Where to begin?

I have sat down so many times to update on the blog but then either I draw a blank on what to write or I get interrupted......the second is usually the case.  I'll try again today.....

Today has been a lazy day...it's snowing and I have one "just got done being sick" kiddo home and one "I' just getting really sick" kid......I'm keeping my fingers crossed that kiddo #3 stays healthy!

Kira is doing well as far as her recovery from surgery goes.  She seems to be adjusting well to not being able to be up and around-- Jason and I joke that maybe she's adjusting toooo well and it's going to be an adjustment when she can be up and around. :-)  Unfortunately she is pretty sick right now.  She has a high fever, headache and awful cough.....I'm not liking where it sounds like her cough is headed.  Fingers crossed that we'll be able to nib this in the bud quickly.

Kira has really enjoyed seeing her OT and PT for her home sessions.  She only got one session in with her homebound teacher before she got sick but she seemed to really hit it off with her.  Hopefully we'll be able to keep working on some of her reading that she left for Kira.

Dylan was very excited to get to go see monster trucks with Jason last weekend.  He was in heaven!!  All the pictures are on Jason's phone but as soon as I get them on the computer I'll be sure to share.  Unfortunately once they got home, I could tell that he wasn't feeling the best and he's been home sick since.  I think he should be able to head back to school tomorrow.  (I'm not sure who is more excited about that, Dylan or Mom!)

Eva is doing good.  So far she has managed to avoid that crud that Kira and Dylan have but I have a feeling it probably just a matter of time.  She is LOVING riding back and forth to school with her buddy, Lorelei.  I'm not sure she will ever want me to take her again now.

This has definitely been a a crazy time in our house and I think we've all had our breakdown moments.  

There are days that I have 3 kids who are all needing/wanting my attention, more than normal because things are so crazy right now and I feel like there's just not enough of me to go around.  I am just starting to really realize what a long road we have ahead of us......it's not just about making through both sets of casts, getting the 2nd set off and being able to walk out of the office. (which I did "know" but I didn't really "know."  Kira is going to have to learn to walk again...granted, not from scratch, but her feet are going to (fingers crossed) in a totally different position and it will feel completely different to her to walk.  It's just a really weird (?) feeling to not know what exactly it will be like.

Time will tell........

Coming up for air....

I think I THOUGHT I knew how rough the first few days after Kira's surgery would be but man, oh man, I knew NOTHING!

The morning of Kira's surgery we had to be at the hospital by 6:15 AM which meant we had Kira up around 5:30 AM.  I knew that she would be nervous but I was just praying that IF she was going to have a meltdown she waited until we were out of the house so that D and E wouldn't get an early wake-up.  The first thing she told me was that she was nervous which I obviously told her was okay and understandable. (DUH!)  She snuggled with Eema for a few minutes and we were off.  She was quiet in the car but was still doing "okay."  She was fine until they called her name to go back to her pre-op room...she fell apart.  It was fine, I expected it but it still broke my heart.  She just couldn't get it under control. Jason and I took turns snuggling with her.  The staff was great as usual.

Right at 7:45 AM they were ready for her so I crawled on the bed with her and off we went.  She was so sad...but I just kept telling her it would be okay. (I may have been saying that more for me than her though.)  Once she was asleep, Jason and I hung around the pre-op room for a bit and then headed down to the cafeteria where we stayed until we got the page that they were almost done.  They were done sooner than we expected which made me a little nervous since the Dr. N had said that if one foot took a lot longer than they expected, they may only do one side.  That wasn't the case at all we found out.  As it turned out, they only had to do 2 of the 3 procedures he had originally thought.  His words were, "It went really great" when he walked in the room. :-)

Post-op was ROUGH...really, really rough.  She was in a lot of pain and really upset.  It took quite awhile for them to get her pain to a point that they were comfortable moving her to her room.  

Once we were settled in her room, she calmed down a lot, especially once people could just leave her alone.  There were a lot of people in and out of the room but she eventually did okay with it.  We got very little sleep the first night.  She lost all feeling in one of her feet so they ended up having to take that cast part way off because they were worried about swelling.  She had a couple of other issues which fortunately took care of themselves without any extra "help."  We were awake around 3:30 AM for the the cast stuff and pretty much never went back to sleep.  It made for a long day on Wednesday......as Kira got more tired, she tolerated less and less from the doctors and nurses.  She was impressed with her pink and purple casts though!

We spent lots of time cuddling and watching Brave and her new McKenna movie from American Girl...over and over and over and over again!

We got home on Thursday and she did pretty well.  The "firsts" made her nervous....us getting her out of the car, getting to the bathroom ,etc.  We were able to keep her pain pretty well under control by making she sure got some middle of the night doses which she doesn't remember at all.

Today is Sunday, 6 days from her surgery and her perky self is coming back.  She's still tired but I think some of that is just from having to sit around.  We've been able to keep her busy with arts and craft but it will be nice once her homebound school starts.

We made the decision to have Kira do homebound schooling as long as she isn't able to bear any weight.  It just seemed to be a better option all around.  I have a meeting on Tuesday to re-write part of her IEP and then hopefully we'll get things rolling soon.  Her casts get changed on February 28th so she is no weight-bearing until then.

Tomorrow is her birthday......NINE!  It doesnt' seem possible.  She's excited for it and knows that I was going to decorate for it tonight.  She's requested some puppy cupcakes so we'll see what I can pull off tomorrow.  She has special visitor coming tomorrow so watch for pictures of that! :-)  

I feel bad that she's stuck at home, in a chair on her birthday but you better believe that we will do our best to make it a very special day for her!!

Thanks to everyone for all your support and prayers!

I'll be honest.....

I am exhausted tonight but I can't get to sleep!  I had great intentions of getting to be early tonight since we have to be at the hospital tomorrow morning at 6:15 AM!  Sleep is not coming easy.

I am still in AWE of how Kira has been handling all of this.  No tears.  No screaming and wailing.  AMAZING is the word that comes to mind.  I never, ever could have imagined that this is how telling her about this surgery would go.  Believe me, I am ready for tears tomorrow but then again, I've been ready for tears since we told her on Thursday.  

She's been asking more questions so it's clear that she's working on processing anything.  With every other surgery/medical procedure/test that she's been through, I've KNOWN that once we got to the hospital she could fall apart...even on the way.  I have no idea what to expect this time around.  I'm just going with prepare for the worst and maybe, just maybe, be surprised.

A lot of people have been asking how I am feeling about all of this.  Like any parent, I wish with all my heart that this wasn't something Kira had to go through.  I wish it was something that Jason and I didn't have to go through with her.

I'm not "scared" of the surgery.  Kira's been through a lot and has always done fine with the everything involved with a surgery....I have no reason to believe that this time won't be any different.

The recovery process...that's a whole other story.  And a whole range of emotions for me.  The biggest question that I keep asking myself and even saying out loud at times is this....

"How in the world are we going to do this??"

When we say that Kira will be in full leg casts for 6-7 weeks and during that time she cannot do ANY WEIGHT BEARING...that freaks me out.  She is going to be 100% dependent on us.......if she wants a book that is out of her reach, if she wants her water bottle, if she wants a different stuffed animal, if she needs to go to the bathroom.......EVERYTHING.  Not to mention, 2 other kids who need and will likely demand our attention a little more than normal through all this.

 Beyond that 12 weeks of casts........the unknown of "what" will it all be like when it's "done?"  I know that it's not going to be a case of "the casts are off and she's going to take off walking down the hall."  But what WILL it be?  How much extra therapy?  How long will it take for her to get her strength back?  And the biggest question...will we get the results that we are soooo hoping and praying for?

So I'll be honest, when people ask me how I am feeling about all of this...it's a really hard question to answer and the answer can change quickly depending on where my mind "is" at the moment.

I will update tomorrow via Facebook during the day as we get updates....and hope to do a post tomorrow night but obviously it will all depend on how Miss Kira is doing.

Cat's out of the bag......

And as I sit here getting ready to write this post, I'm still SHOCKED at how this conversation went.

Jason and I have known since October that Kira would be having surgery on January 8th.  Last fall Kira started having a lot of trouble with her ankle braces hurting her feet,  causing blisters, breaking the skin on her feet down, and pain in her legs.  We ended up taking her for a "footprint study" where they looked at her gait, etc.  From there they recommended two things....1) a different style of braces that would hopefully keep her feet from pronating while wearing her braces and 2) a referral to see an orthopedic surgeon for a full evaluation.  (How ironic that we had NEVER seen any orthopedic doctors and then within a few weeks of each other both Dylan and Kira did!)

After Dr. N (same dr who did Dylan femur surgery) watched her walk he said that he couldn't believe how much she pronated and expected that it would get worse the bigger she got.  He said that he strongly felt a double foot reconstructive surgery would be a good option for Kira......I can't remember all the medical terms but the surgery will involve fusing joints, chipping at some bone a few other things.  The surgery will take 5 1/2- 6 hours.  

Kira will spend 1-2 nights in the hospital and will come home wearing 2 full leg casts.  She won't be able to do any weight-bearing for the 1st 6-7 weeks.  Then she will be in half leg casts for another 6-7 weeks.  This will definitely be a challenge for all of us.  We did decide, with the help of her school team, that instead of trying to get Kira back and forth to school, expose her to germs, etc, she will do homebound school until she is out of the full leg casts.  Her teacher had the fabulous idea of using Skype to include Kira in some of what goes on in the classroom.  I expect that this will start the week of January 14th. (Can you say major Mommy guilt that this all is happening over her birthday?!?!)

 The outcome that we are hoping for is that Kira's pronating feet will be greatly improved.  She may still need braces but it's our hope that she won't need such big ones after this.  We hope that she won't have as much leg pain, etc too.  The "wildcard" for this surgery for Kira is that we don't have a diagnoses for her other "health stuff" and we have no idea how that will play into things....even so the dr was confident that he can greatly improve things.

This is going to be a challenge for all us without a doubt.  I am incredibly thankful that my parents will be here for the 1st 2 weeks to help out (cant wait to see the kids reaction when we pick them up at the airport since they don't know they are coming!!) and then we'll have Jason's parents come up sometime after that too.  I'm fortunate that a good friend is helping get Eva back and forth to preschool a lot of days which will be great.....trust me when I say Eva will NEVER want me to take her or pick her up again after this! :-)

I told Kira about it today while she was enjoying a snack and I fully expected her to have a breakdown (and wouldn't have blamed her if she did)....we talked a lot about it and she is nervous but the tears haven't started yet.  They will, no doubt.  I think it helped that I was able to tell her about what would happen when it was all over too.......she is excited that she should be able to get some "sparkly" shoes.  She asked about maybe being able to take martial arts or ballet too.  I shared with all the kids that we are planning a family vacation after school to out to celebrate being done with all the "foot stuff!"  We're going to head to the the Mall of America...Legoland, American Girl, an aquarium, and a hotel with a pool.  Not to mention possibly seeing friends and family if the timing works out!  We also started writing on her calendar when things would happen, etc.  I think that helped her a lot too.  I also avoided using the word "surgery" ...I simply said that she would go to sleep so that they could get her legs ready for the casts.  We talked about how the casts might be uncomfortable but that it would be okay.

I am trying really hard to look ahead to when this is over and the benefits that it will have but there are moments that is soooo hard.  I HATE the thought of her being in pain, uncomfortable, etc.  I know that she will struggle with being in the hospital and being away from what she knows.  Fortunately, we have a great children's hospital and it's right in town.  I can't imagine having to travel to do this.

Please send Kira some positive thoughts as she begins this "journey."
Have I mentioned how tempting it is to get a puppy right about now??? :-)

SNOW!!

Boy did we get snow!  So much that the kids missed the last TWO days of school before Winter Break!