Tuesday, 26 March 2013

Surviving the Spica: The Prep Phase

As soon as we found out Katie would need hip surgery and would be in a spica cast, I began doing research.

I had to fast track that research, question forming, insurance calling, and preparing when we found out her surgery date had been moved up three and a half months.

I have found several great blogs written by parents who have had children in spica casts either because of hip dysplasia surgery or a broken femur.  However, the vast majority of those are written by parents who have babies or children who are still in diapers.  Katie is neither, and there is not a whole lot that I'm finding about children who are (and have been) walking already or are already potty trained.  Katie is almost six years old.  I cannot plop her in a wagon with a few baby toys and keep her entertained.  She's also used to be very mobile and active, so to lose all of that mobility will be a challenge.  I'm stocking up on lots of coloring, painting, play-doh, movies, and books.

The vast majority of our Survival of the Spica will be trial and error.  How do you put underpants on a child with one casted leg that doesn't move?  How do you put a nighttime pull-up on her?  How does she sit at the table to eat?  Finish the school year?  Lots of practical questions, with not a lot of real answers yet or things that I can do to plan ahead.

So, I did what I do best in times of stress or worry . . . I cooked.  And I stocked my freezer.

Pioneer Woman cinnamon rolls, one small batch to eat and one huge batch in the freezer.  These taste like donuts, and David said they're the best thing he ever ate.  I skipped the frosting.  Let's be honest - these children don't need frosting on a cinnamon roll.

I made two chickens (one in the crockpot and one that I roasted) and I shredded them both and froze the meat for tacos, salads, tortillas, baked potato toppers, and things like that.

We took some breaks to draw pictures.  David drew the two little guys.  Katie saw what he did and drew the big one, all on her own.

We made zucchini muffins (one batch with chocolate chips, one without).  

I also made pepperoni calzones, cheese calzones, six dozen meatballs, raisin bran muffins, turkey burgers we can just pull out and grill, protein bites, and mini quiches.  I've got a few things on my list still to make, and I think we'll be good!  I'm trying to do as much ahead of time as I can to make our transition easier both while we're at the hospital and when we come home. 

Between now and April 16th when she has her surgery we have a lot going on.  I will obviously be working between now and then, which means I have to pack everything that needs to be done into very few hours when I'm not at work.  Chris and I meet today with her teacher to discuss the rest of this year and how she's going to be able to finish the year out, her transition to next year in Kindergarten, her placement for next year, and her extended year services.  Henry and Jack will each have baseball practice several times a week (but of course not at the same time or in the same place!) and David starts summer swimming.  David's birthday is Thursday, and we're doing a fun little getaway for his birthday.  Easter is Sunday, and I've done NOTHING to prepare for that!  My mother-in-law's birthday is Monday.  Spring break is next week.  Baseball opening day for Henry and Jack is April 8th, which is also the day Katie has her sedated CT scan to get ready for her surgery.  All of the kids have a dentist appointment the next day, and I think Katie will need to have a tooth pulled (because the adult tooth has already grown in behind the baby tooth).  Henry's birthday is the 19th, but we will likely be in the hospital.  I don't want his party to have to be pushed back after his birthday or for him to feel any less special, so we're doing his party the 14th.  Then Katie's surgery is here!  It will FLY by, so I better make the most of my time!

Happy Tuesday!

Monday, 25 March 2013

David & Henry's Theatrical Debut

The boys' school has a great drama department.  For such a small elementary school, they do really great musical performances once a year.  Last year David was an Oompa Loompa in Willy Wonka, Jr. and he did a fantastic job.  This year, both boys tried out and got musical parts as "street kids" and "businessmen".  They did an AWESOME job!!  The play was so well done, and everyone did an amazing job.  To see such little kids remember all of the choreography, lines, songs, marks, and everything that goes along with putting on a play is fantastic.  I am so proud of them.

And when did these two boys get so unbelievably grown up and handsome?

I seriously feel like it happened overnight.

And Jack, our resident thespian. . . He will either make the drama department very, very proud someday or will irritate them beyond belief.  

He's memorized almost every line in Annie (and that is not an exaggeration - he's obsessed and wants to be Annie for Halloween) and has been acting it out for a week.  I will leave you with his favorite scene (which was a bit less . . . salacious . . . in the performance at school!).  He's been dressing as Rooster and making me act this scene out, complete with dancing and singing and rummaging through boxes looking for Annie's locket, since Thursday.

Saturday, 23 March 2013

Ten Months Home & World Down Syndrome Awareness Day

Can you believe this little lady has been home for ten months now??  We were so excited to celebrate 3-21, World Down Syndrome Awareness Day with our own little bundle of extra chromosomes.  We both were sporting our yellow and blue!  

Katie has changed immeasurably in ten months.  She is hardly even the same child.  She is outgoing, gregarious, affectionate, smart, generous, polite, silly, and fun.  She has friends at school, loves to go to the park, likes to read and sing, and is the self-proclaimed boss of her class.  (Some may say she gets that from her mama . . . )

Are there challenges?  Of course.  Nobody with children - typical children or special needs children - can say that parenting them is without challenge.  I can say, however, with one hundred percent certainty, that our lives are better because Katie is part of our family.  

Fast Forward

Remember that I told you that Katie was having hip surgery and that it's scheduled for July?

Fast forward.

It's now scheduled for April 16th.

I spoke with the nurse at Katie's doctor's office at about 8:30 Friday morning and asked, among other things, if we could be put on a cancellation list and scheduled sooner if there was an opening.

There must have been a very short list, because at about 11:30 the same morning the scheduler called me and said we can do it April 16th.

Yes, please.

That will get us out of the cast at the start of the summer and give us all summer to get her stronger and ready for school.  No starting school late or in a cast.  Maybe not even starting with the wheelchair still.  It gives me much, much less time to get ready, but we'll figure it out!  I'm so glad we can get the process started sooner and get little missy on her road to recovery!

Tuesday, 19 March 2013

Tuesday Twelve

1.  Surgery.  Since finding out last week that Katie will need surgery to address her Developmental Displaysia of the Hip (DDH), I have become a woman obsessed.  This surgery will be 3-5 days in the hospital, and 4-6 weeks at least in a hip spica cast.

2.  Spica what?  Don't know what a hip spica cast is?  I didn't either.  Thank you google.

Original photo here
3.  Casting.  We anticipate her cast will go around her back and belly and down her left leg.  The left leg/hip must be completely immobile while casted to ensure it heals properly and we don't have to repeat surgery.

4.  Sweating like a little pig.  Did I mention this cast will be on in July?  In Tennessee?  Her summer wardrobe should be very, very small.  Like, naked.

5.  Car seats.  I haven't even let myself go to the recovery process yet with my thinking.  I'm stuck on the immediate things, like how will we get her home from the hospital?  Katie doesn't weigh enough to be in a booster seat yet.  And, quite honestly, even if she did weigh enough it wouldn't be safe enough.  She still needs a five point harness.  I couldn't trust that she wouldn't unbuckle while we're driving, because I just don't think she understands that yet.  

The Britax Hippo is one option for the car.  It's crazy expensive, but I believe it should be covered by our health insurance.  And we're obviously going to have to go places with her while she's in the cast.  This sounds less than appealing to me.

Another option is a harness, but that would require her to lay down in the car and with four car seats we don't really have that vehicular real estate available.  I'm also going to check with the hospital to see if they have a loaner program so we don't have to buy a seat.

6.  Entertainment.  Another huge concern I have is how we will keep her occupied for six weeks in a cast.  I see lots of television and iPad in her summer future, which I don't love.  Any other great ideas for a stationary child with limited range of motion who doesn't like to sit still for 5 minutes?!

7.  Eating.  How about eating?  How exactly does that happen in this cast?!  I'm not sure if she'll be able to sit up, so right now we're planning to use her stroller a lot (which reclines) and just push her up to the table to eat.

8.  Sleeping?  She sleeps upstairs in a double bed right now.  We plan to have her sleep downstairs in our room while she's got the cast.  At first I expect she'll need meds, etc. through the night.  Once she gets more used to the cast and more comfortable with it (does that happen?!) I don't want her to try to get out of bed with the cast on.

9.  Bean bag chairs.  A bean bag seems to be a must have for a spica cast.  The children may all need one, because I see some bean bag envy coming right up if only Lady K gets one.  I'm thinking about making them - that cannot be a difficult or expensive thing to make, no?

10.  Cooking.  I am going to make a plan this weekend for meals that can be prepared ahead and frozen so I have our freezer stocked when we go to the hospital and for the first days/weeks when we come home.  

11.  Work.  I will have to take time off to stay in the hospital with her while Chris is home with the boys, and I will really need to go back to work the week after the surgery.  Obviously if we have issues, etc. with her surgery I will have to figure something out, work partially from home, or something similar, but right now my plan will be to return to work the week after surgery.  She's scheduled for a Tuesday procedure, so I will plan to go back to work the following Monday.  These are the times I wish that I was still a stay at home mom.  I love, love, love my job and the people I work with, but things like this are difficult on my mama heart.  And guilt in about 100 different directions.

12.  These sweet loves.  

Chris will have the bulk of the work because he will be home with three boys and one immobile girl for the majority of the summer.  I am going to start looking now for some camps for the boys, particularly for after the cast is on.  There goes the "raise" we were getting by not paying for Jack's private pre-school after May. . . Chris is an amazing daddy and husband to our family and he take phenomenal care of the kids and the house while I'm at work.  Seriously, how many dads could do that or would be willing to?  But a hot summer with a spica cast girl and three rowdy boys will be tough.  

David and Henry will be worried about Katie but I think will be big helpers.  But I don't want them to think they have to be.  Nor do I want them to spend the summer inside on the computer or playing video games.  Must. Find. Camps.

My sweet Jack Jack. . . he gets loud and even more wild (if you can imagine) when he's worried about something or feels like he's being left out.  He's still struggling a bit in his own way with the changes to our family since Katie came home.  We will need to be extra sure to make some special one on one time for him during the summer I think so he knows he's still special.  Even if he is a little loud time bomb waiting to happen.

Happy Tuesday!

Friday, 15 March 2013

Hippy Chic

Last Thursday, I was at a meeting for David's summer swim team.  As I was pulling out of the parking lot, my phone rang.  It was Chris, at home, and I could instantly tell that something was wrong.  He sounded a little big panicked, and I could hear Katie screaming in the background.  He explained that she had fallen in the kitchen while she was playing, and that her leg came out of the socket, at the hip.  This also happened in September.  I told him to meet me at the ER.

I got there about 10 minutes before Chris did and went inside to get her all checked in, with the hope that doing so would speed up the process for us when Katie got there.  When she dislocates her leg, it is excruciatingly painful.  We live in a very, very small town.  The hospital closest to us isn't going to win any awards for the best hospital in the state, but it was the only option at that point.  It didn't get us in any faster.  Katie was in such pain that, while we were waiting in the waiting room, she had diarrhea all over herself and me.  She wouldn't move her leg, she wouldn't let me put her down, and she couldn't get comfortable.  She was wailing and writhing in pain.  It took thirty minutes for them to get us to an exam room.

We were in the exam room for about an hour before we got to go back to X-ray.  They didn't give any pain meds during that time; they were more concerned with interviewing me to make sure I didn't beat her and cause the injury.  I appreciate the process, I really do, but they could have given her some ibuprofen while they determined whether or not I'm an abusive parent.

Finally she was so upset and exhausted she fell asleep.  We still hadn't gotten back to have an X-ray yet and I was seriously kicking myself for not just taking her directly to Nashville.  I honestly don't know how we would have been able to do that though, because she was in such incredible pain.

We finally got back to X-ray, and the tech had to position her legs so that her feet were together and, when doing so, accidentally reset the leg.  Instantly Katie was fine.  She said, "Boo boo gone!  Thank you! Bye!  Mama, hot dog?"  We got two X-rays and sat in the ER exam room for two hours waiting to be discharged.

Two days later, Katie tried out for baseball.  Not a special needs baseball team; the team Jack is on.  There were about one hundred people in that gym.  The kids had to field three balls, throw them to a coach, then run as fast as they could from half court to the end and back.  Katie missed every single ball, chased them all over the gym, and was probably the slowest runner there.  And everyone in that gym clapped and cheered for her like she won the World Series.  I was a soggy, crying mess.  She was so proud of herself, cheering for herself and clapping right along with everyone.  It was a wonderful morning.

That night we got a call from her baseball coach to tell us practice started Tuesday, and she and Jack were ready to go!  She went to her first practice and hung with everyone else for about an hour of the hour and a half practice.  She was the only girl and she did a great job.  She really liked it, and the coaches were fantastic, asking lots of great questions about her and not treating her any differently.

Wednesday Katie and I went to Vanderbilt to follow up with our ENT about her second sleep study and two failed hearing tests.  The sleep study results were wonderful.  She still has a slightly increased rate of apnea, but he was very satisfied with the results.  We will retest annually now until or unless we start to have higher rates of apnea.  He did say he wants to do bilateral tubes and a sedated brainstem response hearing test .  If she fails that test, she will likely need a hearing aid.  I'm really not concerned with that.  If she needs one, she needs one.  I don't foresee that being a big deal at all.

Yesterday we were back to Vanderbilt to meet with an orthopedic doctor about her hip.  We had some time before our appointment, so I took my girl on a Ben & Jerry's date.  She clearly enjoyed herself. . . 

We talked to the doctor and he first had Katie lay down on her belly on the exam table.  He physically manipulated Katie's legs with her in that position so he could see her range of motion on each side.  While he did so, his resident took photos of her legs on the doctor's iPhone.  I was standing by her head to help keep her still, so I couldn't see the legs.  I did hear him say when he manipulated the left leg, "Oh, definitely."  Um, not really what I wanted to hear.  He had a sort of cautious smile on his face when we all sat down.  He showed me the photographs, and there was an immediate difference that even I could see.  Her right leg range of motion looked totally normal as he pushed it up and out.  It didn't go very far with her on her belly.  The left knee, however, was almost at a 90 degree angle and back significantly further toward her head in a very, very unnatural looking position.  That was an obvious indicator to him that her femur does not sit properly inside her hip socket.  She was diagnosed with Developmental Dysplasia of the Hip.  

And there went her baseball dreams.

We had a very lengthy discussion about what can be done to repair this, and surgery is the only option. Prior to twelve months old, there are other bracing options, but not at this point and not with the significance of her situation.  

There are two scenarios we will be looking at:  either a femoral osteotomy or a combined osteotomy.  Essentially, the femoral osteotomy is the best case scenario and only the femur and surrounding muscles, tendons, and ligaments will be repaired.  That is estimated at a 2-3 hour procedure.  The combined osteotomy would involve repairing and reshaping also the hip socket and possibly part of the pelvis as well.  That would be a 4-6 hour procedure.  We won't know until she has a CT scan, but truly won't know until the day of the surgery and he's able to see once he starts what we're dealing with.  Un-repaired, continued dislocation of her leg can cause obvious issues like muscle tears, fracture, arthritis, further damage to the bones, injury to her knee from having to constantly reposition because of her hip issue, and a whole list of other lovely things.  Not repairing is not an option.

Recovery is long.  We will be three to five days in the hospital, then four to six weeks in a cast to keep that leg completely immobile.  The cast will go around her back and belly and down the thigh so her newly reset and repaired femur stays in place in the hip socket and can heal in the right place.  Then she will have months of physical therapy to learn how to use the muscles of her hip and leg when they are in the right place and are not so stretched out.  We are scheduled for surgery in early July.  So yes, four to six weeks in a huge cast in the summer when it's about 100 degrees here.  I would rather do that, however, than when she's in school.  She will be in a new school in the fall, in a full inclusion kindergarten class and I don't want to add a cast to all of that newness.  Nor do I want to wait any longer than we have to for the surgery and July was his first available.

It was definitely not what I wanted to hear.  It was also not a surprise.  Since we got the referral to ortho last week, I've been researching hip dysplasia like crazy, and I knew the only option at this point was surgical.  I obviously couldn't diagnose her myself, but I was prepared mentally and emotionally for it and for surgery as an option.  Is it ideal?  Of course not.  It actually pisses me off.  This is something that could have been repaired in Russia with a brace.  A brace.  Not an invasive surgical procedure with several months of recovery.  The medical information we received when we brought her home had a bunch of inaccurate diagnoses on it like a hole in her heart and an umbilical hernia, but it said nothing about hip dysplasia.  Pediatricians in this country routinely screen infants for "clicking" hips, which is the first indication of dysplasia.  Of course she didn't have that benefit; and if she did, they just ignored it.  I've allowed myself one week to be mad about this.  After that I'm done.  Being mad isn't going to change the situation or make anyone feel better.  But fixing her tiny little hip will!

Tuesday, 5 March 2013

Tuesday Twelve

1.  Jack now has a prescription for glasses, as does Christopher, officially making us a home in which every single person must wear glasses.  I laughed when the eye doctor said Jack needed them.  Uh, those would last about 10 minutes with him.  His prescription is very slight, and we will be waiting until the fall when he starts school to get any sort of glasses for him.  

2.  I told Jack the night that I took this picture that when he loses all of his baby and doesn't have baby hands anymore I will be sad.  His response?  "Will you need medicine?"

3.  These two little best buds watch TV like this all the time.  I think now about how nervous I was to have two babies so close together, and I am so thankful that I had two babies so close together.  

4.  I think yesterday may have been National "Look Just Like Your Mother Day".  Example one, David and me.

Example two, my mother.  Slight resemblance there....

5.  This little bug is turning into quite a bookworm.  My favorite part of the night is putting her to bed and listening to her "read".

5.  Yesterday was "Mad Scientist Day" at school.  For real?  
I've never seen two cuter little scientists in my life.

6.  We played outside on Sunday and went for a walk.  Katie fell down, which seemed like a non-issue at the time.  Uh, notsomuch.  
It led to this:

Crying (read: sobbing) Monday morning from the instant she woke up, swollen knee, and a trip to the doctor.  Of course, she can't tell us what is wrong beyond crying, pointing, and saying, "boo boo!"  The verdict?  Sprained knee.  She was feeling much better yesterday afternoon after some rest and several doses of Ibuprofen.  She didn't get tiny little crutches.  Although I sort of secretly wish she had, because she would be so freaking cute.

7.  How much longer until these jokers are taller than me?  How did this being all grown up business happen?

8.  This little helper was a big plant watering help.  
And then a big floor mopping help, given the amount of water that ended up on the floor.

9.  I made the yummiest chicken tortilla soup.  It's SO good.  Good thing, since I made a double batch.  I froze ten 8 ounce servings in individual bags so I can just grab one and go to work.  

10.  We also made baked plantain chips.  SO GOOD!!

11.  Before the playing outside?  There was time out.  :(  
Big girl has a hard time sitting at the table instead of on the table.

12.  This kid and I went to a bowling birthday party on Saturday.  He is so much fun to hang out with.  I am so lucky to be his mama.

Happy Tuesday!

Monday, 4 March 2013

Happy Metcha Day!

Last year, on February 28th, we met Katie for the first time.  That day we first went to the Ministry of Education to receive Katie's file information and to be granted permission to go to the orphanage to meet her.  I was way more nervous about that appointment than I needed to be!  The most nerve wracking thing about it was riding in an elevator with a footprint literally just slightly larger than the square footage of my laptop.  For real.  I'm nearly certain it would qualify as the world's tiniest elevator.  The best thing about that appointment (other than getting permission to meet Katie, duh) was eating at the bakery next door.  They had the most amazing pastries ever.  I wish I could go back to Russia merely to go to that bakery...

After receiving permission to go to the orphanage, we piled into our driver's van with our translator and our facilitator and headed out to the institution.  We had no address - just directions - and nobody in the car had ever been there before.  I told you, this was a trip completely based on trusting strangers!  Three hours later, we pulled up to the gates of the institution.  I was so excited I felt like I could throw up.  Once it was determined which building she was in, we parked the car and walked through the snow to her pink building.  I was immediately impressed with how clean everything was.  I'm not sure what I was expecting, but it wasn't candy colored buildings with play equipment everywhere and cartoon animals painted on the walls of the huge fence surrounding the compound.

We were the first people to ever go to the institution to inquire about adopting a child.  Any child.  The institution had been open for twenty-five years.  Please think about that. . . twenty-five years of existence, and Katie was the first child ever adopted from the walls of that institution.  There were about 250 children there when we were there.  How many children have been through there, never to know what it's like to be in a family?  And what happens to them when they turn 18 and "age out"?  That's twenty-five years of aging out.  That's thousands of children, who never had a family.  And it was a very nice facility, with very nice staff.  But that's not enough.  They are not a family, and it's not a home.  The staff didn't even know where to put us, because nobody had ever come to visit a child before, wanting to adopt.  (I should add that some of the children there are in that particular institution because their parents are dead, in jail, or otherwise cannot take care of them; not every child who is there is eligible for adoption.  Most are though.)  

We were led to a tiny room (about the size of a large walk-in closet in the U.S.) just off of the lobby of Katie's building for our visit.  Chris and I sat, impatiently, whispering to each other in that tiny room while our translator, facilitator, and driver were in the hallway talking to the doctor and assistant director of the facility.  About ten minutes later, we heard what I know now as Katie's yell in the hallway.  And in pranced a tiny four year old with a bow on her head the size of a dinner plate and big blue eyes that matched Jacks' perfectly.

This was almost immediately after she came in the door.
I grabbed her and told Chris to take a picture.

She was, understandably, a little confused and hesitant at first.  She really liked the photo album we brought for her, and she was much more comfortable on the "psychologist's" lap than anywhere else in the room.  At first.  

The staff doctor came in with her file and gave us her medical information, which I half listened to.  I felt bad about that until she came home and I realized that it was less than half accurate, so I'm glad I spent that time watching Katie and soaking her in.

After the doctor left, I pulled out our bag of toys and I won her over with what came to affectionately be known as "the electro-shocker".  

Once we broke the ice, there was no turning back.  She was my sweet thing and her daddy's girl from then on.

I wonder why my kids are all so crazy. . . Maybe it has something to do with their mama?
Metcha day pictures before school?
Ain't nobody got time for that mama!

For Metcha Day Katie wore her prettiest dress (which was a lovely gift from Sarah and Joyce) and brought some treats to school to share with her friends.

I put ginger snaps like the ones we had at her orphanage and another cookie similar to one we had in Russia in these bags, tied them up with baker's twine, and tied a tag to the front.  The tag says, "Last year, I lived in an orphanage in Kolomna, Russia.  One year ago today, I met my mama and dada for the first time.  You can see from these pictures how much I have changed since that day.  Thank you for helping me to learn what having friends and being part of a family is all about and for celebrating my "Metcha Day" with me!  Love, Katie"  

Because her birthday is in the summer, she won't get to celebrate that day with her friends at school, so I thought celebrating Metcha Day was more than appropriate.  

The photo underneath shows a photo of her the day we met and a Valentine's photo.  Look at how much she has changed!

It would be impossible for me to detail every way Katie has changed since that day.  She's clearly changed physically, but her emotional changes are far greater.  She is an amazing, spunky, smart, sassy, affectionate, silly, fun, beautiful, loving, sensitive girl.  We are so lucky to get to be part of her life. 

Happy Metcha Day big girl!