Thursday 13 December 2012

Phew! Another Apointment over!

Sorry for the delay in posting! Our appointment was this morning, and we are just getting settled back in at home! We had another fantastic stay at RMH. Linda, and all the staff and volunteers really outdid themselves again, as always! They really know how to make you feel at home, even though you are away from home :) They even surprised my husband with a copy of the picture of Ronald McDonald House Atlantic Canada that he drew for a fund raiser in the fall. They had it framed for him, and they all signed the back of it for him too :) so nice! They also showed us when we got there, that they had the original framed and hung in the kitchen by the fridge! :) So great to see his work on their walls again! I am very proud of his work, and it is nice to see that others appreciate it too! This is the picture that he drew for them for the fund raiser, and also another that he drew and donated for them to put up as decor for in the house:




Our appointment went great for the most part today. We got GOOD news! So I was just going crazy for no reason with worry! Such a typical mommy I can be! Dr. Logan said Lilybear's feet look great! We also had some x-rays done of her hips too, as she was turning her foot out for a while when she first started to walk and Dr. Logan wanted to take some just to make sure everything was fine, and it was! Phew! Then Peanut had a melt down as her DS was taken away because she dropped it on the floor three times. Lilybear's fabulous RN Jen saved the day there by hooking Peanut up with some awesome Disney Princess stickers! Thank you Jen! :) Then Lilybear went into total melt down mode when the Active Motion Rep Trevor was trying measure her feet for her new set of boots as she needs to go up a size. He felt so bad, and I felt bad for him. Man my girl can put up a fight when she gets pissed! haha! It totally didn't help that it was past nap time, she missed lunch, and had been up at 3:30 am today! bad combination for trying to hold a toddler still for measurements! We finally got it done with a lot of tears on Lilybears part, and then we were on our way back home again!

Our next appointment will be in 6 months time. Dr. Logan is hopeful to have a clinic here by that time, but they let us know today that if it isn't Dr. Logan coming over that we will have the option of setting up her appointment at the IWK instead! They are so great! :) Always looking out for their patients! I think they might know that we are a little wary of taking Lilybear back to our hospital here after her whole ordeal back when she was first treated. :)

Well this will probably be my last post before Christmas. I'll be sure to post some photo's of Lilybear from Christmas once I get the chance! Merry Christmas to you all, and as always, Thanks for reading! :)

Wednesday 5 December 2012

Next appointment is coming!

So one week from now, We'll be all settled in at RMH (Ronald McDonald House), and catching up with those we've met there. I have to say that I am both excited and nervous about our appointment next week. Let me break down my feelings a bit, and maybe it will help me understand it a little better, and give you some insight as well.

I feel excited to go back, as we haven't been to an appointment in over 6 months! That's right guys! It's been 6 months. . . I can't even believe it myself! I looked through some photos tonight of just how far my baby girl has come! This time last year she was full time in a brace after her first tendonotomy. She has come so far! If you haven't read our full journey, please do. It's been one heck of a ride! She is now running around with her big sis and friends. It's hard to make her stay still most of the time. Every night and nap time when we put on her boots she helps by putting her feet in for me! Such a change from those first few days when she fought with all she had to not let me put them on. Peanut even helps too sometimes. Her job is to snap the bar on :) She does a wonderful job, and likes to be involved in the process. She always asks me if she wore boots like Lilybear as a baby, and thinks it's strange when I tell her no, and that not all kids have to wear boots to sleep. I explained to her just the other day that when most babies are born, their feet aren't straight so we have to use the casts and the boots to help them be nice and straight for when those babies are ready to walk. She looked at me and said "So that means Lily is special right?" She sure is! :) So I am excited to catch up, and excited to see the Orthopedic team see her now! They are in for a treat!

I am  nervous, and at moment terrified that we'll get bad news. . . There is no real logic to this, but I'm a mommy and that fear is just there. I don't think there is anything wrong with her cute chubby feet. But I'm not the professional. I have been having stressful dreams some nights that wake me up. They are kind of flash backs to Lilybears relapse, and how heart breaking it was to me at the time. I felt like I had failed her in some way. I know now that I didn't, and that relapses can happen, but I think there must be some guilt still lurking in my subconscious. I see her running around, and I think to myself that she is doing great, and we'll get all good reviews. . . but then little things start to pop into the back of my mind. Like how her foot was turning out a bit when she was learning how to walk. She doesn't seem to do it anymore, but maybe i just don't see it? Or memories about how I didn't know her Left foot had relapse before. Or other times, if I'm holding her in my lap, and I look at her feet, and I see her holding her foot a little crooked or at an odd angle for a second. Did I really see that or are my eyes playing tricks. I'll ask other people around like my mom or husband and they don't see it. Sometimes I just feel like I'm going out of my mind. So I'm terrified. . . I wish I wasn't, but I am.

So those are some of the thoughts running through my head tonight. One more week, and I'll know. Then I'm sure this will start all over again in another 6 months :) Oh dear. . . :)

I'll leave on a happy note though. Here are a couple of photos of my Lilybear now!



As you can see. . . It's hard to get her to stay still for very long! Cheers, and You'll hear more from me Next week!



Wednesday 7 November 2012

Heart warming

I have been getting a few posts and emails from others telling me that they are finding this blog helpful when learning what to expect with their own clubfoot journey! This makes me feel so good! I was in the "research to find out what to expect" mode when we found out Lilybear would have clubfoot. My goal when creating this page was first to vent and let out all the emotions that I was going through dealing with the unknown, and the with the ups and downs of Lilybears journey. Then I used the knowledge I gained to hopefully help someone else. To know that this blog has made a difference for even one mother or father out there makes it all worth while!

My words to you all, Thank You!

To the new mama's and Papa's jut starting their own journeys......try and remember that every moment, good and bad, will be worth it the moment you see those perfect little corrected feet, and their first step! I tear up just watching Lily run around with her big Sis sometimes because she makes me so proud, and because of how we got here. I wouldn't change it for the world :)

Wednesday 10 October 2012

Updated photos of My Lilybear








My dancing princesses!


My beautiful Peanut loves to dance, and Lilybear is starting to follow in her footsteps :)

One year in boots!

It's been a while since my last post! Time flies when you're having fun! As of tomorrow, Lilybear has been in her brace for 1 year! I am so proud of my baby girls and how they have come through all of our ups and downs through the past 16 months! I will post some updated pics and video of Lilybear as soon as the girls are in bed! Hope you all are doing great!

Sunday 29 July 2012

Lilybear updates!

Hope you all are having a wonderful summer! We are having a great one so far! Our Trip to Moncton went well. Lilybear screamed bloody murder while we were there of course! That little girl does not like to be held still for getting foot measurements! It would be sooo much easier if they would just order her the next size up instead of measuring her feet. I can put on her boots to show you how the toes are starting to stick out over the edge if you need proof that they're getting too small! Sheesh! :) oh well, she was fine a few minutes later, and we've been through a lot worse!

We were greeted by a friendly face when we arrived at Active Motion in Moncton! Trevor, who fitted Lilybear for her first pair of boots for her Mitchell brace was in town visiting his colleagues, and was more than willing to fit Lilybear for her new set! Fingers crossed that they order the right size!

More updates on our Lilybear. . .

She is getting much better at walking this week! She can now walk and hold something in her hand at the same time! Also, she can turn while she is walking! Every time I see her walk it amazes me at just how far she has come in 13 months! Sometimes I get a bit teary about it, but I try not to! She just amazes me so much! I love to look at her straight little feet, and remember all that we've been through with her. Knowing that all she has been through brought her to this point. Knowing that, even though it was tough on us sometimes, and tougher on her, it was worth it!

Those are all the updates I have for right now. Updates may be scarce over the next few months. We don't have any more appointments for Lilybear till NOVEMBER!!! Unless something happens like she out grows her next pair of boots before then!

Feel free to post any questions that you may have for me! I will get an update via email and answer you ASAP!

Cheers!

Monday 23 July 2012

New boots, and A trip to a new City for the girls!

Lilybear has finally outgrown her size 2 boots for her boots and bar! We don't have to go all the way to IWK for a fitting this time, just a shorter trip to Moncton, NB! So we can be there and back in a day instead of staying over night.

Sorry for the lack of posting. Life has been very hectic as any one with young children knows.  Especially with Lilybear walking and climbing EVERYTHING still! haha, we also are enjoying all the sunshine we've been getting by staying out side! Pool, park, and everywhere in between! Our grass is starting to get crunchy for lack of rain, but I would gladly take a few days of rain to spend some cuddle time on the couch with our girls!

I will let you all know how her fitting goes. We go on Friday! Woo! Size 3 here we come! 

She Walks! WOOOO!

It's been a long road so far, and we're not done yet! Here is my Lilybear walking! I feel a tug on my heart every time she walks. It reminds me of just how far she has come in only 13 months! So proud of you my baby girl! And I know Daddy and Peanut are proud of you too!

Lilybear can walk!


Thursday 21 June 2012

My Lilybear turned 1 today!!!!

My little Lilybear has turned 1. . . I can't believe it's been a whole year already! She has been through so much over the past year, and I know most people say the first year flies by, but if I am completely honest this year has seemed like a lot longer than just one year for us. After NICU for about a week, dozens upon dozens of trips to the hospital in our home province, and the IWK, two trips to an OR, I have completely lost track of how many sets of casts, two different sets of boots and bars. . . on top of all of the other things that a 1 year old normally goes through in a year. My little Lilybear is a trooper, an inspiration, and a little sweetheart! 

Happy Birthday our little Lilybear! Mommy, Daddy, and Peanut Love you Always and Forever! No matter what life throws your way, I know that you will fight and overcome!

Here are some of my favorite photos of your first year:

Your very first Photo!


2 Days Old, First Set of casts
1 Month



2 Months
3 Months
4 Months
 5 Months (Hubby usually doesn't have a mustache. . . Mo-vember ;)
6 Months - Your first Christmas!
 7 Months

 8 Months :)
 9 Months
 10 Months (first real pair of shoes)
 11 Months
 12 Months!

Love you Lilybear! I can't wait to watch you grow over the next year, and many many more to come! xoxo

Update after IWK visit

Sorry for the delay in posting! Lilybear, and my little Peanut have both been sick since our trip on Monday!

So Lilybear's appointment was on Tuesday afternoon. Dr. Logan said her feet are looking great, and our next appointment won't be for another 6 months! He also let us know that he is hopeful that he will have a clinic up and running in our province by then! My hubby and I both feel this is bitter sweet. It will be great not having to pay for the trips over to IWK, but at the same time we will miss the IWK, and we will miss all our friends at RMH!! Peanut will be sad if she doesn't get to go back! :) That just speaks volumes to the staff and volunteers of both places!


Friday 8 June 2012

IWK Foundation has posted

Please be sure to check it out:

Here is a link to the blog post

http://iwkfoundation.wordpress.com/2012/06/08/feel-good-friday-14/

and they can be found on Facebook at

www.facebook.com/iwkfoundation.

Wednesday 6 June 2012

Sleep, oh precious sleep!

I am happy to report that we have been having much better nights as of late. Lilybear is doing very well for sleeping, mostly, through the night! She does wake up on occasion. I think it is mostly that she finds it hard to get comfortable wearing her boots in her crib. I found some interesting ideas on another blog here that I may try for her soon and see if it helps. They are ideas from other parents of club foot children that recommend skipping the "toddler" bed stage, and getting them into a single/twin sized bed for the extra room. For those of you that do not have a babe wearing boots and bar to bed. . . When they roll over they roll farther due to the brace holding their legs apart, and thus can only really roll once and they are hitting one side of the crib or another.

Another interesting point that they made, was all the damage that can be done to walls when they are kicking the wall night after night with the brace on. I would like to also note that I thought of the noise this would cause too! :) Here is the solution they came up with....and now I can't find their blog. Oh dear! Well, basically what they did was build padded/upholstered side/head boards for the bed so that the boots and bar don't make contact with the wall. I may try something like this out, and build it three sides, and then use a sleep rail for the final side. I will have to wait until Lilybear won't fall over the side rail though! But when we do it, I will be sure to post photos!


Tuesday 5 June 2012

Another Trip Coming up and Interesting News!

Well we are about two weeks away from our next trip over to the IWK for Lilybear, and that means our Peanut is counting down sleeps till she gets to see Linda, and all the wonderful volunteers and staff of RMH again! :) I think she may get more excited every time we go! :) Lilybear is doing great. She is starting to experiment with letting go of objects she is using to help her stand for a few seconds at a time. Once she figures out the balance thing, I am sure that she will take off running instead of "toddling", but I can't wait.

I was watching a bit of the IWK telethon that they had on TV this past weekend, and touched yet again by the simple fact that we have such an amazing children's hospital! After watching some of the stories they aired, I felt I should send Lilybear's story in to the IWK foundation in hopes they could share it with others. My goal when telling others about the IWK is simple, I just want them to know how wonderful, and amazing the staff and volunteers are, and that they truly give the best care and treatments they can to their patients! If it wasn't for this amazing hospital, and the Dr's and Nurses, and Technicians at the IWK, Lilybear may not be where she is now. Any day now she may take her first steps, and we owe so much gratitude to them for getting her to this place.

I was contacted back by a lovely lady that works for the IWK foundation. She asked my permission to post Lilybear's story on theIWK Health Centre Foundation’s online blog – ‘Spirit of Giving.’For posting they  do called 'Feel Good Friday'! We were more than happy to say yes of course! I will be sure to post the link at the bottom of this post, and will let you all know when Lilybear's story will be posted.

Mommy Duties call, so that's all I have for you now! 14 days Till our next trip to IWK! Wish us luck!

Thursday 10 May 2012

7 Things You Don't Know. . .

An amazing Mother that I know, who has been through so much, shared this link on her Facebook page:

7 Things You Don't Know About a Special Needs Parent

The Mother in this article, I have never met, but I can relate to what she has written. Though our situations are completely different in so many ways, the emotions are very much the same. I thought that I would follow it with the same 7 feelings that I have about our Lilybear, and all she's been through. The only omission that I will make is for number 5 on her article, as I have had to say to myself over and over again that at least Lilybear is healthy! But I have met many families of sick children, whom my heart aches for every day. I can understand her wishes, and respect her feelings on this topic. I will change number 5 to another statement that I wish people would stop saying to me.

1. I am tired.
I am so tired. Words sometimes even cannot express how tired I am. We have been through a lot up to this point with Lilybear, and are in a better place now than where we started, but the tiredness remains. When I think back to the past 10.5 months, back to the many trips to hospitals, some times twice a week. To holding Lilybear while they stuck her in more plaster. When I remember the sleepless nights filled with tears, leg cramps, and trying desperately with my husband to find a position that she was comfortable to sleep in. The stress of what the Dr. will say at our next visit. Are her feet better or worse? Worry about if she will need more surgery in the future. The list could go on and on. I'm tired. . .  My husband is tired. . . Being a parent of a child with any type of special need is mentally, emotionally, and physically tiring. 
 
2. I am jealous.
 Not as much now as I was for months. As I watched other little ones doing things like rolling over, crawling, sitting on their own, and the list going on. Yes, Lilybear overcame all of these things. She has hit every milestone, and is now cruising along furniture, and getting ready to take those first steps. . . but for months I was jealous of every child who didn't have to fight as hard as she did. I was jealous of mothers who didn't have to struggle with finding ways to work around double leg casts. I was jealous of other babies getting picked up, and cuddled, and held by friends and family. . . when there were so many who weren't sure just how to hold Lilybear, so they just didn't try. . . But I am so happy to have gone through every minute of this journey with Lilybear, Peanut, and my husband. I was jealous, and may be at times in the future, but I wouldn't change it for the world. 


3. I feel alone.
At times, I have felt alone. Always though, I had my husband at my side who helped me through. :) I have loving family that were there when I needed them. But still at times, I've felt alone. Wondering if anyone else knows what was going on in my head. I am so thankful, and grateful to My husband, family, and my dear friend that has been through this the same as me. I may never have been alone, but I felt alone at times. 


4. I am scared.
More than most of these other feelings/emotions. I am scared. I worried before Lilybear was here, with my husband, and family. What would this all be like? Would she walk? Could they fix her feet? I feared appointments that determined if we were moving forward or backward with treatments. I was scared of having her put under for surgery. . . . both times. I am scared we will have another relapse, and that Lilybear would have to go through casting again. I am scared still that she may walk differently then her peers, and that she may be the 'different kid' because of it. I am scared even about writing this all out, still not even sure if I'll hit publish at the end, because I am scared of telling everyone that I am scared.

5. I wish you would stop saying, "it could be worse..."
I know I have even said this myself, and it really could be worse. I know that. . . I've met families that are going through a hell I don't even want to imagine. . . But just because it's true doesn't mean I need to hear it from some people that have no idea what we've been through. That may sound harsh, but I'm not talking about the people who know what all we have gone through, what Lilybear has had to deal with, and over come. I am talking about people that don't know, and say it because they can't think of anything else to say. I don't want to be rude, but I know it could be worse, and I would sometimes rather they didn't say it at all. 


6. I am human.
I get frustrated. I get upset. I cry. I make mistakes. I worry. I stress. I get angry. I get hurt. I am human. Just because my daughter was born with bilateral club foot doesn't change that. I have been given this beautiful baby girl that amazes me every day. She is stronger than I ever think I could be. She has helped me grow, and has given me perspective. Through all of this, I am a better person because of Lilybear, and my little family. . . But I am human, and that's OK with me, and I hope it is with you. 

7. I want to talk about my daughter/It's hard to talk about my daughter.
Most of the time I am very willing to talk about Lilybear, or Peanut. I am so proud of my girls, and I know my husband is too. They are amazing girls, and we love them from the bottom of our hearts. But when you are talking to any parent of a special needs child, you need to remember that sometimes it is hard to talk about it, or we don't want to go through talking about it again. When Lilybear had to go to IWK. It was hard to know that they weren't successful treating her here. And sometimes I didn't want to talk about it. When she had to start back at square one, I didn't always want to talk about it. When she had a relapse and needed surgery again. . . the list goes on. The point is that sometimes it is hard to talk about it. Sometimes I want to, but I can't find the words. That's why this blog helps me I think. I can hash it all out here. It's a lot easier to type then to talk sometimes. :)

So those are my 7 things . . . Good night 

P.S. 
 
I originally wasn't going to publish this post. I shared it with some members of my baby group on Facebook, and with their encouragement I am publishing it now. I agree with their thought that this post could help another parent going through situations like ours. I only hope that posting this will help someone out there that needs to know that they are not alone in their feelings. . . and that it's ok to have all of these feelings too.  Thank you to my baby group for given me the little push that I needed to publish this. :) You ladies are amazing!!

Sunday 6 May 2012

From Standing to Climbing!

So Our Little Lilybear is climbing on everything! She climbs on chairs, boxes, toys. . . oh my! Today I found her standing on top of this tumbler toy that she has that is about 2 feet tall. . . . She must've climbed it like a ladder, and I had to help her down. I haven't been able to leave the room with her on the floor in it much lately for fear she will climb something and fall! I have to keep my eyes on her! Peanut wasn't a climber until she was quite a bit older. . . So I'm not used to this!

We got our appointment for our next trip to IWK. June 19th is her next check up. So far so good though, she doesn't seem to be having any issues, and isn't even fussy when it comes time for her boots to go back on. She still has some trouble getting comfortable when she's sleeping, and as a result will wake up sometimes through the night. Usually all I have to do is go in, and untangle her from the blankets and she's fine though :).

I did another photo shoot with the girls the other day, when their Grampy Burt dropped by with some sweet little dresses for them! Here are just a couple of the pictures that we took! It was a lot of fun!





Two Chubby Straight Little Feet! I love these feet!!! :)



More straight feet, with a Micheal Jackson split, and a Beautiful smile too!



Sisters, and best buds!
Lilybear always wants to do just what her big Sis does :)

Friday 27 April 2012

Lilybear's First Pair of Real Shoes!!! :D










Sorry Sorry Sorry!

So sorry to anyone that follows this blog for the delay in my posting! We have been very busy around here!

Lilybear got FANTASTIC news on our trip to IWK last week! We went over hoping not to hear more bad news, and hoping for maybe an extra hour or two out of her bars every other day or something. What we got was the BEST NEWS! Dr. Logan advised that Lilybear's feet look fantastic, and where she is standing up and cruising a lot that we shouldn't hold her back anymore, and he said she had the go ahead to switch down to night time and nap time wear for her boots and bar!!! (that is about 12-14 hours a day, instead of the 23 hours a day that she had been wearing them!) We were thrilled!!!

We went out and got her a special gift to mark the day! We got Lilybear her very first pair of REAL SHOES!!!! :) We went all out and got her a cute little pair of Air Jordan High tops :) :) :) They are so cute, and very supportive of her ankles too which have some getting used to not wearing the brace all day!

She has been so happy the past week, and we have been trying to get her out doing things that she hadn't been able to do much with her brace on. It is so nice to be able to slip her in and out of the swing set at the park easily! She can go in and out of high chairs at restaurants with out me worrying that I'll get her stuck. . . . again, and need someone else to help me take her out! Other things that she has done that she didn't get to do last summer in her casts, or so far this spring was just to get down on the grass and roll/crawl around! No more worrying that she will ruin her casts or her brace for a change! :)

I am looking forward to taking her swimming the first chance we get that the hubby is off, and we can take both the girls. I am dreaming of all the little things she won't miss out on this summer too, like going to the beach, rolling around and crawling outside with her big sis, and the biggest thing is just how happy she is with her freedom! With in 2 days of having her boots off more she conquered the staircase in our house! All 16 steps! She is trying to climb and stand up on everything! And is adjusting very well.

I was worried about how upset she would get when it came time to put her boots back on for naps, and bedtime, but she handles it like a champ. Sometimes she cries if I wait too close to nap time to put them on, and she gets too tired, but that isn't new at all! I think I am having a harder time than she is with the adjustments for sure! I keep freaking out thinking that her feet are turning back in, because now that she can move her feet, she moves them in every way she can. Sometimes she will stretch her feet into a position that makes them look like they are regressing. . . but then she straightens them again, and is perfectly fine. I think it will just take some time until I am used to it! As a dear friend who's been through this said " I look at it like he needs to have full movement of them not have them stuck." I would probably want to move my feet non stop in every which way if I was (pardon the pun) in her shoes too!

That's all I have for you tonight, again sorry for the delay in posting! Please check the next post for photos of Lilybears photoshoot from her FIRST PAIR OF REAL SHOES!!!!

Cheers!

Wednesday 4 April 2012

Two weeks to go!

Updates on Lilybear? Well let's see, where to start? She has a double ear infection, a throat infection, and to ice the little Lilybear cake, she also has Bronchiolitis! Woo! But it doesn't seem to slow her down at all. She's still all smiles, and into everything. She just needs some meds, fluids, and a lot of rest! She's learning how to climb the stairs with out boots on, but hasn't tried with them on yet (thank goodness)! She is growing so fast! She loves to be outside, and absolutely loved her first time in the swing! I can't wait till the weather warms up a bit so we can take her out more often. She LOVES her big sis, but makes sure to terrorize her every now and then. What kind of a baby sister would she be if she was nice all the time right?

So in two weeks from now, I will be at RMH in Halifax. . . anxiously counting down the hours to Lilybear's appointment! Words can't really seem to express at this time how nervous I am about this appointment. I am so scared that we will receive bad news again. I am not quite sure how I would deal with more bad news, but I suppose I will find a way. I just wish it was over with now, so that I wouldn't have to worry anymore!

Wish us luck! Fingers crossed the next two weeks will fly by!

Saturday 31 March 2012

Under 2 weeks to go!

So I just looked at the Calendar and realized that there are less than two weeks until our next trip to the IWK!!! I am so nervous this time around! After heading over there in January with our hopes up that she would get more time out of her brace, only to be told that we had to go back to surgery instead! Needless to say, I am REALLY trying not to hope for anything at this point! I just pray that she will not need any more surgeries! We have been having much better luck with this brace, as her feet do not slip as much in them. They are also a lot easier to get on her. . . when she is not fighting to get away from me! :) She is just so busy lately pulling herself standing on everything that she can get her hands on!

 I still can't believe my baby girl is 9 months old either! She's growing up too fast! In honor of her 9 month from last week, here is a photo collage that I made for a mommy group that I'm a member of on Facebook!





So over the next two weeks, I may not have much to post about. . . But please keep my lilybear in your prayers and thoughts. . . Send us some positive vibes, for good news at IWK!

Thanks!
:)

Future Soccer Star in the Making!

Team Canada, Here we come! haha

Sunday 18 March 2012

Busy Busy Busy

It has been very busy around our household as of late! Lilybear has decided that it is her mission to pull herself up standing on anything, and everything around the house, both in and out of her brace! Be still my racing heart! I have had enough of being in another room and hearing a "THUD" followed by Lilybears cry and tears. I attempted to follow her around for a while to try and prevent these incidents, but my efforts were futile. Peanut would call out "mommy, I need help" from the bath room, or I would have to go grab the phone, or make supper, or even just turn my back for a minute, and "THUD" insert Lilybear freak out! I don't believe that most of the falls have hurt, as she is fine after about 3 seconds, but the misleading "THUD" is usually caused by her kicking her legs up, and banging her brace onto our hard surface flooring. So as you all can imagine, my heart stops for a minute each time. I brace myself for when she falls and really does get hurt! I am still brain storming a few ideas that will give her a bit more stability in her brace for standing up when she's not on her play mat, but I have yet to come up with an idea that will not alter any function of the boots and bar system. I will not give up though. Who knows, maybe I can patent the idea and help out all the other parents out there with the same issue with their little ones! I best be off, as DH is waiting for the computer, but I will leave you with a list of Lilybear's accomplishments of the day (ie. What she has pulled herself up standing on today)

1. Toybox
2. Couch
3. Love Seat
4. Dining room table
5. Dining room chairs
6. Baby gate in the front hallway
7. Play house window
8. Play house door
9. Stair
10. Piano Bench
11. Playpen
12. Crib
13. Bathroom Drawer
14. Bottom Drawer of her Dresser
15. Leapfrog Learning Table
16. Her Play Piano
17. Living room Chair
18. Car Seat
19. Dishwasher (while the door was open)
and
20. Eva's Reading Chair

And those are just the ones I can remember. . . sigh. . . I hope she improves her balance soon, or I may have a heart attack!

night all!

Friday 16 March 2012

Milestone after Milestone, my Lilybear she grows!

My dear Lilybear has started to crawl up on her hands and knees now, rather than the army crawl that she has been sporting for the past few months! We were very excited to see this! Another accomplishment that she has done, is to be able to stand up with out her brace on. She finds this a little bit more difficult as her ankles are weaker when she is not in her boots.

As a result of these new tasks that she has undertaken, we have had to deal with quite a few falls, and bruises! I just hope that she gets a little more stable over the next month before we see our Dr's at the IWK again! If she is able to completely master the standing up with out her boots on technique, we may be more likely to have more time out of the boots before may! Keep our fingers crossed!

Wednesday 14 March 2012

Amazing moments!

Sorry again for the lack of postings! I have been very busy with my two beautiful daughters, and DH! I also hurt my shoulder a few days ago, and haven't been able to go on the computer much! BUT I HAVE AMAZING NEWS!

Lilybear decided to walk today. . . with her boots on! I swear this kid is going to give me a heart attack! I feel my hair turning grey every time she does something like this! She walked half ways across the living room today while holding onto Peanut's little princess chair! Such an amazing moment to witness! Seeing other babies do this in boots and bar online is one thing, but let me tell you, when it's your own little one it is so much different! So scary, and emotional, and proud, and happy all at once! I can't wait to catch her doing this on video to share with you all!

Speaking of sharing videos! DH actually managed to catch Lilybear pulling herself standing on the play house today on his phone! So as soon as he gets home from work I will upload the video to share with you all! She has been hard to catch doing this trick since she learned it! Today, however, she was standing up on EVERYTHING! Pulling up on chairs, the couch, the play house, the stairs, the toy box, and an upside down little tin garbage can that Peanut plays with and sometimes stores toys in. She falls down a lot still, but she's working on it! She must hear me typing about her as she just woke up in her bed!

Video to come later! Thanks for reading!

Wednesday 7 March 2012

Ingenious Idea!

The past few days Lilybear has figured out how to go from army crawling on her belly, up into a kneeling position by holding onto something, and then pulling herself up standing! I have yet to catch her in the act on video yet, but I will post it once I have her on video! We had one real issue with her doing this. Our whole house has laminate flooring, or vinyl flooring, and her boots and bars slip like crazy on it! The only place she was able to pull herself up standing on was the foam mats that we have for her and Peanut to play on in our living room.

So I put on my thinking cap, and thought "wouldn't it be great if there was some way to put grips on the boots and bar so that she doesn't fall when she tries to stand on the hard surface floors?" And here's what I came up with. We have a ton of Duo Derm left around the house from Lilybear's blisters (which are healing right up btw! They are all scabbed over, and will hopefully be mostly gone by the end of the week!) So I cut out pieces of Duo Derm and stuck them on the bottom of Lilybear\s boots and bar! She can now pull herself up standing by holding onto things in any room in the house! Fantastic? Well. . . I may live to regret it (haha) but She is so proud of herself, and building up these muscles is important work for when she gets more time out of the bar to prevent relapses! I will post a photo of the bottom of her boots tomorrow. She is sleeping now, and I don't want to wake her to take the picture!

Monday 5 March 2012

Beginning to heal

Lilybear's blisters are starting to heal up, but are still very red and sore looking! Poor little thing! The left one is about half the size, so I think the cream is working. Hope we see even more improvement in the AM!

Sunday 4 March 2012

Still very sore!

Lilybear's feet look like they are starting to heal up a little bit. I took off the DuoDerm this morning, and it was still very raw looking. DH and I decided that with all the moisture getting trapped under the duoderm it wasn't healing. So we left her boots off for her hour after putting her antibiotic cream on, and it started to scab over. So we put her boots back on with out the duo derm. I checked again tonight when I had to put her cream on again. It was still very sore looking, but at least it is scabbing over now! It was bleeding a little from taking off her sock, so I left her out of her boots for about 10 minutes to make sure the blood wouldn't get on her socks or boots, and then put them back on. Hopefully it will look a lot better in the morning. I am supposed to follow up with our Dr if it doesn't look better by then to put her on an oral antibiotic. Wish us luck!

Friday 2 March 2012

busy busy busy around here!

Sorry to all my followers for the lack of posting this past week. We have had an eventful past few days to say the least! Lilybear has got some more blisters, poor dear! This time we thought that we would be alright, as we already had the duoderm for them, and some moleskin to take the pressure off the blisters, and to help them heal up quick. . . What we weren't counting on, was the one on her left foot getting infected! Here is picture That I took yesterday when I took off her duo derm.  (warning to those with a weak stomach, they are kinda gross!):



The duo derm pretty much liquified in parts so this was after most of the "goo" was cleaned off. She cried so hard when I was trying to get it off, and clean out the blister! Broke my heart into a million pieces!

I sent an email off to our fabulous Nurse at the IWK to see if they had any tips for clearing it up. She emailed me from home, bless her, and recommended that we take her to our GP for him to check her out for infection as she had some symptoms that it was infected. So we called out GP office first thing this morning, and they told us to bring her right in, and they fit us in. He said that the blister looked to be in a very early stage of infection. So he prescribed an anti-fungal cream for her to use, and advised if it isn't starting to look better, or if it is worse on Monday, we are to take her back in to his office, and he will prescribe her an oral antibiotic to make sure we nip the infection in the bud before it gets bad.So far we have put two treatments on, and will be applying the cream three times a day, and putting some new duo derm on each time. Hopefully it clears up quickly!!

To add insult to injury today, we had our appointment for Lilybear's 6 month needles, and her flu shot! Wasn't bad enough that she was blistered,  infected, and picked at by me and our GP. They did her 6 mth assessments, and gave her a needle in each leg as well! But my little girl is a trooper alright! She was all smiles and giggles with us after a nap!

On a side note, Peanut has had some trouble over the past 9 months having multiple UTI's. She was booked for an ultrasound to check out her bladder, kidneys, and Urinary tract later this month, but they had a cancellation, and we will be going in tomorrow morning! Hopefully they won't find anything! If they do, I may be requesting a referral to the IWK as I have some trust issues with some of the dr's on PEI after what happened to Lilybear! To make her night tonight, DH looked after the Lilybear for us, and Peanut and I went to see The Lorax, in 3D! It was so funny, and Peanut had a great time! She was up a little late trying to unwind after the movie, as she had so much fun eating popcorn, and skittles! :) Love my little Peanut! Can't wait to do it again some time!

On a bright note, Lilybear has been sleeping much better lately. I have been putting her on her side, and propping up her legs a little with her blanket, and she has only woken up once around 3 am for a feed the last 2 or 3 nights now! Hopefully we have found a comfy position for her to sleep in, and she gets some well needed rest. I'm not going to lie. . . I need the sleep too!

I am off to bed now, but rest assured I will keep you all posted as to how Lilybear is doing over the weekend, and where we go from there!

Tuesday 28 February 2012

Some day I will sleep well again!

Sorry for the lack of posts the past few days folks. It's been a very tiring adjustment period for all of us. Lilybear is doing well, and is getting used to the new boots and bar. She only woke twice last night, which is much better than previous nights. Once was just because she had crawled in her sleep to the top of her crib, and was crying cause I guess she bumped her head. I moved her back to the other side of the crib and she went right back to sleep. The other wake up, she was up for about an hour as usual. Not too bad :)

I on the other hand, was wide awake even after the 1 hour wake up. I fell asleep the past few nights with the Peanut when she goes to bed around 8pm. So when Lilybear wakes up around 2 am, I am wide awake! Oh well, at least I am getting some sleep right?

Lilybear has been trying some sweet new maneuvers in her new boots and bar. She is currently experimenting with crawling up on her knees instead of army crawling, but hasn't really gotten anywhere like that yet. She mostly just rocks back and forth, then drops to her belly and army crawls. Silly little bear! Another task she has been attempting is to pull herself up to standing. She has done it a few times, with no help at all! Little trooper! Hard to believe just a few short weeks ago she had surgery on her left heel! We have discovered that she is able to pull herself up much better on carpet, than on the foam playmats that we have in our living room for her and Peanut to play on. We may need to invest in a carpet floor mat to help her out a bit. And lastly she has been once again. . . attempting to climb the stairs. This task did not end very well for her today! She pulled up on her knees, and then tried to stand up to climb up the steps, but fell over on the floor instead. . . but the tough cookie that she is only cried for about 5 seconds, before she was struggling away from me to try it again! Her motivation? Peanut sat at the top of the steps, playing and taunting her to "come get me 'willybear'" Oh the things sisters will do!

As far as Lilybear's boot progress, She is still slipping in the new boots on both feet. I am hoping it is just because the material is still stretching, and not because the boots are too big! We have been trying out a few different pairs of socks to see if some keep her heels down better than others. So far, her thicker cotton socks seem to be working the best, but that could be just because they are thicker. A tip that I found online last night that I am going to try is to put a bit of moleskin on the heel of the boots to keep her heel down. Once I find her moleskin, I will try this out and let you know if it works!

As for her poor little feet and ankles? They are still very dry and peeling skin, despite putting lotion on every day! Her sore spots on the back of her knees have gone now, but she still has some pretty raw looking skin on the front of her ankles. I put some duoderm on them today after her bath, so I will check back on them in a few days to see how they are healing up.

We have our follow up call from IWK on Friday of this week, so if her heels are still coming back up we may make another trip over so they can check them out. I would hate to have another relapse, and end up in surgery again! That about covers all that we have been through in the past few days. Pictures to come of Lilybear in her new boots...







Saturday 25 February 2012

Another restless night.

Lilybear was up 7 or 8 times last night.....we are both very sleepy today! We will be spending some time today trying to get Lilybear standing up more! Updates later tonight!

Friday 24 February 2012

The new brace!

Forgot to take pictures of her little chubby feet for the blog with everything that has happened in the past two days. I will for sure get some posted tomorrow! In the meantime, Here is the new brace: