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

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.