Brace Free (for all the wrong reasons)

This post is months overdue – which seems to be my blogging trend. Honestly, after our appointment I didn’t feel like talking about Hip Dysplasia at all, I’m mentally done with this. Unfortunately, Maura’s hips are not done.

Back in June, we had our follow up appointment. We had been in the brace for 20 weeks, 12 full time, and 8 more 18-20 hours a day. I went in to that appointment knowing that slow progress, or even no progress was a possibility. Sure enough, the Dr. confirmed my fears that her hips hadn’t progressed. What really dug into my heart though was that because of the lack of progress he thinks it’s “more likely than not” to need further surgery around age 2.5/3.

Then we got the news we had been hoping to hear – she can take the brace off during the day. This news was bitter sweet. Every time I see those sweet little legs, I don’t get to feel joy that she’s improving. I feel disappointment. I feel fear. I feel sadness.

We have a follow up again in September. We are hoping that walking deepens her hip socket on it’s own, but I don’t know how likely that is.

  • Above, is our series of X-Rays. Beginning with the top left image (pre treatment), her right hip (shown on the left side of the image) is dislocated. The ball of the femur is under developed and therefore seen smaller on the xray.
  • In the bottom left image (post reduction and 12 weeks cast) the hip hip is in the socket and the bone above is begging to grow downwards as we want it to. Essentially, because her other hip is healthy – we want the two to look alike.
  • The middle image is 12 weeks of full time bracing. You can see that the bone above the femur is slowly coming down, but isn’t symmetrical yet – at this point our Dr. felt 10% chance of surgery.
  • In the image on the right, our Dr. said he doesn’t see any progress. This is the image that shot our chance of surgery up. I struggle with this image. I keep looking back at it, and am convinced I see growth. I’m hoping that I’m right, and that at our next appointment it will be more obvious. Trying to stay hopeful.

I’ll leave off with some pictures of my brace free child doing brace free things. She is normal, and we’re going to let her be normal until we can’t. She will continue to do normal kid things, and we will keep pushing hip dysplasia into the backs of our minds until we either can’t, or we don’t have to.

 

Pre-appointment jitters

Maura’s next hip follow up is tomorrow (June 6, 2017). She has now been in the rhino brace just under 20 weeks (12 weeks full time, and 8 weeks 18-20 hrs a day). I was excited for our last hip appointment because I thought I knew what to expect. Our previous doctor had been very set on 12 weeks full time, 12 weeks half time as the standard protocol for treatment after the cast. Our new doctor holds different opinions on treatment. I was devastated 8 weeks ago when I expected to hear ┬áthat we were free during the days to wear cute clothes, show off our little legs, and do what every other kid does for the warmer spring months – instead I heard “She’s doing great, you can start taking the brace off for 4 hours a day!” I must have given the doctor a look of death because he immediately said “or 6, more won’t hurt…. and longer for special occasions”

I knew this was a possibility. Our doctor back in Oregon told us that many doctors hold different opinions on treatment protocols when it comes to bracing and that there isn’t any research to support the differences. And, I have searched through every research database I have access to – and he’s right – I can’t seem to find anything. :Sigh: It’s not that I wasn’t happy to have more free time, but I felt like the light at the end of the tunnel went out. Without a specific timeline, how do we know for sure when this journey will end? I guess we don’t. So here I am, trying to prepare for our next appointment. Will we get the news we want to hear? or will this journey drag on and on.

Appointment prep questions:

  1. Is her progress still in line with your expectations?
  2. How are we measuring progress? What is our end goal? (I asked this question last time and was disappointed in the response I got of “I’ve seen lots of hips and we’re just looking for more improvement” You know what I didn’t find in my research? an article that recommended “eye ball the xray and go with your gut” grrr, better ask this question again!
  3. Is the chance of future surgery still approximately 10%?
  4. Are there any activity restrictions or recommendations?

I’m sure I’ll think of more by tomorrow, but for now that sums up what I need to know. Wish us luck!

 

 

Life in the Rhino brace

We have been almost full time in the Rhino brace for about 3.5 months now, longer than we expected with quite a bit of time to go. I wanted to wait to share our experiences until we really had a grip on living with the brace, and I can definitely say it has become no big deal. I don’t like it, I can even say I hate it, but what I really hate is not being able to wear cute clothes with summer quickly approaching.

The first weeks were a bit rough. Maura was very weak after her 3 months in the spica.

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Few hours post-spica removal.

She couldn’t sit up on her own and her legs seemed to flop in every which way. One of her very first tantrums (and really one of her only ever) was when she tried to sit up and couldn’t. In the cast it was like she knew the cast was keeping her from sitting up, but when it was gone and she still couldn’t, she was really upset and frustrated – to the point of hitting her head on the floor and pulling her hair – poor kid. I ended up bathing with her in the tub for about 2 weeks, it took that long for her to get sturdy enough to sit alone. We also couldn’t fit the brace in her car seat as we were told we would be able to. The ortho did give us permission to take it off for car rides, which is great – but not fun in reality. I was taking the brace off, putting her in the seat, getting where we were going, putting it back on often in a parking lot, doing our errand and then repeating to go home, or repeating several times to do multiple store errands! We didn’t get out much during the first few weeks…

We had a follow up appointment and X Rays 2 weeks after the cast came off. Maura’s hip was looking great, very stable in full range of motion even under light pressure. Her acetabular index had gone from 48 degrees to 35 (we wanted under 30 at 6 months, and closer to 20 by age 2). Her ortho declared “Perfect Progress” and expected further improvement with the brace. Woohoo! We also brought up our concerns with the sizing of the Rhino – to which he agreed to let her try on a larger size. The nurse assumed it would be way to large, but to her surprise it fit very well. In the larger size brace Maura was able to move around a lot better, mostly due to the ability to now bend at the waist. Think – jeans that fit compared to a waist band two sizes to tight! The new size also allowed her to fit in her carseat!!! That made life a lot easier.

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A week or two post spica 

Once the sizing was right, Maura started right in trying to find her legs and get moving again. She was able to army crawl, as she did in the cast, immediately. The second day in the brace, she even pushed herself into downward-dog briefly while dancing to Sesame Street! Over the course of weeks, her knees started getting more underneath her and her crawl became more normal opposed to the army crawl dragging her legs. Though her legs don’t move individually, she seems to tilt her pelvis back and forth allowing her legs to take turns and move her forward. It took about 2 months to sit up straight, legs in front of her while in the br

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2ish months post spica

ace. I’m not sure why it took her so long, but maybe a combination of weak core and needing even more strength to counteract the pressure of the brace pulling her back. I really don’t know, but once she mastered
that her milestones really started to take off. Almost at the same time, she started not just pulling herself to stand (she actually did that within 2 weeks of cast off), but pushing on things that would move like the rocking chair or boxes. Now at 13 months old, and out of the cast for 3.5 months – she is standing unassisted for a few seconds at a time and even took a few independent steps tonight!

I think the brace is easy, but only because the spica was rough. If we hadn’t done our time in the cast, I don’t think I’d have the same opinion. But, here are some tips and tricks to make things work…

Verify that it fits properly! Ask to try on different sizes if you can. This made the world of difference for us.

  • We still use our Spica table for meals. We tried using the booster seat we used during the spica days, but found that Maura’s core strength wasn’t enough to sit up in it without the cast. Now, she can use the booster but there was a good 2.5 months that there was no way.
  • The Velcro will wear out, way sooner than you expect it to. I bought a large role of Velcro from JoAnn’s and reinforce the straps every few weeks with fresh sticky Velcro. I attach it with thin strips of colored duct take.
  • You can also extend the straps using the new Velcro or with felt. If there is any rough side of the Velcro exposed it will scratch your forearm and leave scars. It’ll also ruin any clothes (on you or them) that is woven.
  • You can use a fine comb to comb out the fluff that will immediately collect on the brace. I usually comb it well, then use duct tape to pull the remaining fuzz out. It’ll never come completely clean though – keep your expectations low.
  • Put towels or blankets under the brace if you’re going to let your kiddo sit on anything that could scratch, I keep a dish towel in my diaper bag.

 

 

Dear ONE YEAR Old Maura…

Dear one year old Maura,

(Despite being posted a month late, I really did write this a few weeks ago….)

What an incredible year! I don’t even know what to say in order to express how I feel. I’m proud of us both. I’m proud of you for persisting through struggles, adapting smoothly to changes, and accomplishing so many things in such a short time. You have shown me how full my heart, and how strong my love can be.

You started sitting up again this month! IMG_8174You’ve been able to hold yourself up, mostly by kneeling and supporting yourself with your hands, but all of a sudden you can sit up in
your brace with both legs out in front of you no problem. You’re also a pro at standing (holding on to things), and have started cruising a bit more confidently. We got you a push-dolly stroller for your birthday and immediately you were able to get up andIMG_8349 walk with it! As soon as you took those steps, a light bulb went off in your head! “I can do this!” You then started letting go of things as you stand up, trying to balance yourself. You often fall back immediately, but I love watching you try and love even more than you don’t get discouraged.

You give everyone the best hugs ever, even your stuffed animals, and your┬ápersonality gets sweeter and sweeter. You still have a little mischievous streak, but I think it’s mostly due to curiosity. If something interests you, you just cannot leave it alone until you figure out what it is and does.

We celebrated your birthday at Grandma and Grandpa Love’s house. We decided to keep it simple with pizza and cake, some balloons, and your close family and friends. You absolutely loved being the center of attention! Every gift you opened, you wanted to play with then and there… the hardest part was moving on to the next gift. You are definitely loved by a whole lot of people.

We almost have you sleeping through the night again, but it’s been quite a battle. I’ve been giving you a dream feed around 11pm, and then not nursing the rest of the night.┬áThe first few nights of not nursing were brutal on all of us, and probably our neighbors too, but you seem to be getting into the new routine. Now that we’re settled into our new apartment (though temporary), it’s definitely time for us all to start getting good nights sleep!

You’re 32 inches tall and 23.5 pounds, you have 6 teeth and a poke that’s been trying to come through any day. Your babble sounds more and more like real words and it seems that you know exactly what you’re saying, even when we don’t.

Love you more and more every day,

Mom

Dear Eleven Month Old Maura…

Dear Eleven Month Old Maura,

How are you almost a year old already?! We have had absolutely no consistency this month with the move. I don’t think we’ve stayed in one place longer than a fee nights in a row. Needless to say, sleep is out the window! 


You handled our travels like a pro- napping and eating lots of puffs on the plane. In 12ish hours of travel, you only cried for a few minutes on the last bit! There were two other babies who cried the whole flight, so no one even noticed your brief frustrations. 

You caught a cold and ended up getting your first ear infection all the first week we were in NY. Yuck! Ear infections are no joke. 

Being sick, your appetite went down the drain, but soon returned. You will eat anything you can pick up and eat yourself. Mom feeding you… 25% chance of success. You want to do it yourself so badly… I let you when we’ve got a messy space, but with all the travel you haven’t gotten the silverware practice you crave! Some new favorites are meatballs, tomatoes, olives, and honeydew melon! 

You’ve been cruising a little bit around the furniture and refuse to even sit in the tub- you stand, I have to help support you while dada or grandma help get you washed. Instead of playing in the water, you just want to test the limits and climb. All day you just keep pushing yourself. I think you’ll catch back up soon!

You learn fast! You have started to imitate everything I do, from brushing your hair to aiming the tv remote at the tv. Today I smelled a bottle of lotion, you immediately grabbed it and sniffed it saying ‘mmm’ and giggling. 

Add ‘All done’ to your vocab list also. You’ve been ‘all done’ with just about everything. 

Love

As each phase passes I thought I’d be sad. I do miss the newborn days. I remember holding you at 6 weeks and thinking if time stopped, I’d be fine spending forever in that moment. But I find myself excited for our future now. You’re so much fun and every day and I love seeing the little person you’re becomming.

Love ya,

Mom

Hip Hip Hooray – It (was) Cast off Day!

Cast off day was actually January 24th… I’m apparently a month (plus some) late getting to posting this. 

Ready to get this thing off!

We were warned that getting the cast off would be pretty traumatic, and it was, but we recovered quickly. We were also warned that Maura may be in pain from stiffness or sensitive skin- but she wasn’t at all. Here’s a run fown if the appointment:

The appointment was at the clinic and scheduled as a follow up. We got there and a nurse came in to remove the cast. We came with distractions and sound canceling headphones but neither helped. We were instructed to hold her on her side, not ideal for her to play with my phone and she could see what was happening. She stayed calm until the saw touched her cast, it vibrates so even with the noise muffled- she freaked. She ripped the headphones off immediately (waste of only 15$ thankfully). The next 15 or so minutes consisted of holding down a flailing and thrashing baby with all our strength. The nurse said she’s the strongest baby she’s ever seen! The fiberglass was double thick, and each cut had to be made twice- it felt like forever and I’ve never seen Maura so upset. It pulled at my heart, but part of me felt joy at the same time. I couldn’t wait for this day! 

Once the cast was off I was scared to touch her. The nurse had to tell me it was ok to go ahead and pick her up. She felt so tiny, but LONG, and extremly floppy. Happy to report her little leg rolls were still there! To hold her was like holding a giant newborn. Her core was just very out of practice. 

Sweet freedom!

Her skin was red around her thighs and casted knee, very flakey – like a peeling sunburn- but she didn’t act sensitive. I had given her a dose of Tylanol in the waiting room, but she didn’t seem to achey either. What I wasn’t expecting was the fiberglass from the cast got all over the table- which really roughed up Maura’s skin as she thrashed in it. She had a very bad rash on her shoulders, upper back, and arms. When I bathed her at home, I let water run over it without rubbing it. I was nervous that glass particles could still be on her. (I don’t think there were, or the running water took care of it). I then blotted prescription hydrocortisone cream on it and it cleared in a couple days. I’d recommend keeping a long sleeve on, but pulled up to protect if you have a wiggly kiddo. 

The nurse had a washcloth and sink available to wash her while we waited for our ortho to come in, but I couldn’t set her down. She was emotional and I couldn’t get enough of her body snuggled against me. 

The ortho came in and did a physical exam. Moved her legs around gently. Her hip felt very stable! Since we were getting ready to move cross-country, he ordered xrays and a follow up in 2 weeks. He doesn’t do them that day since they’re typically very stiff. He usually waits 12 weeks to check progress, but wanted hard evidence of where we stood to pass to our new doctor. He said she looked in fantastic shape and that the nurse would come back in to fit her rhino brace- to be worn always except diaper changes and baths. (And due to my concern about a carseat, he said as long as her legs have wiggle room we could take it off for the car). 

The nurse returned and helped us dress her. I brought several outfits just in case She was too stiff for pants, but super stretchy leggings worked great. (Izzie & Owie brand are awesome!)

We got our carseat installed by the hospital’s safety center right before our appointment (didn’t want to keep a hippo and have to ship it back west when we moved? Not sure theyd even have let us… so we bought a new Britax Marathon.) Unfortunately, the brace didn’t let her bend at all to fit…. so off it came already. *more on that soon… turned out to be the wrong size brace!

All in all, stressful but exciting day. Next up: 12 weeks full time in a rhinobrace followed by 12 weeks half time! Rumor has it it’s a breeze compared to the cast, and since I’m writing this a month late- I’ll agree! 

Dear Ten Month Old Maura

Dear Ten Month Old Maura,

This past month was filled with big changes, that you of course have taken like a champ! The biggest changes being 1) you got your cast off, and 2) we decided to move 3,000 miles from Oregon to Upstate New York!

You’ve been testing out your legs, pulling up onto your feet briefly. It won’t be long until you catch back up. You can crawl twice as fast with the weight of the cast!

You feed yourself, and love to try and use your own spoon. Meals are very messy these days… You aren’t very excited about eating food, especially if mom suggests it. Eating has to be your idea, and led by you! Some new faves are honeydew melon and cheese. 

You can identify people’s noses, ears, and glasses! You love to point at things and have us identify them. I love watching you learn. 

You also love to dance! You’ll play musical toys repeatedly and dance every single time. You never fail to make me laugh. 

Love you baby girl!

Mama