Sunday, October 21, 2012

Busy Bee

Where did the summer go? Can't believe it but Addie is now almost 20 months and she is doing great. She has been out of her brace since August. We visited her surgeon again in June and did not get the news we had hoped for that she was 100%. The right hip is normal now but that pesky left hip is still a bit shallow so she continued wearing her brace during the day and was able to sleep without it at  night until August. Since September she has been completely unrestrained...which has been amazing. She is now running around like a crazy woman and to look at her you would never know she had an issue with those hips. She is just thriving and is such a busy toddler I can hardly remember what it was like to have her in a cast!



We are due to head back to the Stollery here in Edmonton in December for another X-ray to check that left hip. Addie's surgeon told us that now that she is walking around that is when her hips and bones will really start to develop. So hopefully all this running around will help that left hip to deepen. If the December X-ray is not showing her hip at 100% we will be potentially looking at another more invasive surgery. For now, we just enjoy watching her run and are hoping that left hip smartens up and gets itself sorted out.

Sunday, January 22, 2012

Another Step Forward

such a little personality
It's been so long since I last posted but the holidays just seemed to have sidetracked everything, it was so much fun spending Addie's first Christmas with friends and family! On December 19 we took Addie in for her 3 month check with our orthopedic surgeon and we were very nervous about it! We were just hoping to come away with good news on those pesky hips. They took her in for her x-ray and when Dr. Dulai came to chat with us she said that the results were not terrible but not great either. On the positive side Addie's right hip is now in p,ace and looking good but her left hip is still not great. In the end Dr. Dulai asked that we keep Addie in her brace around the clock except for feeding and bathing...and added another 3 months to her brace assignment which means that instead of being brace free by her first birthday she will be in it now until she is at least 16 months old. So...we wait some more! I think this is a very common story for those with hip babies...just when you think the end is near, the journey continues.

Addison is doing great despite it all. The increased time in her brace has not held her back in the slightest. She is rolling, crawling and occasionally even trying to stand in the Ilfeld. It is amazing how fast she can move in it...and the best part of it all is that she is just as happy and vibrant as she ever was.

Friday, November 4, 2011

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.

Sunday, September 25, 2011

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!

Wednesday, September 21, 2011

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.

Tuesday, September 13, 2011

Final Week of Spica-dom

Our little beanie baby - playing the day away
I can hardly believe it has been three months of spica already! On the other hand it has felt like forever. I can't remember my little girl pre-cast...and I am certain that she doesn't remember life before spica. Can't believe that September is here already! Where has the summer gone? Oh - that's right, Addie and I spent the majority of it in the basement and strolling air conditioned shopping malls. Needless to say I am very happy that Addie's cast will be off soon (or at least we hope it will be!). We are not entirely sure what will happen at our upcoming appointment next Monday...but we are hoping for cast removal and brace fitting all in one day. And if the universe is really cooperating with us, perhaps we will even be able to get a brace that we can take off for short periods to bathe and change her...and we would feel like we won the lottery if she didn't have to wear the brace for too long! I suspect, however, that they will want her in the brace for another 3 months...and I guess that kinda makes sense. Why go through all of this and take the risk that the hips could slip out again?

Her favourite place - in her handy sitt chair surrounded by toys

Her second favourite activity - eating in her handy sitt chair!


Addie has been doing great lately, except for the past few days it seems that she has caught a cold and perhaps (it is so hard to tell!) really begun teething. She fusses when we try to feed her, and is chewing very aggressively, has a runny nose, the sniffles and is just generally a little more cranky than usual...very unlike our happy-go-lucky baby. So, I hope that if it is a cold it goes away fast and that if it is a tooth...it pops through very very soon so we can all resume regular sleep cycles in this house! Thank goodness for her new kermit the frog toy...the ONLY thing that would soothe her last night.

Showing kermie who's the boss!
In other news, we have been using a loaner carseat from the Stollery Children's Hospital here in Edmonton, where Addie had her surgery and we were told way back that once the cast comes off, we will need to return that...so, in anticipation of that, we have purchased a new carseat for her. We were so happy with the Britax Hippo that we purchased the Britax Advocate for her to ride in from now on. It is a convertible carseat that will work both rear and forward facing until she is 65lbs...she has gotten so long during the last three months that we were certain her little infant carrier was no longer going to do, and because it is a bucket seat, it certainly won't fit her if she is going into any kind of brace! So...the carseat arrived today via FedEx and tonight we will see if hubby can get it installed and maybe take her for her first ride in it! We tried it out in a local shop here in town, but ordered it online (much cheaper!)...so we are pretty confident she will fit!

Addie's new ride - in pink, of course!

You would never know she had a cast!
We are hoping she likes it because in just over two weeks we are taking a very long road trip with her to Park City, Utah for a little r and r for the whole family! If she doesn't like this carseat...that is going to be one LONG car trip!

We are almost there little girl, one more week and those legs will be movin'!

Wednesday, September 7, 2011

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!

Thursday, August 25, 2011

Happy Half-Birthday Angel!

Addison's big debut - just a few hours old
This week marks Addie's half-birthday! We can hardly believe how quickly the time has passed. In those six months our little bean has survived the scare of a possible blood infection, a pavlik harness, has almost (fingers crossed) done her full term in her spica cast...and despite all of that has grown into quite a little personality whose smile melts your heart and whose mere presence can light up a room.

1 month old - very sleepy!

On the more fun side, she is the smiliest baby around, giggles when we make funny faces at her or talk her language to her. She blows raspberries constantly, loves her hello kitty doll, her sophie the giraffe and will chew on anything you put in front of her. She likes to spend time in her crib, surrounded by all her stuffed animals with whom she holds court - chatting away as though telling them what her latest and greatest discoveries have been. She has a rainbow maker in her room that just transfixes her every day at 5 o'clock when it lights up her room with little floating rainbows from floor to ceiling. 
2 months old - more alert!


She LOVES bananas but is not crazy about mangos, peaches, avacados or pretty much anything that is NOT a banana. Recently she decided that grandma's homemade apple sauce was ok too! Our little one has almost been weaned and relishes a good bottle of formula. She is finally starting to get some tufts of hair - even a little tiny bit counts, right? She loves her Treehouse cartoons - especially Guess with Jess and Dora the Explorer. She has started to get a little shy with the men in her life, but then on other days has all the smiles in the world for them. 

3 months old


Nobody is as good as her daddy. If he comes home from work and doesn't immediately interact with her, she gives it to him good by screaming at him until he gives her his undivided attention. 

4 months old - just before her surgery

4 months old - days following her surgery


She is so curious about everything around her. She loves being outside and particularly enjoys watching the leaves of trees rustle in the wind. She goes on long walks with her mom and dad in her baby bjorn carrier and delights at the world around her by offering small little coos of acknowledgement and approval. She is definitely an animal person and gets such entertainment out of watching the antics of her dog, Finn, and her cat, Furious.

5 months - only has eyes for daddy
Above all else, she is the joy of our life and continues to amaze us every day with how brilliant she shines. She is an inspiration to us and is the bravest girl we know. We love you angel and can't wait to see what the next 6 months with you in our lives will bring.

Happy half birthday angel!





Sunday, August 21, 2011

A Good Night's Sleep

Well, as Addison nears her 6 month birthday we decided it was time for our little sparkle to move into her own room (and out of mom and dad's - hooray!). Until she was 4 months old, she slept with us in our bed...and made a very good little warmer! Once her cast went on we moved her to her playard bassinet that was located right beside our bed. Last week we decided to make the big transition. We figured this might make for a few cranky nights of her feeling abandoned and alone...but we were wrong! Last week I laid her down in her crib, head and torso propped up with a crib wedge and lots of blankets to make her bed a little more comfy as she can't reposition herself at night...and to my surprise she not only went right to sleep, she had a two hour nap! Success! So that very night we put her in her crib and she slept really well, only waking once, around 4 am for a bottle. So this was the real test, would she go back to sleep after her bottle and change, or would she lay awake wondering where the heck she was? Again...she went right back to sleep.

Hubby and I were so impressed with the independence our little girl was showing, but at the same time we are both a little melancholy because it just means she is getting older and we so desperately want to hang onto our little baby. She is so happy in her new room that for the past three nights, she has slept 12 hours straight, no early wakings. Her dad and I, meanwhile, are still waking up in the middle of the night...so it seems we are the ones with transition problems as we are still trying to get used to it! The first night she slept all the way through her dad woke up in a panic, asking "Is she still breathing up there?". When you are used to having her right next to your  bed, it does take a little getting used to!

Last night I was watching her from the baby monitor set up in our bedroom, and I noticed that the poor thing still tries to turn over onto her side in the middle of the night but the cast keeps her firmly anchored on her back. However, it seems she has figured out a work around, she simply turns her torso to the side, inserts the thumb into her mouth and sleeps, half twisted, blissfully unaware that the cast is anchoring her down.

So after all we heard about how hard it is going to be to get her sleeping in her own crib after having her co-sleep with us it turns out we have disproven that in the last week! As for our worries of her feeling abandoned and alone by putting her in her own room... it looks like we are the ones left feeling abandoned and alone...while she sleeps peacefully in her big girl bed in her big girl room.

Tuesday, August 16, 2011

Summer Fun in Spica

Before my husband and I had Addison we used to delight in the fact that we could just pick up and go where ever we wanted. Yes, we had a dog and a cat that required some tending to but thankfully we had many friends or family willing to take them on if we chose to get away. We knew adding a baby to our life would change that somewhat but we promised ourselves that we would not let that change our social lives too much if we could help it. Well, like many things, that changed a bit when we got Addies HD diagnosis.

A simple trip to a friend or relatives house, even if it is just for a day, seems like a major undertaking as Addie requires a great deal of luggage to travel with her now (what a diva!). We have a bag for her changing supplies, a bag for her bedding, her Handy Sitt chair, her cast cooler AND the usual stuff that comes with an infant - formula, bottles, clothing, etc. It takes a full hour just to get her stuff packed up.

Unlike any other baby out there, diaper changes are a bit more involved, especially if the cast area gets wet while you are away from home! We need to pack not 1 kind of diaper but 2 plus abdominal pads. We also need to throw into the diaper bag the waterproof tape, the moleskin, the blowdryer AND the wedge to prop her up for her changes.

With her portable Handy Sitt chair and all her toys at grandma and grandpa's house

Then there is the stuff required for her naps! She needs her crib wedge and all the padding of her usual blankets and the one we use to prop up her little feet to help make her comfortable with her sleeping where ever she goes.

Her chair is very portable so that is an easy one to throw in. All this packing and unpacking is crazy...and definitely not what we had envisioned day trips being.

However, once we arrive at our destination and get her all set up, it is so worth it because the day just goes so much smoother. She can sit and visit with everyone, we can put her down for a nap (most of the time!) when she needs one and she sleeps comfortably. Because there is so much to pack for these trips it also means that we end up leaving little bits and pieces behind everywhere we go as I can't keep track of it all once we unpack it!

The cast makes a useful handle! At a recent family gathering, enjoying all the attention.

Summer means a lot of outdoors type events in Canada because that is our nicest time of the year, so most of us tend to want to be outdoors during the hot summer months from June-August. The biggest challenge we really have then is one that we cannot pack for - keeping her cool. Even moderately warm days can overheat our little one so we have to constantly watch her for signs of heat exhaustion and try to make sure when she naps there is a cool enough spot somewhere for her to rest. I am terrified that I am going to mistakenly overheat my poor little babe. I am sure I am a bit too overzealous when it comes to this, but I just keeping thinking how miserable I would be in a body cast...let alone if I was HOT and in a body cast!

Even though I moan about the packing and unpacking...it is worthwhile because Addison loves our little day trips. She is such a social butterfly...especially if those trips involve visiting her cousins or her grandparents. So I will just learn to love the packing...and maybe I will get better at remembering to bring it all back with us too!

Taking it all in at a family picnic...again, that Handy Sitt chair goes EVERYWHERE, indoors or out!