Rare Disease Day!

Today is Rare Disease Day, and Chiari is one of the conditions on that list. Please wear purple today in honor of Kaylie and all the other Chiarians. To learn more about rare diseases, please visit www.rarediseases.org or to learn more about Chiari you can also visit www.asap.org.

Feb. Oklahoma Chapter ASAP Meeting

I had an amazing ASAP meeting this past Saturday!!! We had a huge turnout, and Kayla Bower, our guest speaker on SSI/SSDI was wonderful!!! I think I need to make an area for all my meeting stuff on this blog, I will have to work on that, with all the rest of the things I say I am going to do to it! Below you will fins my meeting notes, and all the handouts that were handed out.

• My Feb. Meeting Notes
• Feb. Meeting Agenda
• Financial Resources
• Reducing Your Medical Bills
• Traveling for Treatment Assistance
• Fundraising
• TEFRA
• Redlands Partners
• Benefits For Children With Disabilities 
• What You Need To Know When You Get Supplemental Security Income (SSI)
• Your Right To Question A Decision Made On Your Supplemental Security Income (SSI) Claim
• A Guide To Supplemental Security Income (SSI) For Groups & Organizations
• Kayla Bower

The picture above is of an awesome pencil, they come in pens too. They are called Twist n' Write, I talk more about them in My Feb. Meeting Notes. (same as above)

I will miss you Barbara....

Kaylie is finally doing better!!! I was actually going to send her to school today, but school was canceled, due to some ice. I think occasionally her throat still hurts, like when she eats, and she did wake up in the middle of the night last night... but Motrin & Tylenol can take care of that.

On another note.... I found out last night a dear friend past away. I had just met Barbara in person back in August. She went to my church, had heard about Kaylie, followed her blog, and sent cards to Kaylie. It wasn't till I announced that I was starting the Oklahoma Chapter for American Syringomyelia & Chiari Alliance Project (ASAP), where we got to know each other better. I have talked about her several times in past posts on here. She had Scleroderma, which is a condition of hardening of the skin. She was on O2 because of it. She was very involved in her Chapter here in Oklahoma for the Scleroderma Foundation, www.scleroderma.org. Even though I only knew her for a short time, she made such an impact on my life. She taught, and showed me how to fight for Kaylie's condition, and that it can be done, that we can better inform the medical community about these conditions that are not spoken or seen that much of.  Kaylie & I had attended Anointing of the Sick sacrament one Saturday evening with her. It was very emotional for me, in fact I have never taken Kaylie back, because it was so hard. She understood why it was hard, she understood my thoughts on dealing with this chronic illness... my worries, my fears. Don't get me wrong, I'm glad we went, it was beautiful. It was just hard for me, because Kaylie was the only child, and it put a lot of things in perspective to me.
I just wish I could have said good bye, or tell her again how much she meant to me. R.I.P. Barbara, you were a beautiful lady!!!

......And she is vomiting again!

Tired!

I thought we were on a steady path to healing the other day, I was wrong. Yesterday sucked! Pain was under control, but she was so nausea, that she wouldn't eat anything. I think all she had yesterday was a half of a popsicle, and a little pudding. She did drink plenty of fluids.... I just hate that she feels like this, and there isn't a whole lot I can do. Just a slow healing process, I guess!

Hearts....

I think we have finally hit the start of a calmer week.... I think! Kaylie is doing "ok", it has been a extremely rough couple of days. I can't believe I would almost say this surgery was a lot harder than her brain surgery... yes, I sound crazy!! I have also come to appreciate why IVs/fluids are so important, and are taken for granted. Everyone hates them, kids scream about them to be taken out.... but they are a blessing. Kaylie vomited so much that first day and night. I think it was a mix of anesthesia, empty stomach, and pain meds that put her over edge. It was a non stop cycle of getting her to stop vomiting, getting her pain under control, and putting food in her belly.... But finally we have it down to a system!! I seriously thought I was going to have to take her to the ER yesterday, but just didn't want to go that route yet. I kind don't understand why a tonsillectomy is an outpatient procedure.... my personal opinion, was that she should have been there overnight one night... or at least till vomiting had stopped, and pain was under control. But.... who am I, right!

Anyways... I am happy to say she is doing better, and my kid is not the average tonsillectomy child who wants ice cream, popsicles, ice chips... things that are cold. She wanted warm items.... like soup, and mash potatoes. Which kind of got me wondering, and especially after talking to a few of my Chiari friends.... Kaylie usually goes for the warm things, over cold items.... hence heating pad for headaches, not a bag of peas.

On another note... this week has also taken a toll on me. I feel like I have questioned everything I do... or want to do. I don't know if I am feeling this way because of everything going on with Kay... but boy, I feel like I have been hit by a truck! I have to tell a blog friend Stacy... Thank You for the emails, and especially for listening to the email from today.... and a special Thanks to Amy for listening to all my texts!!! You are always a great support!

And one more thing.... please keep a special lady named Deb in your thoughts & prayers the next few days. Deb is 58, and is having her chiari surgery tomorrow, on Valentine's Day. I have been talking to her good friend Karen through email, that i met through this blog. Deb, please know we will be wearing Kaylie's Chiari bracelet in honor of you tomorrow, and we will keep you in our thoughts and prayers. Hoping for an uneventful surgery and a quick & smooth recovery.

I hope everyone has a wonderful Valentine's Day, and enjoy a sweet treat! I saw these cute cupcake on Pinterest... and thought they were perfect for a Chiari!!!

Kay will miss her Valentine's Day party tomorrow at school...
so we will send her cards to school with her big sister Abby to give to Kay's teacher!

We are at Home!

So, Kaylie is home now... everything went well. She did wake up out of anesthesia very mad, and violent. She was hitting & kicking the nurses and I. I have such a strong side, or front that I put on... but when t comes to coming out of anesthesia.... I break down. I hate seeing her that way, I feel so helpless. But, I'm glad its over with, she is at home & sleeping and hopefully she will no longer get sick all the time now. Thanks for your thoughts and prayers.

Tonsillectomy

They just took Kaylie back....
It's going to be a long week. Ben's schedule is different this week due to a training he is going through, but the positive is that he will be at home at night. That will be a big help.

I hate surgeries.... I'm on edge. I know everything will be ok, but I'm still on edge. The ENT doctor said that its a long recovery, and that somewhere between day 5 and 7 the scans will fall off... An that 1 out of 20 bleed, and need to be re cauterized. I pray that's not Kaylie's ordeal!!!
On another note I have educated 3 nurses and one anesthesiologist what Chiari is. There really needs to be more education on it. We have a RN in my Oklahoma group, who is a chiarian... She told me about seminars that are put on by the hospitals for nurses and what not.... Think I will look into that more.
This sucks! I'm a writer when it comes to stress.... And I have nothing to write about right now!!!

ENT News...

Today Kaylie saw the ENT. He is wonderful! He is the same doctor that did her ear tubes, and adenoid removal when she was two. We talked about how she has been sick 4 times in the past six months... he said 3 times in six months is too much. He recommends her tonsils to be removed. So, Feb. 11th she will have a tonsillectomy. I told him all about her Chiari, and he was very interested in learning more about it, even asked questions about her symptoms before surgery. I gave him the ASAP handouts & brochure, and also a new post card I had made for our Chapter here in Oklahoma. Its just a card that on one side says what Chiari & Syringomyelia is, with a diagram, then on the other side states that the Oklahoma Chapter meets every last Saturday of each month as a support group. It also as place & time, along with my contact info... and ASAP's website.

Worried...YES. I know its a minor surgery... I just worry, I can't help it. I also worry about having to tell her about it. I don't want her to think its anything like her last surgery. Ben & I have decided that we probably wont tell her anything till two days before or night before. If we tell her any sooner, I think she will worry herself sick.

But, hopefully this will all be a positive outcome.... I know she needs this done, she is sick too often. So, hopefully this will take care of all that.

Working on a lot of new project ideas, one of them is getting all the kids together in our Chiari group, for a fun activity, sometime in the spring. I have also been working on packets to go out to the medical community about chiari & syringomyelia (I should talk more about that condition one day... I guess I haven't because Kaylie doesn't have it, but it is very related with chiari, the two practically go hand and hand.)
I have also come in contact with a few new moms, from this blog... when I read their emails, and stories.... it brings me back to those beginning days, and how much we have overcome. I'm glad I can be there to support them, the moms of children with these conditions really form a bond. All though we don't meet... we worry about each child. I think some of the moms in the Internet & Facebook groups forget that, that we are all here to support each other. Sometimes too much information is a bad thing... I try really hard to let moms I talk to ask me the questions... and for me not to overwhelm them with so much information.
Anyways, just thought I would give a brief update, about our ENT appointment.... days I don't look forward to!