Finally, real birthday cake!

Real "pretend" mac & cheese birthday cake!

Kenzie got such a kick out of pretending to make macaroni and cheese in the hospital while she wasn't allowed to eat that I had to create a mac & cheese cake when we got home!

We're Home!!!!!!!!!!

It took quite a bit of convincing but we finally were discharged last evening.  Mackenzie spent most of the day yesterday out of her room, fed up with her bed and the same walls for 17 days.  We spent a lot of time sitting and climbing on and off of the couches at the end of the hall that have a beautiful view of the entire Denver sky line and mountains.  

When we arrived home the most charming thing happened.  Breckin looked up and pointed at his sissy as if to say; "She's home, look, she's home" he immediately wanted a boost onto the couch to give kisses, over and over!  Ainsley ran off to make a "welcome home" card with many little gifts taped inside!

Thank you to everyone who has been reading this blog, sending good wishes, knocking on wood, and invoking the power of prayer!  I certainly could not have made it through this without the strength of all of you to lean on!  The healing continues, but the soul is renewed!

Okay, I know I just woke-up but did he say what I think he said????

We could be going home today?!  All those folks out there still knocking on wood...Keep it up, bloody knuckles and all!  We found out the fever was caused by a UTI.  Easy to fix.  Overnight last night, fed up with the N/J tube she managed to work/pull it out.  Reinserting the N/J tube requires an appointment with floroscopy so we'll go it on our own and hope she keeps eating well.  So far a piece of buttered toast is on board and the oatmeal and scrambled eggs just arrived.  

She has been moving and walking and unable to decided which end of the bed gives the best view so changes ends about every 20 minutes.  These are some pics from this morning's walk where the ortho docs found us.  They are campaigning for us to go home today too, encouraged by the fact that over 50% of the time they try to see us in our room, we're not there. 

Greeting everyone that passes by:

In through the mouth, out through the tush!!!  Yippee!

Exactly what we've been waiting for all this time.  Kenzie is still fighting off whatever bug she had this morning but the fever has gone down.  We celebrated with apple sauce and graham crackers!

FEVER!

1 step forward, 3 steps back!  This morning Kenzie woke up with a mysterious fever.  Lethargic, chills, blue hands, the works...gratefully, no vomiting,  knock on wood...seriously, knock on wood, you reading this, knock on some wood!  I need all the help I can get to get my baby back home!

Labs have been drawn and x-ray done.  Hopefully we'll have an answer soon...

Kenzie and I had a really great morning!  We took a wheelchair ride downstairs followed by a short nap and then a marathon walk in her walker.  We played for awhile in the playroom where we pretended to make mac & cheese for lunch and drink coffee using the kitchen set.  She was giggling so much so she had to lie down on the floor because she couldn't support herself anymore!  When we got back to the room, she climbed on the bed, laid flat on her face and there she sleeps!

Glad to be off her bed and sitting with dad!

Still dripping...

Kenzie has tolerated increases in her n/j tube feedings really well overnight.  Fingers crossed we'll start some mouth food tonight....They cut her off ice chips yesterday afternoon through the night, boy was she ticked!  So ticked that this morning while she was deciding that the other end of the bed ought to be the head of the bed, she pulled out her n/g tube which was still doing some suction from her stomach.  We'll watch her tummy today back on ice chips and if all goes well, the n/g tube will not be replaced.  Slowly, slowly... wake-up tummy.

Drip...drip...drip... Let the feast begin!

Using the now in place N/J tube, Kenzie has begun receiving formula. The amount is giving so slowly it will take 6 hours to give 6 oz. Given a straw, Kenzie would ordinarily suck that amount up in 6 seconds! The law of 6's. But, as the GI doc said this morning..."If the stomach is left alone for too long, it grows lazy and stupid" forgetting it's natural role in life. Tomorrow she will slowly begin to eat by mouth, waking the stomach for the first time since her surgery 14 days ago.

The doctors knew I would never be able to say; gastrojejunostomy.

As always, Kenzie is one in a million.  Her stomach actually flipped over...really, flipped over in her belly.  When her organs and such rearranged during and following her spinal fusion surgery her stomach rearranged itself to a whole other dimension!  Since that was the case, the surgeon was able to relatively easily turn it over using laparoscopy and called in assistance from the endoscope team to see inside the stomach while they were looking from the outside.  All said and done they tack down the stomach to some of her abdomen to keep it from somersaulting again and made mention of the fact that she also has a "wandering" spleen.  Who knew a spleen could wander and where would it want to go anyway?

Waiting...waiting...waiting

Mackenzie went in for her laporoscopy procedure at about 2:30 pm  we are waiting for an update from the doctor to see how extensive this will be.  In the event that the "kink" can be found and detangled we won't have to wait much longer.  If not, the doctor will preform a gastrojejunostomy (vocabulary word of the day)  they will connect her stomach to a piece of the jejunum further below the "kink".  She should be done by 5 pm.... updates to come!

Don't you just hate when bloggers slack off!!!  

We're still waiting to hear from the General Surgery team.  Her case was presented in conference this morning, reviewing the endoscopy video.  What we know is that there is not a blockage, she does not have SMA disease (where the large arteries that leave the spine press on the bottom of the stomach).  The plyorus (vocabulary word of the day : wikipedia stomach) has located itself up way too high.  Either because of the serious distention of her belly 5 days ago or while relocating following surgery.  It could resolve itself if she gets up and walks more and more or they may try the endoscope again to try to get to it to open it (it sort of kinked up on itself, folding over very beautiful pictures of the inside of her stomach).  Still waiting for a plan.  

On the upside she's REALLY active today, walked a full circle of the unit, turning, rolling and sitting up in bed all morning.  Her feet were on her pillow when her ortho doc walked in this morning.  He put this on the good column of Santa's list.  I think the nutrition is giving her the energy she needs to fight back again.

Bad News tonight....the exit of Kenzie's stomach is about 75 degrees north of where it should be so is unable to empty.  I didn't know she knew how to do handstands.  

Brush with fame!

Kenzie had a visit from the Colorado Avalanche today!  Yippee!  

We're waiting for an endoscopy scheduled now for between 4 and 4:30 this afternoon.  We hope this will clear-up what the issue is with her tummy.  Whether it's a blockage, SMA disease (the major arteries leaving the spine and running down your legs putting pressure on the duadanum since the relocation of her spine) or just a sleepy belly not wanting to wake-up after many many narcotics.  On the upside, she pooped today!  Around here, that is really something to celebrate!

Vocabulary words of the day:

duodenum

floroscopy

N/G Tube

N/J Tube

PICC line

These are a few of the crash course learning moments of today. As Kenzie's doctors put it, her gut needs to wake-up. We're setting an alarm for 12 am tonight. She'll finally receive nourishment introveniously for the first time since surgery through her shinyy new PICC line.

Happy Birthday Mackenzie!

Although she was exhausted, she practically crawled off the bed to see her baby brother and get her birthday kiss from him!

What do you mean I can't eat cake?!  Forget it, I'm going to sleep!

Kenzie had an Upper GI done today and I got to see what I would characterize as a massive obstruction in her belly (I counted five screws high:  see x-rays from previous blog).  It has been described to me that when correcting this large a scoliosis curve, the major arteries that leave the spine at the level of the base of the stomach can sometimes put pressure on the upper intestine. We'll be taking the next steps to help her along tomorrow.  Doctors are eager to try the least invasive procedures available as the first step.  So am I!  Keep your fingers crossed for success.

She had a wonderful time seeing family this evening, celebrating her birthday.  However, the best gift she received today was a very well loved sweater from Addie!  Addie, you passed the love along, thank you!

Our Bionic Baby Girl!

Before

After 

(still in the OR before they removed the support equipment.  She does not have any framework(as the x-ray shows)  or a brace, just bandages.

Side View

Discharge orders were written yesterday afternoon for discharge this morning...however, after starting solid foods for the first time since surgery (exactly one week later) Kenzie's belly still wasn't awake enough and reorganized to move food through her system so we find ourselves waiting for an upper GI scheduled for later this afternoon.  

Even still with no food, no drink, she continues to amaze us.  She walked with her walker the entire length of the hallway (there are about 15 rooms along one side of the hallway) and back this morning and is in good spirits, smiles, and sits-up and rolls herself over in her bed (all the time, making mom crazy because of the tangle of lines still attached!!!).  She even went down to the speech communication department so mommy could learn how to program her fancy new talker, a Dynavox V which arrived Dec. 1st!

Thank God for Humor!

Along the journey of Mackenzie's recovery, there is the crazy, no, insane, activities that happen in the background to Eric and me, her parents.  We handle our stress with humor.  A hopital stay never fails to provide the crazy material neccessary.  

Here is one of those moments...Since the day after surgery I have requested an unflavored toothette for Kenzie.  I happen to know that toothettes exsist that are unflavored or if you're lucky you can find a toothette that is purple; those are the rare and much sought after (at Children's Hospital anyway) grape flavored toothettes.  For those who don't know, a toothette is a spongie swab you use to moisten and clean someone's mouth who is unable to drink liquids.  The pink toothettes are flavored with mint (remember; pink, bad).  These were the first toothettes to arrive.  I asked the nurse to find any toothette that wasn't mint.  Kenzie hates to have her teeth brushed to begin with and having the mint toothette hospital memory and mint tooth brushing relationship will only make matters worse (at least this is my rationalization in my mommy brain)  The first nurse was stumped by this request.  Having not realized the toothettes were flavored at all.  Due to years of OT therapy at Children's Hospital under my belt, I know for a fact other toothette flavors exist and live here among us.  

My requests for an unflavored toothette continued and increased when Kenzie had to go on the n/g tube.  One nurse really did go all out to find an unflavored toothette and found the closest replacement she could, the "oral care and suction kit" with 3 steps of oral care "formulas", attachments for the suction system, and to her credit, an unflavored toothette!!!    

All along however, when a request is made, orders must to be written.  The nurses' desk secretary found a brown paper bag with Mackenzie's name on it on her desk this morning and delivered it to our room.  Look what fell out!...............

Any guesses how many times I asked for an unflavored toothette?

(wonder if these will all end up on our bill?  Probably!)

If you have to be at Children's Hospital, the holidays aren't the worst time to do it!  Kenzie was doing great today, her tummy felt much better and PT was thrilled to have the opportunity to get her up and moving.  She started by walking in her walker down the hall 15 mommy paces (yes, I actually just went out to see how many paces.  I know, I'm weird, but accutate and frankly a little bored!).  She was then able to participate in the "23rd Annual Harley Toy Ride"  She got to go downstairs, listen to the roar of 3000 Harley Davidson's, and MEET SANTA!  Yippee!!!!

To top off the day, she had a visit from her 3rd grade teacher!  She lit up, and had to show-off how well she was doing.  She sat up over and over again, did a little snorting and smiled those great melt your heart Kenzie smiles!!!  I'm kicking myself for not taking a picture of the moment.

Wow, what a day!  

A watermelon with a Kenzie attached!

Yesterday Kenzie's tummy was the size of a watermelon and thumped like one too!  The n/g tube was put in.  This morning it's a softball with a Kenzie attached.  Feeling so much better, and at 4 am this morning when she called out to me, she was sitting up!  It won't be long until she's crawling out of her bed!  There hasn't been a hosptial bed or chair that could container her.

Wait a minute....what's that?  Could it be?

A SMILE!!!!!!!!!!!!!

It's not that cold here in Denver but for my friends and family in Minneapolis, that picture has got to warm you all up!  Love to all!

  

Evicted!

As far as the orthopeadic team is concerned, Kenzie could go home today.  One problem, she can't hold down any food or drink.  When a curve is straightened in a road, homes need to be relocated, as is the case with your spine; bowels, intestines, vital organs etc. all have to pick up and leave the area.  Kenzie will be put on an n/g tube today and likely it will take a few days for all the plumbing to take up residence someplace else.  On the upside, the neccessary "waste management team" has been working fine!  

Okay Okay....bad blogger....I left you all hanging didn't I!!!  

Yesterday was just so full of wonderful events I didn't want to miss a moment!  1st Kenzie had her chest tube removed in the morning.  With that out so, she was feeling much more comfortable and started to get used to her new back by 

trying to roll herself over.  The ICU thought, this

 girl is nothing but trouble and sent her away.  We are now relocated to the 6th floor with a mountain view.

It was my turn to spend the night at home... this is what I

 was greeted with when I got home:

A creating another book for her sister.  And.....

 B and his "SUPER ORANGE VISION"!  He walked around the house with orange vision for about a half hour  LOL!!!

But here's the really good stuff:

Up in a chair and ready to roll!

Mom is much more enthusiastic about the event than Kenzie

This one's for Auntie Christine.....AN ENTIRE TREE OF PENQUINS!!!!!

Oh, almost forgot.  She had another session with PT this afternoon and sat for 5 minutes and....nearly smiled!  She's awesome!

Amazed...

I'm just amazed.  Kenzie has been wonderful!  She's surprised her doctors, nurses, therapists and her mom.  We are still in the ICU tonight but she has been comfortable the majority of the time this afternoon and is right now, sleeping like a baby.  The last step to be moved upstairs to the Orthopeadic unit is to ween off of her IV pain meds.  Levels have been reduced all evening and she is doing great on the oral meds she's taking.  Respiratory docs have been coming in to give some breathing therapy and she's been a star on those too.  What's better than a ROCK STAR?  Because she is so much better than a ROCK STAR.... (however, she probably has as many drugs in her system as any of them ;)  Sweet Dreams to all.

Before

After

Look Mama I'm Sitting Up!

Kenzie sat up with assistance today and stayed up for 2 minutes!!!!!!!  She is still in the ICU but may move up to the orthopeadic floor this afternoon!  She is doing exceptionally well according to the team of residents "reporting" this morning outside our room.  Slowly but surely IV lines and tubes are being removed.  She started with 6 "access" points and we have put snoopy band-aids over 2 of them now.  Kenzie had a restfull night and Eric did not... I guess that is to be expected.

One Step at a Time....

Today Kenzie was much more alert, often times agitated, and even smiled a few times. PT came in to start her workouts on her new back. She was rolled a few times by PT had a sponge bath and sat up for 20 seconds. Good thing mom wasn't there I would have been way too over protective and worrying about every movement and each little wince... This evening and over night she will be in her daddy's loving and capable hands while I get some very needed and I think deserved sleep at home. I wouldn't go so far to say restful though. A is running around screaming, Little B just tumbled over and is crying....why did I come home again?

A breath of fresh (cough, cough, hospital) air!

Kenzie has been removed from the ventilator and breathing just fine on her own!  That was the biggest post-operative hurdle.  We were told it could have been 24 to 48 hours on the ventilator.  When the tube came out she looked me in the eye and said "mama" which caused the mommy waterworks to flood over.  Relief, anxiety, guilt, concern, agony, exhilaration all rolled into one little word "mama"!

Good Morning Sunshine!

We all had a fairly restful evening!  This morning Kenzie has woken a few times and quickly returned to sleep but I have had a few moments with her where she was alert and aware.  And if you know Mackenzie well enough, what's the first thing she's asking for? FOOD and WATER!!!  She is still on the ventilator but more and more frequently she is taking breaths on her own and leaving the ventilator in the dust.  I know this because I am an expert on all the equipment and can read all the charts and graphs buzzing around in here, ha ha, right!!!  

Seems like we have a nice pain relief cocktail is mixed.  We'll hear from the general surgery team early this morning about the chest tube (possible removal, she had 2 x-rays through the night).  Later this morning we'll see the ortho team (they get to sleep in I guess, their job is done). :)   

Tower of Power!

Kenzie came up from surgery to the ICU unit at 6:00 pm.  Time spent between then and nowhas been coming up with the right combination of drugs to manage her pain, and keep her sedated enough to ignore the ventilator that and sorting out the tangle of lines and cords coming off from her.  

The doctors have been able to turned the ventilator down a click or two (that's a medical term, really, I swear!) as she is doing some of the breathing on her own.  As drugs wear down, mom and dad are recruited bedside to help calm her until the next dose can be administered and take effect.  We're just wondering when the next dose will be administered to mom and dad!  We are hoping for a relatively restful drug induced night and look forward to some more alert moments tomorrow. 

Thank you all for your out-pouring of love and support!  We have received so many heartfelt notes, emails, text messages, facebook posts!  I (mom) just wish ya'll weren't so nice, it makes me cry!!!!!  (kidding, well, not the crying part they actually do make me cry but in a good way!)  

Thank you, Thank you, thank you!  Good night and sweet morphine induced dreams to all.

Tinker, tinker, tinker

Kenzie is doing well, they are working on her back.  The screws have been placed and the rods are being bent and fit into place.  Still about 1 1/2 hours to go but gratefully moving along smoothly!!!!

Roll over Roll over, Mackenzie roll over....

All the work to be done on the anterior has been completed and closed, they have rolled her over and are busy now flexing and straightening her spine connecting the rods that will run down either side of her vertebrae and screwing them in to place.  We are elated that they have been able to continue the surgery.  There was concern that she would not be able to complete both sides of the surgery at one time since she is so petite.  If they would have stopped it would have meant she would recover for two weeks and then proceed with the back.  What a relief, keep good thoughts, she still has 3 1/2 more hours to go!

So many steps along the way...

We've been updated that the general surgeon who is doing the anterior exposure to the spine has completed his work.  That means our orthopaedist is now removing the growth plates between each vertebrae from the front.  Removing these will keep Kenzie's spine from torqueing around the rods as she grows...sounded like a good idea to me to do this...but what do I know.  The downside of this procedure is that they have to deflate her lung in order to access the area they will be working in.  YUCK!  Guaranteeing at least 24 -36 hours on a ventilator following surgery.  The anesthesiologist also just informed us that all of her lines went in really, really well which is a big relief, because they will be using them to follow closely the stimulation positive or negative to her spinal cord. 

Kenzie's last ditch effort at escape! 6:30 a.m.

Out of one pair of jammies into another, but thrilled to see 9News on the TV

Inflated warm air blanket:  We teased Kenz that she looked like a great blueberry, ala Willie Wonka's Violet

Great Marshmallows Charlie Brown!  Off to surgery.

We're Off!

It was a long start to the morning.  Kenzie is under sedation now and surgery is about to begin.  Mom and Dad are fed and now the waiting begins.  Here are a couple of pics from the early morning preparations. 

Pre-op: We are on target - 9 days till surgery. Everything has checked out fine and most importantly safe for surgery to go ahead. Our baby girls' next x-ray will be something to behold! Do you think she'll set off the security devices at the airport on our next family trip?

Zzzzzz....

One more test done on the road to an anterior/posterior spinal fusion:

Sleep study went great for nearly the entire night until 4 am when Kenzie's sats went down and the nurse was required to turn on the oxygen.  I've known that she has had mild issues with apnea lately so the required sleep study came at a good time.  I'm hoping we won't have to have oxygen at home since her early morning wanderings include time with mom and dad in bed and trips to the living room to use her talker to wake-up the rest of the family!  

I just imagine all of us in our jammies hung up on a clothes line around the house!  If I didn't have my humor I'm certain I'd be under six feet of dirt by now!

Great News!

The gait analysis determined Kenzie should have freedom in her hips and they would suggest NOT anchoring the hardware of her spinal fusion into her pelvis!!! I'm thrilled she will be able to maintain that movement, I'm convinced she will be able to overcome the rest with no problem but felt she really needed that little bit of rotation to do it! Yippee!

This weekend is her sleep study, the next step on our way.

Glow Little Glow Worm!!

I was so proud of how Kenzie "performed" for her gait analysis today! This is the first of many many tests preceding her anterior/posterior spinal fusion surgery. In an effort to maintain a balance of flexibility and repair, the gait analysis will help the doctor determine the best course of surgery for Kenzie. With all the reflective balls attached to her she looked like she just may be starring in the next high tech video game! She did all of her very best "tricks." Laps back and forth with her walker, climbing into her wheelchair unassisted and turning herself around, and some crawling too.

How do you know you've made the right one?

I haven't added to this blog in awhile. I have been struggling to wrap my head around the newest challenge Kenzie has to face. It had been determined that it is time to either do something, or do nothing, about her severe scoliosis. Doing something means an anterior/posterior spinal fusion. Her entire spine is effected in an s-shaped curve.

I have known that somewhere down the road surgery would be a possibility. Knowing it was still down the road gave me the ability to deal with it. When confronted with the future... keeping my emotions in check is a constant battle. I found myself standing in the middle of Target the other day tears welling up in my eyes and had to run out of the store before I absolutely burst into seizure-like sobs.

The simple question that rolls around in my mind is this: Will this insanely invasive surgery really, REALLY improve her quality of life?

Along with that are the questions of actually surviving the surgery, will the surgery end up causing her more pain in her future. How will it feel to be maybe 5 ft. tall for the rest of your life. The surgery will end any additional growth in her trunk. (She's only 8, she has a lot of growing to do still!!) Why in the world would I voluntarily put my baby through this?

This is by far the worst part of the job of Mom. Making the decision to do it or not to do it. Like I said at the beginning I'm still trying to wrap my head around the shock, get my emotions in check and then throw myself into the research phase. Just like the 7 stages of grief, there always seems to be stages when confronted with these overwhelming decisions. Without the input of Kenzie I feel like I'm out there just hoping I'm making the right one for her.

Kenzie "teaching" little B how to talk.
Little B giving it a try.

Kenzie uses an e-talk augmentative communication device which was purchased for her 3 years ago. It gives her the ability to resolve our misunderstandings. But, mostly it allows her to be social when for years she didn't have the tools to be. Sadly, before she made it through the Medicaid wait list (thanks to all the Colorado smokers out there for helping speed up the list, due to an increase in the cigarette tax), our insurance company turned down our request for coverage of the device. On what grounds? It was considered an educational device! (telling us whether or not she has a wet diaper definitely falls into the category of education, come on!!) Of all the insane excuses I've heard through this journey, this tops the list. Through generous, generous donations from friends and family and a fun day having a bowl-a-thon, we raised the $7500.00 it cost to purchase it. This is where the idea for the name of my blog came from. Mackenzie's voice, she finally has a voice. The one very unfortunate part of the device is that she is not able to program it for herself. How, as her mom, can I program it so the voice truely represents what she wants to say? Really, how would you like it if your mom always did the talking for you? She certainly wouldn't say all the things you would like to. All those wonderful things us moms hear everyday from our beloved little ones like: you're the worst mom ever, I'm leaving and never coming back. These, all examples of things I heard this week from my master communicator, middle child, A. What would you suggest I add to her talker?

What a difference a day-off can make!

Two days ago, Kenzie decided to take the day off. We usually have a pretty smooth morning before school, we get her sister off on the bus and then she and I get a little time to spend together while she gets ready for her bus to school. I observed very clear behaviors from her that she wanted the day off. Of course, she couldn't tell me but she patted my thigh during breakfast an indication that she wanted to sit on my lap (I love this "sign", because it means mom gets cuddles!!). When we moved over to the couch to get dressed she absolutely refused to sit-up. I'm not sure how to describe it but her body was entirely limp and stiff at exactly the same time. There was no way I was going to get her dressed. Every time I mentioned school she would get really upset. I got the picture...no school today!

Once she realized I wasn't going to send her off she relaxed and had a nap for awhile. However, it was also a beautiful day, sunny, 70ish degrees outside, so I opened the back sliding door so the dog could go in and out (he's always on the wrong side of the door). In a blink, Kenzie was out the door and half a football field away to our swing set. This feat is incredible! Upon arriving at the equipment she was half-way up the ladder on her own EXTRAORDINARY!!!! and then with very little assistance from me (by now I had made it out there) she was to the top on her perch. She loves to be up high looking out - I often call her birdie because of this and I think she looks a bit bird like - long skinny legs, very observant eyes.... Thinking this was a great chance to do a little strengthening, I put her on the swing. She usually can't sit up without her bottom slumping back and nearly falling off. Not today! She sat up straight, used her legs to move herself back and forth.... When did all this happen? Have I been sleep walking through this extraordinary development, or did it happen quite literally overnight???

The rest of the day Kenzie did sleep a lot. The next morning she was ready to go back to school, as if she had presented all of her accomplishments and therefore prepared to take on some new challenges again.

And then this happened:

A in the snow on May Day!

I wonder where she's going?

Kenzie "snuck out" of the house while I was loading her chair into the car yesterday. I often wonder, if left undisturbed, where would she go? When I meet my genie in a bottle and am granted three wishes these are what they would be: 1)To live in Kenzie's brain for a day. I want to know what she thinks and HOW she thinks. Her receptive verbal skills are very good and I know all the head-hitting she does is directly linked to her inability to tell us what she wants and needs. 2) To get a hug from Kenzie. She is so tactically defensive she is unable to give a hug. We can hug her, she gets lots of hugs, but I've never received a real squeeze from her. This never occurred to me until I had A and I was given real squishy hugs from her. 3) If my husband and I die first, someone really wonderful will take care of Mackenzie (tears streaming now!). This, by far, is my very greatest wish!

Happy Birthday Grandpa Jim!!

This picture was taken in 2003. Kenzie has a few people in her life that she absolutely adores. Grandpa Jim is one of them and at the top of her list of favorites. When this picture was taken, we surprised her with his visit. She was waking up from a nap when he walked in to say hello. Her expression is priceless! I look at this picture so often as a reminder of pure joy!

Such a struggle she's been having at school. She attends a typical public school, well, I wouldn't call it entirely typical. I hear so many horrible stories from other parents in our area about their experiences and I count myself lucky to not have had such bad ones. I've always considered myself someone who truly trusts her gut instincts about things. When we went to visit what would become her new school I had a good feeling about it. Kenzie was in a school with all special needs kids for 2 years of preschool and kindergarten. When it came time to consider 1st grade I felt we needed to move her. The old school wasn't bad but I knew Kenzie would be so much happier around typical kids. I had many nights of sleeplessness about moving her, but something told me to do it, and I've been grateful ever since. Her struggles in the last few weeks have come from CSAP testing. She doesn't take them but it completely disrupts her and her classmates normal routines. She is also sent off, away from the typical classroom, where she loves the other kids, so that they can be tested without disruption. This is murder for our little girl who apparently has also developed a bit of a crush on one of her classmates. I know the next few weeks of school will be filled with disruptions, I just hope she'll also stop herself long enough to enjoy what's left before summer break. (more on that later!)

We love therapeutic riding!!!

I am a firm believer in the miracles of therapeutic riding. Kenzie was so thrilled to arrive at the farm and see the horses. When we unloaded and were waiting for Chocolate Chip to arrive she was pointing and clapping with anticipation. This was one of the moments (there are many) that she really got it...she was completely there, in the moment, and thrilled. There are so many moments that, as a mother, I am so excited for her, and she just isn't there. Whether it's because of pain, fatigue or over-stimulation, she often misses the joys in life. Thankfully, yesterday wasn't one of them!

Curious?

Among the many mysteries that Kenzie continues to stump us with is the SIB of head hitting. The velocity with which she hits herself has got to hurt! We use a helmet when it gets really bad but in public I always feel sad that other kids stare at her. I try to laugh it off by saying "her mom is a really bad wheelchair driver" if a full explanation isn't called for. We have tried every conceivable tactic to change the behavior. If anyone has had success "displacing" this I would love to hear about it!

Four Eyes!

This afternoon Kenzie was home with B and me. I looked down at the ground and realized I had four of the most beautiful eyes looking up at me! Both sets were looking expectantly and with a purity that you don't see everyday. I was feeling silly so I did a quick little song and dance for them and in a moment we were all in half with giggles. It was a terribly gloomy day but somehow the room as lit more brightly for a minute.

I started this blog 2 years ago...has it really been that long ago? There is so much rattling around in my brain I don't know where to start. We've even added another member (2 members if you count the dog) to our family!

I have abandoned all hope of naming Kenzie's "genetic disorder." Of course, I've done this before and just when I do someone asks me what her diagnosis is and I stammer and stutter, finally, answering she's undiagnosed. When I get home I take out my medical rolodex and start reintroducing myself to all of the specialists we've talked to in the past. It usually goes something like this: "Remember me, I'm the crazy mom that is in dire need of a lable, that likely I don't really want, to put on my child." They say they'll pull the file, days/weeks later I get a phone call back that basically says: "we don't have any new ideas now but we'll keep thinking about it." I answer....."Right" defeated again. But for now, and in an effort to celebrate spring and summer with a cluster of kids, I abandon the search. Nothing is likely to change before fall.

B finding his toes for the first time!

The introduction of a new baby to our family has absolutely charmed Miss Mackenzie. She is smitten with her baby brother and makes certain I attend to his every need whenever he makes a peep. She will sit outside B's door and wait until he makes a sound then either bang the door or calls out to me with her ba-ba-ba verbalizations. Usually, mostly, the banging part.

I may be one of the few citizens thankful to congress for increasing the length of daylight savings time. Although, my body clock has changed, without the understanding of time, Kenzie's has not! Which means our house gets an extra hour of sleep in the morning than before the time change. Rather than 4 am wake-up calls, blessedly it is 5 a.m. when Kenzie is up and out of bed.