An adventure.

Back in February or March a woman who volunteers in Ava’s music class mentioned that she thought there was something a bit off in Ava’s gait when walking.  The woman works with Early Intervention and we set up a time for the PT and LSP to come to our house and do an evaluation.  Ultimately the PT thought that Ava’s seemed to have a 25% delay in her gross motor skills and she recommended that we make an appointment with a pediatric orthopedist to get x-rays.  At Ava’s 18 month appointment, our pediatrician agreed that it wouldn’t hurt to get the x-rays and she sent over a referral.  When I called to make the appointment in early May, the earliest they could get us in was August 1.  They don’t keep a wait list but I was invited to call as often as I’d like to try to snag a cancelled appointment.  I managed to do just that and we got in with a specialist on June 1.

Knowing how much Ava hates doctors we were definitely dreading the appointment.  Kevin went in with her for the x-rays and I waited outside the room since I couldn’t be exposed while pregnant.  Her poor little cries (screams – girlfriend has a healthy set of lungs) were heart wrenching.  We met with the specialist that we were scheduled to see and he, who actually specializes in spines, very quickly referred us to one of his colleagues because Ava’s issue was with her hips.  It was clear from the x-ray that Ava’s left hip was completely out of the joint, a form a hip dysplasia.  Hip dysplasia is hereditary and I had it (my pediatrician was apparently amazing and caught it at 2 month check up.  I went into a brace at three months and came out of the brace, good to go, hips aligned, at nine months old).  It is also most commonly seen on first born children, particularly girls.  Our pediatrician did all the hip tests, etc. as part of Ava’s wellness checks, but this dislocated hip eluded her.  Ava hit all her physical developmental milestones within a normal range, so we didn’t think there were any issues.  We attributed her gait to the literal toddling of a toddler.  I’m glad that the woman in our music class said something to us because otherwise this could have gone on for years without treatment.  The earlier the intervention, the better, like with most things.  Ava isn’t currently in much or any discomfort when walking because she is so light.  But as she gets older, the dislocated hip will undoubtedly lead to other problems: arthritis, back issues, a pronounced limp, etc.  For these reasons, after a lot of research and questions hurled at the pediatric orthopedist, we’ve decided to proceed with a surgery.

The surgery is scheduled for the end of June and the surgeon will attempt a closed reduction and if that is not successful, move immediately on to an open reduction.  Ava will be under anesthesia for either/both.  Following the surgery (while still under anesthesia) they will put her in a hip spica cast.  She’ll need to wear the cast for 12 weeks (they’ll change it out at 6 weeks – more anesthesia) and then wear a rhino brace for potentially a year.

To keep this post from getting too wordy or emotional – and because this is just how my mind works – I’m going to break stuff down into lists.

Things That Terrify Me:
1. My baby being in surgery
2. So much anesthesia for such a little human!
3. Seeing Ava in pain after surgery and casting
4. The possibility of re-dislocation and therefore a need for further surgery/intervention

Things That Worry Me:
1. Spica cast care – diaper changes and avoiding pressure sores and skin issues especially
2. Keeping a very active toddler entertained during 12+ weeks of immobilization
3. Carrying a 21+ pound toddler wearing a bulky spica cast up and down the stairs in our two story home (where all bedrooms are on the second floor) through the second and third trimesters
4. Timing.  If all goes as planned, Ava will move from the cast to the brace when I am 37 weeks pregnant.  I delivered Ava at 37 weeks, 6 days, so the timeline is tight.  I really would like for her to be in the brace and have a bit of time to adjust to that before we bring a newborn home.
5. Restless nights – Ava will need to be repositioned regularly to prevent sores and it also will take some adjusting for her to be able to sleep comfortably in the cast

Things That Make Me Sad:
1. It makes me sad that the pediatrician didn’t catch this earlier.  It makes me sad that I didn’t push her to check Ava’s hips more carefully, knowing my own hip dysplasia history.  Both of these things used to make me angry.  But now I’m just sad knowing that maybe this issue could be behind us.
2. As I watch Ava running around the house, climbing stairs, exploring her tip-toes, kicking her legs, it makes me so sad to think of immobilizing her for 12+ weeks.  She’s not going to understand why or how – she’s just going to know that she wants to be an independent little person who can explore her world on her own two legs.  And she won’t be able to for a bit.

Things That Make Me Thankful:
1. While this is will be a challenging experience, it is – in the grand scheme of things – a little bump in the road.  This is an isolated ailment that is very treatable.  Ava will be dancing in a ballet recital in no time or kicking a soccer ball (or both!) around in no time.
2. Everyone says it – this will be more traumatic for Kevin and me than it will be for her.  Kids heal quickly.  They are resilient.  They adjust to a new normal so much faster than adults do.  I will always remember this season; Ava will not.
3. We have been so impressed with the quality of care and responsiveness shown by the staff at Carrie Tingley thus far.  Every person we met was very helpful, understanding, empathetic.  The surgeon encouraged us to email him with questions and he has responded to each email within an hour of me sending it (sometimes in the late evening and/or weekend).  A friend’s neighbor is an orthopedist in town and he said that this doctor is great and has had excellent results with this surgery.
4. We have such a fantastic support system to help us out.  Family near and far and friends here in town have been so supportive and ready to jump in and help however they can.  These people are such a blessing.
5. There are a lot of resources out there – info about the surgery, info about recovery, info about caring for spica casts, ideas for entertaining a toddler in a cast.  One of my best friends put me in touch with a friend of hers who has been through this experience with her child, and a blog friend (hi Nicole) posted a blog post on my request about her experience when her 2.5 year old broke his femur last winter and had to be in a cast.  It has been really nice to get practical advice from “real” people who have tips to share and be able to interact with them in real time.

I’m sure there is more, but I’m going to end this here for now.

It’s easy to become bogged down at the thought of all the challenges – known and yet to be discovered – ahead, but I’m trying to shift my outlook and think of this more as an adventure.  On any adventure there will be obstacles, but there will also be great things.  We’ll get to work together as a family and come out on the other side stronger and closer.  I think Kevin and I will both be really focused on being present with Ava –  just before she gets a sibling and our attention is forced to be more divided – and that will be something that we look back on as a blessing years from now.  Her verbal vocabulary has been growing by leaps and bounds over the past couple of weeks (I hope to post more about this soon because it truly is amazing, but my two favorite phrases she uses now are “belly button” and “sound machine”.  They sound so cute coming from her sweet little mouth!) and I hope this experience will help her learn to communicate even better.  This is as good a time as any to start working with her on her Latin.  ;-)  She won’t be able to say, “Hand!”, grab my hand, and lead me to what she wants/needs.  I’ll miss that and there will be days that I just want to fast forward to the next season, but I think the time will be better spent focusing on taking it one moment at a time.   Your thoughts, prayers, well-wishes, however you send good stuff into the universe are appreciated as we prepare for this adventure.


12 thoughts on “An adventure.

  1. Make sure you connect with Nicole! You guys are good parents and I wish all of you strength, courage, patience, and definitely ice cream! :)

  2. I am so sorry that you guys have to have this type of adventure:( However, your outlook is so good…so much better than mine would be! Ava is so fortunate to have such caring parents! She is so strong and will take this little road bump in stride!

  3. When I read the title, I was full of anticipation for a pleasant adventure, when – wow. What a curveball. This was a beautifully written post, Amy, about something difficult. Your use of the word “adventure”, and how you’re processing it all prove what a strong, wise woman and mother you are. You have the best mindset to deal with this, and you will weather these clouds on the sky with grace. Like you said, Ava won’t remember any of it, and for the time being she will adjust to her new normal quickly! Kids are so resilient, and much tougher than we think.
    I’m thinking of you and your family, and sending you all the good vibes!

  4. Oh, Amy! This is so hard, but you’ve got such a great outlook on it! I guess the challenge will be keeping that outlook on days when things get tough. The only “surgery” Jake has ever had was ear tubes, which was very easy compared to what you’re doing, but I was still so nervous! And the paperwork they make you sign when you put your kid under anesthesia is unnecessarily terrifying, I think.

    I know that she will handle it like a champ! Prayers for you and your whole family! <3

  5. My heart breaks for you… I know that you will 100% get through this and that although there will be tough moments, there will also be victories! But I also know the pain of seeing your child go through an experience similar to this. (I cried like a baby whenever Brady had to get x-rays, because – like you – I was preggo and not allowed to be in there with him). It’s SO hard!
    But yes, be encouraged in knowing that Ava won’t remember any of this. (Brady already doesn’t remember his cast experience). And in the end, she will physically be so much better off. I’m ALWAYS here if you need someone to vent to or chat with. And I will be praying!!!

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  7. You guys have been in my prayers! I know this has to be so hard and so emotional. Especially the feelings of wishing this had been caught earlier. But it sounds like you have made peace with that. Just know that I’ll keep on praying for you guys during this time!

  8. I will definitely be praying for you, Kevin, and sweet Ava. Reading this just breaks my heart, as I know it has to be so emotional for you and Kevin. Ava is so resilient, and I know you guys will get through this. I know that doesn’t make it any easier, either. Especially with you bringing home a new babe soon.

    I know Nicole, our fellow blog friend, did a SPICA cast care tips post recently, so that would be a great resource! God is amazing how he works things like that, isn’t he?

    I wish I could come over and visit and help when Ava has her surgery and just give you a big hug. I’m praying!

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  10. As usual, you are amazing at making lists. And also an amazing mother. And she’s an amazing little kiddo. I think this will always be hard. You’ll always look back on this time and it will be a hard time. Nothing can sugar coat it or make it instantly better. But you are doing the right things in seeking support and remembering the good things. Some day you’ll look back on this and it will still be hard, but you’ll be a stronger family because of it. Part of Sonnys OT has always been challenging him to sit still and do an activity – maybe I can share some ideas.

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