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Wednesday, 17 June 2015

So far so good!

In just a few days Lilybear will be 4 years old! I am so excited for her that she does not have to wear her boots and bar to bed anymore. She is loving every minute of it! I ask her about once a day usually since last week if she misses her boots, and every time she quickly says "NO!" with a big smile. I am so proud of her for all that she has gone through, and to know that she is so strong because of it all. For anyone just starting out on this journey I have a few words of advice!

1. It isn't always easy, and that's ok! It's ok to cry, and get mad and frustrated at what is going on with your little one.

2. It will all be worth it in the end. Try to be strong, but cry when you need to. It will be worth every tear, every long night, every stressful Dr appointment, and it will be worth every penny. You will know it was worth it when you see your child crawl, stand, cruise, and then take those beautiful first steps. I think clubfoot parents celebrate these moments more than a lot of other parents because it feels like those moments may never come when you are neck deep in plaster casts, tendonotomies, and boots and bars.

3. You are stronger than you give yourself credit for, but you don't have to be a super human. You don't have to do it all alone! Find a few good friends or loved ones, and let them help you. Let them know what they can do to make life just a little easier.

4. The end will come. Even though it seems far away now. There will come a time when you can bathe your babe whenever you want because they have graduated from casts to boots. There will come a day when they do not have those boots on all day long! There will come a bed time when you tuck in that sweet little darling, and you get teary leaving the room because you didn't have to strap on their boots. There will be a time when you watch your sweet child crawl, walk, run, skip, dance, and be free and happy. It will come, and when you look back at all you two have been through, hold your head high and smile! You smile cause it takes so much to be a clubfoot kid, and it takes so very much to be a club foot parent! You can do this!


Friday, 12 June 2015

This is it! For now at least!

We got the all clear at Lilybear's appointment today! She does NOT need a tendon surgery at this time, and we get to try her with out her boots and bar brace! She is wearing footie pj's even though it's 20 degrees out...why!? Because she CAN!!! We are so excited! At the same time I feel like I could wake up at any time, that this is all a dream. I don't think it will actually sink in until I tuck her in tonight with out her brace. I feel so many emotions just thinking about it! Happy, sad, relieved, nervous, anxious, and excited! So here we are. Day one of a brand new path of our clubfoot journey! Wish us luck, and prayers that she does not regress (which is possible) but her Dr says unlikely :) Cheers!!

Thursday, 11 June 2015

Could This Be It?

I tucked my baby girl in tonight, strapped on her boots, snapped on her bar, and she looked up at me and said "mommy, I really hope my Dr say no more boots tomorrow. I am going to be very sad if he says I have to wear them a while longer."  Bless her heart! She rarely kicks up a fuss about wearing her boots,  though many nights she just can't seem to get comfortable anymore.

Tomorrow she has her annual follow up with her specialist. We are hoping that he will give us the ok to try Lilybear without her boots! She will be turning 4 in less than 2 weeks! Over the past nearly 4 years, Lily has had over 16 sets of casts applied, over 20 trips to The IWK, 2 trips to the OR, many many days of wearing a brace 23 hours a day, and many more wearing a brace for night and naps. She may be able to curl up, and sleep with comfort, and no brace or casts to get in the way of a good night sleep. This will not mean the end of her clubfoot journey, as she will need follow ups until she finishes growing. She will be at risk of relapse, and may still need a tendon relocation surgery on one or both feet. So please send some positive prayers and thoughts out way! Lily is really hoping she can finally wear some onesie Jammie's that have feet in them!!