Corralling the Crafts

You know things are going well when I am able to post about something other than Butterfly's recovery process. In truth, this post will start with Butterfly and transition to something completely unrelated to tubes, medicines, hospitals and emergency rooms, although little girls will still play a starring role.

Butterfly is feeling great today. On Monday, if all goes well, she will have two of her three tubes removed. The Tuesday immediately following Labor Day, the last tube should come out. I'm toying with calling it Tubeless Tuesday and throwing a little family party.

While Butterfly was in the hospital, our collection of crafting supplies grew exponentially. Weeks before Butterfly's surgery, several of us started collecting easy crafts, along with other bed-friendly activity items, to present to Butterfly in a special bag-of-the-day each day of her hospital stay. Well, not much of those craft activities were done, either because Butterfly didn't feel well enough or, if she did feel well, she wanted to be in the hospital's play room/craft room, rather than in her bed doing crafts.

A few months ago, my mom had given me her toy organization system: a white wooden frame holding colorful plastic bins. I almost didn't accept the gift, fearing it would take up space that we didn't have, but it has turned out to be a wonderful craft organizer, to the delight of my children, especially my girls.

Each bin has been loosely designated for particular types of crafting items, such as foam sheets, scissors and adhesives.

On the left outer side of the system, we hung a hook for undecorated party bags. The bin below holds decorated bags. We should be ready for any gift-bringing occasion!

In two of the large bins, we placed 18 two-cup plastic storage containers with screw-off tops. They cost less than $2 for a a pack of three at Walmart. In these pint-size craft keepers, we have stored necessities such as googly eyes, pom-poms, buttons, cupcake liners, stickers, wooden clothespins, etc. The missing container from the photo below (which holds googly eyes) is being used as I type.

Of course, as home schoolers and as a family with crafting enthusiasts, we also have additional plastic bins that hold respectively crayons, markers and colored pencils. We also have a kids-welcome cabinet full of sewing supplies.

Today, we added a new stand-alone bin just for sock puppet supplies! Sweet friends of ours created and mailed us a Sock Puppets-in-a-Box kit. Guess what we're doing this morning?

Lizard, pictured above, is perhaps the most overjoyed with our now easy and unrestricted access to crafting supplies. She is incredibly creative and patient and has a playful sense of humor, three qualities that in my opinion are essential for crafting!

Just added:

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."

Blessings and Lessons....

As Another One Bites the Dust

Guess who ended up at the doctor's office first thing this morning? Historian! Would you believe he has strep throat? He may have said something yesterday about wishing that he could drink soda all day like his sister Butterfly. Be careful what you wish for! Soda it is, if you can bear to swallow! (Historian graciously gave his permission for this life lesson to be shared. He has been so sympathetic and kind to Butterfly during his many visits to the hospital and during her first days at home. No doubt, his brewing illness brought out the grumbly side of him yesterday.)

As one of my friends pointed out, this is a good thing. We may as well get all of our recoveries going at the same time. Well, let's just hope and pray it's only two recoveries. Below, he managed a smile for us. What an awesome kid!

For Butterfly, today was a pretty good day. Butterfly had a couple of hours of pain, but we are learning how to address her pain issues. Praise God! Later, we took a "walk" to feed the cows.

Butterfly got to skype with two of her favorite friends and we received another delicious meal prepared by friends from church.

Speaking of our church family, we have been overwhelmed by the love they have shown us. Three of our friends from church came to the hospital and spent nearly the entire day with us during Butterfly's loooong surgery, praying with us, sharing stories, encouraging us, laughing and crying with us. One of the three actually took a vacation day to be with us! Two pastors from our church came that same day and their presence meant a great deal to us as well. On the home front, more friends from church provided dinners for our family the week that Steady Man, Butterfly and I were in the hospital. And the delicious meals keep coming. We are happily anticipating these edible gifts all of next week too! Many dear people, our family and friends and people we've never met, have joined our friends at church in praying for us. My mother-in-law, aunt and uncle drove many hours to spend a week each at our home assisting with our needs. My mom has been ever present, offering her help in any way she can.

For all these things, and many more, we are truly grateful!

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!

First Visitor At Home

Because Butterfly was feeling well and had gotten off the couch and into her wheelchair, we invited her friend and neighbor, A, to come over for a short visit. Those 30 minutes were the happiest of Butterfly's day. I think this social girl is going to improve all the more quickly with some well-timed visits from friends.

Thank you for coming A!

Five Smiths Eating Ice Cream

 A Friendship So Sweet....

We received an exceptionally sweet treat via the big brown truck today; six pints of the creamiest, richest ice cream we've ever enjoyed. This ice cream is not only some of the best we've ever had, but it evokes lovely childhood memories for me. Graeter's Ice Cream is made in Cincinnati, Ohio, my hometown and is sold mainly in Graeter's Ice Cream parlors in and around Cincinnati. Many Kroger Supermarkets also sell select Graeter's flavors, as Kroger is also from Cincinnati. You can learn more about Graeter's here.

My friends, Alice and Karen, who sent the ice cream (packed in dry ice) are two I've known and loved since high school. We met working at Kafe Kilimanjaro at Kings Island. We got into incredible amounts of mischief together, walked with each other through some of life's greatest joys and deepest sorrows.

Both ladies are wonderfully creative, beautiful, kind and compassionate. Thank you Karen and Alice! Butterfly, and all of us, were delighted!

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.

Butterfly's Guess What It Is Game

In the children's classic book, Madeline, by Ludwig Bemelmans, Madeline is rushed to the hospital for an appendectomy. Lying in her bed, she has plenty of time to contemplate the ceiling, as you will read in a line from the book, "On her bed there was a crank, and a crack on the ceiling had the habit of sometimes looking like a rabbit." This morning, Butterfly, also contemplating the ceiling, exclaimed that she had discovered a creature there. Can you guess what it is? Perhaps we will have a prize for the first correct guess. :)

Butterfly's Surgery: Day 3

Butterfly went into surgery yesterday at 7:30 a.m. We didn't get to reunite with her until about 9:30 p.m. in the Pediatric ICU. The pain of the 14 hours away from Butterfly was eased greatly by your prayers, messages, phone calls and  visits. We continually felt God's hand of comfort throughout the day.

The surgery went very well. Everything looks very neat and clean. Butterfly slept on and off through the night. She has squeezed our hands, cracked smiles and is talking softly. She has a good size NG tube going down her throat which, in addition to her "stomach pain" is her greatest complaint. She is getting Tylenol through an IV and is occasionally needing morphine for her "stomach pain."

Right now, she is watching Beverly Hills Chihuahua 2. They have a nice play room here (which we won't be able to visit quite yet) and DVD library. A therapy dog (a Jack Russell Terrier named Emma) will be visiting our room soon and we are looking forward to that.

Steady Man and I both were able to sleep in Butterfly's ICU room (a technical no-no) and the PICU nurses are top-notch. Butterfly will not be able to eat or drink for the next few days, so we need to take turns leaving the room to eat ourselves. We have WiFi in this room, but we cannot use our cell phones.

She will probably go to the Pediatric Step Down unit for tonight and then the regular Pediatric Unit (where we were the first night) tomorrow night.

For Butterfly to go home, we need her intestines to wake up and her lung function to regain strength (it is stressed by the general anesthesia). She will also need several days of healing, manageable pain levels and parents trained to care for her at home.

As of now, she is requesting no visitors, but we'll let you know if that changes.

Please continue to pray for Butterfly. We have felt your prayers and God's grace to us throughout this time.

Blessings,
Amy and Steady Man

Butterfly's Surgery Day 1

Please keep praying. Butterfly had her IV and NG tube inserted about two hours ago. She hates the NG tube and the liters and liters of Golytely that the NG tube is sending into her stomach, but she seems to be clearing quicker than expected and she has been relatively calm for the last hour.
Answered Prayers So Far:
VCU was ready for us when we arrived (we weren't sure because as of 10 p.m. Sunday night, we were told Butterfly wasn't in their computers).
Butterfly woke up this morning joyful.
The hospital is much nicer that we had anticipated.
We have a private room.
We have had wonderful interactions with all the nurses, doctors and staff.
Steady Man and I can both spend the night.
We have WiFi.
The first hour during and after the insertion of the NG tube and IV were very difficult for Butterfly, but God in his goodness has calmed her and she is much more comfortable.
The hospital chaplain came and prayed with us.
She may be able to have the NG tube removed for the night if her bowel clears completely (and it is looking very possible). Please pray for this as it would give her a much better night's sleep.

Tomorrow's surgery will start at 7:30 a.m. and should last about eight hours (longer than we thought).
Right now, Butterfly is saying she doesn't want visitors because she is embarrassed by her tubes. She'll have even more tubes post surgery, so we'll have to let you know if she feels differently at some point.

We feel your prayers every moment. Please, please, keep storming the gates of heaven for Butterfly!

Blessings,
Amy and Steady Man

Butterfly's First Friend

Butterfly's first friend.

Thankful for My Friend

Today we said goodbye to very dear friends of ours here in Richmond. They are moving to a wonderful opportunity in Missouri. We love every member of this sweet family, but I want to tell you today about D. I can't explain why, but the first time I heard this friend's name (before I even met her), I felt certain I would like her and that I would want to be her friend. And that happened. The friendship was gradual. We led a spelling club together, shared meals together and discussed books. We watched one another's kids, carpooled and laughed. Later we shared some of our deepest struggles and God's loving response to our hurts. This friend I love for many reasons. She is truly gentle, kind and encouraging to everyone she meets. These are qualities I wish to have more of in my own life. She parents wisely, she entrusts her children with God's riches and the return has been abundant. She is willing to see Jesus in the fullness of his love and compassion and she seeks to love others as He loves us. She is ridiculously smart and humble. She is strong and joyfully lets her husband lead. She is full of faith and she is real. I love you D (and your precious family too)!