Spread the Word!

I just read a brilliant tip for babies in spica casts located on Maggie's blog A One and a Two!!! I'm sharing the idea for anyone who has wandered onto my site because it's so fantastic! She has found success using diaper covers instead of 2 diapers. Sidenote: depending on the type of spica cast, some people use 2 diapers, one smaller and one larger [to cover and act as a catch-all]. You'll note on my site that we used an adult incontinence pad (always fun to buy as a 30 year old...) and a larger, outer diaper.

I find the idea of using a diaper cover extremely economical and earth-friendly, and, and let's be real, more importantly [because spica casts are NOT CUTE], diaper covers are sooooo adorable these days! I won't lie, I'm a little jealous that we didn't come up with it or read about it, but that's why I'm opening my mouth and spreading the word!

Maggie's post on diaper covers is located here. Check out her blog, too, as she manages TWINS (!), one of whom is in a spica. Thanks, Maggie! Stay strong; I'm rooting for you and Charlie! And Davey, too!

Hip Baby Blues No More!

We had quite a week last week! Olivia celebrated being cast-free for one year on August 26, 2010. For any new readers, Olivia was diagnosed with bilateral developmental dysplasia of the hip when she was 5 days old. It was so severe, doctors had to correct it with open-reduction surgery, culminating in a spica cast(s). It's hard to remember what that life was like, so here she was on her 4 month birthday in spica cast #2 (always happy!).



Well, I couldn't let the day go by unnoticed (or un-celebrated!), so we headed off to the Please Touch Museum to see OLIVIA! in person.

My Olivia was thrilled, despite the [second] picture that appears otherwise. I, on the other-hand, need some modeling tips.

And to put it all in perspective, one year to the date, we had her re-eval with the county we now live in to determine elegibility for continued physical therapy [which she had qualified for last fall in our previous county of residence]. Olivia was a bright shining star and excelled in all areas, including motor skills. There was 0% delay (which was no surprise to us, having watched her move around all summer). I'm including a July video where she tried to imitate gymnastics (televised) to emphasize how far she's come.

So that's it. We feel tremendous gratitude to Miss Janet, her PT, Dr. B. (her pediatric orthopedic surgeon), and all the nurses and staff at Nemour's (DuPont location), as well as the countless family and friends that prayed for her and supported us. I don't want to count my chickens but it looks like this chapter in the book of Olivia, mine, not Ian Falconer's, is complete. Period.

Toddlin'

So Frank and I have decided that Olivia is now, officially, a TODDLER! She spent the entire weekend walking everywhere.

We find this especially awesome considering that tomorrow is the 1 year anniversary of her surgery.

Enjoy!

Stepping Stones

Today, on her daily school report, Olivia's teacher wrote, "Olivia enjoyed playing outside and even stood up to take a few steps on her own."

My heart tingled. :-)

Brace FREE!

We have much to celebrate in our household! As of about 10am this morning, Dr. B. deemed that Olivia does NOT NEED THE BUCKET BRACE! She is livin life sans any braces, harnesses, or casts. We are incredibly excited and a little nervous for our peanut's hips, but it's been an amazing and joyous day. We've done nothing but eat cake (look for an upcoming blog on cake soon) and other deliciously, unhealthy foods. Well, not nothing totally -- Olivia also had her motor eval with the county's early intervention program. She's qualified for physical therapy (PT) services, so we are on our way to motoring all over the place.

We'd also like to just say thank you to everyone out there for your continued support and prayers. God gave us an unexpected yet delightful surprise today. Here's what Livie had to say on the matter (you'll understand the picture even more when I post a video of this... probably this weekend sometime so check back!):

Reflections

Six months ago today, the on-call pediatrician picked up on Olivia's hip dysplasia. When an ultrasound confirmed it, we were thrown into this crazy hip world. Since being diagnosed, Olivia has endured quite a bit -- a harness, a surgery, a spica cast and now this brace! She's handled everything with smiles, and whether or not it's related, she has become quite a mellow, happy-go-lucky kid. We are thankful every day for such a perfect being. This Wednesday, we will enter a new chapter in the book; the county is coming out to do a motor evaluation to determine if Olivia needs physical therapy. There is a pretty good chance she will since she has yet to reach any motor milestones. Frank and I are both okay with this. It's important for our sanity that we focus on the positive. Plus, seeing and hearing of all the children with far worse conditions does help put things in perspective. And, it will be pretty awesome when she finally does sit up or roll over without any help.

We've had to do a lot of self-education on developmental hip dysplasia (DDH). Unfortunately, most of this comes from other parents. Our orthopedic pediatrician, Dr. Richard Bowen at NeMour's Clinic (DuPont Hospital, DE) gave us an "informational" introduction to his book on DDH... the target audience was surgeons. I read the whole thing -- some parts twice. I googled a lot of words but now know what an acetabular is. As it turns out, Olivia's hip were pretty severely dislocated. On a scale of 1 - 5, they were a 4 according to Dr. B. The first course of treatment, the Pavlick Harness, works pretty well for most children, but not our Livie! To be fair, the right hip did great; the left, not so much. So, Dr. B. did an open-reduction surgical procedure where he clipped her tendon to make the hip more flexible in order to set it in place. She was then put in a spica cast. Over the next 11+ weeks, she went through 2 casts. We got pretty used to them, but honestly, who gets "used" to a baby in a cast. There was much rejoicing when the thing finally came off.

Through it all, we've met some pretty amazing people -- others whose children have DDH, some severe, some not. Our support system grows with each new encounter, which helps tremendously. Tell another mom you spent 20 minutes changing a poop diaper, and you get a look of shock or horror. Tell a mom of a kid with DDH in a spica cast the same thing, and you get a kindred spirit. We've learned so much from these people.

There is no medical advice I can give to parents with a new diagnosis. I am not a medical professional and can only tell our story in the hopes that it will help ease anxiety. I can, however, share what we've learned and what helped us along the road.

1. Ask questions. Lots of questions. You are your child's voice and advocate. Talk to doctors, nurses, other parents, everyone. We knew the county provided free early intervention services, but we never thought about our insurance company. We learned that through another mom.

2. See your child, not the diagnosis. This is very hard when your child just happens to be in a contraption (especially if your child is 5 days old), but I promise, when you stop seeing what is wrong, it gets easier. Don't let this define who your child is.

3. Make friends. Don't be afraid to start up conversations with other parents in the waiting area. These are the people that will laugh with you when your child smells like poop all the time. Promise.

4. Remember, treatment for DDH has fantastic success rates. We hear stories all the time from parents whose children needed treatment as infants and are now running and jumping sans problem with others their age.

5. Your child will never remember this but you will never forget it. Keep it light. The time passes faster when you do.

Let Freedom Ring!

I was hoping to have these up earlier, but my computer kept freezing... aaah, modern technology. Anyway, the visit was a success and after 11 weeks, 2 days and three-ish hours, Olivia is now cast free! Frank and I were far more excited than she was as you will soon see. The Livster was once again a champ. Her hips look fantastic, according to Dr. B and the x-rays. She is currently in a brace, which I'll try to photograph a little better later, and we go back in 7 weeks. At the next visit, she may be able to live brace-free for a good portion of the day, but we won't count our chickens yet. As of right now, it's brace livin' 24/7 except diapers, bathing and the car seat (but not to exceed 3 - 4 hours). It was quite a momentous occasion for our family, though I'm sure Liv will not remember a thing about it. I'm posting pictures from the day in story format. :-) Thank you, everyone, for your thoughts and prayers.

By the way, we ran into Caroline and Baby Taylor at DuPont, which was wonderful. I wish I had taken a picture of Taylor and Olivia -- instant friends, laughing and smiling at each other. We are happy to announce that Taylor is harness-free and doing great! I think a visit in the works.

And now the day through photos...

We were on our way to Delaware, and Olivia had this "daddy face" on. She was generally happy throughout the first part of the ride, so this face made me laugh. It was like she knew...


Here is Olivia and I before the old cast came off. This is the last picture of the her in the spica cast (*single tear*). Notice how happy I am and how bored she is... and apparently my hair was bigger than I thought.

And this is the outside of the spica cast immediately after the tech sawed it off Olivia. By the way, she was hysterical throughout most of the de-casting.


Mmmm, this was the inside of the cast. I guess we didn't clear out the poop as well as we thought we did. Saying that it smelled bad doesn't even begin to describe it.


Here is Olivia completely cast free!! Frank and I were the only ones smiling as you can see.


Poor thing -- she screamed throughout most of the event. We had to clean her (you saw the inside of the cast, right?) after the cast came off and before the diaper and brace went on. The amount of caked on poop was mind-blowing. At one point, Frank had to pick her up so I could clean off her bum and back, and he said the image of my face is burned into his mind for all eternity. Lol.


And here is the full-body, cast-free, new brace picture of Olivia! Clearly still not happy...


And we traded in our loaner car seat (no cash for clunkers deal but still) and were finally able to use our own. We are both amazed at how big she now is in it!!


That's it. Olivia is doing much better now in her brace. Again, I thank everyone for your thoughts and prayers.

Tummy Time!

I've been meaning to post this for a while, but I needed Frank to be home to take the picture. I finally figured out how to do tummy time with Olivia! Whoo hoo! As anyone close to me or reading this blog will tell you, this has been really tough for us with Olivia in the spica cast. I tried many different positions and "props," but she had such a tough time with all of it. Her neck muscles just couldn't comfortably support her head in many of the trials. It only took me about 9 weeks, about a thousand tries, and the stinkin' cast comes off on Wednesday, but I did it! Hopefully this information will help someone else. And, to be truthful, we've already seen a difference in her behavior with only about a week and a half of doing this. Initially, she fatigued after a minute or two, but tonight she stayed upright for a good 5+ minutes. I try to do this about 3 times per day for a good 5 minutes; this depends on her temperament because I don't make her continue if she's crying. As my behavior analyst coworkers know, if we end before she starts crying, she'll associate the time with fun not tears.

We use my exercise ball (which is sitting out because I use it all the time... ha. ha.); it works well because it sinks a bit, molding around her, and doesn't push her legs into the cast (her feet/legs dangle a little). I have to put it in a "corner" -- between the wall and the end table -- so that the ball doesn't roll away from me. Because I can't hold up any toys while she's on the ball, I sing to her. This actually also reinforces her looking at me (which gets a smile or "good job" from me for further reinforcement). She's doing great with this -- much happier and is even starting to push up on her arms. The pictures are a little fuzzy, but you get the idea. PS. If you have a cat as playful as our Monty, be on the lookout for paws tapping at little feet.

Save the Date

AUGUST 26TH!

Bad news: Olivia's cast did not come off today.
Good news: Olivia's cast comes off August 26th.
Bad news: Instead of a cast, she'll have to wear a brace.
Good new: The brace can come OFF for bathing and diapering!

Olivia can take a bath! Yaaaaayyyyyy!

(In future news, Frank and I will be partying like an old married couple pretending to be rock stars on the evening of August 26th.)

New Adventures in the Second Spica Cast

Inspired by Kirsten and Baby Emory's recent adventures, we decided to try some new positioning for Olivia to get her off her back! She's been unhappy with the bean bag of late so we tried putting the boppy around her for support. She really enjoys it! We've discovered that with this new cast, we can move her legs so that there isn't much weight on her knees. We also thought it would be cute to showcase her recent love of TV shows like Yo Gabba Gabba!, Wonder Pets, and Sesame Street. Don't worry, these are only watched in those tough moments when she seems unsoothable or when we'd like to eat with both hands.

This second cast has been lovely because it ends just above Olivia's knees. We've enjoyed seeing her chubby little legs and watching her kick away. There were some new problems managing this cast; specifically, with her legs being exposed, we were afraid that she would get cold at night (especially now that she is in her own bedroom with working air conditioning). We ended up buying the Circo Bobby Socks aged 6 - 12 months at Target because we were able to pull them up almost all the way to her knee. Then we discovered the best product: (also at Target) the baby legwarmer! Incredibly overpriced at $10 for just one pair, we sucked it up and bought what has been a lifesaver. They are just perfect for keeping her thick little legs warm (hence the name, right?). We only wear them at night or when the room seems particularly cold so as to prevent wear and tear (who can afford spending another ten bucks??). They had some adorably trendy designs, and Olivia just looks super cute in them!

Doing the Math

I've had some bad cast moments lately, so I decided to do the math to reassure myself. Numbers sometimes make me feel better, so here goes...

Olivia was born April 10, 2009 (we will consider this Day Zero).

Day 1: Pediatrician notices that her left hip is out of the socket... possibly the right too.
Day 2: Pediatrician again checks her hips and feels that the right is also out of the socket.
Day 4: We have an ultrasound done of Olivia's hips
Day 5: We meet Dr. Bowen at DuPont who confirms that Olivia has developmental dysplasia of the hip. She is fitted for a Pavlick Harness
Day 55: Dr. Bowen tells us the harness isn't working and she will need surgery. We get to take the harness off until then. We are harness-free for 5 days.
Day 59: Open-reduction surgery, tendotomy, and spica cast -- we spend the night at DuPont
Day 94: Olivia gets her second cast which ends just above her knees.
Day 98: Olivia is moved to her bedroom and is now sleeping in her crib.

Next Dr.'s appointment is August 11th or Day 122... he may determine that the cast can come off then or we may need to go back. We've tentatively scheduled the appointment after that for August 20th or Day 131. Hopefully the cast will definitely be off then. At that point, she will have had the cast for just 72 days. If we add the time spent in the harness to this, it's a total of 122 days. Essentially, if the spica cast is not removed until August 20th, she will only have had 9 days of life where her legs were not in some sort of contraption [full-time].

Percentage-wise, that is 93% of her life spent in the harness and cast. It's easy to look at that and be distressed. HOWEVER, if she lives to be 80 years old or roughly 29,220 days, the percentage of her life spent in a medically-necessary contraption is only 0.4%. In fact, by that point in her life, she won't even remember the stories we've told her.

All the worried energy that we've spent on this, and it only works out to be roughly 0.4% of Olivia's life. That's much better.

Well Wishes

Please join our family in praying and thinking of Baby Emory, his mom, Kirsten, and his family as they experience closed reduction surgery for his hip dysplasia and a subsequent spica cast. You are in our thoughts today and as he progresses to being cast-free!!

Fiberglass Leiderhosen!

We went to DuPont on Monday so Olivia could get her new cast. They had to sedate her because, well, you know, it's difficult to tell an infant to hold still. Anyway, the good news is that the new cast ends just above her knees! We can see her legs again (well, from the knee down), which is super cute since the cast now looks like red, fiberglass leiderhosen. I still don't have a picture of this; the ones I took at the hospital show Liv covered with a blanket, so I'll have to get on that. Olivia once again was a champ throughout the whole procedure. Dr. Bowen did an arthrogram (a dye-test that acts as a joint x-ray, showing cartilage and what not that does not come up on a regular x-ray) while she was under the anesthesia which showed that her hips are set well and the cartilage is growing around the bone. This is great, but unfortunately it looks like Li'l Miss Liv will be in the cast for at least another 4 - 6 weeks. Keep your fingers crossed that it's on the lesser side of that! We'd love to get in some swimming before the weather turns.

We did not have to spend the night but the day was incredibly long because of this as Olivia had to have a post-procedure MRI (to ensure the hips were correctly set in the new cast) as well as the fiberglass overlay. This is the second time that Olivia has had anesthesia, and it's the second time that she has woken up horribly from this. She screams this awful hoarse scream for awhile, nurses a little bit, and eventually takes her pacifier. Mind you, this same pacifier is rejected at home, but at the hospital, it's the equivalent of Linus and his blue blanket. Anyway, when we finally got through everything, she passed out for a bit in the car, drank milk at home, and took a very long nap. We had to give her baby Tylenol that day and the next because the old cast really did a number on her legs. The skin was incredibly raw -- imagine really bad skinned knees and that was what Liv's legs looked like. There were even some open wounds! Today she didn't need the tylenol except this morning; we gave her more before bed because we cleaned her legs with soap (just Johnson's) and water as per instructions. All in all, her sleep pattern at night has stayed the same, but during the day, she's now taking her long nap earlier. I think this was jump-started by the sedation, but it's really rooted in her going to bed earlier and waking up earlier. The girl sleeps through the night, so Frank and I are okay with these minor shifts. Other than that, she's on her way to being perfectly healthy and the perfect baby.

Here we are on our way to the hospital (she's actually laughing):

Here she is in pre-op (that's the paci!) waiting to be whisked away (how cute is that gown?!):

And here we are in the Post-Anesthesia Care Unit... ugh, the most awful thing to experience - not being able to comfort your child effectively.

Thanks for all your prayers and well wishes! We are on our way to recovery!

And the survey says... BRAND NEW CAST (on Monday)!

A quick update before I head off to bed. Olivia gets a brand new cast on Monday! Thank goodness because this one is starting to stink! She will have to be sedated, which means another overnight stay. Other than that, the doctor says her hips look great. Check back Tuesday for pictures of the new cast and the hospital visit as well as an update on how much longer Miss Livie Lu will be in her cast!

Everything for a reason

I've been thinking a lot lately how everything happens for a reason. For instance, when Frank and I decided to have a baby, we were hoping for a May/June birth seeing as how I often have much less contracted work in the summer (due to the break). We are apparently very good at getting pregnant, since Olivia was conceived in the first month we tried. Initially, we were worried about budgeting and finances, but I began to like the idea of having a longer maternity leave than I initially imagined. Then, when Olivia was diagnosed with bilateral hip dysplasia, which led to the surgery and subsequent spica cast, I realized how lucky I was to have the extra time. If she had been born in June, I would be headed back to work right in the middle of the spica cast stretch. As it stands now, she will hopefully be cast-free in early August, and I will head back to work in September. The timing is (cross your fingers) ideal.

And then, I think about all the trouble we had breastfeeding initially. In the hospital, she wouldn't latch on or suck. We had to teach her how to do it, and in the meantime, we fed her formula from a bottle. I pumped until she got the hang of it, and slowly we weaned her off the formula. Again, we were lucky that there was no nipple confusion, and eventually I was able to both nurse and give her a pumped bottle of milk. This would seem like no big deal, but I realized how wonderful it worked out when we were driving to Delaware for her appointment when she was only five days old. We sat in the waiting room for a few minutes, but when we were called back to the room, we waited for about 20 - 30 more minutes. She had to be fitted for the harness, but since her insurance wasn't finalized (since she had just been born and Frank hadn't talked to HR yet), it took about another hour to get it all settled. When all was said and done, we had driven 45 minutes for a 2+ hour appointment followed by an hour drive home. I remember thinking thank goodness she takes a bottle. In hindsight, I couldn't imagine being in a situation where I was exclusively breastfeeding and wondering about where I could feed her in private.

Maybe we are the right parents for this because we are our usual upbeat and positive selves. If a certain percentage of children are born with hip dysplasia, and an even smaller number require surgery, then I'm okay with the fact that it's us and not someone else. We are a short-ish drive away from one of the best doctors on the east coast for this condition. Our schedules are flexible. So I keep telling myself it is what it is, and God has a plan. I may not see it now, but I'll see it soon enough. It won't be like this forever, and when it's over, we'll be stronger.

Harness and Spica Cast Clothing!

Thank you, Rebekah, for this information!

This is a website that sells baby clothing for kids in Pavlick harnesses and Spica casts! Very helpful!

Baby Hip Wear

Enjoy!

Today's Doctor Appointment

Olivia had her two week follow-up with Dr. Bowen today. Good news! Everything looks just as it should. Her hips have set into place, and he is just looking for the bone and socket to develop. Little Miss Chubs gained some weight (which is really a good thing!), so he needed to put spacers in her cast. This meant the cast woman, Amy, taking a buzz saw like thing to the cast covering Liv's legs and adding in small spacers. I won't lie -- the buzz saw was a tad intimidating. There's definitely this feeling that your child's legs could be sawed off if anyone moves the wrong way. Olivia, in usual Livie fashion, just laid there, chillin. If I can get a good photo of the spacers, I'll add it to this post later. Otherwise, they look like the plastic pieces that hold up the cardboard characters in boardgames. After they got positioned in the newly cut cast, Amy taped up the edges again and then added more red fiberglass on top. So, in all actuality, the spacers just look like weird things jutting out of the cast -- all Frankenstein-esque. As usual Olivia is handling the more spacious cast like a peach. We are two very lucky parents!

We have another appointment in 2 weeks to monitor her progress and growth. In all likelihood she will need to be recasted (which requires sedation)... I'm actually looking forward to a new, poop-free cast (selfish, I know). Make sure to check back for the update!

We met two wonderful couples today who have daughters in Pavlick harnesses. We would like to wish Caroline, Luke and baby Taylor as well as Rohina and baby Sadaf positve harness thoughts. Your beautiful daughters will be hip-perfect in no time! Please keep our family updated on yours!

Adventures in the Spica Cast

Meet Super Livie! Here is a cell phone picture of Olivia in her spica cast. It goes all the way up to her chest with openings at her belly and the bottom for diapering. She's super cute either way, but here are some things that we've discovered have been made difficult by the cast. I'm listing them below as well as our current solutions.

1. Where do we put her? She no longer fits in the bouncers due to how wide the cast makes her legs. So during the day, we have to figure out where to set her when we can't hold her. She's cool lying on her back on the activity mat or chilling in the crib/cradle when I need to go to the bathroom. However, when we are laying low in the living room, we can't hold her all her the time. Our current solution is a bean bag chair. We were able to find one pretty cheap at Target, and in true Phillies fan chic, it's a baseball bean bag. We are still working on going places -- before she could just stay in her infant carseat but not more! So, this has made attending church or eating out with Liv near impossible... although I still argue that God would rather see Livie hanging out in a bean bag chair than no Liv at all.

2. How do we clean her? Like most casts, this one cannot get wet, but additionally, the cast has a gortex lining, which wicks away moisture from her skin in an effort to prevent rashes and discomfort. The gortex is often used in sports. Unfortunatlely when it comes in contact with lotions, soaps, creams, scents, etc., it disintegrates and becomes useless. Therefore, we cannot use baby wipes while diapering. Do you know how hard it is to find totally unscented, lotion- and soap-free disposable washcloths? After scouring the internet, we found some and special-ordered. In the meantime we used paper towels -- not recommended for long-term use as they tend to shred during rubbing. But, here's a fun extra tidbit. Since I've been eating healthier (read: more fruits and veggies), Olivia's poops are sooo much more fun! So, her bum was getting a lot of exposure to water. In order to prevent diaper rash (which can't be fixed due to the ban on creams), we blow dry her bottom. Yep, you read that right. I plugged in my extra hair dryer and after her second or third messy diaper (or more!), she gets the "spa treatment." An unexpected bonus: the hair dryer calms her down when she's hysterically crying. Who knew? By the way, we also use "Mustela." This is a product that you can purchase; it is a rinse-free cleaner. This allows us to bathe her without using water. It doesn't go under the cast, but on her arms, chest, and face. There are wipes as well as the solution shown in the picture (you need to use 100% cotton pads with it -- the disposable washcloths work but also consider cotton balls and cotton wipes used in make-up removal).

3. How the hell do we do tummy time? Ok, this one we still haven't quite figured out. The doctor and nurses very nonchalantly recommended that we put blankets under her belly/chest and she'd be fine. This has only led to Liv being faceplanted into said blankets long enough to begin wailing in discomfort. Don't get me wrong, Olivia is holding her head up well when we hold her upright, but in the suggested position, there was still too much weight/pressure pulling her head down. She just doesn't have enough strength to resist all that. I tried the boppy but that was worse because it was also putting added stress on her feet/ankles. We are currently trying to combat this by holding her on us (belly to belly) but are definitely open to suggestions.

One Night in DuPont

The pediatric radiologist and staff at Bryn Mawr Hospital were rooting for her. We went each week for Olivia to have an ultrasound of her hips. Each week they would ask what the specialist said, and I would repeat his words -- always optimistic: She shouldn't need surgery as long as the bones keep moving toward the socket.

But the story starts earlier than this. Only 1 day old, Olivia was diagnosed with bilateral hip dysplasia. The pediatrician on-duty that morning in the hospital recognized that at least one hip was out of its socket, and that the other was probable but needed to be confirmed with an ultrasound. She stressed the importance of seeing a specialist quickly so that treatment could be started. And that's why on April 15th, my 29th birthday and Olivia's 5th day of life, our family drove to the Alfred I. DuPont Hospital for Children to see Dr. Bowen. He walked in with confidence and an aura of reassurance. When he spoke, his soft southern drawl made him seem grandfatherly. After reviewing the ultrasound from the day before, he confirmed what the first pediatrician saw -- both of Olivia's hips were completely out of the socket.

That visit was informational and hopeful. The dislocations had been caught very early, and the treatment is often successful at that age. We were at the hospital for over 2 hours -- getting Olivia fitted for her Pavlick harness. This would hold her legs in such a way that the femur would be slowly eased into the socket. Dr. Bowen, as with every doctor before him, emphasized that this is a completely treatable condition and Olivia would grow and develop normally [as long as we started with the harness].

She wore the harness 24 hours a day, 7 days a week. As Dr. Bowen said, "Taking it off would be like dislocating her hips all over again." We had weekly ultrasounds to note progress and follow-up visits with Dr. Bowen. Progress meant surgery would not be necessary. That is how we came to be known in the Radiology Dept. at Bryn Mawr Hospital. They were rooting for her.

But on Thursday, June 4th, our visit to DuPont was different. I knew it would be. Her ultrasounds were not showing progress. Before we left the house, I braced myself for the inevitable. And it came -- Dr. Bowen walked in the room and explained that the harness wasn't working, as sometimes happens. We needed to move forward. Olivia would need surgery - a tendotomy. And just like that, we were scheduled for surgery on Monday morning. We had only the weekend to prepare. After 7 weeks and 1 day in the harness, it came off. There was no need to wear it over the weekend as it was not effective in combating the condition. We had a harness-free Livie for 4 days. I have never been so excited to bathe a child. Frank appeared much stronger than I did.

At 5:50am on Monday, June 8th, we left our house. Olivia slept through the entire ride, check-in, wait, and pre-op procedures. And with the entire choir and music ministry at Our Mother of Good Council Church in Bryn Mawr praying for her, the doctors performed a tendotomy on Olivia's left hip. This means they made a tiny incision on the tendon in her left hip. This would lengthen it enough to gently ease the femur into the socket so that it could be casted in place. Then, it would grow and develop as it should, making any further treatments unnecessary. The procedure took approximately 1 hour... an hour that went by with the pace of a snail traveling through the mud.

When it was over, the doctor came out to update us on how it went. Everything went well. She was a champ. We could go into the Post Anesthesia Care Unit to see her. I don't know how anyone can do this multiple times. I know there are other families out there with conditions and diseases far worse than hers, and I pray for them. It was heartbreaking seeing her in the PACU. She was in a child-size stretcher/bed, covered in blankets and wires, looking ever so small. And she was wailing. Not just crying but screaming with her mouth wide open and her eyes tightly shut. The anesthesia made her hoarse, and I think that was the worst part. My heart ached to see her like this but I was so happy to know everything went well. I picked her up immediately just to hold her. I didn't care that she wasn't comforted; I just wanted to hug her. The weight of the cast caught me off-guard, but it felt so good to hear her wailing in my ear.

And this is how we came to be in the 3C South wing at DuPont. Amazingly, had Olivia been just a bit older, the surgery would have been done as an outpatient procedure. Her tinyness meant she was to be admitted. This inpatient unit was full of children of varying ages. Our initial roommate was an 8 year old girl. Her mother explained that they had been there since the Friday before and wouldn't be cleared to leave until at least Wednesday. Her daughter was experiencing problems with her pancreas. Her husband was a truckdriver and couldn't be there. She had another, 14 year old daughter had home. They switched rooms because her daughter was afraid she would wake Olivia, and when she left, she hugged me and wished me well, saying she would pray for our daughter. And all I could think in my head was that at least we knew what was wrong with our daughter. At least we were going home the next day.

There was a parent resource room just off the unit -- a pleasant respite from the sterileness of the rooms. Even though we kept the curtain pulled and moved the few chairs we were given to make our space more comfortable for the night, it was still, in the end, a hosptial room. Olivia was still wired to monitors and attached to an IV. But the resource room was softer, warmer without being overwhelming. There was free coffee/tea/hot chocolate as well as computers with internet access, thousands of books, TVs, tables and couches for lounging, and vending machines where everything was 50 cents. Rooms off the main area allowed parents to do laundry and take showers. The Ronald McDonald House provided 3 rooms for families to use at no cost. This allowed Frank to stay overnight; although, he later admitted, he couldn't sleep due to constant concern for Olivia and me. Several times that night we went to the room to get free gourmet coffee and chai tea. I became so excited about the chai tea that Frank bought me a box while grocery shopping the next day. It's amazing how such a place can be so comforting when in this situation. How this area can allow one to really breathe and carry on with life's everyday nuances. And ours is an easier plight than many others who were there. We were there for just one night. Olivia's condition is well on the road to recovery. She will be in the Spica cast for at least 8 weeks, and if all goes well, this will be just a chapter in her book. She will never remember the day and night that caused her parents so much duress. And really, that's just fine by me.