Ilfeld Brace

Addison has had her cast off now for about a month and  a half and she is doing just great. She has adjusted well to the Ilfeld Brace but I have to admit, because we have control over how long she wears the brace we are not exactly vigilant with ensuring she is in it 20 hours a day. When your little one has had to endure two surgeries and wear a body cast for 3 months of her new little life, you hate to confine them in anything longer than you have to.

Just hanging out, wearing her brace

Just after her brace came off we took her on her first family vacation to Park City, UT. She did so good on the long car journey down and back, we were so impressed with how easily she traveled. When we got to our resort in Park City we made the most of the pool as we had not been able to give her a bath let alone take her swimming during the hot summer months, so we spent as much time the pool with her as we could...and she loved it!

Our little bathing beauty

We just love watching her kick her little legs!

We have been giving her lots of floor time in hopes that it will stimulate her stalled motor skill development. Most of the time we give her brace-free floor time but on the occasion that we do put her down on the floor in her brace, little monkey that she is, she figures out a way to roll (very awkwardly) with the brace on! It doesn't look like it would be all that fun to me to try and move around in that brace, so most of the time she is given her floor play time without her brace. She is now 8 months old and has really fine tuned her rolling skills. She moves around the floor by rolling herself to where she wants to get. When she is rolling around on the floor, you can see in her eyes that she really would love to crawl, she just can't figure out how to tell her body how to do that yet! Sometimes she gets frustrated when she is trying to reach a certain toy or grab the cat's tail and can't quite reach it, and can't quite figure out how to get to where she needs to be in order to grab whatever she wants...but we know she'll get there soon enough!

"I really really wish I could crawl!"

Thankfully her brace works in her stroller too

Just over a week ago, her grandma taught her how to sit on her own and she was pretty proud of herself indeed with that little development! Now she can't get enough of floor time, showing off to everyone her mad sitting skills. Her dad was a little melancholy about her new found sitting skills, it is just one more milestone that indicates to us she is growing up and will soon no longer be our little squishy baby. I can't imagine how he is going to feel when she actually does start crawling!

Look what I can do Mom! I'm pretty smart!

Eventhough we are supposed to have her in her brace most of the time, we don't...but we take extra care to ensure that she is as frog-legged as possible at all times! Poor thing probably wonders why we are forever adjusting the angles of her legs! Thankfully she sleeps well in her brace, and has come to see it as part of her sleepy time routine, as soon as the brace goes on she knows she is in for a nap or bedtime, it is kind of funny how she reacts by rolling to her side and putting her thumb in her mouth, preparing herself for sleep!

Getting some snuggles with daddy before bedtime

We don't have another appointment with her orthopedic surgeon until mid-December, that will be 3 months post- cast removal and we are not sure what will happen at that appointment. I suspect they will want to check the angles of her legs, etc. and ensure all is looking good...but whether that will entail an MRI or an x-ray we are not too sure. Our ortho has indicated that she will likely be in the brace until her first birthday...so here is hoping that timeline works out and after her first birthday she will be free.

Moving Right Along

It's been almost a week since Addie had her cast removed and she is doing so great. I was a little bit worried when I first saw the Ilfeld brace as it looks pretty silly and I wondered how anyone could stand wearing such a contraption for 20 hours a day. Needless to say our little girl has just taken it all in stride, just like everything else she has had to endure these last months.

Our brave little girl enjoying some tummy time, cast and brace free

As luck would have it, the week Addie got her cast off has been great due to the Indian summer we are experiencing. So our little girl has finally got to enjoy some sunshine! With the 4 hours of free time we have each day from the brace we try to give Addie as much play time as we can. When we lay her on the floor without her brace she just has a great time kicking away and trying to roll herself around. She is doing great to lay on her tummy and keep her head up, she loves to roll from her tummy to her back and back onto her side trying to reach the toys spread out around her. She plays like that as long as we let her, and she just has a ball.

Just loving her tummy time

We have also been giving her baths, which is such a treat for her dad and I to watch her splash around in the tub. We were so happy to find that she still loved her bathtime, it had been so long since she had had a bath we were not too sure how she would handle that, but sure enough, as soon as we put her in the tub she was splashing and giggling like crazy, just having the best time.

Splish splash Addie still loves her bath

We are still a bit nervous with her legs and hips when she is out of the brace, afraid of dislodging them and having to go through the whole operation and casting ordeal again. I think that is probably how parents of all spica kids feel. Addie's dad is going to call the surgeon this week to just double and triple check that we don't need to be concerned about this. We have kept her out of her baby carrier and the jolly jumper until we talk more with the surgeon...but all in all she is doing great.

So happy to kick those little legs, finally!

Cast Free!

All smiles the last morning of her spica-dom

Yesterday Addison went in to have her cast removed. Her dad and I were very much looking forward to this day, but we were also very anxious as we did not know what to expect at all. We arrived at the Stollery Children's Hospital bright and early, and the x-ray technician came out to tell us that he wasn't sure whether they were cutting the cast off prior to x-ray or leaving it on...he was just waiting on word from Dr. Dulai. About 20 minutes later they ushered us into an exam room, handed Addison and I a pair of ear muff type ear protectors and asked us to put them on.

Not sure who decided these were baby size ear protection!

They explained they would be taking the cast off and then doing an x-ray to determine next steps with respect to her hips. Addie's dad and I tried to keep the ear muffs on her, but she was not a fan of them...and as soon as they fired up the cast saw, the tears began rolling down her face.

Just after the cast had been cut with a saw, Addie was inconsolable

For those of you not familiar with cast removal, our cast was removed with a hand-held cast cutting saw that was very very loud and as they proceeded to use it to cut her cast off, it vibrated the cast a lot, which is what I think scared her the most. Once they have cut through the cast, they then take a large pair of snippers, crack the cast open and cut away the soft cotton lining. The whole cast cutting procedure probably lasted a total of 5 minutes but it felt like 5 hours because Addison was so upset by it. She was crying so furiously that her little face turned 7 shades of purple and crocodile tears were streaming down her little face. She was completely terrified.

Cutting through the thick cotton lining, trying to comfort her

Once the cast had  been cut through, they wrapped it back on her with a tensor bandage to hold it in place until it was time for the x-ray. So they sent us back out to the waiting room where we desperately tried to take Addison's mind off of the whole thing. Once back in the waiting room, she calmed down quite a bit, her face was all blotchy from crying her heart out...and she was whimpering a little.

Phew! We were both glad that was over

About 5 minutes later they ushered us into the x-ray room. Only 1 person was allowed to accompany her, so I went with her this time leaving her dad and grandma to wait out in the waiting room. They laid her down on the x-ray table and slowly began to remove the pieces of the cast. Having been in that tight fitting cast for 12 weeks, this made Addison a bit uncertain and she began to cry again. The tech asked me to put on the lead apron and hold her in place for the x-ray. She was x-rayed on her back with her legs splayed out in frog position. All in all this was much easier on her than the cast cutting itself, but she was still very scared and uncertain what all this was about. Once the x-ray had been completed, we were asked to wait back in the waiting room again, and then shortly after that were brought into another exam room and asked to wait for the doctor who would share with us the results of the x-ray. At this point, Addison was clinging to me for dear life in desperate need of some comforting. About 15 minutes later, a resident popped in and asked to examine Addison. She laid her down on the exam table and did a quick hip check. She said that Addie's hips felt good, but that the surgeon would be in soon to let us know what the x-ray looked like. When Dr. Dulai arrived, she said that the x-ray looked great and that she was very pleased. She gave us a prescription for the brace she would need to wear and indicated that in most cases what they do is double the age they were when they went into the cast to determine the duration for wearing the brace. Because Addison was about 3 months old when she went into the cast, Dr. Dulai indicated that she may be in the brace for another six months but she said that she hoped to have her out of it in time for her first birthday (hooray!).

After the x-ray we enjoyed watching her kick, kick, kick those newly free legs!

We laid Addie down on the table and put her in her first pair of pants since she was first cast so many months ago, and it was a great feeling to see and cuddle her little legs. Suprisingly her legs were in great shape too, they didn't look terribly atrophied and only had a little bit of dry skin - much better than what we had anticipated! What we were also able to notice was how tall she had gotten while in that cast. She is long and lean just like her daddy (another good thing). She is still wearing the size 2 diapers she wore when she first went into the cast, they are a little short so we still need to double diaper her with the 3 over top just to hold everything in. Her legs are so skinny that the size 3 diaper is just to big at the leg opening. Our girl is going to be a supermodel for sure with her build ;-)

Thank goodness I am all done here grandma!

After all that she was so tired out that we took her home for her first cast free nap in three months. It was great to lay her down in her crib and let her sleep comfortably with no need for extra padding or wedging or anything - something we are not used to at all! When she awoke we passed her from grandma to daddy to me for extra snuggles before heading out to get her brace fitted.

First cast-free nap in 3 months was GOOD!

When we arrived at the shop of the fellow who was going to build her brace, he knew as soon as we walked in that we had been sent for an Ilfeld brace, I guess Dr. Dulai sent us to the right man for the job! He took a few quick measurements and sent us on our way, telling us to return in about an hour and a half. When we returned he had the brace ready to go. Addison was not impressed when we laid her into her new brace, but we suspect that had more to do with the fact that another man was manhandling her and she had had her fill of strange men for the day! When he tried to do up the brace around her midsection he quickly realized he had made it too large for our skinny little girl...so off he went to adjust it. When he came back, he slipped it on her, made marks on the velcro to help us understand where to adjust it to when we are putting it on, gave us a demonstration on how to adjust it for wearing over different thicknesses of clothing and that was it. It is a brace very similar to the pavlik harness she was initially in but is much more user and baby friendly. It can be worn over her clothes, removed for changing and, the big bonus is that we can remove it for 4 hours a day (which means we get to cuddle our baby, and just our baby, for 4 glorious hours a day. What a good feeling!

Addie with her main man in her Ilfeld brace

Later that evening we ran a nice warm bath for Addie in our big whirlpool tub. Her daddy put his swim gear on, sudsed up the bath and turned the jets on and she had so much fun splashing around, it was ridiculously cute. She was so excited, she didn't want to get out of the tub and it felt so good to know that she was half way done and could go back to enjoying her bath time!

She had a blast in her first cast-free bath

Now that she has been in it for a few days, we have settled into a new routine...and it is so much better than the cast! She can now use her high chair, sit without assistance in her stroller, we have been able to remove the padding from her swing...everything just seems so much easier! She is sleeping great in it and it really does not seem to phase her at all. BIG RELIEF! She is a little more flopsy to carry around as she needs to work to build up her back and ab muscles so she is strong enough to sit on her own again, so we are giving her tummy time each day to try to help with that. All in all, we are so grateful that the surgery was a success, the cast has done its job and we are one step closer to ensuring our little girl has good hips.

Less than two weeks to go!

So it occurred to me today that our journey in the spica cast is almost over...we hope! We have an appointment on September 19th with the surgeon in the plaster clinic and have been told the cast is coming off...what follows that, we are a little uncertain about as we don't have a lot of information. The surgeon indicated before her first surgery that once the cast comes off Addison will then go into a brace. The brace that we have been told she will most likely go into is called the Ilfeld brace...and again, we have next to no information about that. We are not sure if that brace will have to stay on her 24 hours a day / 7 days a week or whether we can take it off to bathe her. We also don't know how long she will need to wear the brace, whether it can go over her clothing or under...so many questions. Needless to say we are a bit confused as to what comes next. We are, however, very much looking forward to the cast coming off but, at the same time, are a little nervous about it. We are not sure how Addison will feel about having her cast removed, as she is quite adjusted to life in the cast...and really, at this point, does not know life before the spica cast! Will she be able to sleep in her brace? Will the brace bother her more or less than the cast? I guess we will just have to wait and see and, like the spica, take it one day at a time when the time comes.

Addison also had her follow up today with Dr. Olson, the pediatric plastic surgeon that removed the extra bit of skin near her right ear. He took a quick look at her scar and indicated that everything was looking great. They biopsied the skin they removed from her ear and it was, as he suspected, just a little bit left over from the formation of her ear. So that was great news. And it was great to tie up that loose end.

Now we just need to make it thru the next week and a half...and we will be onto the next phase of this journey with Addie and her clicky hips!