Gabi's Angel Kiss

Gabi's words

2011-11-06T12:19:00.000-08:00

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

2011-10-04T09:41:00.000-07:00

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

2011-08-21T19:48:00.000-07:00

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

2011-06-23T14:55:00.001-07:00

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.

Sweedish Medical Center

2011-05-15T14:43:00.000-07:00

This last trip to Colorado was a bit different than it has been. We weren't able to keep our scheduled appointment for May 2 because of some work conflicts with Ben, so we had to move it up to April 21. It was nice to get it done sooner and have a larger break in before the next, but it was still a pain as always.

After the long drive and backache we were to our hotel. Gabi requested of course for a night of swimming. So that is exactly what we did.

Preparing for a second entrance into the pool.

Fancy walk and wave around the pool.

Picture with her swimming partner and daddy.

Swimmer

Perfecting her backstroke.

After an hour of swimming we ate some dinner and got ready for bed. The next morning was upon us before we knew it. I was wanting to ask the doctor some questions that I really wanted answered. I feel like any time I ask a question I get the same round about general answer, that doesn't answer my very specific question. I had a plan that I was going to dig until I got an answer, good or bad; and that it exactly what happened.

Gabi waited very patiently and calmly as she was admitted and waited for the long process of paper work and meeting with everyone before treatment. She's been understanding her treatments a bit more each time and she really has a special way of preparing herself for each one. I try my best to help her feel comfortable and at peace, I try to calm her fears, but my tactics are nothing to her sheer faith and determination. She truly is the one that makes Ben and I feel better, not the other way around.

This treatment was unique in how she decided to change her thoughts and behaviors to cope better with the process. We went back into radiology where we always go for sedation and treatment. She asked my to wrap her in a blanket and hold her while I put the mask on. The Anesthesiologist asked her if she wanted to go to sleep slow or fast, She got a bit upset and said, "FAST!" She grabbed the mask and held it to her own face and began to cry. She held the mask tightly until she was overcome with the gases and fell asleep. I was a wreck! I have never cried so hard when we have done this is the past. I am the one that holds her hands down as she tries to fight the mask, I am the one who holds the mask tightly to her face as she looks at me with those pleading eyes to stop, I am the one who tries to reassure her that everything will be okay. I hate it. This time I felt like she even wanted to take that pain from me when I feel like I am betraying her for holding the mask until she can fight no more. Gabi is so strong and has so much courage. I cried for hours thinking of her holding that mask to her face, she knowing there was no other way to be done with these treatments than to go through the darkness into sedation each time. It's frightening for her, and she's so scared each time. She has so much power over her fears and I wish that I could express it better.

After her treatment we received a call from Dr. Yakes that she was out of treatment and going into recovery. I had Ben try to get as much information as her could about her progress, and anything. As Ben grilled him on the phone we got some news, and not the kind we were hoping for. Sometimes the information you want the most and fight for the hardest is going to be the one you don't want to hear. Dr. Yakes informed us that Gabi has two birthmarks, one on the upper cheek and the other on the lower. These two entangle themselves causing it to look like one. He informed us that the one is a more aggressive form of a Venous Malformation called a Globalmagioma. This one is putting up a great fight and is growing as fast if not faster than we have been able to treat it. This means that her treatment this time and from here on out will all have to be at a much greater level of aggressiveness. She received 16ml of alcohol, which is 6ml greater than she has ever received. The only good side to this information is that she is growing bigger and getting older, allowing her to be able to receive greater amounts of alcohol without receiving alcohol poisoning. It was hard to hear, but I am glad that we at least know what we are looking at. It's hard to have blind hope of an end when there is no real vision of that light at the tunnels end. We still can't see that light but we have hope that we will in time.

Gabi recovered very well and is doing great.

Twenty-One

2011-04-03T17:07:00.001-07:00

As we continue to complete treatment after treatment, I feel exhausted and hopeless at times, but I find myself not allowing myself to stay in that state for long. Even though this is a hard trial at this time in our lives as a family, and especially for Gabi, I know it won't burden her forever. We have been blessed in so many ways with Gabi, and with her recovery. There are still many conditions, and diseases that cannot be cured by medicine, and some that cannot be cured or healed on this Earth or in this life. Gabi has been blessed with this "happy" challenge, a curable form of a venous malformation. Gabi has been blessed with an amazing personality and testimony in her purpose in this life. She continues to love life, to see the good in all, and to have faith in her parents, and doctors, and especially in her brother Jesus Christ. To be able to express the courage and strength she has I will mention some experiences that we have had with her. We began these treatments when she was only 8 months old. She was a baby; a nursing, happy, chubby, baby. After her first treatment I lost my milk because she couldn't nurse for 48 hours. I tried pumping, but to no avail. I felt horrible that I couldn't give her that comfort and that necessary nourishment. It was a hard time for Ben and I as we considered whether this was worth the pain and sadness we felt we were causing an innocent, vulnerable, and trusting child at such a young age. Through much prayer and tears we knew there was no other way. The risks were too great if we left her birthmark untreated. As we took her to treatment after treatment we felt like we were tricking her, she trusted us with everything as we were her parents, and each time she would come into recovery I felt like I was lying to her. I didn't want to say anything about the treatments, just show up pretend nothing was going to happen and then I would go into recovery mode to help her heal as quickly and as comfortably as possible as soon as she was out of surgery. What has always amazed me is that she has never once been angry or upset at Ben or I for taking her. I know that our children understand that we as parents truly are doing our best to protect them and to love them with everything that we are. As Gabi started getting older and being able to catch the pattern of what happens when we go to Colorado, what happens when we stay at the specific hotel, what happens when we wake her early in the morning, what happens when we take the very quiet drive in the dark to the hotel, what happens when she is surrounded by nurses and doctors, what happens when we go into the cold room, what happens when she awakes in pain and confusion in recovery, she began to understand that this isn't going away. She has always been a very cheerful and excited child and I know she was born with her spirit to comfort us and to give us strength to endure this trial with her. As we would make these drives to the hospital in the early morning hours when she was about 18moths-2yrs, I would sit next to her in the back seat as I always do. One specific time I remember looking at her, holding her hand telling her that I loved her and that this would soon be over. I remember looking into those toddler eyes in the moonlight seeing tears dripping off her tiny cheeks. There was no whimpering, or crying, she wasn't squeezing my hand, or looking scared or angry, just tears running down those little cheeks. The strength it must take an adult to understand to to react in that way in a similar situation would be hard. But to be the parent watching your baby was unimaginable. I know that she has her angels with her, I know that with little children the veil is so thin, I know that she understands in some depth of her soul her purpose and her trial that she has accepted for this life. She is a testimony to our family of patience, long-suffering, faith, hope, and enduring faithfully to the end. I know that we have only finished the twenty-first treatment and we have no knowledge of the end yet, but with Gabi's strength and example to us we will finish and be done one day. At that day I know that I will be able to look back and see how much we have grown through each and every treatment, and each and every trial that has come with it.

And in the end our courageous and silly Gabrielle will be there, still smiling, still enjoying every minute of her exciting life.

We've hit the 20th

2011-02-24T08:37:00.003-08:00

Ten treatments ago we were hoping we were about half way through the treatments and we would be finishing up around treatment #20. So, here we are, #20, and I wish we knew more. I wish we had a better idea of how far we've come, and how much more to do, but we don't.

It's a hard thing; not only on Gabi or me, but our entire family. It requires a lot of help for others to be able to complete each one. It's exhausting. It's long and hard. Gabi seems to be doing very well with continuing to return with no idea of when she'll be done. I, on the other-hand am losing energy and effort. I question what we are doing frequently, but know we have no other option. We know we have to do this, it's just so hard.

At the end of January we headed out again on the long drive. We made it to our hotel in record time. The traffic was fantastic until we hit the ski cities and all the commuting skiers. That's when we hit a traffic jam right before the Eisenhower Tunnel. We had to wait 40 min to venture through because of the high levels of carbon monoxide in the tunnel. They have huge air blowers to keep the tunnel clear, and because of the high volume of cars passing through they had to control the amount of cars by interval.

We decided to try out a new hotel this time. The Residence Inn. It has a kitchen, two bathrooms, and two double beds in separate rooms. It was nice, or it would have been if it wasn't built in 1930 and still contained the same furnace from 1930. During the first night the temperature dropped to 60 degrees. We thought that wasn't very cool until the next night when we woke up and the temperature was 54 degrees. I am sorry but that is a bit cold for a little girl who just had a treatment. Rude, and you know what they did when we mentioned/complained about it. "We'll add some extra points on your loyalty card." That did NOT make me feel better. Also, they were to serve dinner (egg rolls to be specific) and when I arrived it was bean soup, from a tin can.

Besides all the bad at this hotel, it was nice to have 2 TVs, one for Ben and one for Gabi. We put her hair back the night before so it wouldn't come back plastered in blood like the last few times, watched some Disney movie, and she was peacefully out for the night. She slept very well considering the anxiety, fear, and emotions that I know she carries with her.

The following morning was as it always is, early. With the same routine at the hospital, a lot of waiting. She was in treatment around 8am and out about an hour and a half later. I had asked Dr. Yakes to ease up on her a bit from last time. I told him how bad she had blistered and was not comfortable with the size of the open wound. He did as I asked and she didn't receive any blisters.

She wore her new gown from Aunt Honey (Angi), and loved it. It makes a tremendous difference to have your own clothes, it is much more comfortable for her and it calms her from the moment we enter the hospital. They always have a gown and socks on her bed when we arrive and they ask her to change into it. She is always very vocal to them and lets them know she will not be using their boy stuff (the children's gowns are spaceships and aliens), she has her own.

The treatment went well, and she was in recovery for a short period of time, and required no pain meds and only blow-by oxygen until her Oropharyngeal airway was removed from her throat, which is when she wakes up a bit. She recovered comfortably and quickly in post-op and was anxious to leave the hospital. We went back to the hotel and laid down for the rest of the day. Ben ran the green juice errand and got her chicken nuggets as requested. Her favorite thing to eat back at the hotel is green juice, chicken nuggets (from chick-fil-a), and waffle fries, which she always receives on request.

The weather was a bit cold and moist so we waited until 6:30am to leave so that there was some daylight and possibly some heat once we reached the mountain pass. As we entered into the higher elevations we were pleased to find some new wildlife we haven't seen on these trips. This big horned sheep was gracing us with his presence right on the side of the road.

Once we reached the top on the west side of the tunnel we were in a new land. The hills were covered in snow and the roads had been plowed with snow banks on the side reaching easily over 6 feet high. It was a gorgeous drive as always.

We returned home safely, picked up Izze from Grandma and Grandpa Dahl's, but we didn't leave without our bellies full of a wonderful homemade roast dinner. Gabi and Izze got back into routine pretty quickly and Gabi went to school Wednesday morning. We decided on the steroids again for swelling. They make such big difference in her swelling! Her eye never swelled shut, but with the drug we have to endure a very grumpy and emotional Gabi. It's hard to see he in pain, it's hard to see her swollen, I guess it's just a choice.

Is it really only #19?

2011-01-13T19:07:00.000-08:00

I truly feel that our lives run in time from treatment to treatment. I always think to myself things like, "I will start that after the next treatment." Or, "I need to get that done before the next treatment." They are a measurement of time, like months, or years. I set new goals or resolutions after each treatment trying to make our life in between treatments most efficient and enjoyable. I feel like I want to be able to fit everything in and be able to take care of everything despite our trips.

As usual we took off Sunday (December 5) morning. We dropped Izze off at Grandma and Grandpa Dahl's house with her suit case and "comfy cosies." (blanket, nightie, baby,...) Then we were out on the road, the long, long road to Englewood, Co.

Our first landmark this trip was a Golden Eagle. It was in Spanish Fork Canyon devouring the carcass of a deer on the side of the road. Once Ben pulled over so I could get a picture it took off in flight in a hurry! My lens doesn't have a large enough zoom to sneak up on this type of predator. It was cool to see anyways.

As we drive the long drive we try to set check points, or find land marks to hopefully pass the time. It usually ends up with Ben and I squirming and fidgeting for excitement while Gabi calmly entertains her self with her bucket of goodies and entertainment. She is definitely a much better traveler than her father and I! Even with bathroom breaks, Ben and I are crying to stop, and she never complains, ever.

Once through Spanish Fork Canyon we set our next check point; Wellington. This is a comical story. It all began back in October/November when a man was giving a talk in church and was telling the story of when he would travel though Wellington on a very regular basis, and while traveling frequently for work through this town he would consistently be pulled over for speeding. You see, the speed limit through Spanish Fork Canyon is 60mph (approx.) and as you round the bend you enter Price, where the speed limit is still 55-60mph (approx.). What happens to the road next is what will kill you if you don't pay attention. In the mans talk he said that he quickly learned to NEVER speed through Wellington because they will ALWAYS and I don't mean most of the time, I mean ALWAYS get you. So there we were driving through Price and into Wellington, I was on the phone and Ben just received a text and was trying to get me to read and respond to it. While that situation was going on we passed the Price/Wellington border speed limit sign. Which goes from 55mph to 35mph. The next thing that happened is I saw an officer on the left-hand side of the road with his speed gun out. We knew we were goners. Even though he was going 49 ( because it is a very natural reaction to slow down while entering Wellington, if you've ever traveled through) it wasn't enough to slide by those officers.

Gabi, was not impressed by the whole turn of events in Wellington, if fact she was slightly afraid that the officer might take her dad in cuffs, and lock him in the slammer. Once I assured her that would not happen she sat in silence waiting to get back on the road.

After the unnecessary loss of time in Wellington, Ben felt it would be a frivolous waste of time to stop at our next check point, the border of Utah and Colorado. So I had to quickly scramble to the back of the car, dig through the luggage, find the camera bag, lunge back to the front seat, whip out the camera and snap this odd photo of the border sign, with who knows who standing at the sign. Oh, yes, and me in the side mirror, just glamorous.

Because I put up a big fuss about him not stopping at the border sign he thought it would be funny to do the same at the following check point, Eisenhower Tunnel. Luckily I know Ben better than he thinks I do, possibly better than he knows himself. So this time, I was prepared and got a better shot. Also, I thought it was quite interesting at the elevation this tunnel is at. 11,150ft. I believe that is about the same height at Mt. Timpanogos.

On the other side of the Continental Divide, or tunnel, there was this awesome ice formation. Could help but snap a photo!

***

As the schedule goes we checked into the hotel, ate some dinner, went shopping, and swimming, then off to bed. Monday morning comes early each time, and this Monday was no exception. We have made this trip so many times it's becoming second nature to know exactly what we do at what time and who does it. I will get ready and then wake up Ben, who then starts getting ready while I pack the hospital day bag. When he is ready he takes the bag and other necessary items to the car to warm it up and pull it to the front doors of the hotel. I put on Gabi's warm socks, say a prayer with her, wrap her in her blanket and carry her to the car on her pillow. Then it's on to Swedish Medical Center. We are admitted between 5-5:30am. We wait in pre-op while the nurses prepare all their paperwork, we say a quick "Hi" to the anesthesiologist and Dr. Yakes

An average dose of ethanol that she receives each treatment is around 5-7ml. When I was allowed into her recovery bay I knew she had received much more, by the swelling that was already apparent. After talking to the nurse she looked at her chart and confirmed that she did in fact receive much more, 10ml. That may not seem like much difference, but it is. I knew there would be a long recovery ahead after this treatment. She already had blisters forming in her mouth and on her cheek. I was worried about scaring, infection, *sigh*, ugh..... She recovered her vitals quickly to normal. I spoke with the P.A. about the best option for Gabi's recovery considering her current circumstance. We decided on Orapred ODT (a desolvable steroid) for swelling, and Motrin for pain. When we got to the hotel her blisters when growing and looking very sore. I was a bit concerned. Over night she popped the blisters on her lips and cheek from moving around while sleeping. I happened to bring along some of her prescribed Silvadine (from a previous treatment) and applied some to her cheek blister. During the drive home her blister was dripping and dripping clear fluid ( a good sign compared to pussy dark fluid). She went through 3 boxes of tissues and I felt horrible because she was so worried about not having control over it. We were very consistent on giving her her medications on time and she was very good to take them. I believe this helped with her quick healing.

The weather on the way to Colorado was very fair. The way home, was another story. This was on the flip side of the Eisenhower Tunnel Tuesday morning. These roads are very steep and very dangerous without snow and ice. When you factor semi's, snow, ice, mindless drivers and steep grades I believe we were all lucky drivers on that road to have not been in any accident.

Even though the roads were not perfect travel conditions, it did make for some beautiful scenery.

Gabi is a trooper. She watched movie after movie during the ride home. Her swelling was so much so that she was only able to eat and drink through her syringe. Luckily before we left the hospital I asked for their largest empty syringes, so she was set up.

Gabi is a testament of the resilience of children. She continues on without complaint of having a dry mouth, pain, uncontrolled drooling, one eye swollen shut (for days), not being able to eat the foods she wants to, and list of course goes on and on. Instead, she is so grateful and excited about when her eye opens, and when she can eat what she wants, and when she can stop drooling and close her lips. She is so excited when she reaches those benchmarks during her recovery each time it's like it's her first time being able to do it. She was more excited about her eye opening and her lips touching than when she learned to tie her shoe by herself or zip or button a jacket.

As she would lie there watching her movie I would fill her syringes to her hearts content of whatever she wanted in them. Ben gave her a new idea when we stopped at Wendy's on the way home, ice cream. We let it set and melt a bit and then we sucked that frozen goodness into her syringes. She loved that idea from dad so much that it carried into the days following.

She got tired of me trying to feed her through the syringe that she took it into her own hands, I was doing it all wrong I guess.

The final checkpoint of the trip are always the windmills at the mouth of Spanish Fork Canyon. I finally feel like we haven't been driving forever because we are nearly home to our comfortable home and family.

For the following day or so Gabi milked the ice cream and got every kind she wanted, for whatever meal she wanted. She typically ate every meal very well before she asked for ice cream, making it much easier to say yes.

We kept her syringes full of all the many liquids she loves, including green juice and water. Thursday afternoon I decided that it would be to her best interest if I had her open oozing blister looked at by her pediatrician, and they agreed as soon as they saw her. She was then prescribed an antibiotic in case of infection. Her blister was 2in in diameter and very tender and sore from the swelling and ethanol. They also prescribed her bactoban to help the healing of the blister.

She was great to take all her medication and allow me to put on her topical ointments, and by the end of a weeks time her swelling was all but gone and the blister had scabbed over and was mostly healed. She truly is a little miracle.

Treatment #18

2010-10-03T19:45:00.001-07:00

At the end of August we headed out on the road again to Colorado for treatment #19. We left early enough to watch the Broncos Game...on TV, get in a little shopping, some good food, and of course swimming before going to bed. The drive felt a lot shorter this time. I think we are on such a roll with the treatments that we have our stops/breaks down. Grandma and Grandpa Dahl watched Izze as usual and she had a lot of fun eith them. They are so great to watch her and make her feel more stable and comfortable. I know I have said this, but I will always say it because it's true. We couldn't do it without them and without all the support from our friends and family. Thank You guys so much! Even if you don't know it, you are a strength to us when we are weak.

The treatment went well. Dr. Yakes gave her 6ml of Ethanol which was a tolerable dose for her recovery. She didn't have any scabs or scaring this time! Oh do we love that!

One more down, ___ to go!

Here we go again...

2010-08-07T14:25:00.001-07:00

Here we go again...

I don't know exactly how to explain my thoughts and feeling about these, trips? adventures?...not sure what to call these excursions.

Sunday morning consists of a lot of driving and emotions.

Nervous for the drive, anticipation for the treatment, sadness for leaving Izze, excited to complete another treatment and have the possibility of hearing something to the effect of "You're almost done."

We have checkpoints on the drive. The first one, the entrance of Spanish Fork Canyon with all it's windmills. It's the beginning of a LONG dangerous drive. I am not a very good road-tripper. I think I have become a weenie in the last couple of years. I used to hate flying, and I have never really liked driving, I get too anxious and fidgety. I want to get out of the car, and I am sure that everyone else does too. You would NEVER know with Gabi though. She is the perfect traveling child. She is a little angel when it comes to flying or driving anywhere.

Once we make the entrance into the canyon it's a very long road with not much to see until our second major checkpoint, the Eisenhower Tunnel. A mile long tunnel through the center of the Rockie Mountains. It is great when we get there and pretty spectacular too. A few things to notice when nearing the tunnel: while driving up through Glenwood canyon (gorgeous by-the-way!) all the kayakers are going west towards the Pacific Ocean. While driving through the tunnel there is a sign that reads, "Continental Divide".

(the mountain the tunnel goes through)

On the other side of the tunnel you will notice that the rivers are are then flowing to the east. Pretty fascinating.

Like I said, Gabi is an awesome traveler, not a moan or groan EVER.

This is her while driving through the Eisenhower tunnel.

The rest of the drive is pretty entertaining and beautiful. Here's a train we passed.

And an interesting tree.

Once into Denver we made our usual stop at the Build-a-Bear Workshop, Gabi's choice of fun while there. Hit a local eatery, watched some tiny-bopper shows, and hit the memory foam ;)

Gabi asked Ben for a blessing before bed and also before we left the hospital in the morning. I was so proud of her for understanding that her dad can serve her in these ways and that these blessings are for her use. It was a great opportunity for Ben also, really for all of us. It really helps take the anxiety and nerves out of us so that we can accomplish what needs to be done and have the faith and confidence that His will, will be done.

Gabi usually screams and fights quite a bit while I hold the mask over her mouth so she can sleep. This time she whimpered and held onto me and just had tears running down her cheeks. She gave up the fight. She knew what was happening and she tried to make it easier on me. I just held her tight and told her how brave she was and how much I loved her and everyone else loved her and that it would all be over soon. I told her I would be there right when she woke up and she fell asleep.

I will tell you, no matter how many times you go through this the knot in your throat NEVER goes away. It is just hard to see these little innocent children have to be so courageous.

The treatment went well. 6ml Ethanol injected into 4 different sites.

We got her through recovery and back to the hospital. She was exhausted and slept all afternoon and all night. We left early the next morning around 5am.

She never loses her personality, not even in pain, or uncomfortable situations.

She is our little darling, legs crossed and all.

Gabi you are our hero! We love you!

17 Down!

NUMBER SIXTEEN

2010-06-23T07:07:00.001-07:00

NUMBER SIXTEEN

I feel so unsure. I feel like these treatments keep coming sooner and sooner, and that the break and time in between keeps getting shorter and shorter. On a calendar, it's all the same but for our emotions, it's hitting a little sooner and harder each time.

Gabi's treatment this time was about the same as the past ones. We asked Dr. Yakes to take it a bit easier on her this time because of the deep scars she received after the last one. He listened to us and it made the treatment and recovery a whole lot better to endure.

She was up and at 'em playing with friends when we arrived back home from the drive through the Rockies.

She is recovered and getting ready for round 17 in July.

We love you Gabi.

HOPE

2010-04-14T20:30:00.001-07:00

Hey Ashley!

Totally understand. I get it 100%. And absolutely no reaon to apologize for venting. As you said, who better to understand than me?!?!? You can't understand unles you live this. Family and friends love us absolutely, but they don't get it unless they make those trips to Denver and experience this first hand. So feel free to email me whenever you need. Seriously.

And this email is going to turn into one of those long winded one's for sure. I'm a wordy girl and don't know how to edit! :)

So in general here is what I think is the reason for the silence- It's hard to give updates because people take them as absolutes. It's hard not to! And the fact that the AVM/VM is constantly growing and changing makes it hard to project an end date or even come up with the % until you ARE close to the end. You could say 50% now and then in 8 weeks the beast could have had a very active spurt and set you back to 30% or whatever. Because it isn't static...It almost seems like a "guess" to give updates that way. Also I think with kids it is harder because THEY are growing as well and this can absolutely impact the growth of the VM.

I'm sure he has probably gotten burned in some way by expectations he inadvertenly gave people. Maybe he has just recognized that it's better for people to not know the status, than to think they are close only to have to backtrack. You know what I mean? That could be devestating. Even with some of the people that are "done" the end totally dragged out. Allison from Alaska, the Amazon supermodel went probably 4-5 more times with the "this might be the last one" but kept ending up with "come see us again next month." Just that was frustrating and I can imagine how people internalize and grab onto a date or a progress status earlier and would be very disappointed. Is it better to be in the dark? I don't know the answer to that but it seems like Yakes has decided through experience that this helps with the emotional and psychological aspect.

Having said all of that, it does totally suck to be in the dark. I won't argue that at all. It's hard to keep going back all the time and torturing ourselves (or your child!) when you don't know if it is working. I can see how that can be as emotionally devestating as getting a false hope status update. For me, I think the difference is that I am an adult, I "know" my AVM and can tell when progress is happening. Gabi doesn't have the ability or the understanding to do this yet, and you can't because you aren't part of her physical body. It's gotta be extremely difficult for you. I know that my mom never felt like she understood any of this when I was a child and having crazy bleeds and 7 hour long embolizations. And there was so much less info out there back then. I don't know if that is worse or better. She had no choice but to trust the docs and go with that. She couldn't really research who else could treat these or if this was the right treatment, etc. So she didn't second guess as much as people might now. Again, which is better I don't know.

I absolutely could tell when it is getting better. First of all, the pain went away. I'd been having sharp and awful pain in certain areas. I was taking tylenol like candy. Couldn't tell you the last time I had pain from this outside of treatment pain. It just doesn't happen anymore. The size also went down. I could see it shriveling up. All the metal in my face became more apparent as the swelling decreased and the skin and tissue contoured around my coils. Nice bumpy appearance for sure, but a good sign. Other areas swelled some and I also knew that was a sign it was "moving" and trying to recoup from the damage of the alcohol. But it was recouping much less than we were damaging. I could see that we were winning. I wasn't having as many scary bleeds. I've had very few in the last year and they have all been "less" blood and less forceful. Easy to stop and didn't keep rebleeding. All good signs. Of course the most telling sign for me is that I used to actually be able to see my face pulsing from the blood. And I could easily find the "thrill" under my chin and along my neck to FEEL the blood wooshing though. When that started to decrease I knew we were making progress. When I could hardly find that thrill anymore I became more confident that this was actually happening and not just a "hope" that I had. Accepting progress was actually hard for me. I'm optimistic for sure, but also very conservative and cautious to believe the progress. I don't want to give myself false hopes! And having lived with this for 30 something years and the info I got as a child...honestly I had a hard time believing that this really ever could be gone. I still do! But I see the difference, I feel the difference, and I know it is getting better. Will it ever be "cured" I don't know. I guess I can't let myself really believe that through some sort of self preservation mechanism. But I totally HOPE I will be cured.

I know that was long winded and really didn't necessarily answer some of your questions. And I guess it boils down to- Yes it sucks to not know, but would you rather be taken on the rollercoaster of changing percentages? However, because you are so focused and feeling so unsure at this point- ask them. Tell them your concerns and your emotional state with this. Ask for what signs to look for, or how else to put your mind at ease. You may not get exactly a "hard" status but you may get enough to feel better. I do know that Yakes doesn't want families to be emotionally distraught any more than they have to be. And if his silence with all it's good intentions is backfiring, well maybe he could change his approach with you guys. Plus the fact that Gabi can't give you guys any real feedback on this...you don't have the same insight as some of the older patients. He may be more willing to talk about the progress and status because of this. Contact Kelly and talk with her first. She maybe able to help or even just coax some info out of Yakes.

My husband did "push" a couple of times for more info on the "she did well, we are making progress, she is in recovery" calls, and would get tiny little tidbits from him. And those did help. The first time he told Josh that I was getting closer to the end, Josh totally said "I know I'm not supposed to really ask, but do you think you could estimate how close?" And Yakes did hesitantly tell him "well probably about 80%." And we went with that knowing that I couldn't calculate out 20% more trips down to an actual # and that we couldn't come up with a specific month I would be done. But hearing 80% was a huge relief for us.

As far as some of your other questions- here we go :)

I get a varied amount of alcohol. Have had as little as 3cc's and as high as 33cc's. It seems that a "normal" range for me was more in the 12-15 range. Of course the alcohol is based on the size of the patient. There is some actual calculation using the weight but I don't remember what it is. This could have a huge impact on how quickly he is able to treat different patients. If he has to do a ton of much smaller ones on Gabi, and she goes less often than I do...well then I'm going to be done so much faster just based on the size and frequency of the treatments. And that could totally wear you guys down. Definately would be something I would ask them about. Get a better understanding of the overall picture and timetable based on ability to treat and length between.

And yes, I've had it caused blisters and some little wounds and scars on the surface. Not too often, but it has happened. It absolutely has to do with how superficial those vessels are. The closer to the skin the more chance of damaging that tissue. Mine is both deep and superficial but much deeper in general I beleive than Gabi's. I don't have too much discloration visible so that's why it isn't really an indicator for me either of progress.

And actually, I often feel "fine" after treatment. I hardly ever take the pain pills and normally just feel generally tired and gross from the swelling and drooling and such. For Gabi I would assume that she can't rationalize and seperate the real pain from all of those other parts mixed in. I don't know but it's prob worse for her regardless. She doesn't want to do any of it, can't rationalize the benefit of this, and just hates to feel yucky. Totally understandable! It's hard for the kiddos. I do know that.

However having been "tortured" as a child as well... I really don't remember much of it. I remember being at the hospital. I DO remember the fear of anesthesia and of the IV, and I remember worrying about bleeding in general. But otherwise, no bad memories. No vivid memories. I have more memories of the toys I got as treats than of what actually happened at the hospital! I think my mom was MUCH more traumatized than I was. And I was actually older than Gabi for most of this. So as much as it may sound weird to say...I doubt she is going to remember much of this later in life. She will probably have more "memories" based on the stories she hears about what happened to her, than actual memories. It totally sucks now, but she should be better off not having to worry about her VM a few years from now. It will all "just" be stories but nothing much to worry about.

I don't know what to say about the trauma of anesthesia each time. I actually used to get very sick afterwards and would take ANYTHING they gave me before hand to avoid throwing up post op. Most of the time I couldn't avoid it. I have no words of wisdom for helping on that part. I imagine she would be happier if she took the versed. But ya, try reasoning with a 3 year old, right? I know that one of the moms I talked with a lot would always get right beside Camellia and whisper a soothing story in her ear as they prepped her. Even that, she still fought the mask most of the time. I don't think there is any answer for it. I remember they used to let me take my doll in with me and would give her a mask too. Helped distract me. But I don't know that it made it any easier for anyone. And again, this is probably WAY more traumatizing for you than it actually is for her. She knows she doesn't want to do it and she is scared, but it's only for a few minutes. That sounds awful to say! I wonder how much she actually remembers about right before anesthesia...I have total short term memory on everything that happens in the RAD room and I think I'm awake much longer than she is. I have to keep apologizing to the nurses and rad techs cause I just can't remember their names. And they always brush me off and tell me it's just part of the anesthesia. So maybe the fact that she doesn't remember that part of the treatment helps to make it easier for you? Prob not.

I hope this has helped some. If at least just given you some more info about adult memories of doing this as a child. But really, the only thing I can say is that I am convinced this is the right treatment for me and that I absolutely encourage parents to have their kids treated young to avoid some of the unfortunate situations that I dealt with growing up. It's wasn't all bad for me. I did have a happy childhood. But it would have been easier if I didn't have to worry about the AVM, if my face wasn't changing and looked different enough for the stares and comments, if I didn't have to "deal" with any of this. Avoiding these things can have a huge impact on your child. I know some other adults who had such worse experiences growing up than I did. Who were traumatized, teased, felt isolated and outcasted. I feel absolutely blessed that I didn't have those issues or didn't let them affect me somehow. I can still see the effects of all of this on some of those people now. And THAT is one of the reasons that I feel so strongly about other girls being able to avoid it. Sure it sucks now, and it's painful and unhappy. But in the grand scheme of things, will this torture be so much less than the torture experienced gorwing up "different?" I think so.

Sorry for the incredibly long email. I warned you! :) Again, I hope this helps in some way. And please feel free to ask me anything. Also, def contact Kelly. I think she can help you get some information or answers that will keep you feeling a little more "in the loop" than you do currently. Anything is better than nothing, right?

Good luck!
Shalon

A letter to Shalon

2010-04-13T22:05:00.000-07:00

Shalon,

Gabi (3) just had her 15th treatment, we go about every 7-8 weeks because of how long it takes her to get back into her routine and feeling comfortable around everyone and it's just so hard with her VM on her face. I know you understand. Every time we see Dr. Yakes he will never tell us anything. We have no idea how treatment is going other than when he calls us when she is in recovery to say everything went well and she's good. What is that supposed to mean? When does he let you know you are almost done? How do you get answers out of him?

Here's a random question, how many cc's of alcohol does he inject each treatment on you? Does the alcohol burn through you skin and scar? How do you feel afterwards? I don't know what to think, or do, or say to my 3 year old. She has been doing these treatments since she was 8 months old! Can you tell a difference, or a lessening of the malformation some how after treatments, or now? Like to the touch it feels different, or the color is fading, or anything? Is there anything that I can see to try and figure out how close we are to the end? I HATE forcing my baby under anesthesia EVERY treamtment, she wont take versed to calm her, nothing, she just fights and it is killing me. If I knew anything of progress I could keep doing it, but it is so hard when no one gives us any answers of any type. Am I doing the right thing....I don't know.

Thanks,

Ashley

***

Sometimes I just can't handle not knowing what next. I feel like I want all the answers. I wish I knew WHY? How can I make it easier on her? What can I say to get an answer from some one? AHHHHHHHHHH! When will she be done? WHEN????

Fifteen AGAIN

2010-04-07T10:15:00.001-07:00

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

2010-02-06T14:47:00.001-08:00

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

2010-01-26T06:55:00.000-08:00

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

2010-01-24T10:31:00.001-08:00

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,

2009-12-19T20:07:00.001-08:00

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

2009-12-10T21:27:00.000-08:00

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

2009-11-05T06:11:00.000-08:00

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.

Treatment #13...and counting

2009-10-22T21:22:00.000-07:00

Gabi has been so great all these treatments on traveling to Colorado. We have flown every time, but decided that we would drive this time, just to try it out. Plus it is fall and we were hoping for some autumn leaves through the Rockies.

Our trip this time around started early Sunday morning, dropping Izze (little sis) off at Grandma and Grandpa's house. We immediately hit the road to Colorado.

Not before the typical Gabi poses for the camera and her fans!

...And then we were really off.

Gabi sat in the back seat and watched Word Factory and practiced letters in her preschool book, and before she knew it a few hours had passed and we stopped for some gas, a treat, and a potty break at the Maverick.

She watched the plains go by for a while before we pulled the car over to get a photo with Dad and the Colorado sign of course.

Once we made it into Colorado everything started getting beautiful. We drove next to the Colorado River for miles, and there were TONS of beautiful trees and leaves flying into the white capped river.

By 12:30pm we had made it to Rifle where we stopped to eat some lunch. Dad packed a camping meal, so he heated up the stove and boiled the water and made some surprisingly delicious Beef and Potato lunch.

While the food was cooking Gabi took to the pond to throw in some rocks and to stretch her legs a bit.

Lunch is served; and she ate it ALL up, even her second helping!

After playing around and getting an Oreo McFlurry, it was back to the road. The Mountain passes were gorgeous! We saw trains and awesome mountain formations, kayakers and road bikers. It was just amazing, and Gabi was content to look at it all for hours out the window.

We knew we were getting close when we hit the Eisenhower Tunnel. Once into Denver, we made our way straight to Englewood where we got a good dinner in our bellies and then hit the hotel for a quick night that would end early. 5am, and we were off to the hospital for treatment #13.

Gabi has done very well emotionally to handle these treatments, but as she has been getting older and understanding what it is that she is doing and why, it has been harder on her. She always asks her daddy for a blessing so that she will be strong and brave, and to bless the doctors and nurses that they will perform to their highest standard. There would be no way that we could go through this without prayer, without family, and without support from everyone around us.

This particular time at the hospital Gabi had a flood of questions for us. "Why is my birthmark growing?" "Why do I have to do this?" "Is this my last time?" Followed by many strong feelings about being there. "I am not coming again, this is my last time." "It is all better, I don't have to come back." "My doctor said I don't have to come again." As any parent could imagine my heart was heavy, and my eyes were wet. It is the innocent who suffer for us. It is the pure who endure such trials. Life is not fair. As Christ took our sins upon Him and died so that we may live, I am sure that His Father and ours was weeping, for it had to be done. I am sure Christ was feeling the same as Gabi and had the same questions, "Why?" "How long must I endure?" How Christ-like children are. How pure and innocent.

She put her brave face on and pushed right through her fears; of the hospital, the machines, the medicine, the unknown. She knows what is happening, and if it were up to her she would walk right out of the hospital and go home. But because she trusts her Mom and Dad and knows they would do nothing to ever hurt or harm her, she allows herself to put her whole trust in them and more importantly she puts her trust and her faith in the hands of her Father in Heaven. She knows that He will protect her, watch over her and heal her. Her faith is HUGE!

As a mother it kills me to see her fight every single time she is given anesthesia. I hold her in my arms and try to calm her at the same time I am holding the gas mask over her face. Her eyes pleading not to do this again. Her eyes close and we then leave her in the hands of her doctors and pray for her safety and recovery.

About an hour later we got a call from Dr. Yakes that she did great, and another treatment was successful in treating more areas. To see her time and time again in pain, and swollen to point she can't eat or see for days is gut wrenching.

This time while in Recovery, we overheard two of Dr. Yakes patients talking about how this was their last treatment. That they were DONE! How happy and excited I was to hear that someone was done. But at the same moment I was holding in my arms my little girl who has endured 13 treatments from the time she was 8 months old and we had no idea how many more we would have to do before we too could say, "WE ARE DONE!"

She is so sweet. She doesn't complain, and doesn't whine about "Why Me." She plainly asks if we can go home now so that she can play with, "My little Izze." She immediately thinks of others and not herself. She cares so much about her little sister. She adapts so quickly and effortlessly to things that would be so difficult to me. She will drink out of cups at crazy angles, eat with her off hand, run with one eye completely swollen shut, eat teeny tiny bites of things even when she is starving, because she simply can't fit a piece any larger in her mouth.

By the time she was discharged and the IV was taken out she insisted on putting her shoes on and walking out unassisted. She has the mentality that nothing and no one is going to get in the way of what she wants to, and, is GOING to do.

We headed back to the hotel for a bite to eat before bed. It was another early morning on Tuesday, we left at 5am and made it to Grandma and Grandpa's by 1pm to pick up Izze.

Another thing about Gabi that is amazing is her self confidence and her self-esteem. It is remarkable! I don't know of another child or person who would go to school, or dance class the day after a treatment like this. Not only would the rest of us (and I am sure Gabi included, she just wont show it) feel crappy, but she get so many questions, and stares...but she is proud to wear her birthmark; and completely happy to tell anyone who wants to know, all about it.