Fifteen AGAIN

Treatment # 15...again.

Last month Gabi woke up with croup the morning of her treatment and it was canceled.  So for counting sake we are still at treatment #15, trip #16.

We drove again; 534 miles to Englewood, Colorado.  As usual we left Sunday morning and stopped in Rifle for lunch, and to throw rocks into the pond.

I hate flying, but I would have to say that driving is horrible too!  Not because of Gabi, she is an angel the entire 8 hours, the roads are just horrible and dangerous!  On the way out of Wellington on Highway 6 we were nearly (inches) struck by a semi head on.  Then through Vail we nearly hydroplained ourselves off the side of the road, a cliff.  Once we passed through that canyon we entered Eisenhower Tunnel where the road was nothing but a sheet of ice.  Yes, we did make it into Denver and on the Englewood safely, but seriously, that was NOT FUN.  After much anxiety running through at least my veins, an achy back, and numb butt we were finally there.

We went to dinner at Sweet Tomatoes and then to the hotel for swimming.  It was late and I was not excited to swim, but Gabi wanted to and we had to go for her.  It only took one jump into the pool to know that we were not staying long.  I believe they forgot to heat the pool, or the boiler broke, it was ICE COLD! So we got out and Gabi put on a show for us:

Strike a pose,

And one,

Two,

Three,

Four and,

Five.

Those were all taking in a matter of seconds.  It was hilarious! She had the whole hot tub of patrons laughing.

After the fun photo shoot it was back to the room for the next days preparations.  

Monday started early.

5:00am.

She was not happy to be there, as we all could imagine.

She just wanted to be left alone.

She watched a little television, and received a new bear.

We tried to comfort her as much as possible, but as you can see the look on her face tells it all.

She gave us one little smile and her bear a good luck hug before she went with the anesthesiologist.

After that, it was through Hell again.

Being held down with a mask over her face, feeling like she was drowning.

Pleading to me, "No mom, No!"

Her body finally succumbing to the gas and she fell asleep. 

Only to be woken up by hot pain, 

strangers leaning over her,

bright lights blinding her dilated eyes,

loud screaming and crying from patients around her,

a dizzy head,

nauseous stomach,

cold oxygen blowing on her face,

dry cracked lips and throat,

her face swollen past recognition

wires and tubes hanging out everywhere, 

and no mom.

It never gets easier.

We only hope to one day SOON hear from Dr. Yakes that she is DONE.  Right now it seems that we will never hear that word.

While she was in recovery the anesthesiologist came and talked to me about how Gabi did with the treatment.  He made sure to give her all necessary drugs to make sure recovery would be as easy as possible on her.  He said Dr. Yakes injected 10cc of alcohol this treatment.  Are you kidding me?  Sometimes I feel like he doesn't realize what he is doing to our little girl.  A regular treatment involves   5cc-6cc and has never been more than 7cc.  You may think that is a small difference but when you see the effects of that much alcohol in the veins of a 3 year olds cheek.  I wanted to shake him!  To put it plainly, she will now have 3 large scares on her face from where the alcohol burnt through her veins, tissue, and skin.  Her eye was swollen shut for 4 days. Not typical.  She was super moody for 7 days. Not typical.  To make it all worse her Children's Chewable Motrin was recalled!  For the smell of all things.  Now, you may say, give her liquid or crush an adult tablet...well that just doesn't work.  So, for the first 36 hours until we got home to where I left (my fault) our Motrin in the cabinet  she had no anti-inflamitory medication, resulting in massive swelling as you can imagine.  To make matters better she could only ingest 12oz of liquid in the first 24 hours.  

The ride home was eventful.  Driving into Glenwood canyon we drove through a rock slide that luckily we missed just minutes before.  We did however have to quickly maneuver through the debris with only a split second notice at 70 miles and hour.  We made it home in one piece and were so happy to be there.     Gabi saw herself in the mirror and asked not to see herself again.  She didn't want anyone to see her either.  She became very self-concious this treatment, and it makes me so sad to see her like that.  We kept assuring her of how beautiful she is and made sure she knew how much we all loved her.  That seemed to help a bit.

   

She wouldn't even let grandma and grandpa see her.

This is Wednesday, 3 days after treatment.

This is also Wednesday.  A better picture of the alcohol burning through her cheek.

The eye patch was homemade, thanks.  Her eye was bothering her and so Grandma Shelli took care of it.

Thursday, she was back to school.

She woke up being pretty funny.  Very excited that her eye was finally open!

I told her that she was having an Easter Party at school, so she ran and put some clothes on (Izze's).  

APRIL FOOL'S

No, really she didn't know about April Fool's Day but she told me that she wanted to be funny and tease her teacher. Of course I let her, seeing as it was an appropriate day for such silliness.

She is in recovery mode and doing well.  

We CAN wait until the next treatment which is scheduled in May.

Treatment #15

CANCELED

Yes.

We went to Colorado as usual and were prepared for Gabi's treatment the following morning.  We had a lot  fun the day before going to Avatar 3D, Build-a-Bear, Subway, Waffle House, and of course swimming!!

Gabi giving her lucky unicorn (Layna) a nice bath.

Sunday night Gabi made a wish on her unicorns horn; a secret wish, that came true the next morning.  She wished for NO TREATMENT, and it came true!

She woke up with croup.  So Dr. Quinn (Anesthesiologist) was not going to take the risk of intubating her with an already irritated throat and also considering the massive swelling that would occur after treatment on her facial VM.

We did however still check into the hospital.  It was hilarious when Dr. Quinn canceled the treatment because Gabi said, "Let's Bust out of here!"  and she ran down the halls of the hospital and right out the front door.  And we all went swimming again!

Looks like next time Layna (the magic wishing unicorn) will have to stay home.  So we can finish these treatments and finally "BUST OUT" of the hospital for good!

Swimming lessons

Gabi started swimming lessons with uncle Casey 2 weeks ago and she LOVES it!!

She can't wait until Friday evenings to jump in the water.

(we do go swimming a lot during the week, but to her it's NOT the same)

Spending time with uncle Casey.

The first week she had no problem putting her head back in the water but this week there was an issue with water in her ears.  I can't believe how much she enjoys swimming and how well she listens to Casey, AMAZING!  She is doing so well!!

Gabi's first book

Gabi has been very excited about learning this last year and I haven't been as helpful with her as I could or should be.  We have however spent a little time every now and then do fun learning activities.  This book was the result of one of those times.

*(the dots all over dad's face are his whiskers)

*(Mom has very lady eyelashes)

*(Izze has short hair and a tiny nose)

*(I have long hair and a birthmark)

The illustrations were ALL her own.   No suggestions of any kind.  What she drew is what we look like, seriously!  It's funny to see the funny details she included with each one of us.

*The specifics on the photo details given by Gabi.

With LOVE,

We went to a family Christmas party this morning and every year Santa gives the children gifts when they sit on his knee of course. Well this year was especially special for Gabi. She sat on Santa's lap and gratefully accepted his gift to her. Just as she was going to climb off his knee he noticed there was actually another gift for her. As you can imagine, that was very exciting for her to see another gift, and this one was even BIGGER! When she opened it up it was a BEAUTIFUL quilt that was handmade by Ben's aunt, just for her.

It had a special note to Gabi telling her how special she is and that she is loved and thought about daily. The quilt was a token of love and sacrifice because of the treatments she so frequently endures.

Thank You Joyce for your hard work and thoughtfulness.

Treatment #14

Treatment #14 down. Who knows how many more to go, I sure wish I did.

We went back to flying this treatment because of weather, which was a great idea seeing as I-70 was closed through the canyons the days we were traveling.

Gabi was really excited to fly on a plane again. this is her at least 38th time on a plane. What normal 3 year old has flown 38 times? I am just surprised I am still alive ( I HATE flying! I think I am going to die, the anxiety kills me!). Gabi is great on the plane and loves it.

Giving daddy hugs.

When we arrived in Colorado the temperatures were FREEZING, actually below freezing, Gabi loved to "make smoke" come out her mouth. She thought that was super cool.

After some shopping and dinner we checked-in the hotel and changed into our swimming suits. That is Gabi's favorite part of going to Colorado. Not that there are many "fun" things to chose from.

After we swam and settled down for the night she looked up at the ceiling and quickly jumped up from the bed and announced that she was ready to go home and that she wasn't going to stay here any more, she hated the hotel and she didn't want to live there anymore. You see, she is catching on to the routine, no matter how hard we try to mix it up or keep her and her mind occupied on fun and activities, she gets it. She told us that the "bumpy ceiling made her sad." After a lot of talking and fingernail painting she finally dozed off; to be rudely awoken at 5am to get to the hospital.

Once there she explained to us everything that was going to happen. "First we go see that lady (the admissions lady) and get my bracelet (patient wrist band) and put stickers on it. Then we go up the elevator to the room with all the couches (surgery waiting room). Then we go with the nurse and watch TV on that tiny TV (Pre-Op)." At this point she gets very anxious and doesn't trust anyone. We try to talk her and bribe her into taking Versed so that she will be calmer and hopefully not remember the treatment but this time was NOT successful on getting her to take it. The only thing she would do was put on her hospital gown because "Angi made it and she loves me so much, and Addi sent it to me." Because she didn't take the Versed it made it a lot harder to get her under anesthesia. She fought so hard and kept saying, "Mom, I love you, MOM! I LOVE YOU!" and I could see in her eyes her pleading for me not to do this, not again. I tried to tell her that everything was going to be okay but the hard part is that we tell her how beautiful she is and how special her birthmark is; and she doesn't understand WHY we are going to the doctor to "FIX" it or "HELP it get better." She is so sweet and I hope this ends soon!

She recovered from anesthesia quickly and was in no pain (that she would tell me or acted at least). Se asked if she could take the IV home because she was so scared of taking the tape off her arm because they seriously tape 1/3 of her arm so the IV will NOT come out. One more time we had to pin her arm down while she cried to please not hurt her anymore so we could get the tape off and the IV out. Once it was finally out her boots were on and she was outta there, but not without her Christmas candy cane she got to take out of Santa's sleigh.

Once we were in the car she said that she was STARVING and all she wanted was a hamburger and fries, so of course we obliged. She ate a few bites and was ready to go swimming! She quickly changed and was posing in the mirror in minutes.

She had to bring her lady bag poolside so she was ready to swim in style.

After 2 more times swimming and a good nights rest it was time to go home.

Our flight wasn't until late Tuesday night so we had to burn the day hours and finally we could get home. We had to walk to out little plane in the still freezing temps.

And in only 1 hour and 16 minutes we were.

HOME!

Ready for the holiday's with no treatment until February.

in STYLE

Gabi has the most AWESOME aunt in the entire world, HANDS DOWN!

I was telling Aunt Honey about how Shalon makes her own hospital gowns and how it would be so fun and a lot more comfortable for Gabi than wearing the hospitals old gowns.

She took it upon herself (while in the process of a cross country move) to make her nieces treatments a little more manageable.

She even made the pocket on the front large enough to slide the heart monitors through!

GENIUS!

Thank You Aunt Honey!

We love you so much!

*Treatment 14 scheduled for December 7.