David

Henry

Jack

Katie

Wednesday, March 26, 2014

Katie's Surgery - Day Two

I'm not going to lie to you.  Day two started out rough. . . All of her really awesome strong pain meds and anesthesia wore off around 2 a.m.  She had slept pretty much all day yesterday, so when she woke up at 2 she was up for the day.  I had gotten up at 3:15 to get ready for her surgery that day, as we had to be at the hospital at 5:30.  I did not love getting up at 2!  I put in a movie for her and sort of dozed on the couch until about 4.  Hospitals are not places for getting rest.  

You can see here how high up her cast comes.  Obviously that causes her not to be able to bend her torso at all, so no sitting up, turning, etc.


One bonus with the cast?  I can prop her ipad up and she's good to go!


She's still on IV fluids and a pulse ox monitor.  She's done great with that this time, and it usually drives her crazy.


We rolled her to her belly this morning, which she did not love.  It's all pretty scary to her right now.  It's important for us to move her so she doesn't get pressure sores, and also right now to keep the stuff in her lungs moving because she can't sit up to cough it out.


She did eat some breakfast. . . her beloved hot dog and a little bit of eggs.  


We petaled her cast with some water proof tape to help keep moisture from going to the bathroom out of the cast.  The last thing we want is a wet cast.  There was also a spot at the bottom of her cast, right near her bum, that was pretty rough and was down too low.  Someone from casting came up and trimmed it.  With a saw.  She was not excited about that, but he was so quick and so nice to her.  He did a great, great job.  He told her the noise would sound like a vacuum.  He clearly needs a new vacuum if that's what his sounds like!


I brought a bag of new treats for her.  She opened one after the cast trimming, and it was this little set of dress up bears.  I seriously almost cried when she dressed this first one.  She has a washcloth on her head and a thermometer coming out of her mouth.  She pointed to her and said, "Kk," and frowned.  It made me so sad!  She also had her catheter removed this morning, which made her very nervous.  She was really upset after the turning and the petaling and the catheter and the saw.  We gave her some valium and some pain meds and she took a little nap.

We also had visits from a woman who taught us all about her cast care, caring for Katie in the cast, things we should and shouldn't do, etc.  A woman from PT also came by to fit Katie for her harness for the car and to teach us how to use it.  Because her cast is reclined, she cannot ride in her carseat.  Or any carseat.  She will need to be lying down in the backseat of the car, wearing her harness, and strapped into two seatbelts.  This is how she will travel every.single.time. we have to go someplace.  We are going to have to rethink our school transportation for the boys, because right now Chris brings them and picks them up.  I'm not sure how feasible that will be with the cast, because it will literally probably take 30 minutes to get her in and out of the car each time she goes someplace.  We've got a big learning curve here.


This afternoon, a volunteer came by with some art supplies.  Katie picked some watercolor paints to use.  She loved it.  


She painted lots of pictures.  The girl had to get more paper three times.


She took it very seriously!  She also wanted Chris and me to both paint with her, and she was very selective about the colors we would use.  She may or may not be a little bossy.


We hung her paintings on her door and the walls of her room.  When people come in, she makes sure she shows everyone her artwork.


She was very, very happy when Chris got her collection of movies from the car.  A little Spongebob goes a long way with this girl!


The best part of her day was seeing Gigi!  She and Gigi ate dinner together, and Katie ate all of her hot dog and all of her macaroni and cheese.  She also drank a full cup of apple juice, which was the most she'd had to drink all day.  Gigi brought her a bag of treats, and we did some pop beads and watched a movie together.


She also got a visit from Mabel, a therapy dog.  Mabel was a Great Dane, and she was so big and sweet.  She was really excited that Katie smelled like a hot dog!  Mabel was like a pony - she was enormous!  Her owner was very sweet and friendly, and Katie really liked seeing her.  

If all stays the same, Katie should go home tomorrow.  I think they would have let us go today, but I told them I didn't feel like we were ready.  We're both going to try to get some good rest tonight and look forward to sleeping in our own beds!

Thank you so much to everyone who has been checking on her, praying for her, sending her sweet messages, and sending me texts to see how she's doing.  We are very lucky to have so many people who love Katie and care so much about her.

Katie's Birthday Present

Katie will turn seven in June.  When she first came home, she had no idea how to play.  Like, as in, would look at a toy if you gave it to her and just smile.  She had no idea what to do with them.  She didn't know how to pretend to do anything.  Now she loves to cook things up in her kitchen, have a tea party, push some dolls around in a stroller, and do lots of other pretend play.  What does a girl who has a newfound love for playing need?  A playhouse!


I know, I know.  It looks like a shed.  Um, it is.  Use your imagination.


I have big plans for this little beauty!  We're going to make the door into a dutch door, add some windows to the house, some window boxes with flowers, and add a little porch.



It's 8x10, and right now it's divided into two rooms.



I'm not sure if we'll leave it as two rooms or just open it up and make it one big room.

I've been pinning like a madwoman on Pinterest.  Some of my favorite ideas are these:


I love this little porch with no roof.


We will paint the door this color to match our house.  And it's a dutch door!


I want to hang some solar lights on either side of the front door.


I love these little kitchens.  We have a Pottery Barn Kids kitchen that our friends gave us, and we'll move that out.  I want to hang some open shelves above it.


I've already started scouring Goodwill and can't wait for some yard sales to start up so I can find lots of goodies for it.  


I'm going to make one of these drying racks from a wooden tray table.  I think it's the cutest thing!


I plan to make a few of these big pillows to sit on and hang out.


I love these painted floors!  I think I'll paint the entire inside of the house white, then stripe the floor with some of the paint we've got from when we painted her room.  It's seaglass, and I love the color.  I would also love to build a little "built in" bookcase between two of the studs.  Thank goodness Chris is handy!

I promise you that I'm more excited about this project than my husband, and I will probably like the finished project more than Katie!  I think that she and Jack will have a lot of fun with it though, and probably the big boys too!

Tuesday, March 25, 2014

Katie's Surgery Day




Our sweet Lady K had her hip surgery today.  We originally planned for a combined femoral and pelvic osteotomy.  We were also supposed to have her eye doctor come in and clean out her tear ducts and possibly stent them.  Why?  Because this is what we had going on for about two weeks. . . 


It started as a sinus infection.


Then moved on to conjunctivitis.  And a sinus infection.


Then that little face had nowhere for all of her infection to go, and her tear ducts don't drain properly.  Because of that, she had bacteria back up in her tear ducts.  


Five days after her first round of antibiotics, we were back to looking like a prize fighter.


We knocked that infection out again, and had big plans to fix the tear ducts today.

Womp, womp, womp.  No go on the eyes.  Our hip surgeon didn't feel comfortable with the tear ducts being flushed, as it could introduce bacteria into the bloodstream.  That would be no bueno, since the hip doctor was also adding foreign material, in the form of a plate and some huge screws, into her body.  And, you know, cutting her bone.  There's obviously a risk of infection with those little details, so we nixed the eye procedure for today.  And we were totally OK with that.  I'd rather deal with some drippy eyes than a bone infection any day of the week.


She went back to surgery like a champ, happily playing on one of the doctor's phones.  She waved goodbye and gave us kisses.  She did so well, it made it so much easier to hand her over.  Her ortho portion of the surgery lasted from 7:20 this morning until about 1:30 this afternoon.  I thought it would feel like it lasted forever, but it really wasn't a bad wait.  The nurse was great about updating us just about every hour.

When the doctor got into the operating room and Katie was sedated, he did a range of motion test and took lots of pictures and videos.  He'll compare that to the pictures and videos he'll take when she goes back to the OR for her cast removal.  On her left side, she had about 180 degrees of range of motion.  A typical person has 90 degress - 45 to the left and 45 to the right.  Her doctor was able to turn her left leg so that her foot was pointing at her head and her knee was pointing at where her foot should be, without dislocating her leg.  While that sounds impressive, it's not great.  It can cause big problems down the road, as she gets bigger and weighs more.  The bone makeup and ligament laxity on the right side is the same, so he's not really sure why she doesn't dislocate on that side, but he thinks it just has to do with the positions she likes to sit in, sleep in, etc.  He was able to adjust the position of the head of her femur and to place it in a better spot in the hip capsule so he's confident that it will be much more difficult to dislocate.  He obviously cannot promise us that it won't happen or that she won't have to have the surgery again.  He did not adjust the pelvis at all today.  He said that, if we have to do a pelvic osteotomy, we can wait until she's about 10 or 11 and has grown some more.  Because she's so little, to do the pelvic portion now he would have to cut a lot more than when she's bigger and her growth plate is open more.  I hate the thought of having to do this again, but we trust our doctor and are comfortable with that if he thinks that's what's best for her.


She's in a spica cast from her mid chest (literally right at her nipples) to her ankle on the left leg.  It's a reclined cast, meaning she cannot sit up at all.  Her leg is in a bent position and out to the side at about a 25 degree angle.  This will certainly make things like riding in the car, going to the bathroom. . . um, ok really everything, interesting.  Her doctor is hopeful that we can stretch this cast out for eight weeks, then go into the OR to check healing and move directly into a brace.  Originally he thought we'd do 12 weeks in the cast with a change at 6 weeks, so we're cautiously optimistic that 8 weeks will be enough.  That puppy is going to smell in 8 weeks.  It's a gortex lined cast, and it's got a big opening for potty business.  We will very likely have to do a diaper stuffed inside the cast and something over it to hold it all in, because she obviously can't get herself to the potty independently, and the last thing we want is a bunch of urine in the cast.  

After her orthopedic doctor finished, her ENT doctor checked out her ears and did an endoscopy to check for obstructions that could still be causing sleep apnea.  She's had two sleep studies.  The first was in August of 2012, and it was horrendous.  She had her tonsils and adenoids out in November 2012 and we hoped that would help.  It didn't really.  She had another sleep study about three months later, and the results were marginally improved, but still not great.  Today her ENT discovered that she has inflammation of her nasal passage, which causes swelling and narrows the area for air to flow through.  She's also got a "floppy palate" and a very wide tongue base.  As she sleeps and relaxes, her tongue slips back in her throat, obstructing her airway more.  At this point, he feels like a surgical repair is necessary.  She will have another sleep study so we can collect that data, but he's pretty certain that this is the best route.  It's not pretty.  He'd like to do a turbinate reduction, a uvulopalatoplasty, and a partial glossectomy to remove part of that tongue tissue.  Those can all be done at the same time, and he said recovery is about the same as with tonsillectomy.  We will revisit that surgery in the summer.  Until then, she will be on two daily nasal prescriptions to help with the inflammation and hopefully open that airway up a little bit.  

So for now, she's resting comfortably.  She's off of all oxygen and breathing room air.  She's been knocking on the cast a little when she's awake, and she's been unhappy about it, but not crazy.  I think tomorrow, as she's awake and aware more, has her catheter removed, and things like that will be harder.  This is, again, another time when I'm so, so thankful she's got a mama and a daddy to love her and help her through this.  






Saturday, January 4, 2014

Surviving the Spica: What's Cooking?

Remember last year when we found out Katie needed surgery to correct her hip dysplasia?  Then her surgery got pushed up three and a half months?  Then her surgery got canceled?  Oh well it's back on.  We're currently scheduled for late March, but hopefully will get bumped up again on the cancellation list.  Sooo....That means I'm cooking.


I went today and got lots of foil, foil pans, freezer bags, and muffin liners.


I'm also pretty sure that this fridge in our laundry room has never been so full.  


Seriously?  I don't think I could cram one more can in there.


I have lots and lots of goodies on my list to make.  I'll share all of the recipes with you after I get cooking tomorrow.


Also on my surgery prep to-do list?  Making Katie some cute hospital gowns to wear, a few new pillowcases, and some of each of those goodies to donate to other children in the hospital.  She might as well look cute while she's laying there!

Thursday, January 2, 2014

The End of Vacation

We leave tomorrow to head home from our vacation.  Boo!  We've had such a fabulous time.  I really needed to spend this time with my family.  I feel like I haven't seen them for months.  I was so glad to do things like laundry and pick up after them.  I know that sounds ridiculous, but I feel like I haven't been able to do those things because I've been so crazy busy.

Last night we went swimming.  At night!  The kids were so excited.


This little pumpkin was most excited.  She's a little fish.


They all loved it.  The pool is huge and warm, and they were so good and fun.


Today we went to Hollywood Studios.  (Universal?  I never know what to call that place.)  David and Jack rode the Tower of Terror, and Henry wasn't interested.  And, um, Katie would have died with nervousness.  Henry, Katie and I watched the Muppet 3-d movie, got some lunch, and just hung out.  David HATED the Tower of Terror.  Jack, the dare devil who knows no fear, loved it.  Katie would seriously maybe have died.  She threw up on the Haunted Mansion and the Epcot Spaceship Earth.  Neither of them were fast or scary.  I think she gets nervous when it's an enclosed, dark ride.  And, winner, winner chicken dinner, I was riding with her both times.


I rode Star Tours with the boys.  I liked that ride!  And they loved it.  Jack screamed, "This is the time of my life!" like 10 times during the ride.  And told everyone in line that he's almost six, he's already five, and his birthday, "is in like 9 days or something."  That child has never met a stranger.



We came back from Hollywood Studios today and were locked out of our room.  Oops.  That may or may not have been my fault.  The kids were so good just sitting on the porch and playing while Chris went to get a new key.  Katie played with a piece of trash from Jack's toy.  That's some entertainment...


Tonight Jack and I went on a date to Ikea.  We got a few things and are going to go back in the morning after we check out of our hotel to get an island for our kitchen.  I've been wanting it for quite a while.  I got a nice Christmas gift from my boss (ie: money), and haven't used any of it, so I'm going to get it.  So hey kids!  Push over so my flat packed kitchen island can fit in the car for our 10 hour ride home.  Don't you wish you were coming with us?!

We've had a great time.  I'm excited to get home and start cooking.  It's time to get ready for Katie's surgery!  My mission for the weekend is to fill our freezer with foods so that if we get a cancellation appointment for her surgery, we're ready to go.  I'm spending our time in the car finalizing my list of foods and my grocery/supply lists.  Or at least that's my plan. . . I promise a nap will take place too.  ;)

Wednesday, January 1, 2014

Happy 2014!

It's a Christmas miracle!  A blog entry!  Does this thing still work?!

I can't believe it's been six months since I've blogged.  That's the longest I've gone in five years of blogging.  

We've had a busy, busy six months.  I'm sure you have too!


Katie has spent some more time at doctor's appointments.  She's failed two more hearing tests on the right side, but nobody seems too concerned with that.  Um, other than me.  Her tubes are starting to work their way out, and I completely expect her to get another set.  Before that, I'm going to insist on another hearing test, because I think that the hearing on the right side may be effecting her speech development.  With all of that said, I'm not overly concerned with it.  We'll get it worked out one way or another.


We also FINALLY got an x-ray of her dislocated hip!  HALLELUJAH!  I never thought I'd be so happy and excited to see a bone out of the socket.  She is scheduled {again} for a femoral and pelvic osteotomy on the left side.  She's currently scheduled for late March, though we're hoping for a cancellation spot to open up before then.  Her doctor estimates 4-8 hours for surgery and then 3-4 days in the hospital and 6-ish weeks in a spica cast.  Good times!  We're trying to have no expectations so we're not disappointed about how hard it will be.  I hate for her to have to go through it, but I am looking forward to some resolution. . . hopefully.  



In August we celebrated Chris' birthday.  


We also had first days of school.  Kindergarten for Jack, fourth grade for David, third grade for Henry.


And Kindergarten for this sweet thing.  She started at a new school with about 60% of her day in a general education class and 40% of her day in a special education class.  There have been a lot of bumps in this road, and we're slowly working them out.  Inclusion into a general education class has not been an easy process for us, but we're not giving up.  That's a whole other blog post for a different day.



We took a trip to Washington D.C., which everyone loved.  It was a surprise for the kids, and we had an awesome time.


We loved D.C., and we'll definitely go back.  I felt like we only got to see and do a tiny fraction of what's there.



We also got to see these sweeties and their mama, which made my heart very happy.



We had a fun Halloween.  Gone are the days of me picking cute costumes for them to wear.  Katie loved going to everyone's house and saying "Trick treat!"  More than that, she liked handing out the candy at our own house.  She was a great helper.


We had a fabulous Thanksgiving at Gigi and Grampy's house.  My grandparents came to visit, which was wonderful.  My only favorite cousin and his girlfriend came also, which was a surprise for everyone.  It was a great weekend, and I wish they all never had to leave.

Four generations of my mom's side of the family, including my grandparents with all of their grandchildren and great-grandchildren.  I love this!


We surprised the kids with a trip to Disney for Christmas.  They were shocked!


We've been having a great time.  Disney at Christmas is some crowded business.  That doesn't always translate well with a child with sensory issues, but we're having a lot of fun.


I think they all loved the beach more than Disney. . . something to think about for the next time, for sure.


Most of my last six months has been spent sewing.  In July, I launched my little sewing business, The Crazy Kukla Boutique.  That little venture was far, far busier than I ever could have imagined.  It turned into a second full-time job.  I would come home from work and start working on sewing until 11:00 or midnight, every night.  I made almost 200 Little Mama Diaper Bag sets between July 1st and December 23rd.  I had 96 sales through my etsy shop during that time period, and easily twice that through my Facebook page.  Chris would spend large portions of his day cutting things out for me so they were ready for me to sew at night.  I could never have made it through the Christmas season without him and his help.  I bought a monogramming machine, which I am in love with, and that made me even busier.  I absolutely love my sewing business, but I didn't want a second full-time job, nor did I ever, ever anticipate that it would turn into one.  I was completely overwhelmed and stressed during Christmas trying to get the orders done.  And for what?  Sure, I made some extra money.  I made a lot of cute things.  I had a lot of sales.  I don't think, in the end, it's worth it.  I am going to cut way, way back with the sewing in 2014.  I'm still figuring out what that will mean for The Crazy Kukla Boutique, but I'll figure it out.

I hope you had a wonderful 2013.  I'm looking forward to what 2014 will bring.  

Happy New Year!