Thursday, July 24, 2014

Two Years and STRONG!

On July 27th, Kaylie will be two years post op…. I can't believe its been two years. The first year after surgery I felt like I was on constant guard, and was the biggest mama bear. I felt like our life was controlled by everything Chiari. What a difference two years makes! I have learned to let go... And move on with our life! Don't get me wrong, I still worry.. What mom wouldn't? But Kaylie has also changed in these past two years. She is more mature, and well aware of what her limits are. Our family is still very much apart of Chiari awareness, but we are moving forward too. Kaylie played softball this spring…there was always  a parent at practice and games, so we were there to watch over her safety. She was fine! We even allowed her this year to go ice skating at a birthday party this year. She did great! She wore her bike helmet and had a walker like object to hold on to. Needless to say, we know her limits, and so does Kaylie, which I think is great… as she gets older she needs to know what she can and can't do. As for her scar ….. it looks just the same as it did at her 1 year post op…. maybe even a little fainter. I kind of think as she gets older it will said more & more. The only time I really notice it, is when she is swimming, and her hair naturally parts down that scar line. She does still have symptoms… headaches are her biggest issue. I continue to log her symptoms… and they are far from how they use to be. August 5th, she will have a brain MRI. This is general post op care. We will get the images, then send them to Dr. Rekate to review. In all… things are still good.

We went to Disney World for vacation. Had a great time, very Thankful to Ben's brother for inviting us to enjoy their timeshare. As for Kaylie & rides there…. I did have a "do not ride" list…. basically I went off of Disney's health advisory list. How to do this… go to Disney World site, click on "Parks & Tickets" choose a park, i.e.: Magic Kingdom, scroll down and click on "Attractions". Once the new page pops up… at the top of the page you will see different things you can check to narrow your search. Go over to the very right side, where it says, "Accessibility & Advisories"…click on "more options" and at the bottom of that list under "Physical Considerations", there will be a link called "Health Advisory". Once you click on that, it will show you all the rides that have a "Health Advisory" on them. Their "Health Advisory" says: "WARNING! For safety, you should be in good health and free from high blood pressure, heart, back or neck problems, motion sickness, or other conditions that could be aggravated by this adventure. Expectant mothers should not ride."

Most are roller coaster like rides… there were a few that I did let her ride that were on the lists…. example the Tomorrowland Speedway… She drove, but I controlled the gas & break, also the Buzz Lightyear's space ranger spin… its a self turning riding by controller, and she didn't do it that much. There was one ride at Magic Kingdom that does not have the health advisory, and a part of me thinks it should. Was the new Seven Dwarf Mine Train. This is a new type of roller coaster ride… smooth track kind, the turns, and sharpness of the ride is suppose to be smoother. We rode it… once. My husband agreed it was fine…. I still think the ride possibly should have the advisory on it. She was fine afterwards, no issues later that day/night, wanted to ride it again… but once was all we did.

I think the best advice I can give on rides is that you as a parent ride it first… then if you feel like its not safe skip it. We have been to Disney a few times, so I knew what rides were "OK" and the ones I was going to say "No" too. We talked about them to her before the trip, so there would be no issues at the parks. I truly think that's the best thing one can do is plan it out for your child, and explain why you are not allowing them to ride. Prepare, if your with other family members that are riding those rides, what to do while waiting. Example… I didn't tell Abby no to rides, just because of Kaylie & Mason… while Ben, Abby & the rest of our family went on Space Mountain… Kaylie, Mason & I went on a different ride close by. It worked out great. Also, two rides in Epcot have waiting areas for people that are not riding. Mission Space… go through the store, and through the "exit" part for riders, and you come to a game station and small child's playground. Kay & Mason had a blast in there. Then at Test Track… same park, Epcot…. also go through store, and exit for ride… and there is an area where the kids can build a car digitally on a computer, and they have about 8 real cars "for sale" but kids can get in them, and pretend they are driving them.
Needless to say, we had a great time… and Disney can be done with this condition!

In other news…. the past few months I have been thinking about going back to school. I don't want to go into nursing anymore, but still wanted something in the medical field, something better for Ben's work schedule, and where I could be a little flexible if needed for the kids. I have decided to go into Diagnostic Medical Sonography. I have 3 courses to finish … one being the Human Anatomy & Physiology class I dropped when Kay was diagnosed, then I can apply for the program. Its a 15 month program. I start this fall with two of the classes, then one class in the Spring, and will be applying for the Fall '15 program. I'm excited, and of course nervous…. but I think this will be great.

Other than that… I am still preparing for the walk in Sept. Really excited about it, should be a lot of fun!! If you would like to register for the walk, or sponsor a walker you can go here. 

Saturday, June 7, 2014

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! 
From our family to yours…. I hope you have a great summer… and I promise to try harder to keep the blog updated! ;)

Monday, March 24, 2014

Looking for Sponsorships

I am currently looking for corporate sponsors for the OKC American Syringomyelia & Chiari Alliance Project Walk & Roll for a Cure. If you are a buisness that would like to sponsor the walk, please contact me at oksupportgroup@asap.org


Tuesday, January 28, 2014

Get your Walking Shoes Ready!!!

I am happy to announce that on September 20th, 2014, I will be hosting the 1st Annual Oklahoma American Syringomyelia & Chiari Alliance Project Walk & Roll for a Cure! It will be held at Earlywine Park in Oklahoma City, OK. Details & Registration to come soon!


Tuesday, December 10, 2013

Spider Elfy!

I saw this done on Pinterest, thought it was cute, since my little man is really into heroes and what not. So last night we go to bed… and Ben is all, "going to do the elf"? UHG… I had forgot again! So I jumped out of bed, and we threw this together…. a little disappointed in myself, b/c I am always about the details… and these details..Suck! Ben was all… where is his blue pants…. Anyways… Mason still got a kick out of it…so that's what counts!

Monday, December 9, 2013

This Elfy is Behind!

Sorry for not posting the latest "Elfy" lately…. but I was too busy having fun with my family! Thursday night Elfy laid low… just hanging in the tree.
Friday morning brought us lots of snow and ice…. and a snow day from school! Ben also happened to take off Friday, Saturday,.. had Sunday off…. so we had had some fun planned for the weekend!
Mason, who is only 4 has been having trouble cleaning his room. I literally bribe him with either a bubble bath or a movie to get him to clean his room, well after two days of no cleaning… I was desperate, and since he is a "believer" this year (meaning really into the whole Santa thing)… I did this one:
It worked… with a little help of the bribe "Want to play in the snow?"
We played in the snow, came in for lunch and hot chocolate, then played some more, decided to go sledding, came home to make and decorate Christmas cookies and then had a yummy dinner of homemade chicken and noodles. Perfect Winter Day! Saturday Elfy brought us another fun day….

Elfy brought us a letter giving us another Family Fun Day, with Polar Express Tickets. We went to go see Santa at Bass Pro (Free by the way), went out to dinner and dessert. While we were gone, Elfy brought dessert… stuff to make Smores with, and Ice Cold Root Beer! The kids loved it. I got the cute printout "BELIEVE" tickets from a cute blog called The Crafting Chicks. It was a fun evening.
For those not familiar with Santa at Bass Pro… Its Awesome! Santa is there, with a cute background. They will take a photo for you, and of course offer packages to buy, but they give you a Free 4x6 photo. You are also aloud to take photos with your own camera! Bass Pro also has all these kid activities set up, games and crafts. To find out more, or find your local Bass Pro Shop visit them at here.
Sunday Elfy laid low again…. was just too tired to do anything crazy…. and then we forgot to move her last night for Monday…. Yes, the parents dropped the ball.
Tonight I will do something fun… its actually one I saw on Pinterest flipping through holiday decor… will post her after the kids go to sleep… may be awhile, its a snow day again tomorrow!
Oh… because I have gotten a lot of emails of my Elfy being repined on Pinterest…. if you are looking for those… may want to click on last December… on the right hand side. When I had posted those on Pinterest I never embedded a direct link to them on their posts on my blog. This years, I'm not pinning, or facebooking. Anyways… enjoy!


Wednesday, December 4, 2013

TP Time...

I almost forgot to post last night's craziness from Elfy!!! Lets just say she gave Abby some extra attention!