Princess Cloey: June 2011

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.

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!

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.