Monday, September 5, 2011

Weeks 9-15

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.

Sunday, July 17, 2011

Cloey Adventures weeks 6, 7 & 8

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.

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?

Sunday, June 26, 2011

Cloey Adventures week 5

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.

Sunday, June 19, 2011

Saturday, June 18, 2011

Cloey's Adventures Week 2, 3 & 4

  • 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.

  • 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!

Monday, May 30, 2011

Cloey's Adventures Week 1

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

Thursday, May 19, 2011

A New Chapter for Cloey

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"

Wednesday, March 30, 2011

10 years old!

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. hug or giggle from that girl and it's all worth it, and we are lucky enough to get them everyday : )