed.

I simply am not capable of writing brief e-mails, as I
previously promised, when it comes to our amazing
journey with Hannah. I hope they do not become tedious
in any way to you. THANK YOU again for your love,
support and prayers. We pray each day that God will
return to you the blessings you've given us many-fold!

Love, Amy and Brian

Subject: Hannah at 32 Weeks' Gestation

Sent: Monday, January 13, 2003 3:46 AM

This week's doctor's appointment was more routine than
usual. But even just the doctors' taking for granted
that Hannah will not have developed hydrocephalus,
that her brain continues to look good and that there
is no worsening of what appears to be hyperextension
of the feet, is truly a blessing. What a contrast to
visits where the expectation is to relay increasingly
discouraging news! One of the verses I read and
reread during my personal Bible study this week has
special meaning for us, "God has not given us a spirit
of fear, but a spirit of power..." II Timothy 1:7. We
pray that even when life bring us (any of us)
discouraging news that this truth will resonate with
us just as profoundly.

Many of you will remember January 10 as a possible
date for Alcoa's review of our appeal of insurance
denial. Unfortunately, we have received no
communication about our case since the notification of
the possible dates. We assume that our case was not
reviewed, solely on the expectation that we would have
been notified if it was to happen. So perhaps February
14 will be the date of review. Regardless, God is in
control and has good reason for even the timing
(delayed or otherwise) of the appeal!

I have a friend, Janet, here in Pittsburgh who is the
hospital now anticipating delivering her baby boy at
35 weeks' gestation (this Tuesday)if amniocentesis
reveals mature lungs. Please pray for her and her
little boy's health and vitality. She would love to
bring him home with her when she is discharged, but
is, of course, first concerned with his well-being. We
appreciate your prayers for their family.

Thank you for remembering Hannah in your prayers! We
are forever grateful!

Amy and Brian

Subject: Hannah at 33 Weeks
Sent: Saturday, January 18, 2003 9:42 AM
Dear friends and family,

 This week's doctor's appointment was another
encouragement to us in many ways. Hannah's ventricles
measured the smallest we've seen them since we were at
Vanderbilt. We are so hopeful that the Lord would be
pleased to spare her from hydrocephalus. Also, from
everything they looked at, there was no indication
that I would go into labor anytime in the near future,
but we realize that there isn't usually much warning.
We do have a specific prayer request this week: Of the
many ultasounds we've had done, Brian and I can't
recall ever seeing Hannah's legs move at the knees or
even at the hips. You surely understand our hopes
regarding her being able to walk some day. May God be
glorified in all of her accomplishments!

Thank you for your continued prayers! It's hard to
believe that within a few short weeks, we'll be
holding our Hannah in our arms! God is so good!

Amy and Brian

Subject: Hannah at 34 weeks' gestation! Awesome!
Sent: Friday, January 24, 2003 10:17 PM
Hello Dear Ones!
Things are certainly happening these days in Hannah's
world. We had an eventful and somewhat nerve-racking
couple days, starting Wednesday, with too many
contractions, lots of remonitoring, bed rest, and
extra doses of medication. We are hoping that a
permanent medication rate adjustment did the trick and
will keep Hannah happy where she is for a couple more
weeks.

At our doctor's appointment, we received a wonderful
gift! You will remember that last week we asked for
your prayers about Hannah's leg movement. At this (our
very next) appointment we saw both legs move from the
knee! While this is no guarantee of leg function from
the knee, we are thrilled. What a birthday gift for
Brian! And THANK YOU MORE THAN WE CAN SAY FOR YOUR
PRAYERS! God was pleased to show all of us that he
cares and listens to our earnest prayers!

Hannah's ventricles remain normal. We cannot express
what joy it would be to see this be a permanent gift
to Hannah. Unfortunately, Hannah will be considered at
risk for developing hydrocephalus anytime in her first
year of life, so we will covet your continued prayers
about this whenever you remember our family.

Finally, the sonographer noted a significant decrease
in amniotic fluid (putting it at the low end instead
of the high end of normal). What this exactly means I
can't easily explain or even understand. It has to do
with placenta function, as well as Hannah's ability to
practice breathing. If the fluid level continues to
drop, they will want to go ahead and deliver as Hannah
would fare better out of the womb in that case. From
now on, we will be going to the doctor two times a
week (Tues. and Fri.) to monitor amniotic fluid,
contractions and continue with ultrasounds.

Several have asked for an update on my friend Janet.
She delivered a 6 pound 7 ounce boy with strong lungs!
Thank you for your prayers.

As far as our insurance appeal, it will take place
February 14.

God is so gracious to this undeserving Smith family!
THANK YOU AGAIN FOR YOUR PRAYERS! We hope that you are
sharing our refreshed awe at God's mercy and love.

Love, Amy and Brian

 

Subject: Hannah at 35 weeks' gestation
Sent: Saturday, February 01, 2003 9:48 AM

Dear family and friends,
God is delighted with your prayers! You'll remember
that two weeks ago, we asked for prayer for Hannah's
legs and at the next appointment, we saw them move for
the first time on the ultrasound. Last week, we
asked for prayer about low amniotic fluid that could
force us to deliver earlier than expected. Five days
after our request to you, the amniotic fluid nearly
doubled to the amazement of all! Thank you!

Hannah's ventricles measured yet again smaller than
ever before this week (6.8 mm) and we continue to hope
and pray that she will never need to be shunted for
hydrocephalus.

Since we last wrote, I've needed to have my medication
adjusted again, but all seems to be quiet now. We are
still planning to have an amniocentesis on February
11. If Hannah's lungs are mature, we will have a
c-section on February 12 (36 weeks and 4 days'
gestation). The reason the doctors want to deliver
early is that there is a risk that my uterus will
rupture at the 13-week-old scar if I go into labor
which could be life-threatening to both Hannah and me.
If Hannah's lungs are not mature by that date, we will
wait one more week and repeat the procedure. Please
pray for a safe delivery at God's perfectly appointed
time and wisdom for us as we are bombarded with
information and questions from the medical team at
Allegheny General.

In eager anticipation of introducing Hannah to you and
of hearing of your life as well,

Amy and Brian

Subject: Hannah at 36 Weeks' Gestation

Date: Fri, 7 Feb 2003 18:07:01 -0800 (PST)
Hello all!
We are thrilled to know that our little girl has
reached 36 weeks' gestation. There were times that we
thought we might go earlier, but God was time and
again merciful, knowing, we suppose, that her parents
were not ready! Hannah's weight today was estimated to
be 5 pounds 3 ounces, give or take 12 ounces. We are
still scheduled to have an amniocentesis on Tuesday to
check for lung maturity. If her lungs are mature,
Hannah will be delivered by c-section the following
morning (February 12). We ask for continued prayer
regarding the right time for Hannah's birth. Also,
once she is here, we will be inundated with doctors
(neurologist, urologist, orthopedist and so forth),
information and potentially requests for permission to
perform various procedures. Please pray that God will
grant us wisdom during this time, as well as the
ability to separate ourselves from all the medical
stuff and relish in our daughter!

Thank you again for your many prayers for Hannah. How
pleased our Lord has been to show himself to us in
response through his many miraculous gifts to Hannah.
We are forever grateful to you!

We pray for God's blessings to you!
Amy and Brian

Subject: Re: Hannah Lee to be In Our Arms February 12!
Date: Tue, 11 Feb 2003 09:42:29 -0800 (PST)

Hello everyone!
At our doctor's appointment this morning, it was
agreed that tomorrow would be the best time for
delivering Hannah. We had been praying that the
decision regarding a delivery date would be taken out
of our hands and, in God's faithfulness, it was. My
amniotic fluid has decreased again (although still
within the acceptable range) and the placenta is
showing signs of age. Our doctor said that with these
two factors even in a "normal" pregnancy at 36+ weeks
gestation, they would opt to deliver. As a result, we
didn't even have the amniocentesis to check for lung
maturity.

We will be admitted at 5:30 a.m. and are scheduled for
delivery at 7:30 a.m. Please join us in praying for a
safe delivery, for Hannah's lung maturity, the general
health of her brain, spine and bladder, as well as leg
function. Brian will try to send an e-mail some time
tomorrow with the happy news of Hannah's birth.

Thank you again for your faithful prayers!

Love, Amy and Brian

Reaching for Life from the Womb

Our Fetal Surgery for Spina Bifida Story
(A Chronicle Told Via E-Mails)

For nearly nine years, I have been saving the e-mails we sent our loved ones when we found out our unborn-at-the-time daughter had spina bifida. I have been meaning to do something with them, in order to preserve the story and memories better. This blog, seems a better place for them than the "dusty" virtual file folder in which they've languished all this time. I have already posted the first e-mail, "The Beginning of Our Spina Bifida Story." The remaining e-mails, which take us through Butterfly's birth, I plan to post in two parts. Below you will find the e-mails leading up to our decision to pursue "fetal surgery for spina bifida" for Butterfly, as well as the immediate outcome of that surgery.

October 31, 2002
Hello dear friends and family,

We can't thank you enough for your kind e-mails, cards
and phone calls. They have encouraged us more than you
will ever know! And to everyone, thank you, thank you
for your prayers, they are sustaining us! God remains
and will always be faithful.

We are excited to share with you our baby girl's name:
H...... Smith. We are in love with her already and
are pleased to be able to talk to her and pray for her
by name.

As we noted in our previous e-mail, we will be leaving
for Vanderbilt Medical Center in Nashville November 7
and begin meeting with the medical team November 8.
November 8 will probably play a BIG role in our
decision-making since we will have the best idea yet
of Hannah's lesion level and what benefit the surgery
would potentially have. We would covet your prayers
this day. If we feel God leading us to have the
surgery, it will take place Wednesday, November 13. We
will e-mail you before this date and ask for your
prayers if this is to happen. Today, our health
insurance denied our initial request to pay for the
surgery, so tomorrow our request will be presented by
the lead doctor at Vanderbilt to a doctor on staff at
the insurance company. Again, we ask for your prayers.
Remember also to pray for my mom, B's mom and my
Aunt Ruby who will be taking care of the kids while
we're away. We have been so blessed by their devotion
to our children!

E and L had a fantastic time trick or treating
today as a train engineer and Madeline. They are
surely on a sugar high as we type this. ;)

Have a fabulous weekend and we love you all!

B and Amy

Sent: Friday, November 08, 2002 3:49 PM
Subject: Friday at Vanderbilt
Dear friends and family,
Well, we didn't receive the news for which we hoped.
Our neurosurgeon in Pittsburgh said that the defect
level could be at L4, rather than L2. Today, the
doctors at Vanderbilt concurred with the first
suggestion that the defect is at L2. Prognosis for L2
defects just aren't as good as those for L4.

We also had an MRI which will tell us more about
H's brain position. The ultrasound was very
positive in one aspect: she isn't showing any signs of
hydrocephalus (fluid on the brain) today. It would be
very unusual for a child with an L2 lesion to not require
shunting for hydrocephalus... so we are praying for a
miracle here!

The surgery we are investigating isn't proven to help
as much for walking and bladder control given her
defect level. We are still hopeful that the surgery
might offer benefits for H's brain development.
We will find out more Tuesday from the neurosurgeon as
to the extent of any benefits and how they measure
against the risks involved.

We haven't yet felt God's leading on what our decision
should be. We continue to pray and would ask that you
would as well... for clear direction from God on
whether or not to have the surgery and for a miracle
on H's behalf. We know that God loves little
H even more than we, and He has only the best in
store for her. In that, we have great comfort.
Thank you for everything,
Amy and B Smith

November 13, 2002, 12:25 a.m.
Hello friends and family!

After much prayer and consideration, the only place we
can find peace is to choose the surgery. So, Lord
willing, Amy and H will be having surgery at 1
p.m. central (2 p.m. eastern) Wednesday. The doctors
will cut a small incision just as for a c-section in
Amy's abdomen and another in the uterus. They will
drain the amniotic fluid, tilt H's back-side out
and do a very simple stitching up of her lesion,
reinsert the amniotic fluid, close the uterus and
Amy's abdomen. It should take about 90 minutes. Please
pray that God's hands will guide those of the doctors,
that He will keep H and Amy in His tender care
both during surgery and recovery. Lord willing, we
will be discharged from the hospital Saturday and
return to Pittsburgh Monday.

This is a photo of Samuel Armas (who, with his mom, had the same surgery Hannah and Amy had). During surgery, Samuel (at just 21 weeks' gestation) grabbed Dr. Bruner's finger. Yes, life begins at conception!

Every way we've looked at this decision, there are
serious risks, primarily prematurity if we choose
surgery (9 percent deliver before 30 weeks as opposed
to 3 percent in the "normal" population). However, the
surgery, almost without exception corrects to normal
or almost normal the hindbrain herniation that exists
with spina bifida and which H already has. Seven
percent of children die of complications due to this
herniation. For the twenty to thirty percent who live with
spina bifida-caused hindbrian herniation (Chiari Malformation II)
complications, treatments may include tracheotomies, feeding
tubes and the like to control gagging- and breathing-related
problems. Either choice we make, H's life could
be in jeopardy. And the numbers aren't very different.
What we hope she will gain, with God's working through
the surgery, is reversal of the hindbrain herniation,
avoidance of having a shunt and protection of her
exposed nerves from further damage; they would
otherwise suffer from the continued exposure to the
increasingly toxic third-trimester amniotic fluid.
This may be more than you wanted to know, but we felt
it important for you to understand all that went into
our decision. Truthfully, we are not trusting the
doctors to make a miracle. We know that our God is the
one who will be the master of our miracles. Please
pray that He will be pleased to bless H with many
miracles in both her physical and spiritual life.

Thank for your continued prayers for us. We will try
to update you after surgery. "The peace of God which
transcends all understanding, will guard your minds
and hearts in Christ Jesus." Philippians 4:7

Love, B and Amy

P.S. For those of you who understand the significance
of lesion level, the neurosurgeon we saw today thought
H's lesion level is an L3 instead of an L2.

Sent: Wednesday, November 13, 2002, 9:27 PM
Subject: Surgery Goes Well !!
Sorry everyone, I have been remiss in sharing the good
news with you: the surgery went well. Amy is feeling
fine. She has been rather sleepy, but has perked up
the couple of hours.

The neurosurgeon came to speak with me briefly after
his work with H was complete. He said that all
went well. H was missing some tissue, but he was
able to use some material used for skin grafts to
help. This is not uncommon and nothing to worry about.
Amy came back to the room with much fanfare and many
doctors in tow. A surgeon was visiting from Barcelona,
Spain and stated that it was "amazing." We prayed with
most of the doctors before the surgery and were happy
to see them come back.

Amy is on an IV, epidural, and oxygen. Most of the
drugs are designed to keep the uterus from
contracting, as the big red bag was very irritated to
be worked on before its time. :)

We are very excited at one unexpected benefit. A young
lady (7) in Nashville came to trust in Jesus as her
Savior yesterday. Her mother, a new friend, was
praying with her for the Lord's favor on our surgery.
After a year of discussion about salvation, her mom
said her interest in salvation seemed bolstered by the
conversation about our surgery. Glory to God!
Love to all,
B (for Amy) Smith

P.S. Uncle Mike read this verse before the surgery:
"In the same way, the Spirit helps us in our weakness.
We do not know what we ought to pray for, but the
Spirit himself intercedes fro us with groans that
words cannot express. And He who searches our hearts
knows the mind of the Spirit, because the Spirit
intercedes for the saints in accordance with God's
will." Romans 8:26, 27.

Sent: Friday, November 15, 2002 10:21 PM
Subject: Friday at the hospital
We both got more sleep last night. Amy felt much
better this morning. She is able to walk short
distances (inside the room) and doesn't feel much
pain. Amy was put on a regular diet.

Contractions are our main focus now, which require
medication to suppress. She has a pager-sized pump
that controls dosage to a catheter in her leg. The
spot on her leg must change every five days. There is
also a monitor (for contractions) which stores data to
be transferred via phone line to the home health care
provider. Pretty high tech.

About the time we were being instructed on the
intricacies of the contraction monitor, Amy became
sick. Hospital food! Since then she has slept all
afternoon and most of the evening. Nausea is very
common after the surgery, but we thought she may have
been spared. We pray that the rest of her recovery
will be more pleasant.

Amy is a wonderful mother. By all accounts, H is
doing well. Her heartbeat is checked often. I show
pictures of her (before and after shots) to all the
nurses in the maternity ward, and they are amazed. The
neurosurgeon (who preformed H's part of the
operation) has asked for pictures of H,
especially her back, soon after her birth.
We are now praying that H heal, grow and thrive
exactly where she is for many more weeks.

Thank you all for being there for us,
B and Amy Smith

November 16, 2002 (Evan's 4th birthday)
Amy continued her recovery today. She was taken off
epidural and oxygen early (too early) this morning.
She felt light-headed most of day, drank little, and
ate less (Jello). Her IV will be out tomorrow
probably. She is receiving medication through a tube
in her leg to suppress contractions. (You see the
uterus knows that babies normally don't stick around
after C-sections!) A nurse was able to take a few
pictures. There are two good ones of H... okay,
of her back through the incision in the uterus,
before and after. She looks... um, red. Both surgeons came
to check on Amy today and were very nice. Amy felt
better as the day wore on, and it will take a while to
adjust to the medicine. She mostly needed sleep since she
got little last night.

Amy's Uncle Mike is still here with us, providing
support. He is a truly wonderful man. Amy's mom
E and Aunt Ruby are still with the kids in Pittsburgh.
We can't thank them enough. My mom and brother left
this evening, and it was a joy to have them here. We
expect Amy to be released Sunday, but we will wait
until Monday to fly back. Doctors orders. I think
H will continue to be checked with ultrasounds
later in Pittsburgh. Thank you for your help, prayers
and kind words.

God is good, all the time!
Amy (sleeping) and B

Sent: Sunday, November 24, 2002 3:05 PM
Subject: So Good To Be Home
Hello dear family and friends!
Never before has coming home felt so good! After a
couple days of recovery in the hotel, we boarded our
plane to Richmond. God was so good to Amy, giving her
just enough strength and energy for the travel day.
Yes, the kids were thrilled to see us, but not
nearly as much as we were to see them.

After just a few days of rest at home, Amy is starting
to feel more normal, moving around the house much more
and not so short of breath. In another week, she will
probably be feeling pretty much like her old self, but
will have to limit her physical activity by choice to
help ward off contractions and premature labor. We are
blessed to have Amy's mom, E (and for several
days, Aunt Ruby), here to help ease the task of taking
care of E and L. Nana will get her first days
of respite over Thanksgiving when Brian's mom, S,
returns. Be forewarned, if you come to visit which
we hope you will, you will probably be put to work! ;)

As you will recall, premature labor was one of the
risks we had to accept in pursuing the surgery and
we are praying that God will keep H safe in her
sanctuary until He has made her fully ready to enter
the world. Amy wears a pump that gives her a constant
flow of medication to help prevent contractions.
Twice a day for an hour each session, she places a
monitor on her abdomen to record any contractions she
might be having. That information is transmitted over
telephone wires to a home health care agency that
keeps in daily contact with Amy about how she and
H are doing. If she has too many contractions
(this has happened only once so far, praise God!) the
agency instructs Amy on how to give herself extra
doses of medicine, drink lots of water, lie down,
remonitor and retransmit. It is such a comfort to have
this daily medical oversight for Amy and H.

We had our first doctor's appointment post-surgery
yesterday. We were so encouraged to see H
yawning... how bored she must be with all of this!
Our doctor (and we) were delighted to see that all
looks well. Her ventricles remain normal (no
hydrocephalus at this point), her back incision looks
fantastic, and the amniotic fluid was abundant as it
should be. We can not praise God enough for the gentle
way He has led us to this point. We have been through
so many emotions in the last month, many of them very
painful. But now what mostly remains is prayerful
anticipation of holding in our arms the precious
little girl who God has created for us to love. We
find it so amazing that you can "Give all your worries
and cares to God, for he cares about what happens to
you." I Peter 5:7

Our insurance case is scheduled to be reviewed by a
committee of Alcoa bigwigs on December 15. Since it
is an employee-directed insurance plan, the
committee will make the final decision as to whether
Blue Cross Blue Shield will pay for the surgery. We
are in the process of gathering support letters from
doctors and parents like the Williamsons who are
familiar with the benefits of fetal surgery for spina
bifida. We appreciate your prayers regarding this as
well.

Thank you so much for your prayers and please keep
them coming! We will try to send a much shorter note
after each of our weekly doctor's visits to keep you
updated and to keep H on your hearts.

Love to you all,
B and Amy

An Emergency Room Story with a Happy Ending (not for the faint of heart)

Yesterday was a rough day for Butterfly. I almost couldn't tell you how her siblings fared as all of our attention was focused on helping Butterfly be comfortable. Historian, with strep throat, was reminded to take his antibiotic in the morning and, other than an occasional tousling of his hair and impromptu hug, he didn't get much more parental pampering. Historian and Lizard got their own meals. Lizard even cooked lunch for Butterfly. Historian set up the DVD player in hopes of distracting Butterfly, and perhaps all of us, from the vexing and vocal discomfort she was experiencing.

Butterfly has two temporary lines that are draining her bladder. All day, we weren't satisfied with their output and suspected that a too-full recently-operated-on bladder was the source of her pain. Unfortunately, the only method we'd been taught to help drain the lines was to push water through them, and effectively into the bladder, increasing its volume even more. Every time we tried this, at least five times (we lost count), her screams not only pierced the air, but all of our hearts.

After consulting twice with the urologist-on-call, we decided to take her to the emergency room. Her distress was clear to everyone. Butterfly is not a silent sufferer. Because of that, we found ourselves pushed ahead of three others waiting in the E.R. As Butterfly's vitals were being taken, one couple came to the desk to tell the receptionist that they would be waiting outside. The woman indicated with hand gestures that her husband (whom I presume was the patient) couldn't bear to hear that little girl screaming.

Poor Butterfly had to have another IV inserted. She has been through so much. They gave her two doses of morphine which, on top of the Tylenol with Codeine we'd given her an hour earlier, did NOT take away her pain, did NOT cause her to sleep. After checking her blood and doing an ultrasound of her bladder and finding nothing alarming, the E.R. doctor advised that Butterfly be sent to MCV via ambulance for a direct admit. I cannot describe how upset Butterfly was over this. Since Steady Man and I were not convinced that MCV could do anything for Butterfly (we had been warned that the after-pains from this surgery could be "harrowing") and because we'd promised Butterfly that she wouldn't have to spend the night in the hospital, we didn't offer immediate consent. The doctor left the room to let us discuss our choice, letting us know that she strongly advised the transfer.

Pretty quickly we decided and explained to our emotionally depleted Butterfly that we should go to MCV, if only to exhaust every possible remedy for Butterfly's pain. At this point, a nurse came in to take a urine sample. She decided she would attempt to distract a sample using suction (pulling back on an over-the-counter syringe) on one of Butterfly's tubes. It wasn't working immediately, and as Butterfly's disturbed state only increased anytime anyone came in to do anything, I suggested to the nurse that she skip taking the sample as we were about to be taken to MCV for a direct admit and they could get a sample, if they needed it, there.

Praise God that this nurse did not listen to my advice but persevered! Her technique, after a few attempts, worked, and she got her sample, a very prodigious sample. And when she was done, one of Butterfly's lines filled and filled and, instantaneously, we had our girl back.

If you could have seen the transformation! She went from a hysterical, irrational, thrashing girl to the picture of peace and tranquility, cracking jokes and charming everyone who came into the room. And then she said, "Oh no, my tummy" and we were filled with dread. We asked her if the pain was returning. "No, my tummy is growling. I'm hungry!" The doctor came it to reassess her patient and she said she was completely comfortable sending Butterfly home in this lovely picture of health and happiness.

Shortly after Butterfly started feeling better, in another attempt to assess where her pain was, I asked her if she would like to stop at Walmart or Target to buy a new movie that she could watch when we got home. "Yeah!, But it should be Target. They have better movies." Boy, was she ever annoyed with us when, after finally being discharged at 10:30 p.m., we told her that it would be too late to go to Target to get a movie.

By the time all of Butterfly's missed therapies were completed, it was midnight when she was finally placed in bed. We tried the new technique that the nurse unintentionally taught us and Butterfly, lying on her side and facing away from us, signaled a thumbs-up over her side.

We cannot express how grateful we are for the events of last night! Literally moments before Butterfly, still in extreme pain, was to be sent by ambulance to another hospital to start the whole process again, God sent an angel, in the form of a nurse, to teach Butterfly's parents a way to bring instant comfort and peace to their daughter. This new technique doesn't increase her pain, bringing her to uncontrollable shrieks like the former and only method we'd been taught; rather, it causes no harm and nearly instantly relieves Butterfly's discomfort. We are overjoyed!

Now, at nearly 10 a.m., Butterfly and her daddy (who's taking his turn sleeping on a mattress on Butterfly's floor) are continuing to enjoy a pain-free, restful slumber.

Please continue to pray for Butterfly. Our God has been so merciful and good to us and we know your prayers are pleasing to His ears. Whatever happens, He deserves the glory and our praise!

We were able to encourage Butterfly to sing in the E.R. last night to help her work through her pain. She sang a song that she learned in the kids' choir at our church. The song is based on Psalm 143:8. We pray the words from this scripture will encourage you. "Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul."

What a Difference a Day Makes

Two nights ago was Butterfly's worst night yet, not because of the number of times she woke up, but because of the fierce nature of her pain. Steady Man and I frantically worked to figure out the cause of her pain. Our first attempt at fixing it failed. Our second attempt caused Butterfly to scream hysterically. The screaming proved to be the storm before the calm, as relief soon followed. At that point, I fell on my face in prayer. I read my Bible and I waited for the doctor-on-call to return our call. He never did which is maddening, but I believe God was calling us to trust Him alone for this one. After the hysteria, Butterfly ended up sleeping more than six hours peacefully.

The next day was virtually pain free and we enjoyed another visit from friends. We did have one scare which we thought may have sent us to the E.R., but the surgeon-on-call (this one called back) talked us through fixing the new problem. And it was easy and didn't hurt.

Last night, we prayed very specifically for Butterfly's sleep, as night time has been the hardest since surgery. And she slept. And slept. And slept. Lovely, peaceful slumber. Eleven hours with only one stirring at 7 a.m. to ask if it was O.K. to sleep in. You betcha sweetheart. Sleep. You deserve it. 

Today has been another good day with only a few minor complaints. We've been told by the experts (parents) to expect intense bladder spasms for weeks, so we are wondering if these good days are numbered or if God has determined to be especially gracious to Butterfly.

We enjoyed another visit, this time from the M family.

And we went on an outing... to Ben Franklin Crafts! We "needed" googly eyes and feathers.

Praising God for a fantastic day!

Butterfly's Surgery: Day 7

Each day brings Butterfly less moments of pain and more moments of these smiles.

She's on a liquid diet today. She was pretty happy to have jello and ginger ale.

We think scented nail polish is awesome. It's on sale at Walgreens for $.99.

We especially enjoyed visits by family and friends in the play room.

We have done so many craft projects, I suggested we check off art for the first semester of home school. Butterfly, who loves art, says we can't.

We missed worshiping with our friends at church. Wouldn't it be wonderful if we could ALL attend next week?

Butterfly's Surgery: Day 6

Butterfly had her NG tube removed today and the girl is over-the-moon about it! She spent three hours sitting up in her wheelchair in the play room before tiring and asking to go back to her room (she actually called it "home"). She is tolerating her pain much better and is much more interested in conversation and activities. She may be allowed a liquid meal later tonight. Jeremiah 29:11 has special meaning for us today, "For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you HOPE and a future."

Butterfly's Surgery: Day 5

Butterfly got in her wheelchair for two different outings to the playroom today. We pretty much forced her to do it both times, but once she was there, she was able to have happy moments of play. As the doctor predicted, the extra activity has relieved some of her tummy rumblings. Praise God! He almost promised that she would get her NG tube out tomorrow and may be allowed a light liquid diet tomorrow evening. She might enjoy a few short (10 to 15 minutes) visits tomorrow afternoon. You'll have to notify us if you plan to come as we have to register your name at the Children's Floor security desk. If you'd rather wait to see her when we get home, that works too as we're sure she'll be feeling even more social then. It looks like the earliest we will go home is Monday. Thank you so much for your prayers. We ask that you continue to pray for her.

Butterfly Update: Day 4

Today Butterfly sat up in bed on her own several times and even got out of bed to sit on my lap for about an hour. She made a few short attempts at a craft which was really a huge gain from yesterday. She has been completely off Motrin for about 12 hours and has been managing on just Tylenol. She met Miss Hanover and Daisy the therapy dog. Butterfly has been moved to the regular pediatric unit. Tomorrow's goal is for her to get in her wheelchair and take a trip around the floor. Activity is key to her progress. She would love to have the NG tube removed, but we're still waiting for her tummy to fully wake up from the general anesthesia. We'd appreciate specific prayers for that as well as her continued improvement related to pain, stamina and overall healing.