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Tuesday, 31 January 2012

A packet in the Mail..

Today we received the information package in the mail about Lilybear's surgery prep and possible overnight stay at the hospital. I read through all the information, but I am feeling anxious about her surgery again. Watching her squirm and crawl her way around the living room today made me a little sad, wondering if she will figure out how to crawl in her casts. I really hope she does, or I will have one frustrated little Lilybear! Tme will tell...

Halifax in 2 sleeps...

IWK in 3 sleeps....

Sunday, 29 January 2012

Online Support Inc. - A Very warm thank you!

I would like to make a special mention of a company very dear to our hearts. Both DH and I have worked here, and I currently am still employed though I am on Mat leave at the moment. Anyway, I will try not to get too misty, and keep it short and sweet.

We advised my fellow co-workers of Lilybear's condition, and the treatment process involved. Some of our dear friends, and family that work there wanted to help us out, so they asked if we would be ok with them helping us with some fundraising to help with our travel expenses to take Lilybear to, and from the IWK in Halifax. We graciously said it would help us out, and accepted their offer. We expected a few dollars to help out, and we would be grateful for every penny. What we didn't know, was that OLS being the kind hearted, and loving people they are, got all nine of their sites involved, and not just the site that I work at!

Week after week I would receive a phone call from a wonderful Lady, we'll call her Lady S :). She would call me up, and say "I have another cheque here for you!" I would pack up the kiddies, and drive in to town to pick it up. Every time I picked one up, I had to wait till I was home to open it. The amount of money raised for us with every cheque melted my heart, and brought tears to my eyes. Most of these people didn't know us from a hole in the wall, but were willing to open their hearts, and give us the support we needed to make those weekly trips!

So a shout out to every beautiful soul at Online Support, from the bottom of our hearts we thank you! Your financial support, and thoughts and prayers have helped us more than I'm sure most of you will ever know! Thank you to everyone that donated, and for those of you that offered your time and efforts towards fundraising! Thank you to the management, and HR for allowing staff to fund raise, and donate for us!

So if you are in Atlantic Canada, or Ontario. . . and you would like to work for a company that truly cares about their staff. . . go to joinOLS.com and check them out. I like my job, but I love the people I work with, and work for!

So proud!

Watching Lilybear army crawl herself across the living room! The farthest she has made it in her boots and bar!! So proud of my baby girl for overcoming so many obstacles! Her next trick that she has been trying to master is crawling on her knees! Very hard to do when your legs are fixed together with a bar!!! But my Lilybear is very determined!! She has also been trying to pull herself up to standing on stuff, like her learning table. She can pull herself up onto her knees so far, also while in her brace!

When we read up on club foot before Lilybear came along, I read if babies learning to crawl and walk in the brace. Reading about it and seeing it done are two completely different things! Absolutely amazing! :D I am one very proud mama right now!

Saturday, 28 January 2012

A date is set

And now we are all caught up. We got the call for Lilybears appointment on January 23rd. Her appointment is set for 12pm on Feb. 3rd. I have been working very hard over the past week to tell myself everyday that this is not my fault, and it is just something that has happened. Another hurdle that my Lilybear will jump over, and keep on running past! We joke that she is going to be an Olympic Snowboarder someday, and she will strap on a snowboard and think it feels so natural to her :).

I am counting down the days until we travel over to the IWK again for Lilybear's surgery. Right now it is five more sleeps to RMH, which Peanut is SOOO excited for! And six more sleeps until Lilybear's surgery. The protocol for her is that she can't have any solids, or formula, or breast milk after midnight on the 3rd. She can have water, sugar water, and apple juice until 8am. After that she can have nothing before the surgery. That should prove to be another long emotion filled day. Hopefully not as bad as the first time, as she can go longer with out food now that she is bigger.

I did a little research to cheer myself up today, and looked into all the famous athletes that were also born with club feet. I do this often so that I know that we are reaching for a goal, and that this goal is obtainable. I thought I would share a few names with you, and you may just be surprised at who is on the list! Here goes:

The figure-skater Kristi Yamaguchi was born with a clubfoot, and went on to win gold medals at both the Olympics and World Championships.
The soccer star Mia Hamm was born with the condition.
Baseball pitcher Larry Sherry, the 1959 World Series MVP, was born with club feet, as was pitcher Jim Mecir, and both enjoyed long and successful careers
The San Francisco Giants held the record as the team with the all-time highest number of players with clubbed feet as of July 2010, and Freddy Sanchez, one of its infielders, cites his ability to overcome the defect as a reason for his success
Tom Dempsey of the New Orleans Saints, born with a right club foot and no toes (this was his kicking foot), kicked an NFL record 63-yard (58 m) field goal. This kick became famous as the longest NFL field goal in history.
Former NFL quarterback Troy Aikman beat being born with a clubfoot to enjoy a productive Hall of Fame career.

There are actually many more as well. There are also a ton of famous and successful people around the world that were born with one or two club feet. I try and think of them, and wonder what amazing things Lilybear will do when this is all over with! :) Maybe she really will win an Olympic medal like Kristi Yamaguchi some day :) Well, that's all I have for now, stay tuned for my update on Feb 3rd after Lilybear's surgery! Prayers please that it will go well!

Life with a Lilybear, and her boots and bar

We are pretty well caught up to present day now! It's been three months since we started wearing the brace. I should tell you some about our lives for the past three months, and then we can go from there.

So Lilybear wears the boots and bar brace for 23 hours a day. We are able to take it off for bath time, and some play and then it's back into the brace for bedtime. Lilybear is a much happier bear now a days, but is so ecstatic every night when we take off the boots that it is heartbreaking in a way, but good. For the first few weeks, she would cry pretty hard every time that we had to put them back on, which was a lot! The reason for so many fits that she threw was that we had to adjust to make sure that her heels were always down in the back of the shoe, or we could lose the correction that we gained from her Tenotomy. There is a hole in the back of the shoes so that you can see if her heel is touching the bottom of the shoes or not. It is also open on the toes so that you can see if her toes are moving back to indicate if her foot has slipped as well. The shoes are made of leather, and leather stretches, so you can imagine the amount of times we had to adjust her boots was a ton!

Eventually she stopped fighting it, as it just became part of our routine. She kicked, foot slipped, Mommy had to fix em! :) She's a trooper, let me tell you.

A few snaps of my Lilybear and her brace :)





Thursday, 19 January 2012

To reduce bar time, or not to reduce. . . That was our question!

So, as I was saying before. We are making a trip after 3 months to follow up with Dr. Logan, and Jennifer (RN), and our friends at RMH. Our best case scenario at this point is that they will let us reduce the amount of time in the brace to night and nap time wear (12-14 hours a day) worst case scenario was they would have to do the surgery again or put her back in casts. We were also prepared for a reduction in the amount of time she would be in the brace to even just 2 or 3 hours a day as a dear friend of mine was told. Her little one has bilateral clubfoot just like Lilybear, and had been told a few weeks before that they wanted him to be able to pull himself standing in the brace before a major reduction in wearing time. So off we go, hoping for the best, and hoping that we have prepared ourselves enough for the worst.

Waiting for our turn to see Dr. Logan at the IWK was horrid. I just wanted this appointment over with so I would know what was to come. I hate not knowing what is going to happen next.  Finally they call in our Lilybear, and he takes a look at her feet. I mentioned to him that her feet were still slipping in her boots, and that threw up a red flag for him I guess. He examined her heels a bit closer, and advised that he would like to get some X-Rays done of her heels to ensure that they were both still in the corrected position. I was thinking in the back of my mind, "ok, he's not sure. So I won't get upset till we know for sure"

To speak about the awesomeness of the IWK, what would have taken weeks back home, took less than an hour at the IWK. We were sent for X-Rays. By the time we got to the X-Ray dept, they already had the room prepped for Lilybean. We were seen and X-Rays taken in about 15-20 minutes from Dr. Logan's request. Then it was back to Orthopedics for the verdict. The systems are all computerized there so they had the X-Ray in like 90 seconds, crazy fast! Dr Logan took a look at them and then broke my heart all over again. "So it appears as though we have lost all the correction in her left foot. The right foot is still perfect though. So what we will need to do is release the heel cord again, and we will also have her fitted for a Mitchell brace for when the casts come off."

I thought I was prepared for this, but I sure as hell wasn't. I dissolved into tears right there in front of Dr. Logan, Jennifer, DH, and the girls. Peanut got pretty upset as she is not used to seeing me cry. DH, being the rock he is held it together for the sake of the girls and me. One of the many reasons I love that man with all of my heart! They explained that they would get her in asap for the tenotomy, and we would be booking OR time again. My heart just kept breaking with every statement they made. What did I do wrong? Should I have noticed something to prevent this? How could I make my baby girl go back into casts again? Back into surgery again? This had to be a bad dream, but there was no waking up. I signed all the waivers, and they said they would call as soon as they found time in the OR for her. Lilybear was fitted for her new brace, and we were on out way home. I drove us out of Halifax, trying to hold back the tears. DH took over driving for me, and I cried on and off most of the way home. I felt very responsible even though everyone was telling me it wasn't my fault. I still think it maybe was. Maybe I should have asked if we could go back sooner? Maybe I didn't catch her foot fast enough one day that it slipped? who knows. . . I guess we never will really know. Dr. Logan said these things can happen sometimes, so perhaps there really wasn't anything that I could do about it.

All I can really say at this point is that I am so grateful for my DH. I love that man with all my heart for being there every step of this long journey. I am so lucky to have wonderful parents that care so much for me and my little family. I am grateful for friends that I may not see everyday, but are always there to listen and love when I need them. I am grateful for the prayers, and positive vibes from the gals from my babycenter facebook group! You guys are awesome! Thanks to all of you who have listened, and offered words of encouragement along the way. You have no idea how much it has meant to me, and helped me through all of this.

And now the waiting game. . . tick tock tick tock. . . when will we get that call for her surgery? They told us with in two weeks. . .