Genetics---HUH, what, I DO not speak your language... & BEACH update

Genetics "people" continue to amaze me...We received our test results last week. Kenadee has two broken genes...none of which my results showed. Dennis' tests revealed that the same two broken pieces that Kenadee has, Dennis does also. This is a mystery as Dennis doesn't have any of the characteristics that Kenadee has. We now go back to the drawing board so to speak. The geneticist from ACH will be meeting with us towards the end of April to discuss what happens next. 

I teach third graders and most are learning English. When I talk to genetic counselors & geneticists, I'm reminded of what they feel like..."huh, what, I do not speak your language."

BEACH UPDATE! **total raised $1,250**

 We are so stinkin' lucky to know people read our story and feel the need to help! Our Facebook fundraiser has raised $550. We have had another $500 donated from an organization whose founder is a mom of two special needs children, and we've  had $200 donated from friends.  Our condo is paid for!  Now, just gas (fingers crossed gas isn't $5 a gallon), and food & we are on our way!

I was worried about taking Kenadee 13 hours away from her doctors and our support group.  At the same time, life is too short to worry about the "what-ifs?" God is working through people and allowing us this opportunity, which would otherwise be impossible. Hospice is helping get equipment set up & we can call her neurologist anytime we need her! We're taking our baby to the beach & what a wonderful memory that will be. We can never thank all our supporters enough....THANK YOU from the bottom of our hearts xoxoxo! 

Oh.my.gosh!!

A very good friend started a FB page on Sunday called Hope For Kenadee. Our dream is to take Kenadee to the ocean. With the way life is right now, having the $ to take her is not realistic. We started a "Take Kenadee to the Beach" fundraiser. I struggled because I like to be the giver of things, not the receiver. I also know that God has placed Kenadee's story on people's hearts everywhere. The fundraiser has raised $440 as of today! That is amazing and here comes the best part!!!!!!......

I got home from the gym (aren't you proud), & there was some mail for me...the usual oil change coupon flyer & a catalog. Today there was also an envelope addressed to me. I opened and immediately ran to find Dennis. It was a letter from a mom who is president of the "Happy Like This" foundation in Siloam Springs. The letter told her story of being a mom to two special needs kids and the struggles that she also faces! She'd heard that we wanted to take Kenadee to the ocean (prayers for Kenadee's health), and went to the board of her foundation. They were touched by Kenadee's story and wanted to help. THEY SENT A $500 GIFTCARD to help make our wish come true!!!! That means we've raised almost $1,000 in three days. We are so blessed, even during times when it feels like the world is caving in around us.

I booked the condo today and am getting my baby to the ocean whatever it takes!

Xoxo

Thank GOD!

Today we met with Kenadee's pulmonologist, Dr. Menendez. It was a good visit..which feels are few and far between for us. On oxygen, Kenadee is breathing much easier and her heart/respiratory rates looked great! We continue to pray for a miracle in Kenadee's life & feel that today many prayers were answered. xoxoxo....

Quiet your mind...

Thank you Zac Brown Band for those little words....I wish there was a magic pill, food, drink...something to quiet my mind. Since Kenadee's latest decline, her pulmonologist (lung dr), set up an apt for us Tues @8:30. I know it's not good news...not loosing hope or faith but I just know.

There's so much red tape with medical stuff...it breaks my heart that someone's life can be treated like a business transaction. We met with Circle of Life social workers & nurses and they were great. It's just hard for me and my family to even grasp that my daughter is in Hospice...of all the things I wish could be sugar coated somehow..it would be that " hospice." They brought us some info and a green bag with their logo on it. After they left, I immediately hid it in a closet. Who wants to be reminded even more that that's the stage of life their loved one is in?

So, Zac Brown..I am trying so hard to "quiet my mind, soak it all in, and enjoy the ride." I just wish this ride was one that lasted forever.

A daily sermon...

Kenadee is "a gift, a teacher, and a preacher...she is an instrument of God, she is a living angel...through a little body, so broken & frail, she possess God-given strength...unable to express by speaking, she preaches us a daily sermon..."

How grateful I am to know & be Kenadee's mom...

Oxygen

So, we'll get to go home today from Mercy 511...This time, Kenadee will need to be on oxygen at home. Room air isn't enough for her & she's working too hard. We've been told this would happen, but actually witnessing it is different. Her doctors say this is the natural progression of her disease and I say it sucks.I don't know how else to say it.

My newest mission is to find a way to take my angel to an ocean. It's weird because I feel like I'm running against time and there's so many things I want to do, experience, & show her...I just love her so much.

Exhale....

So, Friday night was the scariest one yet. Kenadee's oxygen levels dropped, fever spiked, & her body started to tremble....nurses, doctors, respiratory therapists ran in & started hooking her up to machines and helping her. I stood in the corner and watched like I was an on-looker into someone else's life. She responded well, oxygen levels started going up and she got "better." We were qqthen given a nurse assigned just to Kenadee which felt like sunshine hitting my face...

I think what made it more scary was this followed a recent pulmonary apt in which we were told respiratory issues would be what takes our angel from us. Sometimes I feel selfish wanting to keep her on this earth suffering in ways that I can't even imagine. I remind myself that in life, there are no do-overs, and that I have to spend each day with Kenadee to the absolute fullest.

Exhale