Princess Cloey: June 2010

Friday, June 4, 2010

On the road again.......

Well, the school year is over and supposedly they are planning on having a nurse for Cloey next year so that she can attend school starting on the first day. I let them know that if this does not happen I will be getting AZ disability law involved. I think they got the point.

Unfortunately Cloey is not doing well. We are not sure why, but she seems to not be getting enough support on the vent. This is very disappointing because we had expected to try and wean her off this summer. She is tired all the time even in the morning after coming off the vent. she can't make it through church, she wears out quickly, most the time she looks quite pale, her alarms are going off much more at night, and worst of all she is just crabby and kicks and screams a lot. SOOOOO not like her. I know she doesn't feel good. The doctors here have no answers. They have run all the tests and say that since her disorder has never been seen before she must be deteriorating & becoming more dependant on the vent, all they can say is that we could leave her on it for more hours in the day to make her feel better.

The doctors here & at Mayo agree that there is something wrong with her brain that does not allow her body to function properly at night. The question is, is the vent helping her. If yes, then what we are seeing is an inevitable dependence on the machine, at which point Ty & I have to choose whether to increase her time on the machine, decreasing her quality of life, until eventually we have to "unplug" her, or take her off now and let her go. If the Vent is not helping, then there is nothing we can do but take her off and let the deterioration happen. Mayo gets their pediatric trach and vent info from Cincinnati Children's, the leading in the Nation for pediatric sleep disorders. So, we are taking the last of Cloey's money and heading there in the hopes they will have an answer. There is always the chance that there is some adjustment, test, or surgery that will change the game completely. However small it is, if there is a chance for her, we will chase it just as we have always done. At the very least we will know we did all we could do, and possibly be able to enjoy the time we have with her.

I will be staying until I have the answers we need. Every night as I fall asleep I think about the choices we are going to have to make and cry. How can we let her go, if that is what's necessary, after 10 years of fighting with all we have for her. I think about all of the people that love her and that she has touched and who has helped us get her the best care. How can we make the choice between now or later? and my other kids, what would be worse, losing their sister or watching her live on machines for the next several years? Ty and I have cried and prayed much over this and ask for your prayers and support in whatever decision we make. Know that it will not be made lightly or for selfish reasons, It will be one that allows Cloey to be as happy as she can be, that is all we have ever wanted for her.

That being said, Cloey has a knack for proving us wrong. My heart is clinging to the hope that if we have to take her off the vent something will happen that will wake her brain up and fix everything. You never know. She will stay here until her work is done, that is for sure.

We will be leaving July 19th.

As most of you know, or can imagine, we maxed out our personal financial abilities to pay for her medical care, thousands of dollars and several years ago. Even with all of the help we have had, every six months or so Cloey has a major event that takes a financial toll on us. After accumulating hundreds of thousands of dollars in medical bills by the time we were 21, we filed bankruptcy. We sold cribs, clothes, everything we had to try to pay for her first trip to Mayo. I have never been able to work or complete school because of the level of care she requires. Ty has missed work over and over again, when she has been in hospital's or had surgery or traveling for medical care. Ty will not even be making this trip with us, we will have to make these tough decisions over the phone, because we can not afford the time off work. Don't get me wrong we know we chose to do this for Cloey, and we would do it all again with or without help. Just like with this trip. Cloey's fund that has been generously created for her, is running low. We will be taking Cloey and staying for all the testing or whatever she needs even if the money runs out. and Cloey's quality of life will continue to mean more to us then money. We only spell this out, to let you know that we would not accept or ask for help without first sacrificing ourselves. But even after all we could do, had it not been for the generosity of family, friends, church members and even some complete strangers, Cloey would not nave recieved the life changing medical care that she has. We have humbly learned that it is not possible to care for this little girl with an unknown disorder without the charity in the hearts of others, and we will be eternally grateful to them.

Cloey has once again touched some people's hearts and they will be holding a garage sale fundraiser to help her.

Thank you to everyone who has helped Cloey in any way!

Info on the fundraiser~

I was touched by a sweet little girl, Cloey Gibson, who loves all who she meets. Cloey was born with a rare genetic disorder, the only documented case in the world. She has gone through surgeries, treatments, medications, and currently has a tracheostomy to help her breath. It has helped her for a while but she is struggling once again with her breathing and needs further medical treatment.

We are doing a garage sale to help raise money so that Cloey Gibson can get the medical attention that she needs.

We are doing a garage sale for Cloey
Saturday, July 10th at 6:00am,
3376 East Thornton Ave. Gilbert, Az 85297

I need people to volunteer to help that morning with the garage sale, to donate items, to collect items or donate money.

To help contact via email katsmilemom@gmail.com

I am looking for donations of new and gently used items.

New items such as, jewelry, candles, pamper chef, hairbands, empty photo books, scrapbooking supplies, handmade crafts, new toys, new baby items, etc.
*New items sale better then used and we can sale them for a little more money.

Used items such as, gently used baby items or furniture. Gently used toys, bikes, clothes, furniture, anything else that you have in good condition that you would want to sell for a great cause.

100% of the proceeds will go to pay for medical care for Cloey Gibson.

Please spread the word anyway you can.

Some issues Cloey has faced

POTS
Von Willebrand
Ventilator dependant (12 hours)
bone anomalies
numerous infections
hypoglycemic, anemia, malnutrition
excema
at risk melonoma "abnormal birthmark removed"
intestinal deformity
tracheostomy
sleep apnea
sub mucus cleft pallette
esophegial reflux
VSD (hole in her heart) & arythmia
gross & fine motor skills delay
"lazy" eye/ glasses
spinal stenosis/fusion
bladder surgeries
sensory integration disorder
speech/motor planning delay
tonsils and adnoids removed
10 sets of ear tubes
mental retardation
siezures
Failure to thrive

The birth of a miracle

A Mother’s Story
A tiny purple foot. That’s all I could see. There was no, “it’s a girl,” or no “oohs and aahs.” I wasn’t holding her. The room was too quiet. No baby crying – just fast, technical talk between the doctors and nurses. This was the first time I had given birth, maybe this was normal. I just wanted to hold her, but all I could see was a tiny purple foot – shaking. I remember thinking that she must be cold.
Finally a nurse was bringing her over to me – wrapped in a blanket. I thought she was going to hand her to me, but instead she just said, “Kiss her forehead. She has to go upstairs.” I looked at her new daddy and said, “Go with her.” I think he was relieved not to have to make the decision between wife and daughter himself.
As he left the room I realized the prompting I had received months before to be sealed in the LDS temple (married not only for time, but also for eternity, so that we and our children can be together forever) was in preparation for this moment. I found comfort in knowing that if she didn’t make it, I would have the opportunity to raise her after this life.
Eventually, I was taken upstairs to see her. Her dad was with her. He put his arm around me and I reached into the clear little box and touched her hand. She was covered in tape and wires. Her eyes were shut and she wasn’t moving. Ten seconds passed – maybe – and a helicopter team came rushing in, with all the technical talk again. I asked what was going on. Someone held a paper in front of me with a diagram of a heart on it and started to explain what was wrong with hers. They said she was being taken to Phoenix Children’s Hospital.
I wasn’t listening. I just watched them as they lifted her tiny body into another box and took off running. Her protective daddy asked if he could go with her and they said no, he would have to follow by car. He kissed me and off he went, along with his dad, to be with our new baby girl.
At Phoenix Children’s Hospital Neonatal Intensive Care Unit (NICU), her concerned father was told Cloey had a coarctation of the aorta. She was on a breathing machine and was scheduled to have a surgery the next morning. The doctors showed him the x-ray that showed a hole in her heart. Acting on faith, Cloey was given a blessing by her dad and his grandfather. He had never given a blessing before, and had only been ordained an Elder (received the power and authority to give such a blessing) a few months before. I was not there, but was later told by a nurse it was a very powerful experience. She said several nurses paused during the blessing – unheard of in the NICU. The words of the blessing were more than an new dad with a heavy heart could have uttered on his own. They had to have come from a loving Father in Heaven who was mindful of the new challenges our family was facing.
Cloey was born on March 25, 2001 at 3:13 p.m. at Desert Samaritan Hospital in Mesa, Arizona. Within hours, both she and her daddy had left the hospital. Very early that next morning – before the sun came up, I called my husband. I was crying – lonely, and unsure of what was happening with my new baby – so he came back to be with me for a short time. By 10:30 a.m. on March 26, I had checked out of Desert Samaritan Hospital and was on my way to Phoenix Children’s Hospital to see Cloey. When I arrived, she was the biggest baby there and was right by the window. For that I was thankful.
Sometime that day, they ran another echocardiogram of her heart before taking her to surgery. The hole that was there the day before was gone. Cloey would not need the surgery! It was a real life miracle. The only thing that had been done to Cloey between the x-ray with the hole and the one without, was the blessing she had been gien. I knew then that the Lord truly does answer prayers, and that the power of the priesthood is real.
Cloey spent the next 14 days in the NICU. We were right by her side every day, and would stay until 1 or 2 a.m. We would go home briefly, eat and sleep, and return by 7 a.m. each morning. We read to her, played musical toys for her, talked to her and dressed her in her own clothes.
At one point, when they were trying to wean her off the breathing machine, she crashed. Alarms went off and they told us to step back. We thought we were going to lose her. Three days later when she was successfully breathing on her own, one of the doctors told us, “She is the master of her own destiny.”
Around this time, the geneticist pulled us into a room off of the NICU to give us the results of some blood tests they had taken. We thought this was just procedure. We later learned the blood tests were ordered because of her “dysmorphic features”.
The geneticist asked us to sit down. We held hands. He told us Cloey had an unbalanced translocation duplication 16q22 monosomy 14q32, to be exact. He wasn’t sure what to classify it as because he had never seen it before. But he was sure she would be severely physically and mentally delayed. He told us that it would be significant. She may never walk or talk or even know who we were. We both cried.
Until that moment we thought that this NICU stay would be our trial. As soon as she was better we would go home and this would all become a distant memory. We really had no idea something was “wrong” with her. All our hopes and dreams were gone for her at that second. Then he said, “You can take your baby home, and I will see you in six months.”
We went out into the hall and told my grandmother what the doctor had told us, and we all cried again. Then we went back into the NICU. As soon as I saw her again I stopped grieving for what she wasn’t and started loving what she was. She was so beautiful and was fighting so hard. She had no idea what we had just heard or that she had limits. She was just trying to be a baby. So we took her home and knew we would do all we could for her.