A special trip to Colorado

It was time to go back to Colorado again for treatment # 31 so we prepped for the journey in this extremely cold weather we have been having. Gabi had a swim meet Saturday the 12th and we were leaving the following morning. We have been planning since Christmas that we were going to go to the American Girl store the next time we went to Colorado. With this knowledge she told me that if she did her best we were going to buy her Ruthie, Kit's best friend. I told her that wasn't going to happen because she was too expensive for us to get for the occasion, but maybe she should ask Santa For Christmas. She seemed understanding and swam her best anyways and took off 3 seconds in her 50 yd Backstroke. At the end of the meet our sweet friends Stephanie and Courtney brought a gift for Gabi for her trip. There were 4 American Girl books, an American Girl game, and 10 wrapped gifts of some her favorite treats. 

Each one was wrapped separately and on the front of each one gave her a location to which she could open it, but first there was a game or activity that she had to complete before opening it. It helped her pass the time during the long drive.

 #1 was the big white windmills in Spanish Fork Canyon, she just had to spot them to open her first gift... Gummy bears!

 #2 was Wellington. She had to tell daddy-o to "SLOW DOWN" so he wouldn't be pulled over by "The Fuzz." 

 #3 was 30 miles outside of Wellington. She counted the mile markers for 30 miles, it ended up being mile marker 280. When we got out to take the picture we had to walk through 10 inches of snow and it was a balmy -2 degrees, who knows what it felt lie with the windchill! We quickly got back in the warm car. 

#4 was Green River. She had to guess what fruit is famous there and then find 5 semi-trucks.

 #5 half way to our final destination was Grand Junction. She had to find 2 gas stations, a McDonald's, a red, a white, and a blue car. We stopped for lunch but quickly got back on the road again. 

#6 she had to find a town that was named after a type of gun. We read all the cities names from Grand Junction to RIFLE! 

 #7 Gypsum. She finally fell asleep for a little nap and slept right through Gypsum, she woke up in Avon and she was ready for her gift but not before she said 3 nice things about everyone in the car. Dad- he cooks good food, plays with me, and is nice. Mom- loves me, cares for me, and teaches me things. Gabi- I'm happy, funny, and a good traveler. 

#8 ended up being only minutes later in Vail. She had to sing the ABC's and then let me take a picture of her making a funny face. 

 #9 Georgetown. We had to play a silly game of "I Spy" and of course Gabi won. 

 We got a special message from Stephanie that when we stopped at American Girl (#9.5) there was a special surprise waiting for her, but we had to find Ann P. After we found Ann she brought out a big bag and said it was just for Gabi. Inside was the biggest surprise anyone could have given a little girl! Her dream came true! Ruthie and all her accessories were inside! PLUS a purse for her doll and new hair supplies to do their hair. She didn't really believe they were hers. She couldn't understand why anyone would have bought them for HER. I had to explain to her how much she is loved by so many people and how special she is!! She kept saying, "Are you sure she is mine? She is like a thousand dollars!"  After assuring her that Ruthie was really hers she asked Ann if she could take her out of her box so she could hold her. She kept smiling and saying "They love me so much! I think Courtney really likes me!" I just kept reassuring her that all of it was true. She was so happy walking around the store holding onto her new doll. She wanted to then go find surprises for Izze and her babies back at home. She wanted to get something extra special for her for being so brave to stay at home and help take care of Violet. She found a double stroller just perfect to take her twins on a walk. She made sure that we got Ruthie a pair of pajamas so she would have something to sleep in at her sleepover with Kit in the hotel. 

After spending a while walking through the store amazed at all the beautiful things we went back to pick up dad for dinner. After dinner we hurried back to the hotel to change into our suits. But not before she put #10 in the fridge just like it said. Before she could open the last one she had to go have some fun swimming. We jumped into the freezing water and practiced swimming some breastroke for a while. After all the fun we got ready for bed and she cracked open her last gift of he evening ... Ice cold Root beer!

First thing Monday morning we went over to Swedish Medical Center and checked into Pre-op. Gabi had a cough after the meet on Saturday and I took her in to get some Decadron to help keep her airway open so we could still complete her treatment. The anesthesiologist wasn't convinced she was well enough for the treatment, but after a thorough check she decided that after a nebulizer treatment she would be alright.

She ended up waiting u tip 8:30 before she went in to her MRI. Before she chose her flavor to go in the mask she remember something the Stephanie had told her about when she goes under general anesthesia, and that is to think about what you want to dream about before and then start thinking about your dream as you go under anesthesia. She told me that she was going to have a tea party with Kit and Ruthie. What a great idea to help calm a little girls anxieties. She closed her eyes layer her head back on my arm and she fell fast asleep into her tea party dream. We received a call about 2 hours later from Dr. Yakes. He said that they were waking Gabi up and that it went well. He also said that "Her MRI looked much improved from previous studies." He gave her 17 ml of ethanol and she would be in recovery soon. It was awesome to hear him give us the good news about her MRI! I have never heard him excited to give us any news, and I could hear it in his voice how much he really believed it was "much better." I met Gabi back in recovery where they had given her a whole cocktail of anti-nausea medications and was soundly sleeping for the next 6 hours.

 It took her a bit to kick that anesthesia but she felt decent when she woke up. She wanted to watch a movie and eat some food and that's exactly what we did. 

She watched The Muppet's and ate some mashed potatoes and gravy and a grilled cheese sandwich. We went back to the hotel and she finished sleeping off the anesthesia for the rest of the night. Tuesday morning she had no blisters, her eyes were not swollen shut, and she could close her lips together! There were a lot of prayers and fasting and she was blessed! Thank you to everyone for your continuous support, care, concern, and especially your prayers in behalf of Gabi girl. 

Another one down and we can see a shimmer of light at the end of this very long tunnel we've been traveling through!

Lost count

The update from the last 3 treatments is all pretty good news. Since Gabi had the MRI in March we saw that her malformation of veins has significantly reduced. We still have a way to go, but we are making good progress. It's just not as fast as we would like it. Gabi is still as strong as ever! Every time we go to Colorado I am i impressed with her maturity. She is the model for the perfect patient, all the nurses love her and tell us how smart and adorable she is. She is very wise and will ask them how they are doing. She is so caring of others and so grateful for everyone around her. She makes sure that I let everyone know she is doing well and she has such an optimistic attitude about the progress in her recovery. She is excited when she can touch her lips together. She is excited about being able to play with Violet. She is excited to have both eyes open. She appreciates the smallest things that most of us take for granted. She only complains when something like pain or nausea becomes unbearable. This was the first treatment that she requested to order a meal in the hospital before she was discharged. It was funny to see her look at the menu and ask for the phone to order. Her order included, mashed potatoes and gravy, corn, green beans, chicken strips, and apple juice. She ate all of it! She is just amazing and I hope that I learn whatever it is that I am supposed to from this experience.

First pit stop at the "Best Truck Stop in the Nation" according to some TLC show...can't remember which one.

Violet was so excited to get out of her car seat! She was such a trooper staying in her car seat for hours and hours and hours. Poor thing! She is so sweet, I just hated having to put her back in so many times.  It ends up being driving in the van for pretty much 3 days straight, and then when we are not in the car it's the hospital or the hotel where we don't let her crawl around...horrible. 

Ben pretty much loves to drive and drive and drive....actually not, but I hate it too, so he ends up driving 80%-100% of the way.  It's OK though because he has a hard time trusting all the others on the road when I am driving so it gives him more peace to just drive himself.  I am good with that. 

 If driving to Colorado has taught me anything it's how to sleep in the car...FINALLY!! A talent I have been trying to learn for years!

Gabi has mastered the art of traveling.  She is very low maintenance while traveling.  All she needs is her music, Gatorade, a few snacks, and her tablet and she's good to go!  Also she can fall right asleep, no problem!

This treatment she received 11ml of alcohol.  Se felt quite well afterwards.  Enough to order her first lunch after a treatment.  She was so hungry she ordered chicken, potatoes and gravy, corn, green beans, Gatorade, apple juice, and a scoop of vanilla ice cream.  Oh and before her food arrived she requested a purple Popsicle.

Mandy is one of Gabi's P.A's and she absolutely loves her.  She thinks Mandy is the best!  She has the best nurses and doctors!  They take such good care of her.

Gabi was so excited when she woke up in recovery about being able to close her mouth and open her eyes.  She gives us all more courage, she is amazing!

We love you Gabi Girl!

New News

We just finished treatment #27.  This time around was a bit different in the fact that we took Baby Vi with us.  It was her first long road trip with us.  She was soooo good!  She is the baby you want to take on road trips.  Gabi was excited to have her little sis come along.  It helped ease her anxiety.  

We made decent time to our hotel.  Ben took Gabi swimming while Vi and I watched.  We all got to bed pretty early, our lives are on a bit different schedule with the baby now; but it was great.

Morning came early as usual but both girls were troopers.  It helped Gabi to have baby Vi there to take her mind off everything.  She was more concerned about holding her and loving her than what was coming.

I held her as I do each time she goes under general anesthesia.  She has been doing so well with it the past few treatments.  She just grits her teeth and squeezes my hand until she is overtaken by the drug and slips into a deep sleep.  Ben stayed back at the hotel with Violet while I stayed in recovery with Gabi.  The past few treatments have made Gabi pretty nauseous even into the next day.  It makes her sick and she's not able to hold much down.  We called the PA Kelly, and she got a prescription called in to a pharmacy along the way home.  Once we had her take some she was night and day better!

When Dr. Yakes was done with this treatment he gave us a call as he does each treatment to let us know how things went.  The conversation is pretty short, mostly, "She did great, I used X amount of alcohol, she'll be in recovery in 15 min."  That is about the extent of our conversation.  Well this time he added an exciting statement.  "I am having a difficult time finding areas to treat, I would like her to have an MRI next time."  That was so exciting for us to hear.  I know it's not much in the fact of knowing when or how much left, but that can only be good news...right??  Well I guess we will find out in another 6 weeks.

2 weeks after this treatment she drew this picture and wrote about her feeling.  It says, "I don't like Colorado because of the doctors.  They make my cheek big and fat."  

Oh how I long for the day we are DONE!

Gabi's words

I am the bravest girl of anyone. If anyone goes there to Colorado they won't be brave as me.  Gabi is the most brave girl on Earth.  I really like to be at Colorado cause I can go swimming and I love to go to the treatment.  I really wish that I can go swimming every day at Colorado.  It's so much fun to swim cause I can jump off of my dads shoulders.  I really like to do that, from Gabi, Gabi's Blog.

Twenty-Fifth

The 25th treatment was great.  The drive was long, hot, boring, and uncomfortable, but nonetheless we arrived without incident or injury.  I believe what made this treatment in my mind so tolerable is just comparing it to the prior two.  During her 23rd treatment she received 19ml of ethanol and during her 24th she received 16ml.  That was a TON!  Her recovery was long and hard for both those treatments.  During the 25th treatment, she received a significantly lower dose that for some reason I cannot for the life of me remember.  I believe it was somewhere around 8ml.  She had a bit of a rough time holding much down the day of treatment which was a bit out of the ordinary, but by the next morning she was feeling much better and back to her cheerful, and optimistic self.  All is well, all is well.

1000 miles and 1000 tears

I know that I am done when I am not counting anymore, and I have lost count.  I sure just hope that all this travel and pain is not in vain.  Gabi and Izze are such sweet girls.  They are both very strong, independent, and courageous little ladies.  This last treatment I really realized what a whiner I am.  I felt like I wanted to throw a tantrum more than once, and I look at my girls and see their brave and stalwart faces gritting their teeth and trudging forward with their responsibilities as strong women would do.  I want to give up.  I want to throw in the towel.  I want to bury my head under my pillow and pretend it's not happening.  I hate to pack.  I hate to know that I have to calm Izze's anxieties about us leaving again.  I hate feeling like I am lying to her. I hate to leave her.  I hate to pretend like everything is OK, and it's not that bad, and it's not that hard.  I hate to pack for something I don't want to do.  Isn't packing for trips and vacations?  I want to distance myself, and I feel like when I am not needed to be strong and when I have a moment to myself I mentally walk away from the situation.

Gabi starts here first day of Kindergarten tomorrow and I want to tell her so badly that it's a new beginning, a fresh start, no more treatments, a new chapter...but I can't.

She received 16ml of Ethanol this time.  She was terribly swollen and once the swelling in her eye went down she hasn't been able to close it without using her hand to do so.  It has been a challenge keeping drops and moisture in her eye.  She wants to be outside, playing with friends and enjoying summer, but when her cheek is all blistered and her eye can't close and is dry and red it just hard to be a kid and have fun.  Somehow, she keeps a smile on her face and a great attitude.  We have had to keep A ton of ointments and creams on her burns and drops and eye lubricants in her eyes.  I have had to tape her eye shut at night so she doesn't get severely dry eye and cause damage to her cornea.  She is down to two small, but deep scabs left to heal, and her eye still won't close but it probably won't for a while yet.

I know I keep saying it, but it truly is amazing how she can find good through it all.

Love you Gabs!  I hope you're done soon.  

2 days after treatment

5 Days after treatment

12 days after treatment

Trooper

Well, it's time again for another treatment post.  I believe we just finished up treatment #23.  

This time on the way to the hotel we stopped at the Denver Temple.  It was so nice to get out and stretch from the long drive and just sit for a while in front of the beautiful and peaceful temple.  Gabi enjoyed the fountain most of all.

Once we got to the hotel she of course persuaded everyone to the pool so she could get in a good swim.  She practiced her side breathing with freestyle and she is doing so awesome!  I can't believe how graceful she is in the water and her technique is so good for a five year old!  After she swam with Ben for over an hour practicing flips and tricks and jumping off Ben's shoulders and head she was ready for some food and relaxation.  We filled her belly, got her showered and dressed and then I turned on a movie for her while I painted her toes and braided her hair, just the way she likes it.  She soon fell fast asleep for the night.

Morning came quickly and we were to the hospital by 6am and the doctor was already waiting for us.  She was in treatment by 7am, a record!  I guess there was a patient that was going to be before her the had canceled, so we were able to sleep in a bit and get right into treatment.  I wish it happened that way more often!  She was so tough when we had to use the mask again.  She decided to choose a flavor this time so that it would smell a bit better, but I don't know that it helped much.  She woke up i recovery with me there an hour and a half later and she was in some pain.  She received 19ml of ethanol and she was feeling it.  They gave her some Phentenol and she fell right back to sleep.  It's always better with her the longer she can sleep off the anesthesia the better she recovers.  She spent two more hours sleeping before she ate and drank some.  When it was time to be discharged she took out her own IV again.  I think it is so crazy that she prefers to do it all.  The nurse just stands there with gauze and a Bandaid while Gabi does the rest.  She even pulls out the IV tubing in her hand and places the gauze on it to stop the bleeding.  She is just so amazing to me.

We left the hospital in good spirits, although we knew there was going to be a whole ton of swelling with that much ethanol.  We were prepared and she does so well taking her Motrin and Prednizone jut as she is supposed to.  It makes such a difference in her recovery and I think she knows that now.  When we got back to the hospital she ate tons, drank tons, used the bathroom and then slept until 7pm.  She woke up to take some medicine, eat and drink more, and then she went right back to sleep until 6am when we were leaving to drive back home.  

She really is a trooper!  For her sake I hope she is done soon enough for her to keep her spirits high, and her confidence even higher.