One Year Later

This week was the one year anniversary of Caroline's big surgery. I thought I'd mark that major milestone with a blog post. A year ago, we were dealing with pain meds, learning how to change a diaper with a spica cast, contemplating sponge baths and trying to figure out how to transport her & make her comfortable. We were facing a long, hot summer full of casts & surgeries, and void of swimming, sandboxes and the beach. We are so grateful those days are behind us, and to all of you who got us through them. I could go on & on, but you know what they say, a picture's worth a thousand words. One year ago: Today:

First Steps, Take 2

Well, she did it!!! Last night at church Caroline was walking all over the gym holding on to our fingers. I decided to bait her by holding her paci out in front of her--and it worked. She took 2 tiny, wobbly little steps all by herself! They were the best little steps I've ever seen. "The LORD has done great things for us, and we are filled with joy." -Ps. 126:3

More Good News

Caroline is brace free!!! About 10 days ago Dr. Martus called us & said she could stop wearing it during the day. We were surprised but happy, and have really enjoyed not having to mess with that thing while she's awake. Today she had another x-ray. The hip looks great, and he said we can stop using the brace altogether! Hooray! It is so hard to believe she is contraption-free, for the time being anyway. Maybe now she'll start sleeping through the night again... He also watched her "walk" (holding on to my hands) and said it looked good. Her left hip is still very tight & stiff--he called it "contracture"--but said it's to be expected & will loosen up over time. We're hoping now her mobility will continue to increase so she can start preschool on Aug. 13 (yay Miss Julie!) Please lift up a prayer of praise on our behalf for this wonderful milestone.

Movin' On Up

Thought I'd give a progress report...Caroline is doing great, improving every day. The orthotist modified her brace, although that proved to be no easy task. The spreader bar between her legs went from about 12 inches to about 4! When our doctor saw it, he had it narrowed even more, down to about 3 inches. So she is in a much more normal position now and can even fit in her carseat without padding, as well as a restaurant highchair and (fingers crossed) a grocery cart! At the brace check last week, Dr. Martus also said we can start to gradually increase her time out of the brace during the day (whoopee!). And, when we go back on Aug. 5, if all looks well she will be down to wearing it only for nighttime & naps!!!! She can now crawl normally, instead of the army crawl, and when not wearing the brace she has started to pull herself up to stand. Today she even climbed about halfway up the stairs! It was a wonderful sight, I was crying and we were all cheering for her. It's amazing what a big deal the little things can be. While this is all great news, Dr. Martus has been clear that she is nowhere near out of the woods as far as further surgery down the road. Your prayers are still coveted for this. Till next time...

Checkup

Long time no post, eh? Well, Caroline had a checkup today, I can't believe it's been almost a month since the cast came off! Thankfully, her x-ray looked great & the dr. is very pleased (praise God!). He was surprised at the width of her brace, though, and arranged for her to get a narrower one. Apparently it's fine to be wide (it's not going to hurt the hip), but it is probably the reason she hasn't started pulling up/cruising. He expects her to be able to start doing that fairly quickly in the new one. We will get it Thursday & let everyone know how it goes. Keep those prayers coming!

Independence Day

First of all, I have to say that as a former English teacher this formatting problem is completely maddening! Apparently it is a Blogger-wide issue, so please excuse my inability to properly space my paragraphs. Grrrrrrr... That said, the real purpose of this post is just to put up some pictures of July 4th, so here they are:

Splash splash swim swim

The new Ilfeld brace Swimming!!! She had an absolute ball.

She's doing very well, getting to where she can move around quite well in the brace. Still loving bathtime. Her skin is clearing up nicely, just one small area left that is still healing. The stiffness has subsided drastically--her right leg is completely normal & the left is much better. So, we are just plugging away till our next appt on July 15, where we're hoping she'll be allowed more time out of the brace during the day.

We are still praying fervently that a) she will not need further surgery and b) that she will be able to start preschool in August as planned.

Love to all,

Melissa

A Picture's Worth 1000 Words

The cast removal Houston, we have leggies! Check out the awesome tan line. Daddy holding her for the first time. Happy girl on the way home from lunch. It was so odd to see her legs! Bath time, yay! Today, at the table coloring, in the brace. More to come! Love to all, Melissa

Oh Happy Day, part 3

On the way home from the orthotist, we stopped for lunch. She sat in a regular restaurant high chair, and loved it. Afterwards in the car, she discovered her toes all over again! It was just precious. Then she realized she could bend her leg & reach them! She was delighted to have those toes to play with again. I actually cried. Again. Back at home, she enjoyed her long-awaited bath. She was a bit unstable sitting up, but soon regained her confidence & splashed like a pro. Every time we got ready to end the bath, she'd say "no, no" so we let her stay in for quite a while! Putting her diaper back on, getting her dressed & re-donning the brace were all challenging. She is quite stiff & sore, and doesn't much cotton to having her legs moved about. Although I was thrilled to put shorts on her, we may have to hold off on that for a while! By this time, we were all exhausted & we put her down for a nap. The big girls were so excited to see Caroline they could hardly stand it. In fact, they kept asking if they could wake her up from her nap! We are slowly but surely adjusting to this newest change. Caroline is mostly quite happy and is already pulling herself along on the floor. She loves being able to sit up straight and join us at the table. We are hopeful that the soreness will fade over the next few days. In the meantime, we are just enjoying having our squishy baby back. It is amazing how much you appreciate being able to properly cuddle your baby after being denied it so long. Pictures are next, I promise!

Oh Happy Day, part 2

After the x-ray, Dr. Martus checked her skin & incision sites. The one on her hip has been covered by the spica, so today was the first time we saw it. It was a good thing I didn't see it before now. It's a "good" scar, very nicely done, but it's about 6 inches long! Looks like they almost cut her leg right off. Next he talked about the brace & said basically she needs to wear it full time for the next 4 weeks. She can have it off for baths, and he said some swimming is ok (hooray!) but "we want her in the brace as much as possible." She is also permitted to do anything she's comfortable with while in the brace, including crawling or walking. We go back in a month for another x-ray. Off we go to the orthotist, where we wait for about 90 minutes because lo & behold, they don't have the right brace! In the car on the way over, I was floored at the sight of her in her carseat, sitting normally, legs and all. She began patting them and saying "legs, legs." While we wait, we sit Caroline at a kids table & chairs to color. I was amazed! She sat right up like a pro. We stayed close to keep her from toppling but overall, she did great & was so proud of herself. After talking to Dr. Martus, the orthotist says he'll order the right brace (an Ilfeld), which will be in next week. In the meantime they'll give us a similar one called a Rhino cruiser. I am more familiar with this one, I've met lots of people online who've used it. In fact he was quite impressed I knew the name of it! So he fits the brace, which she hates. I will post pics of it later, but basically it's foam & plastic cuffs around her thighs which fasten with velcro, and a waist strap. We head to the car and spend about 20 minutes trying to fit her in her carseat. We have had it padded so she'd fit in the spica, so we adjust the padding, change the straps, every trick in the book, but no good. She won't fit. Although the brace is much smaller than the cast, her legs are positioned wider. We go back inside to ask for help, and are told it's ok to remove the brace while in the car for now. Continued, with pictures, tomorrow!

Oh Happy Day

Our happy day is finally here. I am at a loss for words (a first for me!) to somehow convey all of the overwhelming feelings we are experiencing. So I guess I'll save that for later, and for now stick to the facts. We arrived at the hospital at about 8:30 a.m. and were taken back to the cast room shortly. They gave Caroline headphones in a (mostly futile) attempt to block the noise. Fortunately, or not as the case may be, we were familiar with the cast room & the saw due to a repair trip we made on Tuesday. Yes, 3 days ago we had to have the cast trimmed due to a pressure sore near the edge of the leg. No, our ultra-conservative surgeon would not allow the whole cast to come off 3 days early. :) Caroline was fine with the saw for about 45 seconds, then she screamed for about 3-4 minutes until they finished with the saw. I think curiosity took over and she watched the tech use giant scissors and pliers to cut & pry off the cast. They basically cut it down the sides and took off the top, then told me to pick her up out of the bottom half. Voila! The whole thing took about 5 minutes. Ironically it was very hard to pick her up because a) we are used to the cast now and b) we were terrified of hurting her. She was very limp & floppy and seemed quite light! Her poor skin took a beating though, several very raw areas and of course your typical stinky, dry, dead skin. Lovely isn't it!? She was not thrilled with having an x-ray but fortunately the results were "great," according to our surgeon, which for him is roughly equitable to an "amazing" or "outstanding" to the rest of the world. Thank you God. I'll split this into two posts due to length. To be continued...

Contentment

Back at the beginning of this journey, I posted about how I was in a Ladies' Bible Study on the topic of contentment. I went on to list the numerous challenges - many of them bizarre in nature - that members of my small group had faced during the study. Now as we near the end of at least this chapter, I cannot help but take another look at this concept of contentment. Throughout this time in the spica, one word has been repeated more often than any other: content. Countless people have remarked about how "content" Caroline seemed in the cast. I finally noticed the other day that the word being used to describe my sweet baby was the same one I had studied & pondered & prayed about at length. It is humbling, to say the least, to realize that your toddler is better equipped to teach you than you are to teach her. Indeed, we have marvelled along with our friends at the peace with which Caroline accepted the cast, the joy she has sustained throughout, the perseverance she has demonstrated. Her cheerful good nature has not waned, as mine always does when faced with the slightest disappointment. I have wrestled with the concept of contentment, just not able to quite understand what it means. My questions about it are many; I'm probably just looking for a loophole. But none of my intellectual pursuits have come close to enlightening me the way my daughter has. God knew we needed a model; that's why he sent his son. Caroline has personified contentment for me in a way I will (hopefully) never forget. I have learned the difference between happiness and contentment. I can confidently say she has been content, although she's not always been happy with each circumstance. Most glaring, though, is the inclusion of trust in the mix. It's an ingredient I would not automatically equate with contentment, even though it seems obvious now. I believe a huge part of Caroline's ability to do so well has been the fact that she trusts us. She has reveled in our affection & love for her, always of course, but especially since the surgery. She knows we love her & will help her when she can't help herself; we'll comfort & reassure her when she's sad. She believes us when we say, "it's gonna be ok" and "it won't be like this forever." She knows she's not alone. And he said: "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. - Matthew 18:2-4

The Waiting Place

"...for people just waiting.

Waiting for a train to go or a bus to come,

or a plane to go or the mail to come,

or the rain to go or the phone to ring,

or the snow to snow or waiting around for a Yes or a No

or waiting for their hair to grow.

Everyone is just waiting.

Waiting for the fish to bite or waiting for wind to fly a kite

or waiting around for Friday night or waiting, perhaps, for their Uncle Jake

or a pot to boil, or a Better Break

or a string of pearls, or a pair of pants

or a wig with curls, or Another Chance.

Everyone is just waiting."

- Dr. Seuss, "Oh! The Places You'll Go"

This is a frustrating place to be.

I have lived long enough to understand that life is too short to wish away any days, and yet here we are. As much as we have tried valiantly to carry on normally as much as possible, sometimes we just can't. And during those times, this passage echoes in my ears. It feels strange to cheer the passing of each day, to joyfully put another "x" on the calendar, because I realize that at the end of these 12 weeks, 12 weeks of our lives will be gone. Not just the cast, but the rest too--my baby will never again be 18, 19, 20 months old. It's such a dichotomy; we want June 20th to come so quickly, and yet that seems wrong in many ways.

Reflections aside, my apologies for the long delay between posts. It's just that, again, there hasn't been much to report. Caroline is doing wonderfully, she zips right along on the floor if you put her there (or anyplace on her tummy). Baths and diaper changes, both of which involve tummy time, are becoming increasingly difficult as she tries to slither away!

You can tell, though, that we are all nearing the end of our tolerance with the cast. Caroline is getting somewhat more frustrated, though she's still quite content (more on that later). I am growing weary of the pseudo-baths & macgyver-type diaper changes & cast repairs. This 2nd cast is more difficult than the first; we are having a hard time with the moleskin padding & waterproof tape that's used around the edges. Last time we barely had to do any replacements or repairs, this time I'm having to fix something at every diaper change. Not to mention, I'm sick of carrying her everywhere--she's heavy!!! And mostly, I'm anxious to hold her close & give her a real good snuggle. The big sisters are out of school & chomping at the bit to go, go, go but it's sweltering and Caroline is just too hot. They've asked every day if we can go to the pool. Bless them, they are being so patient, but they're just little kids!

All of this to say, we are thankful that we have just 2 weeks to go! We are officially on the countdown. And, ambivalence or no, it's not a moment too soon.

Oversight

I re-read my last post today and was appalled at the MAJOR oversight. In all my ravings about the new cast, I forgot to give credit & thanks where it is most definitely due--to our gracious & faithful Abba Father. I am so amazed at his constant provision & presence, not only when the news is good but also when it is not. But today, let us give thanks for the good news he has allowed to come into our lives. Melissa

Cast Change!

Today was the big day--cast change! It went beautifully and we were home by 10:30 a.m. Caroline and I both took nice long naps :) She was fussy after she woke from the anesthetic, but is back to normal now.

Our surgeon said her x-ray/arthrogram looked really good, he was pleased with how her hip was seated in the socket, and that it felt very stable upon manipulation. That is really great news; it is not always the case with hip dysplasia kids.

Just to mark the change, and for something different, we went with a bright purple cast this time. It is almost exactly the same as the first one, except the bar is curved. This is due to the fact that I teased our dr. about the last bar (it was very close to the diaper area), so he made a special effort to make changing easier for us!!! Bless him, it was so sweet, but just goes to show surgeons lose their sense of humor somewhere along the way... hello, I was kidding!

However it is a lovely cast, as spica casts go, and so clean & shiny I am tempted to lick it!!! :)

He did say her skin looked great--one of the best he's ever seen! My reaction to that was a mixture of pride and severe shock. It was a relief though, I've heard horror stories about the terrible sores found under the cast.

So, we go back in six weeks and 1 day to have the spica removed. She will be awake that time, and will be fitted for her brace that day. She'll be in the brace full time for 4-6 weeks, although we'll be able to remove it for baths (hooray!!) and hopefully some swimming. After that, we'll see, it just depends on her x-rays. Most kids are weaned very gradually from the brace, so that's what we're expecting.

For now, though, we're just enjoying our nice clean girl and celebrating the halfway mark.

Thank you all for your thoughts, prayers and words of encouragement. They sustain us.

Love,

Melissa

ps--be sure to see the previous post, I just added lots of pics.

In recovery

Walking around in recovery

Back on the beanbag again!

Pictures

Here are the girls in the beautiful dresses my friend Cindy made. Note the customized spica-friendly bloomers on Caroline!

The other day, in a fit of nostalgia, I got out the shaving cream & let Caroline go crazy. I'm not the only one who remembers doing this at school, am I?

Then we "cleaned up" by having a tea (water) party. (I covered her in a waterproof floor mat)

For her last bath in the pink cast, I let her play in the sink (yes I cleaned it first!). I've been scared to do this for fear of getting soaked, but I figured the cast is being changed in a couple days anyway, so why not give it a try? She had a ball splashing around and my fears were unfounded, so we'll definitely be doing this more often!

Happy Mother's Day!

Ok, not sure if anyone is still reading this, but if you are please accept my apologies for the long silence... There has not been much to report as of late. We are doing fine and Caroline is plugging along. She had an ear infection last week--that was much more traumatic to her than surgery! She is finally getting more comfortable with being on her tummy, she's scooting around more. Other than that, it's just status quo. Tomorrow, though, marks a major milestone: CAST CHANGE! Hooray! Now, I know you are probably thinking, big deal, what's so great about that? But let me tell you, just stop for a minute and think about what is involved in having a toddler in a body cast for 6 weeks, including diapers, no bathing, and scooting on the floor. Now you might be able to relate a little bit! Of course it's also a big deal because it marks the halfway point for the Spica cast. Six weeks down, six to go!!!! She will go under general anesthesia tomorrow because applying a body cast requires her to be completely still. They will also give her a good bath (hallelujah!), do another arthrogram (dye x-ray) and manipulate her hip to evaluate the progress. All this to say, it is very minor compared to the first surgery, but it's still considered surgery and has risks. Please keep her in your prayers. I have lots of pictures to post, I'll try to do that tomorrow along with an update. Melissa

Oops

Just a quick note to say I'm obviously having trouble with formatting! For some reason, I can't figure out why some parts are double spaced & others aren't... my apologies....

Coasting

The title pretty much says it all--we're just kind of coasting right now, riding on the energy we have received from so many people in the form of prayers, encouragement, help, gifts, food, etc. But, I fear we are losing altitude! Not that the help has tapered off--it hasn't--but I guess you could say we are settling in for the long haul. The adrenaline has worn off & we're all pretty tired.

Things are going absolutely as well as we could hope, but it's still rough. Caroline does best when we are out & about rather than at home, but there is only so much she can do. When we are home, I don't get much done, because she is so dependent on me. And to add insult to injury, the lovely allergy season has hit Nashville full force! Blech.

Ok, enough whining. I do have some good news to report. The swing we ordered came in this week, so Caroline is able to resume her favorite pasttime. Hooray! It was so pitiful before, every time her sisters were outside she'd point at her old swing & say "Swing? Swing?" Here she is in the new one:

I have been meaning to write for a while about the amazing level of love & generosity we have been receiving. I honestly cannot express how grateful we are. This would be completely impossible without all the help we've gotten and are continuing to get. Just to name a few: we are getting dinner 3 times/week, rides to school & back for the big girls, visits, babysitting, 2 months worth of lunch fixins for the girls, a brand new "tricked out" wagon, coffee gift certificates, grocery store runs, packs of diapers, flowers, balloons, gift cards, notes & cards & gifts galore! Ellery & Lauren have gotten care packages of their own so they don't feel left out.

One sweet friend who is a talented seamstress whipped up some custom bloomers to fit over the cast, AND made 3 matching dresses for the girls! (I will post a pic later.) People have brought bean bags, yoga mats, hiking backpacks and other equipment to try to help find ways to make Caroline comfortable. The other day, a group of Keely's co-workers at Regions brought this to him:

This is a full-size toy box, y'all! Stuffed to the gills with goodies--and I took this picture after the girls had already raided it some. The lid wouldn't even close.

Another group of Regions folks donated a TON of money to pay for housecleaning for us!!!!!! Seriously, how do you say thank you for this kind of stuff?

There is so much more, I just can't list it all. It is so awesome how God provides!

So, if you see us, and we seem to being doing well... now you know why.

Checkup

Happy Friday everyone. We had our first follow up appt. with Dr. Martus today. Her x-ray looked great & he was very pleased. The nurse also said Caroline looked great & smelled great so I must be doing a good job!

The one piece of semi-bad news is that he pushed off her cast change date. His office had scheduled it for May 5, which was only 5 weeks post-op instead of the 6 we expected. When he realized that today, he said he'd have them change the date b/c he'd rather wait the full 6 weeks. Bummer. I had kind of been hoping we'd end up with 2 5-week casts, but it was not to be. So, now we await a new surgery date (the cast change is considered surgery b/c she has to go under general anesthetic).

BUT thankfully all looks good and in 9 weeks, 3 days we should be cast-free!

In the meantime, Caroline has made her big debut at church where she enjoyed bible class again. Here she is last Sunday: