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Thursday, 6 April 2017

Better Late than Never!

So I totally dropped the ball on keeping this blog updated. I know not many people read it, or anything, but I like to have it so I can look back on just how far we've come on this clubfoot journey. Someday I hope I can share it with Lilybear so she will know how many obstacles she has overcome on this journey!

So Surgery was December 13th. Everything went very well surgically speaking. Our older daughter had a hard time seeing Lilybear when she had a sedative to relax her before surgery. She was giggling and slurring her words etc, and our older girl had a good cry, and explained that she was nervous for Lilybear as she was acting not herself. We managed to get through that, and Lilybear was much more herself coming out of recovery. We were moved up to Unit 7, and given a room, and then the long day became longer. The hubby, and our older daughter went back to Ronald McDonald house for the night, and Lilybear and I settled into our room. . . only to discover that the lights wouldn't turn off! This realization came just as the nurses were changing over from day to night staff, and were doing report. So we ended up waiting about an hour to get moved to another room. Once we were in that room Lilybear fell asleep fairly quickly. She woke up several times through the night and needed the bathroom, or had an accident while sleeping (which was due to the blocker they gave her, she couldn't feel the need to pee for a while).

Several bedding changes, and being up every two hours with the nurses to stay on top of her pain meds! It was a long night! The next morning Lilybear had her breakfast, and Hubby and Sissy came back to help us pack up for the long ride home. Lilybear did really great most of the way home. The last hour or so was very rough for her. We believe it was due to swelling inside her casts from being in a sitting position for too long with out her legs elevated enough. We were very blessed when we arrived home that my mom and dad had come over to set the couch all up with lots of cozy pillows and blankets for her. We got her nestled in with her legs up, and the relief for her was nearly immediate!

Fast forward to Christmas Day. Lilybear was still not weight bearing on her double leg casts, and we thought it would put a damper on the day, but by this point she was scooting around on the floor, and in her wheel chair. She had a great morning, and then when we were at our big Family Christmas dinner she decided to start walking around!!!! And then she didn't stop. It was the best Christmas gift I have ever received.

She started back to school in January, and as she was able to walk on the casts she could attend school with out an EA to assist her. The only real limitation she had was that she couldn't go outside for recess (we live in Canada, so it was cold and snowy!). She was allowed to pick a friend each day to stay in with her to play. She didn't really mind at all.

After 6 weeks had passed, we headed back over to IWK to have Lilybears Casts removed. I was amazed by the tiny incisions that they had done all the work through! I think this was the hardest party for all of us during the whole ATTT surgery! When the casts came off. No one really prepared us for the sensation overload that she would experience! The Casting Tech gave us a heads up just before the casts came off, but we were not expecting what happened next. Lilybear was crying so hard, and wouldn't let anyone touch her legs or feet. She wouldn't stand, or even put socks on. We were so worried that we opted for staying an extra night in Halifax in a hotel rather than making her drive the 4.5 + hours home. She was ok once we got to the hotel and settled her in bed for the night. She fell asleep shortly after and slept all night. By the next day she was willing to stand up for a few seconds at a time, and even took a few steps when we stopped for some breakfast on the way home!
By a few days later she was walking around a lot more :)

It was wonderful to have our girl back! Though for the first few days she wouldn't wear anything on her feet other than her slippers! A few days after we got home we started Physio. We went to an AMAZING Physiotherapist on PEI named Jenny! She was absolutely amazing with our girl! After attending physio, most people can't wait to leave, but Jenny made it so much fun that Lilybear always wanted to stay! After 6 weeks of physio, twice a day, every day, and Jenny advised that she felt we were ready to just work on our own at home going forward. Lilybear was so sad that she didn't get to see Jenny every week anymore, but I told her that some day she will understand that this is a good thing.

Lilybear has had one more follow up since with Dr. Logan, and he advised that everything looks great, and Lilybear was doing much better than he thought she would be!

Since then, we have been keeping up with physio at home, though only once a day. Lilybear is signed up for soccer this summer, and is so proud of her new cleats that we bought for her! Everytime I see her running around my heart just about explodes with joy!

For anyone starting on this journey, the road is long. . . sometimes it just plain old sucks, a big bucket of suck, that no one that hasn't gone through it would even understand. . . but at the end of this road is your child running and playing, and skipping, and jumping for joy and you realize. . . it is worth every. . . single. . . . second!