[ CeCe's Encounter With RSV ]

 We have been so blessed to have kept Cheyenne healthy for a whole year.  This winter, we kept her home to make sure she wouldn't get sick.  For Easter we decided to take her to church for the first time this year and sure enough a few days later she was sick. But not just any kind of sick, RSV.  I was so mad at myself for thinking we were home free, but I guess the RSV season was delayed because of the lack of winter this year. 

We definetly went all out.  Not only she got RSV, but she was Life Flighted to Primary's.  Definetly not the first time Helicopter ride expirience you want to remember.  Little CeCe was so scared.  Who wouldn't be.  She was all alone in this really loud machine with only the paramedics with headseats.

As we met up with her at Primaries and walked down the hallway I realized that for the exception of her regular visits to the various clinics, we had kept CeCe out of the hospital for exactly 364 days...one more day and we would've made it the year mark.

This time around she spent 10 days in the hospital. Not only she was in the hospital but she was in the isolation room.  After she started feeling better, it was even harder, because she wanted to get out of that room and her crib but we weren't allowed to.  She would chew on her crib like she was trying to break out.  It was sad to see her all caged in. One of her roomates gave her a little teddy bear which she still loves.  She was so cuddly with it and everyone that would let her cuddle with her.

She made so many new friends with the doctors, nurses and respiratory therapists.  They would request to be assigned to her. She has such a friendly personality, they couldn't help but fall in love with her. 

A group of Med student came by to learn about her syndrome.  We are kind of used to this since she is such a rare case.  It was so cool to see their hunger for knowlege in their eyes[see picture] and CeCe just put on a show for them and stole their hearts.

I recorded one of the cutest videos of her at the hospital. [Remember that to watch it you have to go to the actual blog]

After a long 10 days of prayers and great doctors and nurses she got to go home. CeCe was healthy for 10 more days and then got Pneumonia and then got better again and then got Rhino Virus.  I know what you're thinking.  We really need to keep her away from church and rhinos.

{ Look WHOO's ONE }

HaPPy BiRThDaY CeCe BeaR!

A couple weeks ago we celebrated CeCe’s 1st birthday with a owl themed birthday party.  We ordered cute invitations from Aunt Sandra's website [Sandra Deesigns]  and cupcake toppers.  She also made us a banner and we totally forgot to put it up. 

Grant, Drew and Frankie really went all out with the decorations.

 Grandpa did great with the pictures and capturing the moments of this great party!
 Cheyenne got lots of gifts. She got money from great grandparents, toys, clothes, crochet owl beanie made by aunt Pinky, she got an Owl backpack for her feeding tube stuff from daddy, a crochet owl, fabric owl made by Frankie and a very creative owl toy made by Drew.

 

With the help of the kids we made this cake with fondant (not too bad for my first time) and owl cupcakes.

We had owl beanbags for each child which we used to play a game with later on.

A pool filled up with balloons and balls which Cheyenne, Landen and Maya all enjoyed.

The kids made their own owl party favor pillow box and added their own creativity to them.

Speaking of creative...it was interesting to see everyone get very creative in playing the drop the owl in the nest game. I don't know who could do the splits better, Maddy or uncle Julio.

 

 Afterwards we sang Happy Birthday and CeCe loved it!

The best part was having many of our friends and family over to celebrate this day with us.

We are so happy and blessed with the great progress CeCe has had this year.
We are often grateful for being somewhat ignorant with how fragile she is. With 3 surgeries in her first year of her life and many more coming, we know that there are many challenges to come, however we know that she has such a strong spirit that she will preserver; help us along the way.

This past General Conference we were deeply touched by Elder Rasband's talk on Sunday morning.
One of our favorite quotes is

"Some of the sweetest spirits are housed in frail frames."

Here is a little bit of  his talk:

“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. As described in Mosiah, we have witnessed the Savior’s pure love given to Paxton’s family, which love is available to all: “And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.”


He also mentioned "silent administering angels".  We are grateful for all of YOU! We could have not been able to do this without all of you and the kindness that everyone sows to her.  People have been so kind and compassionate. It is often when we are out in public and strangers come over just to meet Cheyenne. We are grateful we live in a society where those with special needs are cherished and there are so many great programs and resources for them. Also for Insurance that helps with such a large portion of her care.

We love you CeCe bear! You are such a happy and loving little girl. We are so grateful you are a part of our family!
Updates:

CeCe is now She is speed crawling. It's so cute to chase her. She is so fast!
She is still using her right fist to crawl.  It is so cute.
She is standing and letting go.  Soon, she'll be walking I'm sure!
She is crawling up the stairs and practicing on going down them safely.
She is making even more noises through trach and mimiques sounds we make. 
She has been smacking her lips which is a great sign of her verbal development.
She loves playing Patty Cake with her babies.

Medical Updates:

Results of the CT scan showed that Cheyenne does not have the RAMUS section of her jaw on the right side of her jaw. This means she will not be able to get a jaw extractions (which is what I was hoping for).  Instead doctors want to wait until she is 4 years old which then they will transplant a bone from her leg or mabe her rib to replace that bone.



This means she won't get her trach out until after that.  Meanwhile, we have decided to get some help for her to start learning English Sign Language.  Yesterday I met with the lady that will be coming to teach us.  I didn't realize that there was so many different types of sign languages.  Cheyenne will be learning the English Sign Language which seems to follow grammar rules.  I guess the regular ASL does not 'transalate' exactly as we speak.  Since Cheyenne can hear and will eventually be able to speak, we want her to learn the proper way to speak. 


In about a month Cheyenne will be having her 4th surgery. This one is minor compared to what future surgeries.  This one will correct the corners of her mouth so that she can control her food or liquid inside her mouth.  When she was little and she would drink her bottle, she couldn't quite seal her lips around the nipple and most of it would drible down the side of her mouth.  It was always tricky and messy. 
During this surgery they will also caterize around her stoma for her trach and her G-tube.  With time, scar tissue and granulation grows around it and so this will just clean it up a bit.

She weighs a whole 17 lbs!

Other News:

I have started to work for Jet Blue.  Will be working part time, and from home. FREE flights for everyone we know anywhere you want to go! Just kidding no such luck.