The Heart...

Kaylie had a cardio appointment this past Thur. Was to check out her murmur, that she has had for a long time, to clear it for surgery. We did this two years ago as well. Something came up on her echo, at first the Cardio PA called it “casting” kind of like scar tissue…. I think it was originally thought this b/c they thought she may have had a PICC / Central Line from her first surgery. But Kaylie did not have one. Another Cardio doctor looked at it, and it is located in her very top of her right atrium, and it’s stuck to the wall of the heart. They think its either a blood clot or and infection. They told us if it is a clot, that we don’t need to worry if it got loose, it would not travel to the brain, it would go into her lungs. They think her lungs could handle it, b/c of its size. Then the next day on Friday, we had to go back, and Kaylie got a blood culture done. This will tell us if there is an infection in her blood, to have caused an infection in the heart… if its not an infection, it could be a clot. Then we will go from there.
My thoughts: I’m hoping its an infection… that the only logical thing I could think, b/c she did have the Flu/Strep a few weeks ago. The culture takes a week long. Im not sure where this is going to put us with everything. The PA, thinks she will still be able to have surgery, but we will figure out everything after we find out the results. 

How am I??? Im upset. Im scared. I know they told me not to worry… but to be honest, how can I not. If its one or the other… neither one should be there. Im just really hoping we aren't starting on another issue in life… 

The day we went for the blood culture was her Valentine's Party at school… her class party was in the morning… so we went to the party, then went to get the blood culture done… Kind of symbolic since it was heart awareness week! 

Making Lists….

As we are a month out for surgery, I don’t think many people understand how much is involved when traveling for medical treatment for your child. Your travel arrangements should already be in place at this point… flying or driving. Where will one stay… I highly suggest the Ronald McDonald House organization, when traveling medically with children. This is a great, supportive organization. How will you travel once at your destination? Packing list, including a special list for while in hospital care. Your “medically needed child” is covered… but then there is this whole other list for life at home. If you have other children, will they be going with you (if they are, is it really appropriate to bring them?), or will they be staying with family or friends back home? Your other children still have an active schedule… sports, church, activities… are these things in place? Do you have a Medical Consent Form filled out & Notarized for the caring people that will be taking care of your other children while you are gone? This is a very important one! If your child needs to be taken just to your regular pediatricians office or even the ER, these places have to have Consent to even treat your child. This form is also great to let ones know what medical issues or allergies your other children have.

Then… Pets.. do you have any?? They need a place to stay or a caregiver as well.

Today I'm getting Kaylie's blood work faxed to the hospital, getting our Medical Consent forms notarized for my parents, planning out our next few weeks here at home, making packing lists…. I am a very organized person… I have to be… if I don't have these lists… I'm afraid I will forget something. 

Lots to get done…. So little time.

Lots Going On… And Only A Month Away.

I can't believe we are at the month out mark… it will go by so quickly. There is so much to do, and a lot going.
Last night was the Daddy/Daughter Dance.

They had a great time…. and I know Ben cherishes these moments.

So we have several fundraisers going on… thought I would touch base on them all.
Kaylie has a GoFundMe Account, you can visit the link here: Kaylie's GoFundMe

We are still doing "Flocking for Kaylie" with the Purple Flamingos. "Contact Us" if you would like to Flock a friend.

On Feb. 26th, there is a private paint party by: Paint it Pretty… if you are on Facebook, here is a link to the event: "Paint it Pretty for Kaylie"

And Stacy, a sweet Chiari mom, sales Thirty-One Gifts, and wants to do a fundraiser for Kaylie. Again, if you are on Facebook, here is a link to that event: "Thirty-One Gifts for Kaylie"   ~OR~ You can go to the direct Thirty-One Gifts Party Link: https://www.mythirtyone.com/shop/catalog.aspx?eventId=E5447056&from=DIRECTLINK

We thank everyone so much for their continue support for Kaylie, and our family. It is much appreciated. 

What is with all the Purple Flamingos?!?!?

Did you wake up to a flock of Purple Flamingos in your yard… or was the above the scene in your neighbor’s yard??? This is “Flocking for Kaylie”… 

**Note: If you are a homeowner with flamingos in your yard, please check the "info tube" on the sign. 

“Flocking for Kaylie” is a fundraising event to help support Kaylie Barnes. Kaylie is a 2^nd grader at Truman Primary. March of 2012, Kaylie was diagnosed with a brain disorder called Chiari Malformation (Kee-AR-ee). Chiari is a congenital anomaly in which two parts of the brain, the brainstem and the cerebellum, protrude through the opening at the base of the skull. She suffers from many symptoms of severe headaches, ear pain, eye pain, fatigue, light & noise sensitivity, clumsiness, and Aphasia (word finding, word retrieval and recall issues). Her parents sought out a pediatric neurosurgeon highly experienced in this condition and related conditions, which is at The Chiari Institute of New York. In July of 2012 she underwent a brain surgery, surgery was not a cure; it helps relieve some of her symptoms and the progression of this disease. Since the surgery things have gone well, till this year, some symptoms have returned, some new, and some a little different. This past fall Kaylie had a few different MRIs, which showed she has a related condition to Chiari. She has Retroflexed Odontoid Process, and will need a cervical fusion of the neck. On March 11, 2015, Kaylie will have this surgery. To help off set the cost of travel and medical bills we are fundraising for Kaylie. 

Why are the flamingos purple??? Purple is the Awareness color for Chiari & Related Conditions. 

Join us in a Flocking Fundraiser for Kaylie! If you live in the Moore/Norman area of Oklahoma and would like to “flock” a friend, please contact us here, and we will send you the order form for flocking! It is a $25 donation to flock a friend.

Flocks may not migrate outside the Moore/Norman City Limits or onto public property or apartment complexes. Flocking is done in Good Spirits and is not meant to be malicious. The last flock will migrate North on March 1, 2015.

Please pass on to your friends the excitement of being “Flocked”!!! And thank you for supporting Kaylie!

You can read more about Kaylie on this blog, or you can visit her Facebook page “Kaylie’s Chiari”.
You can also make a donation through Kaylie's GoFundMe Account or donation can be sent to:

BancFirst

Kaylie Barnes Benefit Account

600 NW 5th St.

Moore, OK. 73160

Friends Flock Together!

A better day….

My last post was ….blah! Sorry, I hate those bad days, getting out of them is really tough. I'm trying to keep myself busy, to help keep my mind off of things…. easier said than done. But, for Christmas, Ben's dad & step mom got us a Home Depot gift card, so it went towards our living room.. we are painting it, and restraining the fireplace…. so this is what I have been doing. I love doing these projects…. I literally feel like I can go off into another world for a little bit.

Kaylie had a good week last week. Tues - Thur she stayed at school the whole day those three days. Friday… was not such a good day. We take what we can get. 

We are having another fundraiser, Feb. 26th. A Painting Fundraiser. It will be a private paint party, with 50 ticket seats available for purchase. A percentage of it goes towards Kaylie. If you buy a seat, you get to choose between these two amazing painting to paint.

Amanda, of "Paint it Pretty" out of Noble, Oklahoma is helping us put this fundraiser on. If you would like to attend… check out Kaylie's Facebook page for more details.
The Flamingos are still going!! They have been a huge it! But, who wouldn't like to see a flock of purple flamingos sitting in some one's yard?!?!

Today, Kaylie went and got some of her Pre-Op Blood work done. She did really good. Was scared at first… but did good.