Cast # 4

This post has been brewing in my head for a few days now. I just needed a few days to sort it out and well celebrate the good news of our soon to be baby girl.

Kiya got cast #4 this past Tuesday. It was a VERY long and draining day. Kiya as always was such a trooper. In my heart, I was hoping for just a little even a smidgen of correction in her curve. That was not to be this time. Her stubborn little curve gained 4 degrees. So we started the day at 66 degrees and once again our doc worked his magic and she is holding at 15 degrees in cast. Amazing. Her flexibility is what keeps me going.

I was devastated by the news that her curve got worse. It was a tough blow. However, not only did I have my wonderful husband, I had some dear friends there to help pick me up. And Linda, our nurse to insist repeatedly that all is fine and that I shouldn't be worried. I am so grateful that Catie, Tracy,Sarah and Rachel were there to pick me up after the news of her curve. I am not sure what I would do without these amazing women that I am so honored to call my friends. Catie has been down this road with her iron man and her hope and his progress is such an inspiration to me. Sarah just gets it and well Rachel is so sweet and dealing with her own cast day stuff and yet there she was to be a support.

So after the shock of that news and a nice breakfast chat with Tracy, it was time to get to Miss Kiya. She is usually pretty grumpy post anesthesia but once again my amazing girl just rolled with it. She was a little out of it and a little mad but once she got her crackers and some juice she was much better. I can't thank Tracy enough. She was right there by our sides encouraging Kiya to eat and drink and getting her more crackers. I just met the woman in person that day and wow. So grateful to her for being there when she didn't have to be and for her care and concern for me and for Kiya. I am lucky to have met her.

Kiya was sporting her new pink cast and was ready to get to the tape. She was even helping the nurses tape her cast. She sat so still and was just amazing. I was so proud of her. All was well until it was time to trim the shoulder straps. From there the day was a blur. Kiya was hysterical. I was a mess and the new latex free tape was TERRIBLE. It just became too much at one point.

I hate scoliosis and I hate this cast. There is extra fiber glass, crappy tape and it is so tight. I will be shocked if we don't have sores under her arms.

I hate that sweet Kiya has to deal with this and yet deal with it is what she does. She is truly amazing. She was up and running around that afternoon. She even went to preschool on Wednesday. She asked to go. She had a great time. She went accident free in her new big girl underwear. We had our first post cast laundry room bath and she was totally fine. She rarely if ever complains. She is such a superstar.

So where do we go from here....we keep on casting. That is what the doc says and that is what we will do. So here is to the next 11 weeks.

Cast free and mixed emotions

I copied this from a post I wrote today for our luckycast blog:

We cut off cast number 3 today. While it was cast 3 in reality it was more like cast two since we had to take such a long break between cast 1 and 2. But regardless the blue cast is now in the garbage.

Sweet Kiya, aka my string bean, is itchy, bruised and slightly off balance but is looking straighter. I am so excited for her to be able to enjoy summer toddler fun minus the cast for one week anyway. She will get to run in the sprinklers with her friends and take baths and enjoy.

I love the squishy hugs and the pure joy that encompassed her once we got the cast off. She was so mad when we were trying to cut it off and once it was off you could just see her face light up in pure joy.

This week of free is always a little strange for me. I try to enjoy all the hugs and fun and yet I watch and wait to see if/when her back will bounce back. I pray that it doesn't but we just don't know. That is the worst. She looks so straight right now. So straight, tall and skinny.

So we head to Shriner's on the 19th for supposedly a pink cast. She keeps saying she wants a pink one. She said that last time and we came home with blue.So we shall see.

Kiya truly amazes me. Nothing stops her. No sooner than we cut off her cast did she stand up and try to awkwardly walk away. She was a little off balance. After her bath she was back to running. She is nothing short of an inspiration. She is 2 1/2 and has a beautiful outlook on life. I love her goofiness, her stubbornness and her dare devil spirit. All of these traits are serving her well on this journey we are on. This kid has taught me so much about life and I am truly honored that I am her mom. I am so very blessed in so many ways.

Pictures of the Big Day :)

The plan for the day was for Kiya to get a great night's sleep, eat well, take a short nap and then off to the Children's Museum for some fun before cast cut off. The reality was Kiya was up at 6:30am, ate okay, refused to take a nap and was pretty grumpy for the first 30 minutes we were at the museum. She warmed up to it all and had a pretty good time. She loved the art room and of course the water room.

Some of the kids were kind of mean to the little kids. They refused to share and were teasing them. I was annoyed and as you can kind of see in the first picture, so was Kiya. 

Overall I think she had fun. It would have been nice had she not been so grumpy but such is the life of an almost 2 1/2 year old.

We headed home to cut off the cast. We thought we had the right kind of tin snips but we so didn't. Kiya started screaming and the snips didn't work at all. So off to the store Dave went in search of a better pair. Meanwhile Kiya and I watched Tv and she kept saying "wanna belly free. Wanna my belly free. no cast." It was cute and kind of sad too. But that cast had to go. It was GROSS and super tight on her poor belly.

Here is a picture of her back post bubble bath which she LOVED and asked for all morning.



 And here is the nasty pink cast. Once we had the right tool it was actually pretty easy and took less than 10 minutes and the best part was Kiya was so calm. I kept thinking back to last time when the doctors had to cut it off because of the sore. It took me and 2 nurses to hold her down and she screamed the entire time. This is definitely the way to go.

So we are enjoying our hugs and realizing just how skinny Miss Kiya is. Wow. She is a string bean. She was a little clumsy at first but better now. She slept great. No snoring which was nice. Now we just need to keep her healthy so we can get cast 3 next week. I asked her this morning what color she wanted her cast to be and I quote: "Mommy, pink. I wanna pink cast. Yeah pink." Yup that's my girlie  girl.

In other news....we got our first pee pee dance.  Yup we got home from dinner last night and Kiya was bouncing and kind of grabbing at her diaper. Sure enough we took her to the potty and she went. And her diaper was dry and had been dry for a couple of hours. Woohoo.

Tomorrow is a BIG day around here

Our 12 weeks in cast number 2 are coming to an end. We are cutting off the cast tomorrow. I am eager for my squishy hugs but hate that they will last for about a week and then we start again.

I am trying to stay hopeful that Kiya's numbers are better. I would take just a little better. Just please not worse.

To celebrate we are going to take Kiya to the children's museum and get wet, dirty whatever. Then we will come home and cut the cast off. Today we bought her some very special Dora bubble bath so off to a tub full of bubbles.

We head to Shriner's for cast number 3 on the 26th. I am hoping to enjoy the week of hugs and freedom. I know that I will be over analyzing what her back looks like...sigh....it's just not possible for me to look at her out of cast and not worry.

Pictures tomorrow of cast cut off and fun at the museum.

I know my last post hinted at some news....we are getting closer to sharing but not just yet.

Cast #2

Finally posting cast #2 pictures :)  Isn't she adorable? She loves her pink cast as I knew she would especially since she picked the color herself.  We are about 1 month in to this cast and doing great. Kiya is amazing. She is running all the time and she just knows how it all works. She knows her baths are in the laundry room with her Dora doll. She knows that we wash her hair on Sundays in the kitchen sink and after we wash her hair she gets to watch her favorite shows Dora, The Fresh Beat Band and Yo Gabba Gabba.

 There is no cut out in the back of this cast this time. Our doctor doesn't think it is necessary so we are going with it. I kind of miss it as it made for a good tickle spot but whatever.

 She is straighter and seemingly taller while in her cast. I swear before this cast she was just a tad shorter than the counter top and now she is clearly taller than the counter top which means she can grab oh everything. Sigh.... She loves in particular water bottles, keys, daddy's wallet, etc. She will usually bring you the items she grabs which is cute.

We are so grateful that we have these casts as a treatment option. Cast life was scary at first but totally doable. It is our reality and frankly I don't mind. My baby girl is getting her back straight and that is all that matters.

Back to the beginning

So yesterday, Kiya got cast #2. She did great as always. Such a trooper. It was a VERY long day that took WAY too long to do everything. At one point I was tempted to just grab the tape and padding and just finish the job myself but whatever. All in all I love the staff at Shriner's Chicago minus maybe the clueless anesthesiologist and the new nurse who was I believe the source of the slow down.

Miss Kiya is now sporting a brand new very pink cast. She picked the color herself. I knew she would pick pink. She only recognizes a few colors accurately pink being one of them and her latest love so I knew as soon as she saw it that is what she would pick. My girly girl didn't let me down.

She is adjusting well. A little sore and a little clumsy but overall doing great. She is walking pretty well. She is starting to bend and pick things up again. She will only sit for short periods of time without a wall or pillow behind her but she did that last time too so that is to be expected. The thing that shocked me is last night she slept on her side on and off. That took a month plus in her last cast.

The best part of the day was being there with 2 of our Lucky Cast families. That makes the long casting day just a little easier when you can share it with your extended family. There were definitely some people we missed and wished could have been there but we know they were there with us in spirit and cheering us on through facebook.

I was kind of prepared for Kiya's xray numbers and kind of not. When she started this journey back in September she was at a 52 degree curve in her spine which the doctor was able to hold at 15 degrees in her cast. Well yesterday Kiya's out of cast xray came back showing a 60 + degree curve so worse than before. Two things happened here. One the xray wasn't perfect, Kiya's shoulders weren't squared up and the second is that Kiya was out of cast for just over 2 months. The doctor worked his magic again and was able to hold Kiya's curve to 15 degrees in cast again. So I am holding on to that. Kiya is pretty flexible which should help. He is still hopeful that we can get complete correction if we stay the course so we are in this for the long haul.

I feel like we are starting all over and are in cast #1 really. Not going to let it get me down though. We have amazing friends to walk with us on this journey and pick us up when we fall or need the extra encouragement and that makes the world of difference. I cried 1 time yesterday and that was when they rolled Kiya back to surgery. Last cast, I couldn't stop crying and had to hold on to nurse Gwen for support and a walk before I could even get near Kiya post surgery. Why was it different this time even with the unsettling starting number? Well, we knew what to expect with the angry screaming toddler post anesthesia. We knew what she would look like with the cast on so there wasn't the shock factor. We knew that our friends were right there with us and that we can do this together.

We are all readjusting to our new normal and breathing a sigh of relief. We have 12 weeks to not worry about Kiya's back getting worse. It is a nice feeling. These last 2 months of looking to see if her back was crooked. Watching it get crooked was tough.

For all the numbers, check Kiya's Kare Korner.

Bad blogger

I am a bad blogger. I admit it. It is hard to find the time with working full time and all. I miss it. I do. I just choose to spend what little free time I have with Kiya.

So what's new? Well, Kiya is settling in to the terrible two's. Wow. That kid has some serious spunk and she will make sure anyone within a few mile radius can hear her Good thing she is so cute :) One minute she is singing and dancing and the next she is throwing a fit kicking and screaming on the floor.

She has decided that strollers are for babies and so are shopping carts. She wants to walk. She doesn't always listen but a few timeouts/ins for not listening has helped her remember to listen to mommy and daddy.

She has also become quite bossy. Her latest and I quote "Mommy, 1, 2, 3, sit down. sit down". Not sure where she picked this up but I am assuming at daycare. They must ask the kids to sit down and count....not sure but am definitely going to ask her teachers today.

We also found out that Kiya will be getting her next cast on Monday January 31st. Six days. Six days of real baths and squishy hugs left. I am full of emotions. I am thrilled that this is really going to happen but also sad that sweet Kiya's cast free days are just about over. I want so badly to hear what her xray numbers are and yet I am terrified about them. I look at her and sometimes she seems really crooked and other times not. I hate scoliosis. Hate it. But I won't let my hate stand in the way of beating it and hopefully that is what we are doing with these casts is kicking scoliosis to the curb.

Life is definitely keeping us busy. I am not loving working full time. I may inquire about reducing my hours and working part time just to gain a little more sanity if that is even possible when you live with a 2 year old.

Big change of plans

Today was a very LONG day. I had a job interview that seemed to go really well. Then we had Kiya's 2 yr check up in which we were planning for a routine visit and 3 vaccinations.

Yeah things didn't go as planned. Let's start with the good news.

Kiya is hitting all developmental milestones and as expected a little behind in gross motor. She is nearly perfect in all ways. She weighed in at 29.5 lbs with her cast on so about 26.5 lbs. She is 35 inches tall. She is in the 83rd percentile for height.

As we were discussing just how resilient Kiya is and such a trooper, I mentioned that her cast was starting to stink. I noticed the smell just a couple of days ago. Well, Kiya was sitting on my lap and I was rubbing her neck and looked down her cast.

I look down her cast a lot. I rub a baby wipe where I can to get whatever grime I can off. We are always checking for sores etc.  Well, we majorly missed this one. Kiya has a pussy infected quarter size keloid right smack dab in the middle of her back. We found the smell.

I made a panicky phone call to Shriners hospital to talk with our nurse. She said get Kiya out of that cast ASAP as in now. So we started untaping, unpadding and scrambling trying to figure out what we were going to do. We were finally able to convince the ortho department to cut off her cast with the saw. Yeah not fun. Really not fun. Lots of screaming but really she did great.

We then peel off her cast shirt and wow. Seriously GROSS. Poor kid. The plus side is keloids don't hurt, it is a scar that spreads beyond the original injury and is essence becomes a separate growth.

So the plan for now is to put Kiya on antibiotics for 10 days to rid her of infection and allow time for the skin to heal. Then we have no idea. I sent pictures of the keloid to our nurse at Shriners and she is going to consult with our doctor.  It appears we will have two options. Remove the keloid, allow that to heal and cast again with extra precautions or leave the keloid, cast and use extra precautions. We are in a holding pattern for now.

Kiya is cast free for at least the next 3 weeks which means we get baths, squishy hugs and some extra worrying. I am trying not to think about all of this time out of cast. We took her out 2 weeks early.

I have such mixed feeling about this whole thing. I know we had no choice and I know everything happens for a reason. So I am going to try and enjoy this bonus time with Kiya cast free. I am loving the hugs and seeing her walking cast free and I will try not to worry too much about her curvy back.

Cast pictures--finally :)

Life with a frustrated, determined and loud toddler

Kiya is doing fantastic. In fact her physical therapist was just so impressed with her. She couldn't believe how well Kiya was walking, bending, etc with her cast on and her ankle supports. She doesn't think it will be all that long before Kiya takes up walking full time. Right now it is a part time activity but standing is much more comfortable and as she gets used to her ankle supports that will help too. She also commented on how great Kiya's hand/eye coordination are, her verbal skills and just how well she will imitate sounds, words etc. The two of them had fun yesterday.

That said there are times when Miss Kiya gets frustrated. And her frustration leads to screaming. Sigh. Bring on the terrible two's. If she tips over and is in a corner somewhere she has a hard time maneuvering herself to be able to get out. Also since she still crawls at times and wears a lot of leggings, she slips and falls a lot on the carpet and the linoleum floors. Both of these require a scream and usually mommy asking if she needs help. If she says yes I help her otherwise I encourage her to try again and do it herself.

She also really wants to try to climb the stairs again. This Mama is not ready for that one. She is top heavy and only been in her cast a little over a week. Maybe in a few weeks....maybe....or not. Sounds scary.

She is very determined to do things herself yet sometimes she just can't, hence the frustration. She has a great vocabulary so we are encouraging her to use her words and not scream and if she is to whiny/screamy/frustrated we take a break. A break includes her sitting in her chair with her blanket (also known as tee tee thanks to a girl her age at daycare) and calming down. She gets up when she is ready and is usually in a better mood after that.

Volume control is an issue in that she doesn't have one. She is set to LOUD all the time doesn't matter if we are inside a store, at home or outside at the park. Screams of "hi, bye bye, nigh nigh" are all common.
We also hear a lot of "Mommy, Daddy, r you?" (as in where are you). Or my favorite, "Mommy, now or Daddy, now." She also repeats everything and since Badger can be a tad naughty at times and is told no a lot, she has been yelling at him. Poor guy. So we are also hearing, "Doggie, no. Sit." Doggie is Badger, Bassy is Sebastian. She rarely yells at her Bassy. Though I was calling for Sebastian to come inside and she was behind me saying, "Bassy,  Bassy, r u?" We are working on not saying no to Badger but that is tough. He has issues but we are trying to praise him and teach Kiya "Good Doggie".

Yesterday we were at the grocery store and she was singing which she does all the time and when she finished "wheels on the bus" she screamed "yeah". I told her she was being loud and she repeated "loud, loud, loud" to the tune of "wheels on the bus". Sigh. And no there was no inside voice at all. She is just loud and loves to hear herself and wants to make sure everyone can hear her too. It always cracks me up when a former teacher at daycare says that she doesn't hear Kiya talk much. I was like, really, try spending 30 minutes with her in the car.

So life has returned and we are settled into our new normal. Kiya is just a remarkable kid and I am truly in awe of her. Nothing is going to stop her and I think that is a great quality. Next week she starts her transition to her new room at daycare. I am not super thrilled about it as we will have brand new teachers that she doesn't know and will now have to deal with her cast. I foresee this Mama Bear having to step out and set up some guidelines but we shall see. I am trying to be open minded about it but I know what they are going to want and it isn't what I want. For example, Kiya falls asleep on her own. She doesn't need to be rocked and while I complain about nap fail she does just fine if she chooses to skip one. Apparently these teachers want all the children to sleep. Kiya sometimes sleep 13+ hours a night and therefore doesn't necessarily need a nap. In fact even in her current room on her daily sheet there was a frowning face because she only napped for a little over an hour one day. Sigh....sorry she is a curious kid and just can't be bothered with sleep.

Learning Curve

We are adjusting to our new normal. We all have a lot to learn. Just about everything is different now. The one constant is Kiya's super silly, sassy personality. She is back and full of attitude.

We gave her a sponge bath in the laundry room sink. That was a little interesting but went okay. It will get better. We haven't attempted hair washing yet but will this weekend.

Diapering is going okay. She isn't a big fan of it but is getting a little better with it. It just feels different and we have to tuck the diaper up under her cast in front and back.

The two biggest challenges we have had have been eating and sitting. When Kiya was sitting in her high chair with the tray on, she couldn't really see her food and she couldn't reach her sippy cup in the cup holder. It was a little better when we took the tray off and pushed her up to the table. We have now moved on to the booster seat right up to the table and that appears to be the best option. Her arm span is a little shorter now with the cast on so she can't reach as far.

Then there is sitting up. She really can't sit up all that well by herself. She needs to be leaning up against something. She has sat up without support but not for long and it appears to be uncomfortable for her.

So we still have some little kinks to work out but we are all moving forward and learning and adjusting. Kiya is a total rock star and has been amazing. Sure she is whiny, demanding and full of attitude but I am pretty sure that isn't all cast related as she is almost two and well has always been full of drama :)

I am pretty convinced that we have the most adaptable, accepting, loving, sweet and sassy little girl.

**Updates on Kiya's progress in Kiya's Kare Korner

Cast Day

So yesterday was the big day. It was overwhelming and long to say the least. We had to be there at 6am and we walked out the doors about noon.

I am not even really sure I can accurately put into words what yesterday was like. It just was. However, I can say that I really feel like we had the best first cast day ever. Why? Well so many reasons really. First, we got to share it with two amazing families that have been with us on this journey the last few months. Their sons were there for cast #5 and the hugs, words of support and encouragement meant the world to us. I have life long friends in these women. Their husbands and parents are pretty amazing too. And the kids, well I think we had the 3 cutest, bravest and most amazing kids in that hospital yesterday.

Where there tears? Oh yeah. I cried a good number of them.Where there screams? Oh yeah. Kiya post anesthesia screaming was really tough. Really really tough but once we were able to be with her it helped. Yes we could here her screaming from the waiting area. I am not sure I could have prepared myself for that. I was warned by my new friends and Nurse Gwen (who is a saint in my opinion) but wow that was the worst part of the day for sure.

We were with Kiya up until the rolled her back to surgery. We even got to gown up and watch cartoons in pre-op with her. They gave her some medicine to help ease separation. Kiya LOVED it and wanted to more. Instead of settling she was all over the place. The nurse bought out this crazy singing/dancing super annoying monkey and she finally sat and watched that and settled. They rolled her back just before 8:30am.

We went and had some breakfast and waited. We sat with one of the other families and just chatted while trying to pass the time. Finally, the doctor's showed up. We got to meet her new Doctor also and he is GREAT. They told us her pre-cast x-ray showed a curve of 50 + degrees (she was previously around 40) and that they were able to hold her curve at 15 degrees in cast. I think I teared up and would have fainted had I not been leaning on a desk. I was never expecting to hear such a low in cast number. That doesn't mean when we take the cast off in a few months that her curve will be 15 it just means they were able to manipulate her spine and hold her at 15 for the next few months. I so wish I would hear 15 for her next x-ray but that is unlikely. We were assured that this was fabulous news for a first cast so we went with that.

Next up was taping, trimming and a little more trimming. The cast saw was not Kiya's favorite nor was Nurse Gwen and her tape. Did I mention that Nurse Gwen is a saint. She just loved on sweet Kiya and she could see that she was a spunky, spirited kid. She wished us luck with her :) She was just the best and didn't even mind when Kiya flung yogurt all over all of us really. She just laughed and said at least she didn't puke on me :) Robert had to trim a few places on the cast and really he is a gentle soul with all the kids as well.

So here we were with Kiya in her freshly taped and trimmed purple cast and kind of like now what. Our new normal was starting to set in. We had to change her diaper and that was challenge but some kind words from a sweet grandma helped. Now I feel like I could do it in my sleep. We had to adjust. We all did.

Kiya really did great. Much better than I had anticipated. I was preparing myself for the worst. All the nurses, techs, doctors, parents, etc kept commenting that Kiya really did do fabulous for it being her first cast. I was prepared for a long 3 hour drive with a grumpy toddler but I got a quiet peaceful ride. She asked for teddy grahams, pretzels and her dolly and then she slept. So sweet. She spent the afternoon on the couch where she watched her favorite shows. I fed her some yogurt. She did ask for a hot dog so of course she got one. She did manage to eat some of that by herself in the high chair. We are still working on the feeding situation as she can't see her food as well.

She can't really sit up by herself and as of last night couldn't stand up, roll over, crawl or really do much of anything. She did walk a few steps holding our hands but not much. I don't blame her really. She was in full traction and pulled every which way possible to get that 50 down to 15. She was sore and top heavy.

She went to bed at 7 after some Tylenol. Woke at 9:30ish and we gave her some Ibuprofen. She slept until 1am. I changed her diaper and gave her some tylenol and she slept the rest of the night.

Kiya is a truly amazing kid. She surprised us yesterday again with her resilience. I don't think I give her enough credit. I have a lot to learn from that little one. I am proud to be her mother. And if I ever doubted (which I don't) that we truly attached and bonded as a family, I got complete confirmation in that yes in fact we are. She needs us. She calls for us. She settled down for us. And we need her to keep us grounded and to keep on trucking. Nothing is going to stop Miss Kiya and I love that about my daughter.

***Update in Kiya's Korner also and will post updates about day to day there as well

Big News!

WE GOT A CAST DATE FOR KIYA!!! There was a cancellation for Tuesday September 14th. Yup, that is 4 days from now. I can hardly believe it. I booked a hotel room. Two of my Chicago Sisters will be at Shriner's that day also so I am so excited I get to meet them.

I am slightly freaking out a little. 4 days of baths left. 4 days of squishy hugs left. 4 days until I have a ticked off toddler. I know we are doing the right thing but it doesn't make it any easier.