Ashlyn's Make A Wish Journey- pre-trip- 1 (May, '12)

[Ashlyn May 2012]

First, I will explain Ashlyn’s medical condition and then try to create a picture of her amazing will and strength.

Ashlyn is a 14 year old with a spirit that can’t be contained

Our story began in February, 1998 when I received a phone call from a woman named Lisa who asked me, through tears, if my husband and I would adopt her daughter. After I stammered that I probably would but I would need to discuss it with my husband I asked her if there was anything we could do to help her keep her daughter.

The story tumbled out over the next several days. Ashlyn was born on 12/08/97 with all of the characteristics of CHARGE Syndrome plus several other issues. She had had a heart surgery with a vascular ring repair, a g-tube placed, a bowel malrotation repaired, was Deaf and had extremely large colobomas that resulted in her being legally Blind. She required regular suctioning through her nose, was not able to gain weight due to dumping and was so weak she could barely cry.

After many discussions with doctors there was a consensus that there was little that could be done for Ashlyn where she lived and that her best hope was to move to a state like MN where she could receive the care she needed. A doctor who was familiar with our family shared our contact information (pre HIPPA) and suggested we would possibly consider adopting Ashlyn if it was necessary.

My husband and I flew to meet them in March '98 with two of our kids. Ashlyn was so tiny; she looked like a baby Curious George When she grabbed onto our fingers we could sense her inner strength. When we put ourselves into her line of sight she would give us this look like that said “I am fighting- fight with me” and we knew that we would do whatever necessary to get her the care she needed.

I was put on bedrest in early May, just before Ashlyn was supposed to move to us so we all had to wait. We prayed for her to remain stable and called her biological family as soon as I went in to labor on 6/27 that she could come to us the next week. Ashlyn arrived on July 6th and immediately joined her new sister in a bassinet that they would share until Hannah outgrew it.

Within a week she had an abdominal surgery to repair her nissen. She was unable to gain weight and would literally go up 2 ounces and then down 1.5 ounces, up 4 ounces, down 3 ounces. Because of the dumping, she had and has chronic stomach pain. She has had multiple surgeries to repair bowel mal-rotations . Ashlyn also had and has severe tracheomalasia with a crimp in her airway from the vascular ring.

Her biological family came to Minnesota a few weeks after Ashlyn arrived so they could meet our other three kids and get to know us and our 6 kids better. Our daughters began referring to each other as “sorta-sisters” and continue to see each other this way, today. Ours is a complex relationship that brings great blessings even when it is hard. We all agree that Ashlyn needs to have as many people who love her in her life as possible.

 

[Ashlyn May 2012]

In September, ’98 Ashlyn had a trach tube placed so she could finally breathe easier. She was still so weak she could not really cry but the tears would drip down her cheeks when she was in pain or upset about anything babies get upset about. If she turned her head to the side her airway would close off and she would pass out. She would pass out up to 15 times a day until she received two tracheopexy surgeries to suture her airway open. In March we flew to visit her family but Ashlyn was unable to breathe on the plane- luckily we had brought two nurses with us and a nurse anesthetist happened to be on the plane as well so we all took turns bagging her until we landed and were met by a respiratory therapist with a ventilator. That was her last airplane trip☹

Ashlyn has no immune system and cannot take antibiotics directly into her stomach- she requires IV antibiotics if she acquires a bacterial infection. She has been septic will over a dozen times. (To the doctors amazement she will walk into the hospital smiling, even when septic, and sign “Hi Hubba Hubba” to every handsome doctor or nurse she sees☺ Ashlyn receives sub q IG (basically other peoples’ antibodies) every week to help her avoid viral infections. She also has a bleeding disorder- her blood tries to clot but the clots do not stick so healing is very difficult.

Due to her health concerns she rarely goes out of the house. The school sends her teachers to our house for about 25 hours each week. (She has her regular classes plus keyboarding and Braille.) She goes on one three hour field trip each month with the school. While she used to use her ventilator only when she slept, she now is on it whenever she is stationary- it helps her to have more energy.

Last summer Ashlyn’s health worsened and she required neb treatments every 2 hours around the clock for nearly 10 weeks. Her coughing prevented her from using her vent much of the time. In the fall we began talking about the possibility of applying for a Make A Wish trip and how much it would mean to Ashlyn to go somewhere. We thought she should take a trip when she is not dependent upon her vent so she can enjoy the experience more. We asked her if she could go anywhere, where would it be and she started clapping and jumping up and down while signing Disney World☺

While she loves all of the princesses and characters really Disney World is a place that almost everyone she knows has gone. She wants to be like everyone else and going there would give her a common experience to share with people. We filled out the application and waited. We learned that she was medically approved right after Christmas- when we showed Ashlyn the letter she could hardly breathe… She couldn’t wait to meet our wish granting volunteers!!!

These wonderful people came to the house and Ashlyn could hardly contain herself. When they asked her what her wish was, she began a very long explanation with VERY big and dramatic signing:

"I want to go to Disney World with my whole family. Dad, Mom, Kevin, Andy, Djeneva, Charlotte, Hannah, Porter, MomL, DadK, Tia, Sam, Mimi, Abriana, Amelinda, Alex, Kaley and Baby Nayeli. I can see all of the princesses and go on some rides. I can go to the ocean and walk in the sand. I can see the whale at Sea World." She was signing so fast we could barely interpret for her

They explained that only siblings under 18 could be included in the wish. We are hoping that we can bring our two sons and one daughter with us at our own expense. They also have some disabilities and won't really understand if we leave them. There will be challenging logistics as our sons both require 24 hour care as well so we will need to bring at least 3 nurses along with them. It sounded like they could go along as long as there was no added cost to Make A Wish and there was room in the villa/rooms assigned to us. Ashlyn ignores us when we tell her that they may not be able to go- although she understands / accepts why her sister and nieces and nephew who do not live with us and her bio family isn't included in the wish. We are just hoping things work out

After hearing about Ashlyn and her health issues and problems on the plane, they suggested that perhaps we could take an RV to Disney World- we had not even realized that could be an option.

They submitted her request and then we began waiting for good news:

 

[Ashlyn May 2012]

On January 20 we found out that Ashlyn had a massive infection between her ear and her brain- the infection had destroyed bone in her ear / mastoid and was life threatening

She had a PICC line placed and began receiving IV antibiotics, bleeding factors and TPN to prepare for surgery to remove all of the infection and bone that was involved. She has WONDERFUL doctors- the ENT, the intensivists in the PICU, her hem/onc doctor, the infectious disease specialists, the G/I team, our home care nurses and the home IV team all came together to create an aggressive plan to help her get through this. She is still on TPN and IV antibiotics but hopefully over the next two to three weeks will be through this.

As she was mostly stuck in bed the last 5 weeks, she has spent much time thinking about Disney World. She spent HOURS looking at RVs and possible routes- asking about Make A Wish

Last week we got that call that her wish had been approved

 

[Ashlyn May 2012]

We are waiting to tell Ash about the trip until we have the details worked out because she is going to go crazy- she will want to know EVERY detail.

I think we will have a little party to tell her- hopefully in the next couple of weeks!

She loves photography and making scrapbooks- she will look at her photo albums for hours to relive the things she does get to do. I am sure she will take photos of everything she does and every person she meets.

We are also hoping that her bio family will be able to join us for at least part of the trip- that would really make it perfect for her and all of us- none of us could have imagined Ashlyn would get to go on a trip like this and all of us want to be a part of this incredible time for her

We are all so excited for Ashlyn!! We look forward to posting more information and hopefully pictures as soon as we can

 

[Heluvsme]

Wow, my heart just goes out to all of you, and I am so inspired by your strength and your little sweetie's amazing story!!!

Can't wait to hear more!!!

Dawn

 

[4monkeys]

Joining in as you prepare for a much deserved trip to Disney!

 

[imtheluckyone]

following your journey!

 

[kuhltiffany]

Thanks for sharing Ashlyn and her story with us

 

[Ashlyn May 2012]

We have a lot to learn if we are going to be sure Ashlyn gets the most out of her wish as possible!!

All ideas, tips... are MORE than welcome!

 

[jon03015]

I loved reading your story! What a wonderful inspirational family!!! Can't wait to read more.

 

[hedgehog2owl]

Hello! Here to read along, I think we will be there about the same time as you.

How sweet she wants to bring all her siblings with her. My dd is an 'only' but what she wants more than anything is a sister.

Look forward to reading more!

 

[Moodyzblu]

Joining in !!


Ashlyn seems like an amazing young lady and I am SO happy to know she is getting her wish !!

 

[Anderson05]

Joining, Cant wait to see your trip planning unfold!

 

[Ashlyn May 2012]

We haven't posted in a while as Ashlyn became quite ill and we weren't sure she would be able to go on her trip. Thankfully we think she will be able to go, albeit with some additional equipment.

Ashlyn was supposed to have her gallbladder removed in March but we were concerned that there was something else wrong and asked for additional tests to be done first. The doctors agreed and found that she had a grapefruit-sized cyst in her spleen that was compressing her pancreas and her intestines. The hope was that by taking out the cyst her pancreatitis would improve and her liver function would return to normal and her gall bladder, while full of sludge, would stop acting up.

The surgeon was able to remove the cyst (500ml of fluid) and only take a small part of her spleen. Her recovery was slow as her blood clots don't stick and the spleen tends to bleed. She received the necessary blood products and was getting better but then her tummy got worse and the began to need continuous suction to her stomach through her gtube.

To help Ashlyn's blood clots stick to the splenic tissue she required a medication that could also increase her risk of blood clots forming. As Ashlyn is in total isolation in the hospital because she has no immune system she couldn't get up and move around, which also increased her risk of blood clots. It was agreed that we would bring her home with labs being drawn at home so she could move around.

Her ear (the beginning of the current mess) was cultured before we left the hospital. We had been home a couple of days and then the doctors called to say she had tested positive for a hospital acquired infection and needed to be treated with an antibiotic that would basically suppress her liver function further.

She has now come off of the antibiotic with clean cultures. Her liver function has diminished so she is a little yellow and her pancreatitis has worsened but her hematology numbers have stabilized so we are hopeful all should begin to turn around for her. She continues to need the suction to her gtube.

We are now approved to go on 5/2 from Minneapolis with TPN and the continuous suction in place. Our surgeon is comfortable that because she is on TPN continually her gall bladder should be stable.

We will be driving the RV and a 10 passenger van so that we can bring all of our kids who live at home (7 of them) plus 5 nurses. We are scrambling to pull together the resources for the park tickets for our three older kids and their three staff people- any suggestions for discounted tickets are welcome!!!

We are hoping to have Ashlyn's reveal in the next few days- we didn't want to disappoint her- and she will have a sendoff at the Disney store on 5/1

Here's to no more bumps in Ashlyn's road!!!

 

[Betty Rohrer]

is any part of her wish trip invoving Give Kids The World? even if not staying ay the village, she might be able to take part in their activities. can not say enough good things about GKTW. hope you are involved with them as they can help with a lot of medical problems. there is so much going on at village esp character M&G's and parties plus all the parks. i was there twice last year with 2 grandsons having wishes and hoping to visit this summer when we are down.

 

[Ashlyn May 2012]

Yes, we will be at GKTW- we are really looking forward to it

So glad your grandkids got their wishes!!!

 

[Moodyzblu]

Wow your trip is coming soon !! You're going to love GKTW ! We had an amazing time there .. It felt like a real home. Looks like you still have a lot to plan .. Good luck and keep us updated !

 

[Betty Rohrer]

i can not say enough good things about GKTW. we had a medical issue while there,they even went to get my daughter at hopsital in early morning so i did not have to leave kids alone or wake everyone up. were even able to stay a couple of extra days because of medical issues, no extra tickets but able to use the ones we were not going to be able to use. they are there to give us the best possible trip, do not be afraid to ask for help if needed. the boys are that excited to visit this summer but disappointed that they are not staying there. if you have not found there pretrip site, i have lost it, look for it. will give you some insight to what you have to look forward to.

 

[A Mickeyfan]

I am so happy that your Ashlyn will be able to make her trip I pray that there are no more unforeseen bumps in her road to Disney... you guys are almost there!!!!! Pixiedust & hugs to all of you!