Thursday, October 29, 2009


So I'm getting Maddie dressed this morning, and as I raised her leg to get her underwear on, her cast came off in my hand. I just stood there, holding the cast in place, my stomach in my throat, and then I did the only thing I could think of. I hollered for Richard.

He came running, and we debated for a few seconds what we should do. Our conclusion was to try and gently place the cast back on Maddie's leg. So we attempted that and then Maddie started saying, "Owwww. Owwwww." Considering she has not once complained about pain in her leg since the surgery, we thought this was significant, so we stopped operation cast replacement immediately. "What now?" we thought. Our next decision was to take the cast completely off and see if we could rewrap it. We weren't really prepared to see the stump but found ourselves pleasantly surprised when we finally did get a look. It looks fantastic. It's healing well, and her surgeon did a wonderful job of shaping and stitching. Okay, so. We replaced the cast, rewrapped it, and then realized it was about two inches lower than it had been previously. Not good. Next thing, I'm on the phone with Shriner's, and they say, Come on over."

To make a long story short, Maddie's surgeon happened to be in clinic today, so he was able to look at her leg and decided that since it looks so good, he was not going to replace the cast. Now Maddie just has to wear these snug stockings for two weeks, called stump shrinkers, to make sure that all the swelling (of which there is not much) goes down before she is casted for her prosthesis. We have an appointment for them to do the cast of her leg next Friday. Two weeks after that, we will be able to go back, and Maddie will be fit with her brand new leg, a couple weeks earlier than we expected.

The girls were supposed to have a Halloween party at school today, and I felt horrible that they were going to miss it. They were excited because we'd been talking it up. Well, I shouldn't have worried. Shriner's had a full blown Halloween party of their own going on complete with dee jays, music, dancing, face painting, craft activities, and everyone, staff and patients, dressed up in costumes. After our appointment, the girls and I hung out for about an hour and had loads of fun. I'll post some pictures later.

Little did I know what this day had in store, but sometimes, events that are unplanned can have the greatest outcomes.

Sunday, October 25, 2009


Richard is the self-proclaimed juice valet providing drinks on demand, I am the cruise director planning activities to fill up the day, and Ibby is the gopher, fetching toys at Maddie's request. And Maddie? Well, let's just say she's enjoying her celebrity status. Can you say prima donna?

All joking aside, she's doing amazingly well. We had a brief setback on Saturday morning when she threw up her breakfast at the table in Daddy's hands. Good catch, Daddy! She's going longer and longer in between doses of pain medication, and she hasn't complained once. Well, okay. She has gotten a little whiney a couple of times mainly over what she wants to do next especially if it conflicts with what Ibby wants to do, but she has never told us she's in any pain, thank goodness. She doesn't really like having to sit so much, so providing a variety of activities has been key in warding off boredom. Thankfully, I had just ordered three new Signing Time dvds, and both the girls are loving watching those in between putting together puzzles, coloring, playing with a new set of tinker toys, and reading. Mama still has a few secrets hidden away when the current tasks become redundant. Baths are out of the question while she has her cast, and believe it or not, she's actually been enjoying having her hair washed in the kitchen sink and taking a sponge bath provided by Mommy. I honestly thought she'd be mad about not getting a chance to bathe in the tub, but so far anyway, the novelty of washing up in the kitchen has amused her.

Anyhow, overall, we are doing really great, far better than we ever expected. Maddie is a wonder. And Miss Isabel is really being a good little trooper, too. Of course, there is a long couple of weeks stretching ahead of us until that cast comes off, so I'm sure we'll have some not so great times ahead.

Friday, October 23, 2009

Home and Resting Comfortably

We are thankful to report that Maddie's surgery went very, very well. We arrived home at noon today, 28 hours after this whole adventure started, and Maddie is doing wonderfully.

We arrived at Shriner's at 8:00 a.m. on Thursday morning. They wanted us there early even though Maddie's surgery wasn't scheduled until noon. Thankfully, it got moved up, and Maddie was off to the operating room at 10:30, a blessing since she hadn't had anything to eat or drink since dinner the night before, and we were afraid she was going to start complaining, justifiably, about being hungry and thirsty. Truthfully, we kept both of the girls so busy for two and a half hours that neither had time to get grumpy.

Maddie showed absolutely no fear while she was being prepped or even when they took her from us while she was still awake to head off to the operating room. It helped, I'm sure, that they gave her a little something to relax her. It was quite humorous. For awhile, she was acting like she'd had two or three good strong martinis, slurring her speech a little and giggling. As a surgical nurse carried her off down the hallway, she even waved goodbye to us. At that point, of course, I broke into tears. It didn't last long because we knew she was in good hands. The procedure took an hour and a half. At noon, her surgeon reported that everything went very well and that the surgical site looked good, healthy and pink with good circulation. After about another half an hour, a nurse came to get me. She said Maddie was calling for her mama and baba. When I got back to the recovery area, Maddie was quite distraught. She was crying and began reaching and calling for me quite frantically when she saw me. It took quite awhile to calm her. Obviously, she woke up in an unfamiliar environment, and we were told ahead of time that the anaesthesia causes some temporary grumpiness. More than anything, she seemed quite upset about the IV in her hand. She wanted it OUT. The nurses cooperated and put an IV line in her leg instead, and that seemed to make her a little bit happier.

Back in the room, she drank quite a bit of juice and began to feel more at ease. At 2:00 p.m., Ibby and I went to the Parent Accommodation Center where we had reserved a room, and the two of us slept for nearly three hours. When we returned to Maddie's room at 5:00, she was eating and talking and laughing and playing. I couldn't believe the difference three hours made. The smallest setback occurred when her mac and cheese didn't stay down, but she did well with crackers. When we tried the mac and cheese again later (because she was still hungry) thankfully, it stayed put in her tummy.

Richard and Isabel left for home at 7:00 p.m., and at 8:00, Maddie and I went through our normal bedtime ritual, minus the bath, of course. She slept all night through except when she was awakened twice for pain meds and a vitals check by the nurse. She was restless but more so because her cast, which covers her entire leg, is a bit unwieldy when she's trying to turn over in bed. There was some concern on the part of the night doctor that Maddie hadn't gone pee since surgery, but we solved that dilemma at 9:30 p.m. when she peed all over me. She was really tossing and turning, so I asked her if she had to go potty, and she said yes. I took off her pull up (we put one on during her hospital stay just in case), and just as we reached the door to the bathroom, she let go. Good thing I had brought an extra shirt. Truly, I was so thankful they didn't have to put in a catheter, she could have peed on me all night if she wanted.

She awakened this morning at 7:30 a.m. quite happy and hungry. After breakfast, a quick exam by the pediatrician, and a trip to physical therapy to make sure she could use a walker, which of course she can because she already does, we waited for our discharge papers and were released around 10:30 a.m. Maddie ate a good lunch when we got home, watched two Signing Time dvds, and went down for a nap at 2:00 p.m. She is sleeping peacefully now.

Thank you, thank you, thank you for all of your thoughts and prayers. They truly lifted us up over the past couple of days. It was so comforting to know there are so many people who love and care for us. Here are a few highlights of Maddie's big day:

Playing before getting prepped for surgery

Practicing with the mask

My stylish hospital gown

Back in the room after surgery, feeling a little groggy

Being silly after supper

My new wheels

Ibby playing chauffeur


Feeling pretty happy this morning

Getting a little sleepy right before we headed home

Sunday, October 18, 2009

Sunday Fun Day

We actually made it to early church today. It helped that both girls woke up a little early, so we had plenty of time to get ready and get out the door. We couldn't resist taking a couple of photos of them in their matching dresses.

After church and a quick change of clothes, it was off to the apple orchard and pumpkin patch. It was a beautiful day...a little on the cool side and a bit windy, but not freezing or snowing! The girls had the most fun walking through the pumpkin patch. They kept trying to pick up the "punkins," and when they wouldn't budge, they would exclaim, "Too heavy!" It didn't keep them from trying pumpkin after pumpkin, even throwing in a few grunts to show us they were trying really hard to make the lift.

Maddie spent about five minutes being crabby because we took her away from the pony to walk through the corn maze. Here she is pouting.

Thankfully, she recovered quickly after we had a bite to eat and let the girls play on the wooden train. Here is Ibby in the dining car.

We even went on a hayride. We are quite sure this was Maddie's first time in a hay wagon being pulled by a good ol' John Deere tractor.

On the way out, the girls had an opportunity to "drive" a tractor themselves. You probably don't recall, but this is when Isabel had a meltdown last year.

And last but not least, we stopped by the apple growth chart to see how the girls measure up. Isabel was so little last year when we had her pose in front of it, and now we have two big girls, growing taller almost by the minute it seems.

Unfortunately, we didn't have enough time to pick any apples. Next year, we figure we'll make a whole day of it. All that fresh air and activity definitely made for good naps when we got home!

Friday, October 16, 2009

The Week in Review

Besides the hospital visit on Monday and school on Tuesday and Thursday, Maddie and Ibby have been very busy for the past week or so.

They got extremely excited about some presents two very special boys from Texas sent them. Presents from boys already?!

They pretended to give each other baths in the baby bathtub. I know, I know. In these particular shots, it looks as if Maddie is choking Isabel (and really enjoying herself) but actually she's just washing her hair.

They fed cookies to their babies. This may have been a hint to mom to rethink mealtime. In fact, the other day when I asked the girls what we should have for lunch, Maddie quickly replied, "Chocolate!" Truthfully, that sounded like a great idea to me, but I was a good mommy and served turkey hot dogs, carrots, and raspberries instead.

They read books to themselves and each other.

And every night, they did their very favorite thing...danced naked before bathtime while screaming, "Naked! Naked!" They really like to be nude, and each night, there is a crazy frenzy of naked girl bodies in the family room. It's a sight to see. We have a hilarious five minute video of the bare butt silliness, but you'll have to visit us to get a look at it. Any takers?

Oh, the other big happening at our house this week was that Mocha fell in love with Grover. I suppose it's really more of a love/hate relationship. Every night after the girls go to bed, Mocha hauls Grover out of the Dora tent and wrestles him to the ground. After establishing her dominance, she curls up with him and goes to sleep.

And how was your week?

Wednesday, October 14, 2009

MRI Results

The neurologist who interpreted Maddie's MRI results tells us that the swollen area on her lower back is called a lipoma which is benign tumor composed of fatty tissues. Normally, these masses are harmless, but the location of Maddie's could present some problems if it were to attach to the spinal cord and exert pressure on it. For now, we can proceed with the foot ablation as scheduled next Thursday because the lipoma presents no real problem at this time. Once Maddie is healed from the amputation, the neurologist wants to do some further testing including a renal ultrasound and something called a urodynamic which measures pressure and nerve reaction in the bladder. We think that these tests will show no involvement of the kidneys or bladder since Maddie is fully potty trained and has marvelous control, but it will be good to know for sure what is going on internally. We will most likely proceed with these tests in January or so.

For now, we are focused on making life as normal as possible until next Thursday arrives. We have a book about a turtle who has to stay in the hospital, so we've been reading and talking about that. Maddie and Ibby have also been playing patient/doctor quite a bit. This was their idea. They take turns being the doctor. While the patient fake cries, the doctor gives shots in every part of the body...toes, head, ears...and says over and over, "It's okay. It's okay." Oh, and the doctor administers a kiss to the affected area after each shot. Additionally, Richard and I have purchased a doll that has a prosthetic leg, and we will be introducing that to the girls this weekend while we begin to try and explain what Maddie will be facing next week.

Monday, October 12, 2009


Maddie has a small patch of redness and swelling on her lower back, and though the doctors at Shriner's believe it's nothing to worry about, they did want to have it checked out before her foot ablation which is scheduled for next week, October 22. So today, Maddie and I are at Gillette Children's Hospital in St. Paul while she undergoes a full spine MRI.

I was a nervous wreck all night for two reasons. First of all, snow was predicted, and I was worried about driving in rush hour during a snow storm. We had to be at the hospital at 7:45 a.m., and though driving to St. Paul would normally take about a half an hour from our house, all bets are off when there is anything falling from the sky. Sure enough, when I looked out the window at 2:00 a.m., the snow had already started and was accumulating. Secondly, I was freaked about Maddie having an IV line put in. Small children have to be sedated for MRIs because they have to hold still for an hour and a half. Maddie is a real trooper when it comes to anything medically related, but because we had a bad experience this summer drawing blood, she gets very upset whenever anyone comes at her with a needle. Once again, all my fretting was for naught. My dear, dear husband volunteered to drive us to the hospital AND they didn't put the IV line in until after Maddie was already knocked out from a little gas anesthesia.

The folks at Gillette are wonderful. They talked to Maddie and played with her and did everything in their power to make her feel comfortable. After some initial shyness, Maddie perked up and started to enjoy herself, even singing "Twinkle Twinkle Little Star" for some of the staff. At one point, they gave Maddie a face mask to play with so she would become familiar with it, and we practiced putting it on her Ducky. Then Maddie showed us how to put it on her own face. She was asked pick out a flavored Lip Smackers (she chose raspberry and then asked if she could have one for sweet...Ibby gets cotton candy), and then she got to "color" the inside of her face mask with it, so she would smell that more than the odor of the gas. When it came time for the real thing, Maddie was not afraid to place the mask on her face. Watching her go under was strange. I didn't realize it would make me so emotional. I guess it's just not an easy thing to watch your child go unconscious.

So I'm drinking a Starbucks and watching it snow while I wait for Maddie. They say after the MRI is complete, it will take her fifteen minutes to a half an hour to wake up at which point I will be able to go into her room. She'll be able to have some juice and a little something to eat, and they will send us on our way. Please keep us in your thoughts and prayers today.

Monday, October 5, 2009

Hat Season

It was a little chilly this morning before we headed off to ECFE, so out came a couple of fall hats. Ibby is not a huge fan of hats, but she'll wear one when we ask her to. Maddie, on the other hand, did not even want to take hers off for her nap. It's almost time to put away the denim jackets in favor of something warmer. Oh, how I dread the coming I do every winter. Richard and I have started up the annual "when can we possibly move to a warmer climate" discussion. Each year, the topic seems to crop up earlier with even more urgency. Someday. Someday. For now, we'll enjoy the brisk fall weather, and when the temperatures plummet and the snow falls, we'll sled when the weather permits and curl up under blankets with popcorn and hot chocolate when it doesn't. I guess that doesn't sound too bad. Sigh.