Mommy? Do You Know What I Want Most In Life?

After finishing phonics this morning I assigned Laura to run a few circles around the house. She was getting antsy and a bit bored with oddball sounds -ink, -ank, -onk, and -unk. So I figured a bit of exercise would be a good thing.

After 6 or 7 rounds, she jogged over to my desk for a quick rest. She reached out and took my arm and said "Mommy? Do you know what I want most in life?" I realize she's six, and whatever she is about to say will most likely be a fleeting desire that will come and go quicker than the sun in NE OH, but I turn to face her knowing that right now, this is a biggie for her. I immediately start thinking about how I'm going to deter her apparent never-ending request for a 'walking pup' as I'm sure that's what will fall out as soon as she opens her mouth.

But I was wrong.

"Mommy? Do you know what I really, really, really want most in life?" I shake my head and smile to encourage her to continue. "I want to go to bed without wearing shoes."

As I reach out to give her a great big hug, I hide the tears that are forming in my eyes. I can't tell her how many times I've wished and prayed, and prayed and wished for the very same thing. Or how many times I have wondered just how much longer she'll have to wear them since she's already several years past the norm. Or how often I've wondered if we will ever really be able to let go of the constant monitoring of her feet and if her big toe will ever go down to a normal position.

And then I glance down to her heels. Her straight, flat heels And I smile. The Lord has been good. He brought Dr. Dobbs and Kristina in to our lives and I am forever thankful. There will be a time when she can go to bed without shoes. And there will be a time when we don't automatically look at her feet as she runs by. And there will come a time when all of this will just be what happened back then.

As I pull away from her and touch her cheek with my hand, I tell her that someday she'll have her desire. Someday she'll go to bed without shoes. And until then we'll just keep doing what we should. She shakes her head yes, smiles and goes back to running circles in the house. On her flat feet. Just like every one else does.

Laura's New AFO

Last week we embarked on a new journey. One where Laura's foot will be held in place by an AFO for awhile. I must honestly say that after fighting it for so long, seeing her foot being held correctly and watching her walk almost normally has done my heart good. Knowing that 'cute shoes' will require a much more diligent search is something I can live with. Meanwhile, we went out and purchased a PT endorsed pair of New Balance tennies that are grey, pink and white. While they don't go with much of her dressier wardrobe, she wears them every day and loves them. And so it goes.

Here are some pictures of her in her AFO. And for those of you who have a kid with atypical/complex feet, you'll relate to the big toe stance well. :)

Mitchell Shoes on a Dobbs Bar

For those of you who are looking for information about the Mitchell shoes on a Dobbs bar, here's what we use. If you have any questions, please feel free to ask here or on the nosurgery4clubfoot group on yahoo groups.

Our setup for our Mitchell shoes on a Dobbs bar


We attached the bar upside down so it did not get in the way of her walking. Here it shows that more clearly.


Here's the bottom of our shoes and bar:


And a closer view of one shoe - note the tab to press that makes the Mitchells easily removed from whatever bar they are attached to, including the Dobbs bar:


And a closer view of the plate and how it fits on to the shoes:

Prayer Works!

On December 15th we began what we pray is the last phase of Laura's clubfoot treatment. At our Thanksgiving visit Dr. Dobbs determined that a posterior tendon transfer was worth a shot for Laura, and a last ditch effort to cure her stubborn heel varus before an osteotomy would be required. Surgery for Laura hasn't always been an easy thing. She doesn't 'do' surgery well, but then most people don't. So it wasn't as if I was looking forward to it. Well, I might have been. On the inside. Waaaaay on the inside. After all, in my heart I knew this was what we needed to do. But in my head I was not looking forward to letting her go as she headed to OR, or watching her struggle with the pain of recovery immediately after surgery and beyond.

As I packed to go to St. Louis I made sure we had plenty of tylenol, some extra tylenol with codeine, some valium for muscle spasms, plenty of syringes and lots of apple juice to help keep her stomach calm. I planned for the possibility of her nissen letting go should she have an extremely upset stomach, and I packed comfy clothes for both of us as I anticipated spending a lot of time holding and rocking her through her pain, and climbing over seats in the car to get to her when necessary on the way home. I'd been through it before. I thought I knew what to expect.

When we arrived at Shriner's Monday morning, they immediately went to work making her comfortable and catering to her every whim. Lots of stuffed animals, a large playroom well stocked with everything her little heart desired, and pbs kids helped make her feel special. She fussed a bit as the medication began to help her relax as I'm sure she felt a bit funny. But when we released her to the nurses care outside the OR, she was doing just fine. After all, she was almost asleep!

Mom and I headed to get something to eat since we didn't know when we'd have time to do so later that day, and then settled down in a very nice OR waiting room. Soon the call came that she was out and in recovery, calling for me. My stomach sank. The difficult recovery time was upon us. I said yet another silent prayer as I headed to gather her in my arms.

As soon as she was settled in with me on a rocking chair, she drifted off to sleep. No fussing, no frustrations. Just rest. As we moved from the recovery room to her hospital room, she seemed to perk up even more. No extreme pain, no anxiety. Just a smile now and then, a hug for a stuffed animal or two, and a request for some crackers and apple juice.

I knew there were many people at home and across the country praying for her and soon realized the Lord was answering our prayers. My anxiety left as we prepared to take her home to Nana's for a nights sleep before driving home the next day. I'd planned to sleep with her in the living room, but even that wasn't needed. I put her down next to Jonathan, left them watching Noggin for a little while, and headed to bed myself. Mom and I woke up the next morning and marveled at the fact that we hadn't heard from her all night. But mentally I began plotting how to get some of the nasty pain meds in her before we left for home.

It seems I plotted without reason. As I listened to weather forecasts in the bedroom, Mom sat at the kitchen table to read her Bible and pray for a bit. Soon she was greeted with "Good morning, Honey" as Laura crawled down the hall. No crying. Not a whimper of pain. Just a smile to greet us. The Lord had really blessed her. And Mom and I as well. As you can see by the pictures, she was still doing just fine an hour later. We made it home that evening with just a few doses of tylenol needed. And I'm not sure they were for pain as much as they might have been because she was whining due to boredom. But I'm happy that was all. The Lord truly is good.

The troops as we pack to head home:



Nana and Jonathan:

"Dr. Dobbs is a Gen-us!"

Around here we have what we call 'kid stories'. You know, the innocent things kids say at just the right moment that just have to be shared with other adults in their lives. Things that bring a smile to your face and are often followed by laughter that can't be helped. Sometimes your kids say things that make you think long and hard about how you are parenting. Or they say things that are so true you can't help but know you are raising a child who is truly awesome in their own right. But most often they say things that make us laugh.

The other day a package arrived addressed to Laura. It seems her Shriner's bar had finally given up to the constant pounding it takes each morning and evening, and it had sheered in a spot that couldn't be repaired so we'd been sent a new one. Along with the bar was a pamphlet about the Dobbs bar. Since we're 'old-timers' at the whole FAB thing, I didn't pay much attention to it. But Laura had other plans. Soon she was ooohing and aaahing at the very cute baby pictured inside and asking me who it was along with many other questions about her pink hair bow, how much her Mommy loved her and so on. All usual questions I often must answer about babies we see in magazines, books and so on.

And then she closed up the pamphlet and turned it over. As she spotted a picture of Dr. Dobbs she grew still. Very still. And then ever so slowly her face started to light up. Her eyes grew big, her smile spread half way across her face, and her body quivered with excitement. Then, hugging the pamphlet to her chest she proclaimed "I just LOVE Dr. Dobbs! I love Dr. Dobbs! He's a gen-us, Mommy! A gen-us! I just love Dr. Dobbs!" And in that moment there was no doubting it. She totally loved him.

And in the midst of the moment I prayed that her love with last beyond surgery the following week.

Dr. Dobbs Revisited

In the past few years I have discovered that there are few things more difficult than planning, and then giving the okay to proceed with surgery for your children. In your gut you know that it is necessary, and yet you wonder if you are really doing the right thing. You wonder whether the surgery will cause other problems in its wake or perhaps make things worse rather than better. And you wonder whether you've got the right surgeon sticking their surgical tools in places that will have a permanent impact on your child's life.

Way back almost five years ago now we gave permission for the first time to a surgeon who promised to make life better for Laura. At that time she had a g-tube put in to help her survive, and a nissen to keep her reflux from hurting her even more. Over the years she's had a large handful of additional surgeries, been put under anesthesia for a variety of tests, scans, and such, and had so many other tests while awake that I can't remember them all unless I review her medical records. Through it all Laura has been a trooper, shown her extreme patience, and has developed a very high tolerance for pain. On the other hand, Don and I have gotten more anxious and a bit more nauseous with each and every approval for surgery.

As we met with Dr. Dobbs to review her latest tests and reassess her feet he delivered news that we were dreading. We're down to just three options for straight feet: a posterior tendon transfer, an osteotomy on her heel bone, or a miracle from the Lord. Well, he didn't mention the last option but it is always on my mind. After reviewing the long term effects and the chances for success, we opted to try the posterior tendon transfer before resorting to the worst cast scenario of an osteotomy. Laura will be in Dr. Dobbs capable hands on December 8th. And I'll be sitting next to my Mom wishing I could cuddle up in her lap once again. After we are released from Shriners, we'll head home by December 9th for a week or two and then head back for a cast change. We understand she'll be in that cast for a month or so before finally being cast free - hopefully for good. She'll still have to use the FAB at night so we'll be ordering another pair of Mitchell shoes to go on our Dobbs bar.

While we are hauling her 34 lb plus cast laden body, I'll be reminded over and over again that she's thriving despite predictions to the contrary when she was born. I'll remember that she was God's long before she was mine and that He loves her even more than I do. I'll remember that he has a plan in all of this, a plan for good. And you can guarantee that I'll be wondering what it is even though I know I probably won't know for a long time, if ever. In the middle of all of it will be patient, precious Laura, hobbling around on her cast, laughing and playing as if nothing has changed. I learn so much from her. Perhaps this time I'll learn to be wait patiently, too.

On The Road Again...

This weekend we once again head out to see Dr. Dobbs. However, this visit is a bit different. Not only will we be seeing Dr. Dobbs for a check, we'll also be doing an 'H&P' (history and physical in medical terms) and then having a nerve study done to confirm what Dr. Dobbs believes is nerve damage that is preventing her clubfoot from maintaining correction. Since this test checks for nerves, they believe it best that she be put to sleep for the process as Laura isn't exceedingly tolerant of some medical procedures. Especially those that cause some pain. Gee, who would have guessed?

Once we know the outcome of the testing we'll know what surgery, if any, she'll need. I'm expecting some but I'm not fully aware yet of all of our options. We're expecting the test results to give us that information. And we'll also know what additional casting might be needed to recorrect her foot. I feel somewhat like this may be the beginning of the end. But I've felt that way before and we are still on the journey so I'll reserve that until a later date.

I've often wondered why God hasn't fixed this. Why he hasn't just reached down and moved her bone back where it belongs or readjusted her fat pad so she's walking more normally. And I know that if she were a 'normal' clubfoot child we'd be done with the shoes, the regular appts and the constant wondering. We'd be done. But that isn't our reality. So I'll just keep on going through doors the Lord opens, doing what needs to be done and praying that the Lord's will would come to fruition in His time. And I think that is the hardest thing in all of this. Not knowing the outcome but moving ahead anyway.

Perhaps that is the bigger picture for me, and what I'm learning through all of this. Trusting the Lord. Following the Lord. Doing what I know is right even when it is the hard thing to do. Trusting. Totally trusting. I think it is one of the hardest things I'll ever do. And I know it is the right thing. I've tried the 'on my own' thing. Didn't get me very far. So here we are. Headed out on the road again. Another St. Louis drive by! May the Lord protect us, provide for us and give Dr. Dobbs wisdom as we move forward in our journey.

Laura's Feet in September, January, February and Today

As we prepare for our trip to see Dr. Dobbs this weekend, I have been thinking some of what might happen when we are there. I know he'll examine her and go over our options with us. And I've assumed she'll come home with casts so I've been preparing her for that. I also decided that I needed to document where her feet were so we have a record here of where we were once again before we recast, IF we recast.

Getting a good picture of her feet is not easy. She is constantly moving and changing her weight distribution in an effort to avoid having to use her muscles to stand still. And when you finally get her to stand still, you can get several pictures of her feet that all look different due to the way she stands. However, I persisted and we have something to go by. These pictures are a pretty good indication of the way her feet look most of the time. Sometimes they look worse, sometimes much better. Consider these an average.

Here are some pictures from today:




Here are some pictures I took of her difficult foot a month ago and sent to Dr. Dobbs so he could see how she'd begun relapsing once again. You need to look closely to see that her heel has more tissue on the inside than it does on the outside and the very slight 'lean' her scar is developing once again:




And here were her beautiful feet the day after we removed her cast. They were so straight!!!



We don't know what will happen on Monday, but we do know that what we've done so far has had a tremendous impact. Here were her feet before we started seeing Dr. Dobbs in September. You can see just how pronounced her heel varus was and how high her arch was:




Again, we don't know the outcome yet for Monday but we do know that we're making progress and that perhaps, if we catch it soon enough, we can keep her feet on the right path long enough that they'll decide to stay put.

The Clubfoot Saga Continues Right Along With Shoe Shopping!

When Laura was released from her last round of casts and we set eyes on those perfectly straight little feet, it was all I could do not to cry. Tears of joy. Lots of them. I dreamed of buying shoes - lots of shoes - and totally enjoying life with just some SMO's to deal with for awhile. But as you might assume, it was not to be.

Within two weeks, her straight little foot was once again leaning the wrong way. Her heel varus will not stay corrected. I don't believe it is as bad as it once was, but it definitely isn't straight any more. However, she is not in pain again. And she's already outgrown the need to have her SMO's. She runs around the house like a champ from the moment she gets up until we put her to bed again that night. Her foot does seem to get tired when she's walking a lot without the SMO's so I use them anyway when she's wearing any type of shoe. Yes, there are some definite benefits and we are making progress. It just is slow going right now. And I find that not knowing what lies ahead is a very frustrating place to be.

We head to St. Louis again this weekend. Dr. Dobbs will be seeing us bright and early Monday morning at 7 AM where we'll discuss our options from here and most likely put her in another set of casts. I find myself wondering what new thing the medical community will learn from treating her. And I wonder just how gentle and understanding she'll be because of all she's been through.

I also keep wondering what it is that I'm supposed to learn from all of this besides how to drive to and from St. Louis with my eyes closed. Well, sort of. :) I'm sure there's something that I'm supposed to learn yet and I just haven't concurred it yet. Perhaps I need to keep relearning how to let go and let God handle it but I keep thinking I do that in this situation. Hmmmm... maybe there is something to that 'in this situation' thing... But what else? Perhaps I need to learn how to just be happy no matter what or to learn new research techniques to help find the answer or ???? I don't know. But I'll keep on keeping on until we solve her dilemma.

Meanwhile, I have discovered some great shoes and am dreaming about a few more. See Kai Run shoes work great with SMO's - that is what she's wearing in the picture. They are made wider than normal shoes so they fit and look completely normal on. No stretching over the inserts or not having the velcro strap reach where it is supposed to. I love See Kai Run shoes! We also discovered a pair of boots from Target that fit over them and we've been wearing those a lot. And the older style of Preschoolians fit great over SMO's, too, as long as you take the shoe insert out. But her Preschoolians are getting too small so it is time to find some new ones and I'm not sure their new style will work. But I'm going to try anyway if I can find a bargain. I keep wanting to buy something that fits and will go with some of her clothing that isn't pink, but since we are facing an unknown, I'm just browsing now and will buy something when I know what we have to deal with in the future. So I keep looking, and Laura is drooling and proclaiming "OH those are SOOO CUUUUUTE!" at every other pair. I fear she'll be fascinated with shoes for the rest of her life. But then that's not so bad. I'll just teach her to shop bargains!

She's Cast Free!!!

On January 24th and beginning at 5 AM, we trekked across our great land, through the snow and snain, waiting patiently while an accident was cleared off the highway, past the Candle Factory Outlet Store, by all of the signs directing us to Abe Lincoln's birthplace and right to St. Louis Shriner's front door. I felt some relief at arriving on time, but the question of what was to follow made me a bit nervous.

Laura was fully expecting to have her casts removed and new ones put on. I was fully expecting to walk out cast free but knew that reality might fall some where in the middle. At the very least, I expected talk of an AFO to come up. Or even a mandate to wear her SMO's all of the time, long after Laura would have felt the need for them.

Laura did her usual fussing as they sawed off her casts. Then I spent some time massaging her legs and cleaning them, just in case they decided she'd need more casts. And we had her feet photographed so they had some documentation of her progress at that time. We even got to visit with Shannon, her hubby and Ava, her daughter, who was being cast that day to recorrect one foot. Laura visited with Ava and spent some time coloring while we waited to see Dr. Dobbs. When it was our turn, Laura walked back across the cast room with Dr. Dobbs watching from the side and Mommy silently praying for a cast free return home.

And it seems all is well!!! Laura returned home cast free, with a directive to return in a month or so for a check up. Meanwhile, we're to use her FAB 12 - 14 hours a day which means just for nights and naps for her. We can also use the SMO's as we see fit and he thinks they are a good idea to keep her feet from rolling over too much as they have a tendency to do. But most of all, he said he thinks she looks great. And she does! The Lord answered our prayers and her foot looks wonderful. Even Merri Jo, her PT, says it is better than she's ever seen it. I am so thankful for good Drs who are willing to try casting on older children instead of heading right to surgery. Dr. Dobbs has earned our respect, our friendship and our admiration as he worked with us over the past four months to see that she's able to walk correctly without further surgery.

Here's a comparison of how her foot has progressed.

Our initial picture sent to Dr. Dobbs in September of 2007:


Here's how her foot looked at the end of the first series of casting. We were thrilled with the progress but things still weren't completely corrected. Her tendency to slop over and roll was still very strong and we wondered if it could ever really be corrected.


Here are Laura's feet today. Notice how straight her heel is!!! And it still looks that way today!

Back to St. Louis We Go

As I finish up the laundry and begin packing once again for our two day blitz to St. Louis, I find that the prospect of taking the casts off makes me absolutely giddy. I realize that there is the possibility that he'll put another set on but that is a very small possibility. The greater possibility is that he'll take them off and tell us that there are more issues than casting can tackle and we have to head in a different direction for a more permanent fix. But whatever the outcome, I just can't wait to have them gone.

Gone. Off. No more hot pink legs. I just can't wait.

I can't wait to give her a bath. To know that she's all clean from her head down to her toes. I can't wait to know that when she gets food in her hair, I can wash it out that night in the shower. Or to put on pants that don't have to have legs wide enough to stretch over those bulky casts. Or that are long enough not to ride up them as she struts around the house. I can't wait to be able to put her on the potty without worrying that her casts are cutting the seat up and giving germs another place to hide. Or to know that her pull ups aren't being torn by the casts as we pull them up and down over those suckers. I can't wait to have her climb the stairs all by herself again, knowing she can do it alone. Or to have her put on her pants again because she can bend her knees as needed. Or to be able to walk next to the shopping cart instead of in the back of it because her casts are too big to get her in the seat. And I can't wait to put shoes on her feet. Real shoes. Shoes that fit and that match better than her constant tube sock companions at the moment.

Yes, the casts are a pain when you are three, going on four. And while I know that we're doing the best we know how to do to help her, I'll be glad to see them gone again. At least for awhile.

And while I'm dreaming of cast-free legs, I'm also praying that they've done what they were supposed to do and the Lord healed her through them. Please Lord. Heal her. Today.

Another St. Louis Drive By

This past weekend we drove back to St. Louis, spent a wonderful evening with Nana, Uncle Mick and Aunt Nancy, and then headed in on Monday morning to see Dr. Dobbs. They removed her first casts and then after he examined her, they put on another set. Dr. Dobbs believes this will be her last set of casts and he'll remove them next Thursday.

My opinion of Dr. Dobbs has not changed. He is a wonderfully understanding, competent, thorough Doc who listens to you and treats you as one of the partners in your child's care. I am hoping that we'll have some time next week to discuss her 'fat pad' which I think might really be fibrous tissue that seems to be preventing her foot from staying corrected. I'm also looking forward to bringing her home in her night-night shoes instead of another set of bright pink casts.

Laura handles it all so wonderfully. She didn't complain about her casts this time at all, and is as mobile as ever having started to walk on them while we were still at the hospital. She's a trooper and wonderfully resilient. I'm so proud of her!

January Clubfoot Updates

I so wish I didn't have to give updates but alas, it seems we're going to be in the updating business for awhile yet. This past December we enjoyed some time without casts, knowing that more were probably on the way. Sure enough, December 27th saw us adding the 'bright pink leg warmers' back in to our lives. Laura took it with grace and acceptance. Mommy and Daddy not so much. :) We know that we have several more ahead of us and that while Dr. Dobbs can put her foot back in to alignment so he knows that casting will work, keeping it all aligned in her difficult left foot is the challenge. I guess we'll just keep praying and wait to see what happens in February when her last casts come off this time.

I snapped some pictures about a week after her new ones were put on. As you can see, she has a full leg corrective cast on her left, difficult leg. She also has a half, maintenance cast on her right leg which makes mobility a much greater probability. She gets around just fine walking but has to keep moving in order to stay up straight. Balancing without holding on to something is difficult so that's why she balances against furniture when she's playing. She's even managed to go up and down the steps with this set of casts - a feat she's very proud of! Since Merri Jo can't work much on strengthening her feet and legs while they are in casts, she's working on strengthening her trunk muscles so perhaps she'll come out of this with that improvement as an extra blessing!

Meanwhile, I am preparing for at least an SMO on that foot meaning Laura will want one on both for that balance. Just before Christmas I discovered that See Kai Run shoes fit over her SMO's quite nicely. And I hear that crocs with the nylon stretch top fits nicely over them, too. While I wish she'd not have to wear anything, at least she can have some cute shoes anyway. If she has to wear an AFO, I'll be working through that one for awhile but this, too, shall pass.

I will continue to pray for our own little miracle. Please join me.

Clubfoot Saga Update

Last week the final cast came off in the initial series done by Dr. Dobbs. We can't thank him enough for all that he's done and how wonderful her feet are coming along. At the moment she's wearing her FAB for much of the day, getting a little time out each evening in order to relearn how to walk and to stretch her legs a bit. We'll start letting her have more time out as she gains confidence in walking once again.

When we returned to therapy on Monday, Laura was refusing to walk and really didn't want to stand up much, either. Our PT suggested that we encourage her to stand at a table that was high enough that she couldn't bend over it at her waist. Not having such a table meant that Poppy's talent for pulling a rabbit out of a hat, or in this case coming up with something Laura could use was quickly put to the test. This is what he produced, in just a short evening mind you.


When we went back for our second session of PT today, Merri Jo helped me take some pictures to share with Dr. Dobbs so he could see her progress and let us know if we would need further intervention or casting right now. Here is the most important picture we took today.


Let me contrast that with the one taken of her feet before Dr. Dobbs started the casting process. You may remember that we were facing bone surgery in order to correct what was diagnosed as 'heel varus' in about a year or so. Dr. Dobbs suggested casting to recorrect the feet instead. I think it is working!


In the past we've used SMO's to help her with stability, and then to keep her foot from getting any worse. It also seemed to help her be less tired when walking a lot. This morning our PT asked us to put them back on her to see if it helped her with stability again as she learns how to walk after spending a month in casts. She's standing in them at Poppy's table just before we left for therapy. And here she is in them at therapy. You'll note that when compared to her standing without them, she's much more relaxed and doesn't hyperextend her knees. I think we'll be using the SMO's for awhile longer.




All in all, we're quite pleased with her progress and look forward to buying normal shoes some time soon!

The Casts Come Off!

Secretly, for the last or so of casting I had a private countdown going. Every time there was some difficulty dealing with a 3 year old in full double leg casts I'd do a quick tally and remind myself that there was only so many days, so many hours and so many minutes left until she'd be cast free again. I guess I'm selfish but I just wanted to give her a bath!!! And not so secretly, Laura said several times that she'd prefer to keep the casts on. I think she realized she got preferential treatment, including extra television hours, and she wasn't about to let go of that without voicing her preference. Last Monday, common sense and Mommy won out. Our wonderful PT, Miss Merri Jo, removed her casts so we didn't have to drive to St. Louis just for that. You'll note that Laura wasn't nearly as excited about the whole thing as I was. :)

Here she is getting started:


And here she is in the midst of the stress:




And finally! Done and back in tights!!!

The Second Drive By

We drove in to St. Louis for our second visit to Dr. Dobbs and, of course to see our family. Nana had hot soup bubbling on the stove for us, and Carol and Charles came over for a quick visit, too. As usual Laura took over the place, gimpying around, and in general making herself at home. She even kept Carol busy 'reading' to her as they looked through a catalog. It was good to see them and it was nice to relax at Nana's instead of a hotel.

Our visit with Dr. Dobbs was relatively uneventful. They cut off her first cast and then applied one to each foot so she has two hot pink legs for the next two weeks. She handled herself pretty well but really didn't like the cast saw. However, it goes quickly and she just sat there wiggling her toes for awhile after her foot was free.

As I've stated before, Dr. Dobbs and his staff are wonderful. Very kind, thorough and they really do make you feel like you are the most important patient at that moment. But what happened shortly after her cast was cut off just amazed me more than anything so far. The nurse who cut off her cast cleaned up the table where Laura was sitting and then disappeared with all of the cast parts they'd cut off. I thought that would be it for awhile as we waited for Dr. Dobbs. But I was mistaken. In a minute, the nurse reappeared, warm wash cloth in hand. She very sweetly washed Laura's leg down and made sure that there were no little cast pieces/shavings stuck anywhere they shouldn't be. I just sat there crying. Every single time we've had casts changed using a cast saw - and believe me there have been a LOT of them - I always end up cleaning her up with wipes as I change her diaper to get rid of all of the little shavings and so on that are left. Never has a staff member helped, or even brought a warm washcloth. I realize this is something little, but again it just shows how much they care about the patient there.

We aren't sure what progress is being made so I hope this Monday gives us a bit more to go on. I'll be sure and update you when we get home. Meanwhile, here are some pictures of all of us as we enjoyed Nana's hospitality.

Laura and Carol 'shopping' in the catalog:


Jonathan's opinion of my taking pictures:


One of many of Matthew's attempts to avoid the camera. I'm thinking that this might be one of the last times he uses this maneuver. After all, this isn't his best side:


Nana, making oatmeal before she sends us off for the morning:

She Casts a Crooked Shadow

Laura only has one full leg cast on this week, bent at the knee. Yesterday she finally felt confident enough to take off across the room walking instead of crawling. I'm thrilled that she doesn't need to stick her hands out to steady herself much and that she's willing to try something even though she was unsure. Here she is in all of her gimpy glory!

St. Louis "Drive By"

As I prepare to do a second St. Louis "drive by", I realize I haven't updated you on the first one. Life since last Sunday has been interesting to say the least and exhausting would be giving it to you straight up and without any sugar coating. Life is what it is these days but I'm happy to report that I've gotten two nights of at least 6 hours of sleep - IN A ROW! :)

We took off from home by 8 AM last Sunday and had a wonderful drive through the sunshine. We arrived at my Nana's house quite a bit earlier than we expected and I was privileged to have an chance to spend time talking with my cousin Elizabeth while she calmly worked on dinner in the kitchen. Over the next hour or so my cousins Dave and Kevin arrived, Elizabeth's husband Jason came and my Aunt Nancy and Uncle Mick showed up as well. Dave's son William also came over to greet the family and it was a good evening no matter how you look at it. Not only was it good to be sitting around Nana's table again, but seeing family I haven't seen in a long time was such a wonderful thing. And it provided just the diversion we needed as we faced our first visit to Dr. Dobbs the next morning.

Monday morning arrived bright and early. We got all of us up, fed, dressed, packed and back in the car by 7 AM St. Louis time. We arrived at Shriner's early and we were taken back to meet with a variety of Drs and nurses without much of a wait. By the time all was said and done, Dr. Dobbs felt that Laura's feet could be corrected by casting again and that he'd be putting on the first cast then. His plan is to cast her left, more difficult foot initially to stretch out her cavus and flatten her very high arch some. Then, next week he'd cut that cast off and start correcting her heel varus and in general, recasting to correct. On that same day he'll start the casting on her right foot, initially to stretch her cavus and flatten out her arch some, and then a corrective cast or two. I failed to ask whether a tenotomy will be necessary for one or both of her feet but I'm not sure he could have answered that then. I think he'll need to see how her casting goes.

We waited for awhile in the cast room with other parents. There were several infants just starting the casting process and one older boy who was about 15 mos old. He was in casts that were cut off and left without any new ones but I didn't catch why he was there. All in all, the other parents made the wait quite nice and we took a poll to see who had come the farthest. This past week we won. I wonder what next week will bring. :)

Dr. Dobbs, his Resident, his Fellow, his very kind Nurse Kristina and a group of other nurses and support staff entered the cast room a little after 11. What happened next can only be described as a well-oiled machine carrying out a familiar routine and easing any difficulties for children with tremendous talent. They had Laura plastered from her knee down quite quickly and the Dr. Dobbs left us while another group of nurses applied fiberglass over the plaster and took the cast up over her thigh in traditional Ponseti fashion. In just a few minutes, we were free to go. I was amazed at the obviously common routine. They really do have it down to a science there.

As soon as I made our appt for next week, we packed everyone back in the car and started home. We spent most of the day driving in obnoxious rain with Laura fussing because she was in pain. It is my opinion that her muscles were spasming and tylenol wasn't totally effective at helping. I think I'll plan better for her discomfort this weekend. She made an already difficult drive much more challenging and my heart ached for her.

By Thursday this week Laura was walking on the toe of her cast and getting around just fine here at home. I am working on getting a child's wheelchair for her for next week as we'll be in double casts and her movement will be much more limited. She is still very protective of her cast but I think she'll get over that as they progress.

Overall, I feel a bit like life is passing by in a fog again. With the two day drive by traveling combined with five days at home where we're trying to keep up with school work, the laundry and life in general, I think we might just miss preparing for Thanksgiving this year. I wonder what Christmas will be like, too. But I can't help but think that we're doing what is best for Laura and that makes it all worthwhile. If she can avoid surgery, and even avoid wearing any kind of insert/AFO/SMO/whatever as well, I'll be so thrilled I just might hug Dr. Dobbs harder than he's ever been hugged before. Well, okay. Perhaps I'll take his staff a bucket of our famous Caramel Corn instead, but you get the drift.

Dr. Dobbs is a calm, confident Doctor who really does have a heart for our kids feet. I know that we'll come out of this better than we went in, and for that I'm extremely thankful. My Mom and I are having a nice time catching up together and talking about all of the little things we don't always have time for. And the boys are enjoying the change in routine - at least for the time being, and the unlimited gameboy time they get in the car. I don't know how many times we'll be making this trip yet, but we'll be going for at least the next two weekends. Please continue to pray for wisdom for Dr. Dobbs as he treats Laura, and for safety and provision for travel for the rest of us. With gas at almost $3 a gallon, Christmas is going to be mighty slim this year. *sigh*

Ever onward.

St. Louis, Here We Come!

Well, it is official. We'll be heading to St. Louis on the 21st. We have an 8 AM appt. on the 22nd and then we'll be driving home again. Ten hours each way. Ten hours with a 14 year old and a 10 year old who like to get on the other's last nerve. Ten hours of "I'm hungry. What did you bring to eat? What do you mean there aren't any cookies?" Ten hours of "Are we there yet?" Ten hours of wondering what the outcome will be and remembering to turn it back over to the Lord again and again. Ten hours of Laura fussing because she's strapped in to her car seat and she can't lay down to sleep.

And that's just one way...

On the way home, since I'm expecting her to be in at least one full leg cast, it will be ten hours of wet plaster. Ten hours of her fussing because her foot and leg are immobile. Ten hours of having to hold her hand to comfort her, even when she's in a deep sleep. Ten hours of noises from gameboys. Ten hours of "Mom! He touched me!" Ten hours of "Mom! He is being selfish!" Ten hours of "Mom! I have to pee! Now!" Ten hours of watching agriculture whiz by us along with the same cars and trucks we'll think we saw as they passed us up as we slowed down at the last rest stop. Ten hours of time with my Mom. Ten hours to talk and listen to her wisdom.

When we get home, we'll be here for at least a week before we do it all again. And when we get home we'll know more about what Dr. Dobbs thinks the outcome for her will be long term. That's what makes my stomach churn. So that means I have 10 days of reminding myself that the Lord is in charge and that HE is the one who created her feet and he'll take care of it. That's just more in a long line of learning to turn things over to him instead of chewing on them myself. Perhaps the Lord gave Laura to us for more reasons than I've realized so far. Perhaps she is here to provide the Lord with opportunities for me to grow in him, to learn to depend on him, to remember before I start sweating that he's always in charge when I let him. Perhaps that is what parenting is all about in the first place. After all, parenting definitely isn't for pansies!

Ligaments and Tendons and Bones, Oh My!!!

Sometimes when dealing with yet another Laura issue I find myself wandering down the same path once again and peering into the darkness to see just where it will come out in the end this time. We're wandering down the path of 'relapsed club feet' once again. So far this path has led us to more casting, longer shoe wear, surgery followed by six weeks of casting, SMO's and my absolute all time favorite advice from one very kind but misguided Dr. to just relax. I wanted to ask him if he'd relax if it were his daughter but then I realized he is a trained surgeon. He wouldn't think twice about cutting her bone because that's what he's trained to do. But I'm not willing to go there if we can avoid it. So far while traveling down this path we've been to the Cleveland Clinic and out to the University of Iowa more times than I can count. I can see in my minds eye with intimate detail the waiting room of the pediatric surgical department at the Clinic as well as the patient rooms where we've spent far too much time for such a short life. Now, we're staring down the path again. But this time the path might just lead to St. Louis. Who knew?

When we put Laura back in her night-night shoes, I really felt like we needed to have a consult with someone willing to take another chance at helping us avoid surgery. I've sent several additional emails to Iowa and have not heard a response and assumed that they are quite busy there after the Symposium. But I needed answers. And I wondered if the silence meant that they just didn't know what to do or perhaps that there was nothing more they could do. The thought made my stomach churn.

Then another issue dawned its mighty head. Sleep. Don and I desperately needed uninterrupted sleep. After a week of waking up throughout the night as Laura cries because the shoes are uncomfortable, I had a gut feeling we needed more than just uninterrupted sleep. We really needed her feet corrected before the shoes would be comfortable. As I put a call in to the wonderful shoemakers office, I hoped beyond hope that they could do something for us. Something, anything to help. The girls suggested we contact Dr. Dobbs in St. Louis if we hadn't heard from Iowa soon. My stomach churned even more as I sat down to write Dr. Dobbs a letter. As I attached pictures of her feet and sent it off by email, the pit of my stomach seemed to drop even further into oblivion. What if he, too, just said to relax until she was old enough for painful surgery. What if there really was nothing that could be done?

All night last night I tossed and turned. My dreams ranged from the weird to even weirder. I imagined all sorts of things involving feet. Big feet, little feet, fat feet, skinny feet. All in clunky, ugly shoes because they couldn't wear normal ones. All on legs sitting in wheelchairs because they hurt too much to walk. *sigh* Once again an opportunity to turn my stress over to the Lord took me hours to figure out. By then morning was already peeking out from behind the darkness, willing us to get up and face another day of uncertainty.

As I approached the computer to check my mail, my stomach sunk deeper still. What if there was no answer. What if the answer wasn't good. Before I wiggled the mouse I decided that I'd have enough. I very quietly prayed and told the Lord I would be willing to accept whatever answer he provided. I half expected for Dr. Ponseti's email to be there after that one. But no. Dr. Dobbs was up bright and early, and he answered my questions. He offered to see her and concurred with our thoughts that recasting was the way to go.

Part of me is relieved. My 'Mommy Intuition' isn't faulty. But part of me is still a bit nervous. There are still several unknowns for Laura and those wonderful feet. Can Dr. Dobbs figure out how to help her? Will we be able to avoid bone surgery in a few years? Will Laura get used to the shoes once again and sleep through the night undisturbed? I don't know the answers to all of that but I am willing to let it go for now. Laura slept four hours today for a nap without her shoes on. Four hours. From a child who barely sleeps one these days. *sigh*

So we will continue to pray for her healing and the Lord's provision as we plan for a trip to St. Louis. Since our family is there, our trip will be filled with more than just Dr visits. And that's all good. However, please pray for wisdom for Dr. Dobbs as he evaluates and prepares to treat her feet to help us prevent surgery in the coming years. I'll keep you updated as I can. Meanwhile, I'll work very hard to just relax and enjoy it every time I hear "Mommy. I need you" coming from her room every hour on the hour through the night. Really I will. :)