Christmas Pictures

For the first time ever, I got the kids matching Christmas pajamas.  Oh, I thought it would be SO cute to get a picture of the three of them in front of the tree.  Maybe in a few years that will work.  But certainly, no time soon.  

So, there's your Christmas pictures from The Holton Family.  Pretend it's a card, that you just received in the mail.  Because that's not going to happen, either.  I haven't mailed out Christmas cards since 2007.  I've gone paperless.  It's all about the environment, I say.  No, really it's about the time and the cost.

Merry Christmas my friends!
~Christy

Santa

Today we took the kids to go see Santa.  

I knew Cooper would cry, so that wasn't a surprise.  But I didn't expect Harlie to sit on Santa's lap.  Murphy was adorable and brought his list to give to Santa.

It was a fun little family outing.  And just what I needed.

I have had a hard time getting into the Christmas spirit this year.  Life is just too busy.  So busy that you can't stop and think.

On Wednesday we had new carpet installed in our living room.  The living room carpet has really taken a beating since Harlie came along.  Tube feeding is messy business.  Formula spills, drips, and tubes come undone.  And there were those years of her vomiting 10+ times a day (40+ at its worst).  Trust me when I say the carpet was disgusting and should have been replaced years ago.  So, new carpet was our gift to each other and to the whole family.

No, this isn't the color we chose.  It is the padding.  I didn't get a picture of the carpet after it was installed.  Will have to do that later.

What?  You don't put your Christmas tree in your kitchen?

The installer was late, he was a stranger, which stressed me out, and I couldn't leave to run errands.

On Wednesday night, our weather forecast was an expected three to five inches of snow on Thursday.  So they canceled school.  I get that they want to be safe for the kids.  But, we woke up in the morning and there wasn't a single flake falling!  I think we ended up getting about three inches.  So they canceled school on Friday, too.  Ugh.

Cooper was chomping at the bit to go outside.  So, while I shoveled the driveway, the boys played in the snow.  They both loved it.  We actually got Harlie outside, too!  I couldn't believe it.  Those pictures are on the other camera.  I'll have to post them later.

On Thursday night, we tried to get a picture of the kids in their matching Christmas pajamas.  Talk about exhausting!  I will have to upload those pictures tomorrow.  It is too late now.  I'll post more tomorrow.

Good night!
~Christy

We have a date.

Ahhh, another date.  Haven't had one of those in what - five months?  Well, it was a nice stretch.

March 28, 2011.  Spinal Fusion Surgery.  In DC.  Be there or be square.  Just kidding.

But the best part is that this surgery requires THREE pre-op appointments - all in Northern Virginia.  Cardiac pre-op, anesthesia pre-op and surgery pre-op.  And none are on the same day.  Nice.

I really need to look into a mileage reimbursement program.

So, back to feeding for a moment... I talked with Brandy and we came up with a plan to give me and Harlie a break from feeding.  She will feed Harlie breakfast, lunch and an early dinner and I will give her a snack before bed.  Basically we switched her snack and dinner.  If I choose to give it to her orally, great.  If not, I'll tube it.  Tonight, I tubed it.  We went all night with no anger or tears.

Last night I forgot to mention that I was so angry with her/the situation/Goldenhar Syndrome/God that I had to go to CVS and the grocery store to try to clear my head.  It was late.  It was COLD.  And I HATE to run errands like that.  And honestly, the trip wasn't even necessary.  Well, I suppose it was given the situation, but you know what I mean.  Tom put her to bed while I was gone and I didn't even say goodnight to her.  I'm not proud.  But I was mad and needed some time away.  Tonight was a better night - for all of us.

And Murphy had a great night - we got notice that school has already been cancelled for tomorrow due to the prediction of 3 to 5 inches of snow tomorrow.  Still not a flake to be seen.  I don't even think it's due to start until late morning - like 9-10am.  Crazy.

As always, thanks for reading!
~Christy

Feeding and how I feel about it.

Tonight was the worst feeding session - EVER.  I can't put into words how incredibly frustrating it is.  She must be the MOST stubborn little girl that ever walked this planet.  Sometimes I think, "she's met her match with me."  But sometimes, like tonight, I want to GIVE UP!!!  I don't think it helped that I spent several hours of my day today pureeing food for her.  The amount of time that it takes to puree her food, freeze it, then prepare it prior to each meal by boosting it again, fine tuning the texture, etc. is incredible.

Tonight I wondered how much more time I would have for other things if I didn't have to do any of that.  If we just went back to tubing every meal with already prepared cans of formula.  Oh, what I could do with all that time!!!!!

And I thought, "I can't do this anymore.  I don't WANT to do this anymore!!!  I hate Goldenhar Syndrome and I hate that her jaw had to be this way."

But I don't have a choice.  As much as I want to quit - I can't let myself give up.  I just can't.  I hate the way it feels when a feeding goes badly.  But I think I would hate the way I would feel if I gave up, even more.

It just sucks to feel this way.  To be so conflicted in my feelings.  When feedings go this bad, I can't help but think it's causing more harm than good.  That I'm going to damage her by making her associate negative feelings toward all eating and oh what is that going to do to her down the road???

But quit because her behavior is bad?  When I think about that as an option - I hear this conversation in my head:

Harlie:  Mom, why didn't you teach me how to eat when I was younger?  Then it wouldn't be so hard for me now.

Me:  I tried Harlie.  But you were awful.  You blocked the spoon with your hands, you covered your mouth, you turned away, and despite everything we tried, I just couldn't do it anymore.  It was torture for the both of us and it had to stop.

Harlie:  But, Mom - I was FOUR!  Who let's a four year old make that kind of decision?  You were bigger than me - couldn't you just make me eat?

Me:  HAH!  No.  No, sweetheart I couldn't make you eat.  No one could make you eat.  You were very stubborn.  And I was tired of the fight.

Harlie:  Well, thanks a lot, Mom!  Now I feel stupid hanging out with my friends when they eat and I have to tube myself.  You're a terrible mother and I HATE YOU!

See?  So, how can I quit?  I CAN'T!!!

And when I want to scream "THIS SUCKS!" I remember how it used to be.  Before she ever swallowed her first bite.  And then I read my post from that memorable day when she finally did.  And I think to myself, "How can I complain about this when she's EATING!?"  We've come so far.

I just need to hold on until she finally gets that I'm not going to give up.  I just pray that it is soon.  Very, very soon.

Thanks,
Christy

Some Updates

Sickness struck our house a little more than a week ago.  I don't know who got it first - Tom or the kids.  Runny noses are everywhere!  And despite all efforts to avoid catching it myself - I did.  So, now I'm sick.  And colds kick my butt.  Run 15 miles in pain, sure!  Live with a sore throat - please no!!!

And Harlie and Cooper's ears have been questionable.  But no fevers.  And they are playing like all is well.    So, I didn't think going to the doctor would do much good.  Although, Harlie really needs a follow-up appointment with her local ENT.  I just haven't scheduled it.  It's been such a busy time and we see so many people as it is.  I know I should have called by now, but I just haven't.  It sounds so different when I write it - in my head I can totally see why/how I haven't called.  Sometimes I just get so tired of appointments.  And she must, too.

I have a lot to write about so, I'll just write as I think...

Dentist
Last Thursday (the day I wore my slippers out in public) Harlie saw her dentist.  For the most part, her teeth look okay.  But there is one tooth that has some spots.  Her dentist said that it isn't a cavity - yet.  So, we need to watch it really closely and if it changes at all, we need to see her again.  She said that if it does become a cavity, they will have to pull it, under sedation, of course.  She said they don't take any chances with cardiac kids - so no repairing baby teeth for sure.  I have no idea what they do with permanent teeth.  There are some questions that I'm not ready for the answers.  

I have heard thin enamel can go along with Goldenhar Syndrome, but she said her enamel looks okay for now.  I've also heard that not eating orally can really mess up the normal bacteria balance and health of the teeth.  And I'm thinking that all the years of throwing up - daily - didn't help, either.

Hopefully, we've stopped the progression of the cavity.  Apparently that can happen.  So, I'm crossing my fingers.  Although, she's going to need teeth pulled for sure anyway.  She's got a lot of over-crowding on the bottom due to her jaw being so small from the get-go.

Feeding
As fabulous as she was doing with eating orally, she's taken another turn for the worse.  We've gone through so many ups and downs with her behavior during feedings.  Just when I think we've come through and made some serious progress - things go bad again.  It is so frustrating.

I am wondering if she has a sore throat, too.  Maybe it's her cold that's making it uncomfortable to swallow.  Or maybe it's her cold that's making her not hungry.  Or maybe it's a sore throat and the gritty texture of the food.  Or maybe we went too gritty, too fast and it has nothing to do with her cold.

If only she could tell me what's going on and how she feels.  And why she doesn't want to eat.  At all.  For a little girl who is so darn smart - why oh why can't she communicate her pain to me???  She doesn't ask questions, and she doesn't answer them.  It just makes me sad.

Cooper
The weekend of Thanksgiving, Cooper graduated to a big boy bed.

Well, I suppose I should say a "big boy mattress and box spring on the floor".  No actual bed frame - yet.  Tom wants to build something.  But, Cooper loves it!  I was a little worried.  Cooper tossed and turned in his crib.  I thought he would have a hard time staying put.  And he still woke up crying a lot of nights.  So, I thought he'd get out during the night, too.  But, he's only fallen out once, that first night.  And he seems to sleep very soundly now - with a lot less tossing and turning - and no waking up crying!  He must be so much more comfortable!

He's also loving preschool.  His preschool has curbside drop-off and pick-up (best idea, EVER!) and his teacher came to the door the other day and he exclaimed, "YEAH!" when he saw her.  It was so cute!

And he's been quite the challenge with the Christmas tree.  He's broken more ornaments than I can recall.  And I'll find some in another room.  But, it appears he adds to the tree, too!   The other day I went to plug in the lights from the mantel.  I wanted to find a connection in the lights, so I got real close to the tree and started looking closely.  And I found this...

Here's a closer picture...

It is the filter to Harlie's suction machine.  I just switched it out the other day.  So, this one must be the old one that he got his hands on before I could throw it away.  And, of course, I completely forgot about it once it wasn't in my sight anymore.

So, he removes actual ornaments, but puts trash in our tree.  Secretion-related trash.  In our Christmas tree.  We're so classy here in the Holton household.

Well, it is very late and I really should be sleeping.  So, this will have to be it for now.

Thanks!
Christy

AOADD

So, I reached a new all-time low today.

I've been suspecting for the past several weeks that I have adult-onset Attention Deficit Disorder.  I'm not even sure if there is such a thing.  But, if there is - I HAVE IT.  And I can prove it.

To give you a little background, I move around the house doing everything half-way.  I start one thing, forget I was doing it and then find my half-done project later.

Today is Therapy Thursday.  Busy day.  I took Cooper to preschool and returned home to get Harlie and Brandy to go to Feeding Therapy and the dentist (at the same place).  When I got back home I walked through the garage and I noticed that I was still wearing my slippers!!!  I came into the house and told Brandy, "Whew!  Thank goodness I noticed that I was wearing my slippers!  Can you imagine if I forgot to put on my shoes for these appointments?!?"  Ha Ha - we laughed.

And then we got in the car and left for therapy.  I dropped Brandy and Harlie off at the door and then went and parked the car (it was really cold out and I can't find Harlie's coat!).  It was as I was walking in the door that I noticed my reflection in the glass door.

I WAS STILL WEARING MY SLIPPERS!!!

How did I forget to put on my shoes???  Just a few minutes passed since I noticed my error and told myself to get my shoes!!!  UGH!  This is certainly not an unfamiliar task!!! I wear shoes every time I leave the house!  Well, until today, of course.

I laughed all the way down the hallway to the waiting area.  As I was within ear-shot I yelled, "Brandy!"  And went and stood to where she could see my feet.  I didn't even tell her that's why I was laughing.  It took her less than a second to see what was so funny.  We laughed until we hurt.

And then I spent the next several hours wearing my slippers. IN PUBLIC.

Nice.  At least I was comfy.

See?  An all-time low.  And a clear case of adult-onset ADD.

Thanks!
~Christy

Nutrition Appointment

Today Harlie had a nutrition appointment.  Her last appointment was August 26th.  While she is doing FABULOUS with her feeding - she LOST a pound.  Lost a pound!!!!

But her nutritionist said that she grew in height two centimeters.  So, that's good.  But, I'm not happy about her losing weight.  A pound doesn't sound like much.  But, for her - it is a lot.  And with all the feeding that we're giving her - with some calorie boosting (adding whole milk, heavy cream, cheese, butter, syrup, mayo, etc. to her food) the fact that she lost weight isn't comforting.

One of my questions for the nutritionist when we went into the appointment was if she was ready to ditch the Pediasure and make the switch to whole milk.  Instead, she needs to go to an even stronger Pediasure!  Total Bummer.  She's just burning way more calories than I can give her.  She's very active - so that's good.  But, I also know that her breathing and her heart beating burns more calories than the average kid.  Ahhh, another one of those friendly reminders that my kid has medical challenges.

She weighs 30 pounds.  She is 37.4 inches tall.  Our daily volume goal (the total amount of food plus Pediasure per day) was 35 ounces, which she achieved most of the time (I'm guessing 8 out of 10 days).  Now, her goal is 40 ounces - with the boosted Pediasure and I am going to have to be more diligent with calorie boosting ALL her food.  I've been boosting - but haven't been measuring it exactly.  I just eye-ball it when I make her food by adding a little bit of this, a little bit of that, etc.

I know she needs the extra calories, because there is no way I could increase her volume to match what she would need in a day.  But, some of the calorie boosters just make me sick when I think about putting it in her body - like Parkay liquid margarine.  Ugh.  I'm really sorry if you're a fan - but something about that totally grosses me out.  Just like it totally grosses me out to puree eggs and tuna fish.  Not necessarily together.  I've done eggs - ICK!  But tuna fish??? Um, no.  Can't do it.

So, I have a list of other calorie boosters (heavy cream, sweetened condensed milk, powdered milk, salad dressings, sour cream, coconut cream, oils, etc.) that I need to go and get and keep in the house to add to all of her food.  And then I just have to hope I don't clog all of her arteries and make her heart work even harder than it already is.  Her nutritionist said she will be fine with calorie boosting for a few years without doing damage.  Let's hope so.  But that's just the thing in the medical field... everything is a constant balancing act.  What's good for one body part is bad for another.

I was feeling pretty bummed about her losing weight when we left the appointment.  But in the car on the way to school Brandy reminded me of all the changes since her last nutrition appointment:

1. She's eating ALL her food BY MOUTH!  HELLO!!!  That's amazing!!!!
2. She's walking more than ever - like from the bus to the classroom. 
3. She plays on the playground at school most days. 
4. She's taking gymnastics once a week.
5. She's in physical therapy once a week. 

That makes me feel better.  She's increased her activity like crazy, which is GREAT!   Now I just need to get ahead of her in the calorie department.

So, I'll leave you with some recent pics of my skinny girl.

You can see how crooked she is in this photo:

As always, thanks for reading!
~Christy