Hanging Low and Invisible: Living Life...

People/patients of illnesses always want to know why they don't hear about all the success stories, and they only hear the bad ones, or the ones that still complain about issues. Talking to some of the success story people it seems we all just get wrapped up in living life. I made a huge promise to myself and to this blog that I would keep up with it…. haven't done the greatest job on that. I can honestly say that my excuse is that I am so busy with general life, and everything Chiari that I am involved in, I just don't have the time…. or I keep putting those times I have "set aside" for another time.

The other "excuses" I hear about (which by the way… I don't care for the word "excuses" … maybe I can't come up with the right word)… is that many success story patients/parents of patients feel like if they stay involved… that something bad will happen. Has my friend Brenda likes to say, "waiting for the next shoe to drop". I get all that… for a long time, I felt if I didn't wear Kay's bracelet… something bad will happen. I still feel like that sometimes, I will put it on, almost to have that extra "support"… my crutch.

Just my thoughts for today…. why Ive been so absent! ;)

On Life note… I feel like I don't have enough time in the day to get everything done!! So I have been really busy with ASAP (American Syringomyelia & Chiari Alliance Project). The OKC walk is coming up in just 4 months!!! I am so excited. Mark your calendars: Sept. 20th, Earlywine Park in OKC, OK. Registration starts at 8am, walk starts at 9:30am. If you would like to pre-register, you can go here.

The shirts are going to be purple… they look great, the writing on them really pops!

We have had a lot of great donations for raffle… movies, pizzas, dinners at restaurants, Disney World tickets… the list goes on! We also have some amazing Sponsors: Dr. Rekate of TCI in NY, Dr. Stetson of Neuroscience Institute in OKC, Dr. Cook of OKC, Warren Theatre, … this list also goes on and on.

We have so many fun activities for the event too. We have a kids area with temporary tattoos, bubbles, games and a kids raffle too. We will have Bricktown Clowns out there, Photobooth, and an amazing photographer for the event.

So, yes I have been very busy!! I am still doing support group meetings too. I know hold them bi-monthly, much better for me. We just had one this past Saturday… May 31st, at Southwest OKC Library. We had a great guest speaker: Dr. Nate Stetson, speaking on Tethered Spinal Cord and Occult Tethered Cord. Our next one will be July 26th.

On a Non-Chiari note… kids are out of school now. Mason got into our home school for Pre-K, so all three kids will be at the same school…. EXCITED! Mason continues to do private speech therapy with Baker Speech Clinic…. Can I say how much I LOVE Sara Baker!! I do! Mason has really made some progress. He was also doing speech therapy with Kelli from our old school, but now that school is over, and we have moved… we can't continue with her. She will be so missed. Kelli has no idea how much she means to our family… the support she has given us over the years, are unexplainable. We are FB friends… so we will stay in touch!! For those that don't know, back in Dec. Mason was diagnosed with Apraxia speech.

Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe. (This insert was taken from NIH, more info found here.)

We aren't sure if his Basilar Invagination is the cause of it, there is a good possibility that it is, but with him getting better with therapy is a good outlook for us. Mason is playing T-ball, it is so funny to watch! Kids running in all directions, trying to get to the ball first (just to hold it… not through it where it needs to go! ) He is having fun! I want this to be his sport…. soccer (head bunts) and football are out of the question. With this BI he has… he can't.

Can we say, "All Boy" … this is who I see on a daily basis… either
Darth Vader, Spiderman, or some other super hero!

Kaylie is good! I'm really worried about starting a new school, implementing her IEP, her speaking up for herself, and of course meeting new friends. I try really hard not to worry about her…

Health wise, she is doing good. Um, she still gets headaches every once in awhile… about 5 to 6 times a month. I keep a log… constantly. Its actually a cheap 8x11 month to month calendar… and I just write in her symptoms on the day they happen, sometimes I will jot down the weather… I have noticed that most of her headaches come on about 2 days prior to a storm or front. It has to do with the barometric pressure. There is a great link that you can actually pin point on the hour of the BP change. It's: weather.gov When you go to the link, you will type in your zip code in the left side box, your current conditions will then pop up… and if you click on "3 day history" on the right side… another page will open, and you can check if the pressure has changed. It actually looks like it posts every about 15 to 20 min. And of course here and there she will complain about a few different things… like her eye hurts, tingling feeling in her feet, dizziness… I keep track of it all, and stay in good contact with Rekate and her pediatrician on all this. Kaylie actually has a MRI scheduled for Aug. 5th. By the end of July she will be 2 years post-op. I can't believe how time has gone by.

Kaylie is currently playing softball. Some may say… seriously? But she wears a helmet, Ben & I are always at her practice and/or games… so we are there to watch for her safety. We are really trying not to "bubble" her. I want her to live her life as the child she is. Yes, there are a few limitations… we don't allow her to jump on trampolines, bounce houses, no roller coasters or rides that cause a whiplash movement to her head/neck. We make her wear helmets when riding her bike. And she is ok with this, she also knows her limits. That's the point, is for her to learn them and know why. Anyways, softball is going great! Life is going great for her right now!

The girls and I ran in the Princess Run & Little Dude Dash at the beginning of May… our first run, and we did great. Abby, not a long distance runner… but Kaylie… this is her thing. She has been wanting to run in a marathon… so we decided to start with this one… it was only 1.5miles. I think when it cools down in the fall/near winter her and I may do a 5K. She does great at them, LOVES them. She is really a great runner.

Abigail is great! My mini me! She defiantly has her mom's thought process and attitude! lol Abby is doing great. She just turned 10, also playing softball, and is really good at it! She has kind of decided to play softball instead of gymnastics. I told her to give it the summer, and think things over. She is excited about going to a new school in the fall, has met a lot of new friends on her softball team… she's just living life.. grand!

Ben is good! Working all the time… we are really enjoying watching the kids play t-ball & softball, even though we live at the ball fields between the three… its fun. The only other news is we have a new member in our family! Coco our new Chihuahua! We rescued her from a family that no longer could take care of her. We have had her since a little before Easter. She is about 6mths. She is also a long hair chi. One ear has come up… the other is struggling! lol Ben thinks it gives her character. She is awesome… the kids love her, and she wears them out, and vice versa! She kind of goes everywhere with us. We are planning on taking her on vacation with us later this summer.

This pic was taken when we first got her….

I hope all our readers are doing great… and any new ones, please contact us if you ever have Chiari questions. I have had several in the last few months contact me… after finding Kay's blog. They are always saying they weren't sure if they should try to contact me, and are shock when I respond back. But I am here to help…. Finding out you or your child has these conditions can be a very scary time in life. Sometimes you just want that feeling that your not alone. And let me tell you… if you live in Oklahoma… Your Not!!! There are about 250+ patients here. We always have a great turn out at our ASAP support group meetings, and we have a group on Facebook… so there is always support, and information!