Princess Cloey

Weeks 9-15

2011-09-05T13:03:00.000-07:00

So Sorry It has been so long since I have updated on Cloey's adventures. She has remained relatively healthy. The only decline we have seen is a decrease in endurance, but thankfully it has been a slow decline and Cloey is still able to do most things.

The stress of it all has finally taken it's toll on our marriage. Ty and I our both overwhelmed and obviously coping in very different ways. We are in counseling and working on strengthening our marriage.

In the meantime, Cloey (and Cal) completed buddy bowling and received a trophy! She also enjoyed a week at Ryan House where she got to be nurse for a day and take care of patients (teddy bears). She was able to participate in Camp Zoo and feed the Giraffes, her absolute favorite a animal. And the biggest change of all has been going back to Brisas! because of all that is going on with us, we had to re-prioritize and decided to put the kids back in public school. When we told Cloey she asked if she could go back to Brisas, I wasn't sure it would be possible but the kind & caring principle over there made it happen (Thank You!)

Please continue to pray for our family, your prayers are felt and much needed.

Cloey Adventures weeks 6, 7 & 8

2011-07-17T23:13:00.000-07:00

Cloey has been on some hard core antibiotics for a skin infection on her leg. It looks like it is working and the infection is clearing up. The problem is the antibiotics have caused a major bout of diarrhea & yeast. Nothing we haven't dealt with before, but this time it's different. Poor girl couldn't sit down even after I called and got her prescription diaper cream. Than we had to fight with her to clean her up, and watch her cry. Seriously? I thought we were doing "comfort care" everything is so much harder now that our goals have changed. Speaking of hard things, I read this article recently and It captures the feelings and emotions of our situation Dead On. While I don't know what it is like to lose a child, everything up to that point is exactly what it's like for us. It was so hard for us to read. For all of you who are asking how we are, this article will give you an idea. My prayers are with Sophie's family.

http://tucsoncitizen.com/arizona-news/2011/06/26/a-young-girls-battle-with-cancer/#.TiJq1Rr3sxw.facebook

We also moved into our new place and are just getting settled. Cloey loves it because it has stairs. We watched fireworks and lit some sparklers on the fourth, but didn't go to Tempe Town Lake like we had planned because we were in the middle of unpacking. Cloey also got to run and play at Makutu's Island, something else she has wanted to do for the last five years. It is awfully dangerous with her trach, but she really enjoyed her freedom and we loved seeing her so happy & proud of herself. That's what it's about right?

Cloey Adventures week 5

2011-06-26T21:05:00.000-07:00

We had a great opportunity through Hopekids to attend the Ringling bros Barnum and Bailey circus! in a box suite no less! The Scottsdale Fire Department really stepped up and covered Ty's shift so we could go as a family and Cloey was so happy to have her Daddy there. We all had a lot of fun. The best part is we got to share the suite with one of Cloey's best friends, these two seem to have a special bond and they had a lot of fun together.

Also this week I came in contact with two families facing trachs for their kiddos. It struck a bruised spot on my heart. These kinds of decisions are so hard to make and only the select few who have had to make life or death decisions for their child can possibly understand the weight of it all. In both cases, all the uncertainty and worry and pain of every decision we have made for Cloey in the last 10 years flooded over me. I know exactly how both these mommy's feel. The pain of watching them suffer mixed with the relief when the intervention works still mixed with the grief over the restrictions it causes. The constant quantity versus quality. I am in no way standing on a pedestal or saying that this kind of medical technology is not worth it, on the contrary I am very grateful for the technology we have today that has allowed Cloey to live years beyond her expectancy, I am just trying to convey the complexity this rare category of parenting goes through on a daily basis. To quote Annie "It's hard knock life for us"

The rest of the week has been filled with packing. When I came across Cloey's baby stuff I started to cry & had to find Ty for a hug, but after the initial tug at my heartstrings, We all really enjoyed talking about when Cloey was a baby. looking at her first pair of glasses, blessing dress, preschool artwork, and a video that was made for a fundraiser when she was 5. All of those sweet memories reminded me that while us "special" parents may have a hard knock life and bruised hearts, we also know a rare breed of Love and Joy That I believe can be found no where else but with these precious souls.

2011-06-19T23:45:00.001-07:00

Cloey's Adventures Week 2, 3 & 4

2011-06-18T17:34:00.000-07:00

Ok, so I am lame on this updating thing, but I do have a good excuse. Check facebook or our family blog for details but because of a water leak we have been displaced for the last 2 weeks and now have to move. The good news is we have been busy doing fun things with Cloey as well! Here is the recap~

One of the first things we did was a movie in the park. Ty was at work so it was just me and the kids. It was picnic style so we had no wheelchair for Cloey, it was at night & for once we didn't have to rush back to meet a nurse, and Cloey ran around and played with all the kids at the park.

Then some of our dearest family friends and one of Cloey's best friends came down from Colorado for a visit! we had a fun filled week, taking our friends to church, going to the zoo, Cerretas Chocolate factory, the splash pad, the movies, and sleep over fun!

For her Birthday Cloey got a kit that you can order caterpillars and watch them change to butterflies. I finally ordered them and all the kids had fun watching the metamorphosis, especially cloey who has 9 pet butterflies now.

Cloey and I had the opportunity through HopeKids to see Valley Youth Theater production of Annie. Cloey just loves the Theater, going to shows is probably one of her favorite things to do and Annie was one of my faves growing up, so we had A LOT of fun. I really enjoyed my special time with her and I think she did too :)

We also had some fun staying at a hotel, and then at Ryan House for a special family visit. It was like a mini vacation and I have to say the logistics were much easier without the vent and such. Cloey has not been in a pool for 5 years, while it is still risky with her trach, we go ahead and let her in. She LOVED it. S0 fun to watch her kick her legs when it was such a new feeling for her. She has shown such joy in her new found freedoms on Hospice and has become, umm shall we say, independant. We love the growth we see in her and it confirms to us that this step is what Cloey needs right now to reach her greatest potential.

Cloey is a super star! Ty and her were pictured in an article on Ryan House. They caught her laughing, I was so happy to see my bubbly girl in the paper. She knows she's a star too, and is telling everyone "guess what? I'm in the newspaper!" http://www.azcentral.com/community/phoenix/articles/2011/06/18/20110618ryan-house-children-care.html

After leaving Ryan House we went to Lenny's Burgers because everybody said it was the place to go downtown, and it was pretty dang good, but the highlight was Cloey eating an ice cream cone! she has only reluctantly tasted ice cream before, mostly in therapy, but this time she got it! It was like a light bulb went on after 10 years and she was like, "so this is what all the noise is about" it was super cute!

We had a small pneumonia scare with Cloey at the hotel and I will admit my heart was caught in my throat. But Hospice worked like it was supposed to and we took care of it quickly and painlessly with no pokeys or hospital stays.

Cloey, with Cal as her buddy, has joined an adapted bowling league in Tempe. It will be something fun and air conditioned to do this summer, so far they had fun. Cloey says she got a home run and 100 points! hehe

If you noticed the new layout, it is in honor of Cloey's favorite animal and she helped me pick it out! also, Cloey has a facebook page now, look her up if you want to be her "friend"

All in all Cloey has been her strong, fun self and we are loving it!

Cloey's Adventures Week 1

2011-05-30T16:55:00.000-07:00

Cloey is now officially on Hospice Service. The process was pretty painless considering the circumstances. Ryan House is an amazing organization and and has made the process fluid, our nurse manager who we will be going through for all our needs is a nurse from Ryan House that we love and trust.

The part that stung the most was telling our favorite night nurse, and having morphine and ativan delivered to the house, which we will need to have on hand for comfort control.

Thankfully, Cloey has been pretty stable, she is tired, but we have not seen an increase in her weakness so far. She is now sharing a room with Lainey and loving it. I love tucking my girls in at night in a "normal" room. We don't have nurses anymore either, it's a little odd since we have had someone around at nights for nearly 5 years.

We have been getting mixed reactions from people as they find out. We have mixed reactions ourselves sometimes. Moments when we cry, feel guilty for not spending enough time with her, questioning if we made the right decisions all along for her, soaking in the joy that is her.

I heard a song from Wicked for the first time this week that reminded me of her. My Cloey Girl, You have changed me FOR GOOD

A New Chapter for Cloey

2011-05-19T11:35:00.000-07:00

After a lot of time praying, researching, talking (sometimes arguing), crying & pondering Ty and I have decided to put Cloey on Hospice service and take her off the her vent (breathing machine). Cloey is a strong little girl and is still able to breath on her own, we hope that by doing this now we are preventing her being completely dependant on machines. We want to give her a chance to be a kid and to be happy. By putting her on Hospice we are not giving up on her, just making sure we have more control of her medical decisions. We will be avoiding the hospital like the plague and doing as little intervention as possible. We will no longer have nurses in our house every night, Cloey and Lainey will get to share a room, we can take her camping, and Cloey will be Home schooled with her brother and sister. Our first instinct was to quit everything and spend every second and dime with her, but we have decided that what Cloey deserves is a "normal" life. We will continue our daily lives and we are going to do as many family activities with her as we can, I hope you will follow them here as I do my best to update weekly on "The Adventures of Cloey"

2011-03-30T02:15:00.001-07:00

10 years old!

2011-03-30T00:06:00.000-07:00

Happy Birthday Cloey! I can honestly say I never thought this day would come. Cloey is such a sweet YOUNG LADY. We are so blessed for 10 years spent with her sweet spirit. Her birthday was a lot of fun, and if you have talked to her in the last 6 months you know she was looking forward to "being 10". She really wanted a sleepover with "pajamas and scary stories". So, since she has a nurse and needs her breathing machine at night, we decided to have a pretend sleepover. We played games, painted nails, ate chocolate chip pancakes and of course wore pj's and told scary stories. Cloey had a lot of fun. I have learned that Phoenix Children's Hospital is working on changing the term Do Not Resusitate (DNR) to Allow Natural Death (AND) so I will be using that term from here on. The last six month since we signed the modified AND, have been, well, different. Luckily Cloey really did not get sick this winter. But, it was humbling to come back and see all of her doctors and tell them about the AND. Some were visibly sad, some tried to think of something else to try & came up with nothing, some said nothing at all. But all have been supportive. I kinda wanted at least one to completely disagree and have some other option for us, but it didn't happen. Our doctor's appointments have been so strange compared to before, real laid back. Her 10th set of ear tubes that we had placed less than a year ago are out, and the doctor was like, "well I don't think her ears hurt right now, you want to just do nothing and spare her the surgery?" and if Cloey doesn't want to do something, everyone is just like "ok" She's the boss. My nursing and caregiving help has increased, giving me more time to do fun things with Cloey instead of just taking care of her needs. The sad development has been Cloey's increased dependance on the vent to breath. We are using the wheelchair more, limiting outings, having to go home and give her a "break" on the vent more often, she is more sedentary and will sit on the bench with me at the playground instead of play, she is unhappy more of the time, the nurses are seeing more dependance at night too. This is all weighing very heavy on our hearts. We are meeting with some of her doctors and care team and trying to make some REALLY tough decisions to keep her the most comfortable. The stress level in our marriage and family is at an all time high. We are trying to make impossible decisions, and still have all the everyday craziness of work, school, the house and the kids to take care of. But........one hug or giggle from that girl and it's all worth it, and we are lucky enough to get them everyday : )

Day 4-change of plans

2010-07-22T13:34:00.000-07:00

Cloey's sleep study was moved to today, so we didn't make it to the zoo : (

The good news is we will probably go tomorrow, and be coming home Monday.

The not so good news is that we have decided to sign a modified DNR for Cloey, allowing respitory and pain control support only.

This trip, our last Mayo trip and her symptoms have concluded that there is irreversible damage to her brain, causing her autonomic nervous system (basically everything you're body does automatically: breathing drive, heart rhythm, pupil dilation, bladder/bowel control, etc.) to not function properly.

When she was born her skull was abnormal causing pressure on the lower part of her brain stem & spinal cord. This was discovered on our first trip to Mayo when she was 2 1/2. we did a decompression surgery (removing bone in her skull & spine) to relieve some pressure. It wasn't enough & subsequently fused her entire cervical spine to prevent damage to her brain or spinal cord. after the first surgery she showed some "signal changes", a black line on her MRI. she lost her pincher grasp in her left hand and had some overall left sided weakness, Hardly noticeable though. The spinal cord can usually grow around damage like that and she would probably recover. Since then her breathing etc. has deteriorated but there has always been another possible explanation. She has a spine x-ray every year and they have been perfect, no new growth or anything. It wasn't until this trip that all the pieces started to fit together and point to her brain & spine.

There is no way to tell if the damage was there when she was born or was caused during the surgeries, and it doesn't matter, she would be paralyzed from the neck down if we had not done it.

There is no "fixing" the brain. we have the choice to try to stay one step ahead of her symptoms (eventual 24hr vent dependence, colostomy bag, pacemaker, repeat spine surgeries, etc. etc) we could probably manage her for another 10 years, but it would be quantity not quality.

Cloey does not want that. she tells me she wants to take her g-tube and trach out. She wants to play with other kids. Today when we showed up to the hospital for a sleep study she wouldn't talk to me. She was kicking me and saying she wanted to go home.

As Ty and I talked about what to do, we remembered that all we have ever wanted was for her to be a kid. all the fighting has been to give her some kind of life. If we wanted her to just stick around and be on machines we could have stoped trying in the NICU. We could have put her in a group home.

What all of this means is that Cloey will still be on the vent, but minimal hours and rate, just enough to keep her comfortable. If she needs CPR they will do breaths only and not chest compressions. We might continue to do minor surgeries like ear tubes, just to keep her out of pain, but we will not be "fixing" anything. We will manage her care primarily at home, with a possible scheduled maintenance trip to Mayo once a year, should Cloey decide to fight the system like usual and stay with us for a few years. basically we will only be doing supportive care and allowing God and Cloey to decide when her work here is done

Are hearts have been heavy all week. we really hoped they would find something fixable. We truly appreciate every one's support & wish we could say "Thanks to you, Cloey will be fine" but instead it's "Thanks to you we were able to confidently make the hardest decision of our lives"

We will get the results from the sleep study in the morning but are not expecting any changes. Ty will be flying out here on Sunday to help me get Cloey home safely on Monday. Then we will start the process of signing the DNR and giving it to all of her nurses, care providers, etc.

While I am extremely sad and get physically sick when I think of losing her, I watch her and realize how much of her life she has spent being "handled" by doctors, nurses, therapists, caregivers, us~

It's time to let Cloey be a kid, even if it's only for a short while.

Day 3

2010-07-21T23:05:00.000-07:00

We are in Ronald McDonald House! It's so weird, but even though I have never been to this one, it feels a little like I am home. I am sure part of it is the familiarity, but it's just so nice be around people going through similar things. For the first Time in three days, people are talking to me like I am a person, smiling & chatting, not just staring and giving me pity looks. Volunteers and parents with a free hand jumping to help, not to mention a real home cooked ham dinner. Cloey is happy too, she loves it here & of course everybody immediately loves her.

The kids make "all about me" posters to hang on the room doors with pictures and everything. Cloey was glad to see all the pictures of kids with trachs since this is the leading trach & airway hospital. Then She saw a baby with tubes all over and she said "look mom just like I did" yes Cloey, you sure "did".....

Cloey had an EEG placed today. It is wires glued all over her head with a little computer in a back pack. The neurologist wants to rule out seizure activity that could be interrupting her sleep patterns and therefore causing dependency & fatigue. We still have tests to do through the end of the week and into Mon next week. The doctors have an idea of what is going on and are basically trying to eliminate all other possibilities, unfortunately if it's what they are thinking it is, it's not good. please bare with me, it is very complicated and since we don't really know yet, I am not going to go into it now. Just know that our hearts are very heavy and we have spent a lot of time talking and a lot of time on our knees.

I want to end on a good note so I will tell you what we are doing tomorrow, Cincinnati has one of the nations top zoo's and Ronald McDonald has free tickets! Cloey will be done at the hospital by about one and then we will head over. Giraffe is favorite and she is excited. Thanks to everyone for all the well wishes!

Day 2

2010-07-21T00:12:00.000-07:00

very long day, though not as bad as yesterday. no answers yet. tests planned starting tomorrow. It looks like the heavy decisions for Ty & I are starting.

Also, everyone was right this is a scary part of town, I am trying to not get out of the car at all. It seems worse then downtown phoenix!

on a good note, we got into Ronald McDonald house and will be moving over there tomorrow

We Made It

2010-07-19T22:33:00.000-07:00

we are here. The day started out really good, we had some help with Cal & Lainey so Ty was able to take us to the airport & get an escort pass to help me get through security. Just to give you an idea we had about 10 bins and her wheelchair, all medical supplies and machines that cause some kind of red flag and have to be tested, so I was real glad he was there to help. unfortunately the day went downhill from there. Cloey was having a hard time breathing on the airplane so I got her ventilator from the over head compartment. it's heavy so I had to have help, and unpack it in the aisle, only to realize the cord from the vent to the battery was missing, so I packed it all up and sat back down and turned her oxygen up hoping that would help, it did for a while but turning it up made the battery die sooner. I didn't do anything at first because I wasn't sure what I would do and I was hoping she would come around. She got lethargic and sweaty and her stats dropped to 78 (bad). so I got back out and got the ventilator down, it has an hour of internal battery and we had over an hour and a half left. so I hooked her up, leaving my only option to bag her (basically CPR) when the battery died if she was still doing so bad. Thankfully, her stats came back up to the low 90's and when the battery died she was stable enough to make it the rest of the flight. It was super scary though, my hands were shaking.

So we got off the flight and went to baggage claim. We have 4 bags that are 50lbs each, plus what I had brought on the plane. A skycab was quick to help and took me to rental car so that was cool, but when I got there the company would not honor my reservation. Long story, but basically even though they accept debit cards & I had no problem making the reservation with it & I was willing to pay in advance with the debit, they would not give me a car without a major credit card which I don't have. The other four counters were all out of cars. One said they might have one in 2-3 hours. so I had to load all the bags on a cart and push cloey and the bags to the other side of the parking lot. they fell 3 times & I could barely lift them. Once somebody helped me pick them up though. so I get to the other side and all 4 of those companies are out of cars as well. I had to give cloey a feeding so I did that while I tried to figure out what to do, while doing that I noticed that her diaper had leaked. I had to leave the bags and take her in the bathroom to clean her up, change her clothes and wipe down the chair. At this point I was pretty frazzled. I hadn't eaten since a bagel that morning. It was 7 here, about 4 there. This also meant I was now driving from Columbus to Cincinnati in the dark. I called Ty and told him everything and started crying because we couldn't come up with anything to do but wait. I hung up and decided to try to make it back across the street to the airport with Cloey and all her bags so I could at least eat and then try to figure something out. I made it almost out of the parking lot when a lady working at one of the counters chased after me. She had heard me crying to Ty and called her manager and got me a car. (yay!) the only problem now is it was quite a bit more $ and I have to try and get the $ back from orbitz for the one I had reserved. It took me a long time getting all of the stuff into a car instead of an SUV, but I did it, found a McDonalds and was on the road. It took about 2hrs to get here.

It was now dark. All the handicapped places were taken so I was parked in the back of the lot. I have been warned by several people that this is not a good neighborhood. I asked the guy at the counter for help, but he said he was the only one working & couldn't go out. So I decided to take Cloey up to the room and leave her there by herself while I went & got the bags. I need all of her medical supplies to set her up to sleep so I had to get the bags there was no way I could wait till morning. We were almost to our room and Cloey threw up all over herself and the hallway, I took her shoes off (they were soaked & I didn't want her to track it all over) and pulled a table over the puke and had to tell the guy. I took Cloey in the room to clean her up & then we went out to get the bags. I was afraid if she puked again it would get in her trach and no one would be watching her. we got all the bags in and then I gave her a bath, did her night care & set all of her machines up.

Then as I got my netbook out to post this, I found my broken camera. The screen is all smashed. It's not a super nice one or anything but we had been borrowing my grandma's for a long time and finally been able to buy this one not even a year ago, so I'm totally heartbroken about it.

Sorry this post is such a rant, It is 2:30am here and Cloey's first appointment is at 9am tomorrow, so I should be sleeping. But I am feeling pretty beat down right now. I know it's at least partly because how she acted on the plane confirms her dependency on the vent. I had really though she'd be able to do it on just oxygen. I am sure in the morning I will see more of the things that didn't go wrong. Most of what did, is material and will be forgotton soon enough, being here to help Cloey is what will last. At the end of this horrible day my heart smiles just a little to know we are taking Cloey to the best to give her the best life possible and I will be able to do that for her soon now.
Goodnight~

On the road again.......

2010-06-04T19:35:00.000-07:00

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.

Stuck

2010-01-08T00:17:00.000-08:00

Well since we have been home from Mayo nothing has changed. The report sent back, said that depending on more testing Cloey could possibly be less dependant on the vent. Since taking her off involves many doctors agreeing it is safe, the nursing agency and the state, we are at a stand still. Her pediatrician wisely suggested we not make any changes during flu season. At that point, depending on her pulmonologist, we may be able to move forward with weaning her off the vent. The process of getting her in school is also a sticky mess. I will post if there are any changes, squeaky wheel gets the grease right?

I know Cloey that's exactly how I feel......

Day five

2009-11-06T20:22:00.000-08:00

We're coming home! Last night Ty and I decided that if we were going to believe that she didn't need the vent anymore we had to be sure, so we kind of did a study of our own. She had the heart monitor on and we did not put her on the vent last night. I was so nervous that after a few minutes of tossing and turning I made Ty bring her to our bed so I could make sure she was still breathing. It helped a little but I didn't sleep much. The cardiologist called me today with the results and said that it was as he had expected. She has an irregular beat, and while her rate dipped into the 40's once, she recovered on her own and had no pauses. This means that she is breathing and her heart is beating within normal range on her own without the vent! So we will be on a flight home on Monday. We are excited and nervous and grateful all at the same time. Thanks to all who prayed and helped Cloey on this leg of her journey, we love you!

Day Four- Miracle day

2009-11-05T18:45:00.000-08:00

Cloey had her blood drawn early this morning, she was brave and did it all by herself with no one having to hold her down. We were discharged and went over to the clinic to have her heart monitor put on (it's a 24hr study). When we got back to the hotel, Cloey's ENT doctor called me personally on my cell phone. She asked if I wanted to come back to the clinic and discuss Cloey's sleep study. We headed right over, we were so nervous because it could have meant anything. I was sure it was bad news, why else would she ask us to come over and why would she be calling me and not having the sleep disorder office do it? besides we had prepared ourselves for the worst on this trip and everything up to this point had lead to the answer being that she was just declining. Two of her doctors had even nodded their heads in somber agreement when I asked if that was the case. My heart was pounding and Ty was there telling me to calm down, it could be could good news, but we both looked at each other and knew it wasn't likely. The doctor sat us down and said, "Well Cloey is a puzzle". Her sleep study was in normal range, both on and OFF the vent, meaning she doesn't need the ventilator to breath! You have to understand we (us and the doctors) thought this was impossible. Central apneas (brain not making you breath while you are asleep) are not supposed to clear up.

I have to interrupt myself here and say how the power of so many praying for her had to have played a part in this. We can feel the power of everyone who cares about her. Ty and I are in complete shock. Could this mean we will have a sweetly delayed but healthy 15yr old? can her and Lainey share a room now? will she have a more normal life? will we still need a nurse? Will she continue to get better and not need the g-tube, or even the trach? can we allow ourselves to think of the possibilities? We made into Ronald McDonald House today and it felt so much like coming home, while I sat on the couch waiting to be checked in, saying hello to long time friends, I eaves dropped on a couple being checked in for the first time. They sat there like zombies, completely overwhelmed, and when they were given the quilt that every child receives the first time, the mom held it and cried. Tears started rolling down my cheeks as all the feelings came rushing back. The worry for your child, not knowing which way is up. The pain of watching them suffer. The money problems, the loneliness, the anger, but most of all the fear. I watched them and wondered, after nine years is she gonna get better for once? Only time will tell. but for now I will embrace this miracle

Medical breakdown: This is why we come to mayo- When you look at what has been going on with Cloey over the last six months or so; low heart rate, fatigue, relying more on the vent, it all sums up to her just going down hill. This is what was expected. That is what we thought, that is what her doctors in Phx thought. But here, with all the specialties working together, laying it out on the table, and taking the time to look at and rule out other possibilities they have come up with another diagnosis.

Cloey has an irregular heart rate that is not causing her any problems and can be lived with (we won't know this for sure until tomorrow, but that's what it looks like). They did an electrical study, the monitor, and an ultrasound to determine this.

The monitor at home registers this irregular heart beat as a drop in her heart rate, making it appear as though she has a low heart rate at night. They think this is likely since she seems to be fine in the day and would be having more symptoms if she really dropped as much as it appears, plus they can hear the irregular rhythm and know it could trick the machine.

Cloey's body has become lazy and tired as a result of using the vent at night. This would explain why she is still active, but tires in the afternoon. She is letting the vent breathe for her because she can, even though she doesn't need it. As a result she has a hard time working all day to breathe. Not the other way around like we thought. If she starts breathing on her own, her endurance would build.

The Trach is working and clearing her airway so her brain is now registering at night. This is what was not supposed to be possible, but both the ENT and the sleep doctor admit that not much is known about the brain and central apneas, so something may have just clicked.

They also were looking at another disorder, a nervous system disorder, and have all but ruled it out, confirming this theory even more.

Her spinal fusion is working perfectly, not causing any pressure on her brain stem or any breathing problems.

After talking to a blood clotting specialist and her PHX hematologist, the hematologist here has decided she does not have Von Williebrands, so there is no way that is contributing.

Her airway and trach are clear causing no breathing problems.

Her diet will be slightly adjusted, but again no problems there.

All of this is shocking and was only based on a snapshot study done last night. Whatever clicked in her brain could unclick and we could end up back on the vent in six months. But, we are hopeful and the doctors here are very confidant that as long as her heart study comes back as expected, we have a MUCH happier and healthier Cloey.

Day Three

2009-11-04T20:42:00.000-08:00

Long Day.
Orthopedic Surgeon says her bradycardia and respiratory issues are not due to her spine.
Surgery went well, no problems, recovered from anesthesia well.
Doing sleep study in PICU tonight.
Exhausted, going to bed.

Day Two

2009-11-03T15:22:00.000-08:00

We are number five on the wait list at Ronald McDonald House, so it should be tomorrow or the next day. We started of with a consult with the sleep disorder doctor. He agreed that there is a possibility Cloey has this underlying condition. He set up a sleep study for Thursday night in the intensive care unit (because of her Vent) He will be checking her oxygen and Co2 level through the night in addition to monitoring her sleep while both on and off the vent. At the same time she will be wearing a heart monitor to see if we see any correlation to REM sleep and the bradycardia. Next was the cardiologist, he ordered the monitor she will wear during the sleep study. He was glad that she doesn't seem to have pauses just a low rate. He will review the results with us on Friday. He agrees that She needs to be tested for this disorder. It is a genetic blood test that will be drawn tomorrow. The results take about 10 days so we will know more after we come home. It really won't change her care either way, it is just an answer as to why and will give us guidance for the future. Next was ENT (they manage the trach). They also feel the results of the sleep study, heart monitor and blood test are important before moving on. She will have surgery tomorrow to examine, clean and up-size her trach and replace her ear tubes. They will also draw the blood for the test while she is knocked out. She will spend the night in the intensive care unit. Last we saw a surgical nurse to check her g-tube placement which is perfectly fine. So, it looks like we won't have any real answers until at least Friday. Cloey had a real hard time coming out of anesthesia with her last surgery in July, so we are a little nervous about tomorrow. Needless to say, keep your prayers coming! We love you all and are so grateful for all the help and support we are receiving

First Day

2009-11-02T14:27:00.000-08:00

Well we have hit the first snag, Ronald McDonald House is full. We are on the waitlist and are staying at a hotel. Hopefully we will get in soon. Cloey had a TON of x-rays done this morning, I think they got every bone in her body. Then we had a Diet consult who may add some gummy vitamins to her diet, she's excited about that because Cal & Lainey get them every day and Cloey thinks she is getting jipped. If she is not able to eat them , we will have to add a powdered supplement to her feedings. This is mainly because at 9 she enters the PRE-TEEN category for nutrition (What!? no way I'm that old!). Then we saw Pulmonary, he believes her lungs are fine, but was researching and putting the pieces together while we were talking and believes she may have another underlying disorder, he will consult with some of her other doctors and get back to us. Last we saw Hematology. She does not believe Cloey has Von Willebrand (the bleeding disorder) and will be getting her labs from Phoenix Children's to make a diagnosis. I am starting to worry about being done by the end of the week. Just today we added two follow-up appointments, and probably a GI appointment and scope. But that is why we come here, to get answers. It's all worth it when we bring home a happier, healthier Cloey.

Off We Go

2009-11-01T01:46:00.000-07:00

I know I have a lot to catch up on with our little Cloey, but I will have to do that later. We are headed off to Mayo Clinic in the morning. Cloey's Bradacardia has worsened and the doctors here have no options for us. She will be seeing her whole team and we are expecting changes. Ty and I are going together in anticipation of having to make some tough decisions. We are hoping to find a solution that will maintain her quality of life. I will not be able to post pictures from Ronald McDonald House, but I will try to post a little everyday. Thanks to all who helped us make this trip happen, and who are praying for us, We need every bit!

Cloey's summer so far

2009-07-30T00:09:00.000-07:00

The Medical Stuff- After Cloey's bleeding episodes we saw a hematologist who after doing some blood work explained to us that Cloey is borderline Von Willebrand. which basically means that she doesn't clot very well and so will bleed and bruise easily. That's makes a lot of sense since she does bruise easily, and has had to have a few blood transfusions during surgeries. Because she has all of the plastic devices in her (ear tubes, trach, g-tube, de-flux) irritation turns to bleeding real quick. It mostly means we need to be aware of it and have extras blood in surgery. She had some much needed dental work done in the hospital and had a real hard time waking up in recovery, she had an irregular heartbeat and they had to hook her up to an EKG and call the on call cardiologist. After about three hours she was stable enough to come home, but it looks like she is no longer able to come out of surgery on her own and will need to be on the vent in the future. She had a case of pneumonia that thankfully she did not feel horribly sick, did not go away for six weeks. She had to have more oxygen and three round of tough antibiotics before finally kicking it. It was a lot of back forth to hospitals and doctors and getting up in the night, a lot of times her nurse, an on call doctor, and I had to work to keep her stats up. She has been having a real low heartbeat at night, so her vent setting have been raised to almost full support and she wore a heart monitor for two days (we will have the results in a couple of weeks).

The Other Stuff- We went to a ward pool party and I expected cloey to be pleasantly distracted talking to people, to care that she could not go in the pool. That was not the case. First she wanted to put her feet in and then sit in (Cloey WILL drown if her trach goes under water, so there is no swimming for her). Then she did something she has never done before, she said "I want to swim like the other kids" I tried to just talk to her and say, well the other kids don't have trachs and you do so you can't go in or you will have to go to the hospital, I'm sorry. or something similar over and over again. She just kept saying no and pulling away from me and then said "I don't want a trach anymore!" I wanted to cry. needless to say we won't be taking her to any pool parties anymore, it was rough. The positive though, is that shows how far she is coming cognitively. She has also started activity days at church (kinda like girl scouts) and special olympics. She will be competing in Bocce Ball this fall.

Saving The Best For Last- A super sweet cousin of ours apparently nominated us for a free photo shoot for a family with a critically ill family member, and Cloey was chosen! J'lynn Mak Photography generously donated a lifestyle photo shoot to us. we went to Anthem park and had a lot of fun, stay posted for the results, we can't wait! Thank to Melinda, Joanna and whoever else made this possible!

2009-04-27T01:45:00.001-07:00

A lot can happen in a little over a month....

2009-04-27T00:06:00.000-07:00

Ok~ I am going to try and go in chronological order. Cloey Is 8 years old! She had a great birthday- cupcakes, balloons, Sonic tater tots (her fave), and a present on the actual day. A big family party for all the kids, and a private pony party for just her very closest friends. It was a lot of fun.

Shortly after her birthday she was baptized. It was a private ceremony that was very touching. She says she is happy to be like Jesus and choose the right, and I know she felt the spirit there. She also went to her first girls activity days. she didn't know what it was, even though I told her is was kinda like girl scouts (which she is loving by the way), but after we got there she had a blast. she especially liked making me wear red gloves and the "newlywed" game for moms and daughters. Cloey had a big IEP meeting at school. it went really well and her teachers at kyrene worked really hard to make sure everything was in it that needed to be for the new school next year. It is amazing to see how well Cloey is doing in school! She is even beginning to "read" (sight words, memorizing, pointing to the words, etc). She met or exceeded most of her goals. It was still a lot to go over for such a little girl. something like 10 people were involved over the course of two 2 hour meetings. Nothing but the best for our little girl!

Now to the not so fun stuff.About three weeks ago Cloey had a 102.5 fever. I kept her home from school and when she got out of bed she had a couple quarter sized spots of blood on the pillow under her ear. This has happened before and usually means a bad ear infection and blocked or loose tubes. she has had nine sets placed and we are pushing a year on these ones. I lost my supply of ear drops when we moved, so I had to take her to the pediatrician. She started her on the drops and bactrum (a strong antibiotic affective against MRSA) because of the high fever and her history of being positive for MRSA in her ear. she also took a culture from her ear (which later came back negative for MRSA). So I took her home expecting her to get better. the next morning the nurse reported suctioning some blood-tinged secretions from her trach(brown snot). I kept her home but thought it was probably just draining from her ear. She had thrown up some, we assumed from the fever, so we had been only giving her a little water and pedialyte. I wanted to try a couple ounces of formula, so I went to suction her first. I filled a catheter with bright red blood. very scary. we are trained to go immediately to the hospital because you can't know where it's coming from and she might aspirate it into her lungs. Ty was in phx at Lainey's eye doctor appointment so I couldn't wait for him to get all the way back here and I am not supposed to drive her like that alone so I called 911. They came out and we took the ambulance to Banner Children's (Gilbert Mercy is not quite equipped for the likes of her). We were there all day and they did not do one thing. Except maybe make her worse by not allowing her to eat or drink anything while we were there. They told us they had called her ENT and he said it was probably tracheitis and to take her home. (her ENT told me later that they reported she "looked like a million bucks", when really she was pale and lethargic) no x-rays, scopes, nothing. she filled three catheders and an HME (the thing she wears on her trach that is bigger and not purple) with blood while we were there. I left because I was not satisfied and figured she would be better off at PCH. we went home and she continued to bleed. After her nurse came in with the third catheter of blood I called her ENT's office. The on call guy was mad that they didn't do anything and told me to take her to PCH. I asked him, if we came in right then (midnight) if he would come to the hospital and do anything. He said no, unless she was aspirating. so I decided to keep her home with the nurse that was familiar with her and bring her in the morning.

At PCH they drew bloods, did a chest x-ray and a trach culture. her platelets were a little low, and the x-ray was clear. they said they called her ENT who told them to just send her home. (I later found out they called the wrong doctor). so we were sent home. She was so pale and still bleeding, I knew something wasn't right. I called her pediatrician, who immediately called PCH and had her directly admitted. When we got there the ER doctor knew us. She said Cloey didn't look right and she knew I was very active in her care and would not just bring her in for nothing, so she said she would find out what happened earlier. They started an IV right away (no easy task, she has so much scare tissue it took 6 people to hold her down and four pokes). It had now been about three days with virtually no food or water for her. She perked up a lot after the first bag. We were there about four days. After 2 she stopped bleeding. her platelets were still low, but other than that they never figured anything out. They said it may have been a virus combined with the high doses of antibiotics she has received that caused her platelets to drop which made her bleed easily. at any rate she was better and we are following up with doctors outside of the hospital.

One kind of cool story- my grandma had bought tickets for CATS at Gammage for Cloey and I before she got sick. We were all bummed that it didn't look like she would be able to go. On Saturday morning the day of the show, the docs came in and were basically saying there was nothing more they could do. So I told my nurse Cloey had the tickets and if we were going to get discharged anyway I would appreciate anything she could do to speed it along. She was AWESOME. We were out of there by 11:00am and we got to go. Make sure you ask Cloey about it. It was so amazing, She lOVED it. I will cherish those memories for a lifetime!

Her pulmonologist had been trying to get her into the hospital for a sort of sleep study to change her vent setting because she had become more dependant on it and her heart rate was dropping at night. after the stay at PCH where she her heart rate was dropping a lot, he called us 2 days after we got out to be admitted for 2 more at Banner Children's. He made some changes but it looks like we will be doing more testing for that too. we are trying to avoid a Mayo trip, but something is bubbling with her, I can feel it. I hope and pray the Doctors here will find what it is she needs.

After we were home we saw her urologist just for her annual check up. he said he would only keep her on the antibiotics for another year and if she is not potty trained by next year, we will have to take further steps. I am not sure what all that entails but I am sure it's not fun. So root for Cloey! I hope she can do it.

To tie things all up, Cloey broke out in a blotchy rash this week. so back to the doctor we go. Turns out it is a rash that lasts 6-10 weeks and usually comes a week after a virus. The rash itself is not contagious. So it looks like Cloey did have a virus and it just really knocked her down. at least that is some kind of answer!
hopefully the next post will be short and boring.
exahaustedly yours-
Megan

All in one place

2009-03-15T22:12:00.000-07:00

Welcome to Cloey's new blog! I hope to consolidate and provide a place to keep the countless people who love Cloey updated. So from now on, check here first! Right now Cloey's doing great. She (along with the rest of us) are enjoying our new house. She is getting over an infection in her trach & lungs that required 2 rounds of inhaled and oral antibiotics. Although it was stubborn and wouldn't go away, she didn't get very "sick" so that's good. her left eye has gotten "lazier" recently so she now has to wear an eye patch for 4-6 hours a day. she hates it and says "I can't see!" the patch covers her good eye to strengthen her bad eye, so she is right about not being able to see, but that is kinda the point :) She is solidly 12 hours dependant on the vent. we are looking ahead this summer and think we are going to have to leave her home for camping and other fun stuff, which pulls at our heart strings. We are trying to think of fun stuff she can do while we are out. Mostly we are just enjoying her giggly self and this time we have with her while she is feeling good. watch for more updates! I promise I'll be better.......

~Megan