Master of her own destiny!!

This is my bar. There are many like it, but this one is mine. 

My bar is my best friend. It is my life. I must master it as I must master my life.

..and master it she has folks!!! :) 

Paisley is EVERYWHERE!!! Whether she has boots and bar, just the boots or nothing at all she is all over the place :) She is loving her new found freedom and Mama needs to remember where all the baby gates went, lol.

Sorry the videos are on the side. I didn't realize that when I recorded them that it wouldn't show up the same from my phone to the computer :( 

And in my draft the quality looks horrible so I'll see how it looks once I post it...might have to break out the real camera and see what I can do.

Forgot to mention...

In the midst of worrying about Paisley reaching her milestones, driving to UNC every other month, chasing a rambunctious toddler, keeping my household from imploding (although that might be an improvement from its usual state) and trying to keep my sanity intact we got a little surprise...

We got this little surprise when Paisley was turning 4 months. Soooo if you're any good at math, the 2 youngest will be 11months apart. Wasn't really planning on having Irish Twins, lol.

Consider my sanity officially GONE!!

But who needs sanity anyway, right? We are so excited that our family will be growing by one more the end of April/beginning of May. And after 2 girls, it's finally a BOY!!!

As of today I'm 28weeks (whoo hoo 3rd trimester) and we had his anatomy scan done at 18weeks. The anatomy scan was where we first learned that Paisley had her club foot so I asked that the ultrasound tech pay special attention to his feet. She took pictures of them and from what we could see everything looks good. I go next week for my GD test (joy!) and they want to do an additional ultrasound since they did the first one a little earlier than they usually do them. I'll take any excuse to see my precious boy :)

End of 2013 Beginning of 2014....Milestones

In my last post (you know that one I posted about 30 seconds ago, haha) I voiced my concerns that Paisley would not be able to reach certain milestones because of the boots/bar. Despite the docs at UNC assuring me she would be able to reach them with only a possible delay I just didn't see how this tiny baby would be able roll, crawl, walk, run like all the other kids her age. Seeing her in the casts had less of an impact on me than the boots and bar did. The sheer weight of them seemed daunting to those little legs and the time frame in which she had to wear them was so restricting, it seemed like she was doomed to be this little baby stuck on her back for months on end.

Plain and simple I was wrong.
I was wrong to think my child could not accomplish something.
I was wrong to put any doubt on her abilities.
I was just plain wrong.

Rolling Over
During a tummy time session Paisley rolled over for the first time about 2 weeks after getting her boot/bar on. She actually figured out that when she was on her belly she just had to twist slightly and the weight from the boot/bar would carry her the rest of the way over onto her back. Going from back to belly took a few more weeks but she eventually figured that out too...and waaaaaay before the average of 4 months. Proud Mommy grin right here!!! :-D

Sitting Up

The next big milestone was sitting up. "They" say your baby should be able to do this by about 4-5months. Paisley was right on track with this. We had had another appointment at UNC by this point and they gave us the OK to knock down her time in the boot/bar from 24-22 hours to 18-22 hours.  So we could leave them off for about and hour or 2 throughout the day. Having more time out of her boots/bar allowed me to see that it was easier for her to have her bar off to sit up by herself. With the bar on her feet had to work together and I saw that it was causing her to lose her balance more easily than normal. Once I removed the bar and let her feet have individual freedom she could sit on her own for quite a long time. I still put a pillow behind her because as most babies do they will just randomly slump over, lol.

Onward we moved and so did Paisley. She got REALLY GOOD at rolling. Like, scary good. She used those boots/bar to her advantage and just rolled and rolled and rolled and rolled. In my last post I talked about an advantage of the bar being that you can locate your child more easily. This is where that comes in to play. Being a stay at home mom I have things that I attempt to get done during the day: laundry, dishes, vacuuming, mopping etc. So I would usually plop Paisley on the floor with a bunch of toys and let her explore as she wished, so I could run upstairs and switch over a few loads of laundry. I can remember one day in particular that I went upstairs, my oldest followed me to "help" but when we came back downstairs it was quiet.  Quiet doesn't exist in my house. 2 large dogs, a 2 year old and an infant = NOISE! So quiet is eerie. Like an idiot I actually called out Paisley's name as if she was going to say, "here I am Mama!!!", but I did get a response. SLAM! went her boots against the hardwood. She had rolled herself across the family room and around the corner of the couch to the other side and was playing with the dog's tail. Sneaky sneaky child.

Fast forward a few more months and few more appointments at UNC, its the end of 2013 and Paisley is down to only having to wear her boots/bar for about 16 hours a day.  Since she is an incredibly good sleeper, averaging about 11-13 hours at night, we usually keep her boot/bar on all night and early morning, but after her morning nap we take them off so she has the rest of the day in freedom. I was obviously overjoyed she could have to boots off for so many hours, but I was also wary. She has always been good about having them taken off and put back on. No fussing, no fighting it, but I wondered what would happen as we gave her more free hours. So far I am happy to report that aside from being your typical squirmy infant she does not fight having the boots put back on. 

Moving forward into the New Year....

Pushing into Sitting Position and Crawling

The next big milestones kind of happened together. It seemed one day she pushed herself into a sitting position and the next day she was belly crawling across the floor. She figured out how to do both without the bar on, but she has now mastered putting herself into a sitting position with the bar on. Belly crawling (using arms to pull herself more than her legs) seems to be easier when she has the boots on because they don't give her any traction, but she's been doing great getting up on her hands and knees and crawling everywhere.

She's been putting herself into a sitting position while in bed

That was a pretty long winded post but I wanted other parents to know that despite my fears, in our case, there was no delay caused by the boots/bar. Paisley has either reached a milestone early or right on time according to "the norm". Next up is pulling herself up on furniture...WHOO HOO!!!!

June 2013 and a few following months

Once June rolled around we were DONE with casting!!!!! We kept each cast once it was removed so we could see the changes in her foot position. In the picture below you can see that her foot starts at a downward and slightly inward angle (far left) but through the weeks it gradually turns up and outward (far right) until it ends up in a "normal" foot position. 

This angle gives an ever better perspective of how the correction was made. Far left is, again, her first cast and far right is her last cast.

This is her first cast and then her last cast

After her final cast the next stage was to put her in these medieval torture devices. Ok, so I over-exaggerate, but that's exactly what they looked like to me. The boots look like miniature ski boots but then they are strapped onto a metal bar.  The bar has dials under each foot that can be adjusted to keep her feet turned out at certain angles depending on what the doc thinks she needs. Paisley's magic number has been 60degrees. My husband erased the torture device analogy and made me feel better when he said maybe she'll grow up to be an Olympic snowboarder.

When you first transition from cast to boots/bar (or snowboard/skateboard depending on your preference) your little one will have to wear it 22-24 hours a day. So aside from maybe bath time your little one will always be in them. Don't know how my husband saw it, but I felt so bad for her. I felt like I was confining her, and I feared she wouldn't be able to reach certain milestones because of the boots and bar. The doctors assured us that she should be able to roll over, crawl and walk around the same time as most of her peers, but I just wasn't sure. How can this tiny baby roll herself over with these heavy boots and bar clasped to her feet?

The boots/bar have their advantages and disadvantages.
Advantages:
- changing diapers -  It actually got easier because we were able to prop her entire bottom half up by balancing the bar on our arm while we changed her diaper
- no longer had to worry about plaster getting wet
- bathing - Paisley took her FIRST REAL bath!!!
- location - as they grow and they learn to slam that bar as hard as they can onto the floor you will never lose the baby. Just listen for the smash of metal against your hardwood floor (cringe at each dent she leaves) and locate your child. *No, I've never lost an infant in my house, but once they learn to roll they can be pretty stealthy*

Disadvantages:
- time consuming to put on/take off - In the beginning we were all thumbs when it came to putting her boots on. There are 3 buckles and you need to make sure her heels are pushed as far back as possible into the boot so ensure her foot is at the correct angle.
- messes - It happened more times than I can count that Paisley would spit up into her boots. So we would have to remove the boots, change her socks, attempt to clean the boot as best as possible, and then struggle to get them back on. Most boots are leather so it's a pain when it gets wet.
- bruises - Your legs and hands will be covered in them because they bring that bar down when you least expect it. My husband actually wrapped the bar in Styrofoam to try and alleviate some of the pulverizing that was being done to our legs.
- clothing gets more selective - With the boots/bar wearing anything that has feet in not an option, unless you're willing to buy clothes only to cut the feet out, but I just couldn't do that. So we were always on the hunt for pants and sleepwear that didn't have feet. I didn't think it would be that hard, but for every 10 outfits on the rack *maybe* one would be without feet. Paisley has an older sister and we weren't able to reuse very many of her sleepers because they all had feet. Thank goodness for amazing Nana/Grammy and other family members who would pick up any outfit they saw that didn't have feet to send to us.
- flooring dents - the bar IS metal and the boots are REALLY hard plastic. And when they hit wood, wood loses.

We made sure to do things as we normally would have if Paisley had not been born with a clubfoot.  It was just a physical abnormality and not something that ever posed a threat to her health, so there really were no extra precautions we had to take. It didn't make her any more fragile than a "normal" baby, in fact I think it had the opposite affect. Even though she was just a baby and wouldn't really remember if we had chosen to treat her differently, it was actually more for her older sister's benefit. We didn't want her to think of her little sister as being "different". We went to the beach, the park, sat out by the pool, we just had to be more conscientious about getting dirt in the boots.

Aside from being paranoid about getting sand in her boots Paisley enjoyed every trip to the beach. At least I think she did, she slept every single time, lol.

The bar made it a little difficult to sit up in the Bumbo seat but we just took off the bar for a few mins so Paisley could work on her neck and back strength.  Abdominal strength will never be a problem for this kid because with the way she raised that bar, even as a tiny infant, she's going to have 6pack abs at the age of 1 :)

Making sure to raise her as a beach bum :)

May 31 - June 14, 2013...Small Plaster Miracles

The first weeks of casting a clubfoot are intense. In most cases you are there every week for a cast change. In our case we were there every week for the first 5 weeks. Paisley was a trooper through all of it.

While at home she was a normal baby. She spit up after taking her bottles. She had blowout diapers. She peed on the changing table for those .337583 seconds that the diapers are off. She observed her new surroundings without any notion that something was "different" about her. She didn't have any adjusting to do. As far as she knew this thing on her leg was supposed to be there. Everyone had one, right? 

Dada and I were the ones who had to adjust. It was different changing diapers because you weren't supposed to let the plaster get wet. So when those blowouts happened it was a mad rush to get her cleaned up so that nothing was sitting against the cast and getting it dirty. There were a few mishaps but we were able to keep her cast pretty clean and even got praise from the UNC staff at how well we did with the casts. Whoo Hoo Go Us!!!!

We also had to be selective with what she wore. Some of the footed onsies would fit around her cast but others did not. If she wore an outfit without pants then we had to find something to wrap her cast in so that it did not cause her other leg/foot to chafe. Luckily someone had gotten me infant leggings for our oldest that I never used, but they finally were useful to cover up Paisley's cast. There are plenty of 0-3month outfits with the tags still on them because we just couldn't make them work with her cast.

Bathing was another change. Paisley did not get a traditional bath for the first 7 weeks of her life. We were able to wipe her down, and lightly sponge bathe her, but nothing more than that for fear of getting any part of her cast wet. Especially since we lived 4 hours away from her doc, it wasn't like we could pop in and get a new cast because one got wet.

Ok Now I'm going to bombard you with lots of progression pictures so you can see what a miracle these simple plaster casts are :)

(Don't mind my wild child's hair)

You can see on her left foot we're using the legging

Take out your average dinner fork and that is the size of Paisley's casts

This was her foot after just ONE WEEK in the cast!!!!

 After another week...

and after a third week...such a flippin miracle

and once we took this picture she had one of her final casts put on.  

That cast was on for a final 2 weeks.

May 24, 2013...Here we goooo!

We took Paisley to UNC for her first appointment when she was only 6 days old.  New clubfoot patients and patients with casts are usually scheduled as early as possible since it takes a little longer with their appointments. So we had a Friday 8am appointment. To some that might not seem so bad, but we live on the coast. Literally 7 miles from the beach, and UNC is about 4 hours away. So we had to leave by 4am to make an 8am appointment, which meant we had to get up at 3 in order to make sure I could feed Paisley before we left and make sure Grammy (my husband's mom) was good to go to take care of our oldest while we were gone. We knew we were in for a LOOOOOOONG day. Especially since we both thought we were only going there for a consultation appointment; meet and greet with doc and such.

We got to her appointment over an hour late because we forgot to account for traffic in Raleigh.  There's no traffic in the sticks where we live, haha. But again, the gracious staff at UNC worked with us and we saw the doctor immediately. And let me say that Dr. Henderson and his staff are awesome!

I'm sure sitting in the exam room we had deer-in-the-headlights looks because everyone does their own research and you always read about the worst case scenarios, and obviously no one wants to see their newborn cut open, so before even looking at her foot Dr. Henderson and his assistant Ruth sat down and explained to us what they saw the course of action being. It was called the Ponseti Method and it did not include surgery, unless every other option failed. I think at that point I finally took my first breath.

But then I stopped breathing again because I was not prepared for what came next. Dr. Henderson took my fragile 6lb baby girl, laid her on the exam table, looked at her foot and pushed her toes so they bent all the way back to touch her shin. I almost passed out! It looked so unnatural, I was sure her foot was broken. My husband made some noise that sounded like, "holy shit" and Dr. Henderson then saw the horrified looks on our faces. He assured us that her foot was supposed to do that, and did the same exact thing to her non-clubfoot. Low and behold her right foot bent all the way back so that her toes touched her shin as well. He explained to us that having her club foot show that much flexibility was an excellent sign, and that he was really optimistic that this would be an easy fix.

Awesome. We were elated. Nice to meet ya doc. When is our next appointment? But our appointment was not over. He looked to his assistant and told her to prep Paisley's foot because her first cast was going on today. Whoa whoa whoa, doc. I want to get a jump on this asap as well but I did not come into this appointment mentally prepared to leave with an infant in a cast.

No less than 5 minutes later there was our little infant with a plaster cast that went from her groin to her toes. She didn't fuss, she didn't cry. In fact she slept through the whole process, which was perfect because I think I was enough of an emotional wreck for the both of us.

May 18, 2013...Welcome Paisley!!!!!

We welcomed our newest addition very early in the AM on May 18, 2013. Not to be out-done by her older sister little miss Paisley only took about 45 mins to make her grand entrance into this world. The birth was as planned and Mama and Dada had bragging rights that despite being the 7th woman in labor at the hospital that night we were the fastest birth!! Whoo Hoo go us!!!!

We didn't take any pictures of her foot when she was first born (don't worry I've got plenty of before and after/progression pictures coming) but you can tell from the pic above that her left foot (the one at the top of the pic) is turned inward. You shouldn't be able to see the bottom of her foot and toes at that angle. Other than the foot she born perfectly healthy and happy :)

As is customary the pediatrician stopped by the following day to let us know how all her vitals looked before, during and after birth, and gave the usual rundown of what Paisley would need before being discharged. We asked about the referral to see a Pediatric Orthopedic specialist and she said she should put it in that afternoon. We still had no idea whether Tricare would send us to UNC or up to the Naval Hospital in Virginia, but we expressed that we wanted to be seen as soon as possible in order to start the correction process. We thanked her and went about our business, still in shock that we were now responsible for 2 little lives.

Paisley did great with all her tests and she was breastfeeding pretty well so we were able to go home pretty quickly. Once home we still hadn't heard anything from Tricare regarding our referral so my husband made a call. Come to find out that the pediatrician had not put the referral in as urgent (she hadn't even put it in that afternoon like she claimed), even though we explained to her that we wanted to start as quickly as possible. So according to the Tricare system we would have to wait for all the red tape to be processed before we could even get an appointment at UNC (at least we knew where we would be going), and that could take 4-6 weeks!!! This was not what we expected. Everything we had read online was that the sooner you get baby into a cast the better because all their bones and ligaments are extremely pliable and more easily corrected. Waiting 6 weeks was only going to do her more harm.

So I had my new-mommy-hormonal-breakdown fearing that my daughter's foot was now going to be turned inward forever. But thank goodness for my husband, he decided screw the system and went directly to the source. He called UNC, explained to them what had happened and they gave us an appt immediately. Seriously, they are amazing people over there. I'm sure getting an appointment without having the proper referral created more work for someone, but they wanted to see Paisley as soon as possible.  All we had to do was backtrack a little with her pediatrician (not the one at Naval, we switched to an out in town provider as soon as we could) and they would correct everything for us. They held true to their word because after that all her referrals and appointments went smoothly.

I suck at Blogs...

So when Paisley was diagnosed with Clubfoot in utero I did lots of research but had a hard time finding non-medical jargon accounts of what it was really like to have a newborn with clubfoot. I promised myself that once I started with this blog I would keep it up to date in hopes that it might help another parent dealing with the same unknowns. 

Well, here's the truth....I SUCK at keeping up with blogs. I think I've started 3 blogs and I can't remember the last time I wrote in any of them. Life just got crazy and every time I sat down to update this someone needed something, the phone rang, the dogs barked I had 5 lives in Candy Crush etc.

So here it goes. My marathon blog posts. Tracing our journey back to May 2013.  Yeah that's right it's almost a year over due. Like I said I suck at posting in my blog, but I can only improve from here, right?

Ready?

Set?

GOOOOOOOOOOO!!!!