In 3 Months….

Sorry it has taken me so long to give an update. There was a part of me that took some time for myself, talk to family, and I more less wanted the date set before saying too much.
We had our Skype with Dr. Rekate, as always it's so nice to have a caring, compassionate doctor that wants to help. It was everything we thought would be said, along with a little bit of new information. Kaylie is very unstable in her cervical spine. There was a lot more details, like measurements, talks about her symptoms, but the bottom line is that he suggest a cervical fusion surgery for her. He said sooner rather than later, but could wait till school was out. Ben & I have thought about many different options, but think March would be best. Our thoughts on this is that we could pull her out of school for the rest of the year (about 3 months), when we return home from surgery she could be home bound schooling, time summer came, her summer wouldn't be ruined, and time mid-August, she would be able to start the new school year. With that March was decided on, and today we got hospital confirmation, March 11th.

The cervical fusion would involved her being fused from Occiput (bottom of skull) to C2. Something we learned during our Skype consult was that her C2 and C3 are naturally fused. This is actually called Klippel Feil Syndrome, but Kaylie has a very mild form of this syndrome. Nothing will be done to this… I have asked if it will have to be broke a part (while in her fusion surgery), but the answer was no. Kaylie will spend 5 days in the hospital, then a week at Ronald McDonald House, until we get the clear to travel home. Much like her first surgery. Speaking of her first surgery her decompression… it looks fantastic!!! Dr. Rekate was very happy with how everything has turned out with that part.
So this is a little bump in the road, we have always known this was a possibility… Dr. Rekate does think this fusion surgery will help her greatly. Her current symptoms are headaches again… mainly frontal, and on the right side. She also has been getting ear & eye pain, along with sometimes having blurriness in the eyes. She tries really hard to be in school, she loves school… and we are very fortunate that Kaylie & her siblings have a very understanding and supportive school. Kaylie also has a great school nurse!!
Before our Skype appointment, I got a copy of her attendance report… she had left early or missed the entire day of school over 29 times since school started. It is kind of like last time, she is just progressively getting worse, or the symptoms are getting worse & more frequent.

I have decided that I will keep her Facebook Page "Kaylie's Chiari" updated more… I think it will be easier, and better social media wise. So please follow us, "Like", and "Share" her page. We also have a "GoFundMe" account set up too. Ben & I have a really cool fundraiser planned, she is excited about it also… we will start that in January. Till then…. thank you for all your thoughts, prayers, good vibes, and your support. She is a strong little girl… she will get through this!

ASAP's Next Meeting

Oklahoma's next ASAP's support group meeting is Nov. 8th, at 1pm, the Southwest OKC Library: 2201 SW 134th St, Oklahoma City, Oklahoma 73170

We have a guest speaker that will be talking to us about using essential oils as an alternative therapy for pain. I'm really excited about learning more about these oils. I hear them used in many different conditions. I hear that peppermint oil is used for headaches, and when we have kids that have chronic headaches, medication routinely used can be dangerous (ie:Tylenol, Advil, Aleve). I also think there is always that glimmer of hope to find something that just works, and at least relieves the symptoms for a short time.
Anyways, if your in the OKC area, stop by! Once again, our meeting are always open to the public, and to other conditions. You can find the "event page" on Facebook here.

more waiting...

As you know Kaylie had her 2 year post op MRI this summer, which came back her having a secondary condition called Retroflexed Odontoid Process. After a couple emails with Dr. Rekate, it was decided that Kaylie would go ahead and get a Flex/Extension MRI... basically they flex your head forward, then extend it back. She had this MRI at the end of September. The day of the MRI, there were some issues with our Children's hospital putting her under and doing that type of MRI. So with talking to them, and Kaylie, it was decided that she would try to do the MRI without sedation. They aloud me to be in there with her.... basically I was rubbing her little toes, so she knew I was there the whole time. She did amazing!!! I could not be prouder of her!
We got the CD, and mailed it off to TCI/Dr. Rekate.
He has emailed us saying she is quite unstable at the occiput & cervical spine ligaments. He would like to either have a Skype consult or face to face consult with us, to discuss more. We have set up a Skype time for Nov. 17th.
So till then... we wait....

Kaylie at her school's jog-a-thon

 On another note.... we had the Oklahoma ASAP Walk & Roll for a Cure on Sept 20th!! It was amazing! Everything went so well. We had 352 walk participates, and we raised $13, 220.00 for research! I cant thank all of our sponsors enough, and all the volunteers that helped me put this event on! Thank You!!

Our other sponsors (which had their own banner) were: SHAWPC, Dr. Shon Cook,
The Chiari Institute: Dr. Harold Rekate, then all of the above and in the pic were on the back of the walk shirt, along with:  4imprint, Bricktown Clowns, GoGo Squeez, Starbucks, Small World Pediatric Dentistry, A's Towing & Recovery, Dr. Archana P. Barve, DJ Paul Camacho, Max Tuepker, and Dr. Joanne Pham

 

 

 

Kaylie & her friend Brinlee

My Supportive Family!

Ben & Kay

The whole walk

Chiari & Syringomyelia Patients of Oklahoma

Explosion

Sunday morning… my list is full of things to do, I glance at my email… and there it is, the email I have been waiting for. Its amazing how one thing, can change the course of a day… even your life. 

Our neurosurgeon said the scans looked great… that there was great flow. But, the only thing on the scan that is not completely normal other than her surgery, was that she has "retroflexed odontoid process". This is what I have been worried about, we have always know the possibility of her having this was there. This is actually what Mason has… but you have to remember Mason does not have Chiari. Nor does he have symptoms… the only thing Mason struggles with is his Apraxia Speech, which is a oral motor planning issue caused by a neuro issue… Retroflex Odontoid can cause motor planning issues. 

Back to Kay… so, basically we need to keep better track of her symptoms. I know they are happening a lot more often than I ever tell people, or that I log. I have kind of slacked on logging her symptoms… b/c things were going so well. So, I have revised the way I log symptoms, one day I will talk about this more. Our NS suggested that if symptoms are getting worse to get a cervical spine MRI with flexion and extension. I will be talking to our pediatrician about all of this, and possibly getting the MRI now as a baseline. 

Whats all this lead to… well, there will probably come a time where she needs another surgery, a cervical fusion to be exact. This is the surgery that my friend Amy just had, that I have talked about in previous posts. This surgery really goes off some measurements and her symptoms. So it may not be this year or next… we really need to take this one step at a time. But I can say her probability of needing to have one in the future is high. 

So below, I have posted 4 of her MRIs… the top two, is before surgery, and 3 days after surgery. 

Bottom left is 3 months after surgery, and the bottom right is a few weeks ago(2 year post op). Then there is a single one below the group of them… that again is her 2 year post op one. 

 

On the 2 year post-op one there is a purple arrow pointing to the area of concern… that is your C1 & C2, The best way I can explain all of this, is basically your C2 is turned backwards (formed this way due to a connective tissue disorder, like EDS) and then the C2 b/c it is turned backwards it compresses the brain stem area. I have talked more about this under "Basilar Invagination" the top tab on my blog, when Mason was diagnosed. Terms used with all this is cranial instability, basilar invagination, retroflex odontoid… 

So, that's whats going on…. even though we will be facing another surgery one day…. this time its different. Yes, yesterday I was upset, but I have know about this for the last 3 weeks…. I think what is upsetting is that there is always a glimmer of hope that since you aren't the doctor that you might be wrong… but when you hear back from them… its finalized. That's the upsetting part. I think it almost a curse either way… knowing too much information on a condition, and at the same time not knowing enough…. either way, it always hits you like a ton of rocks! 

We will keep you updated! 

Still Waiting….

Still haven't heard back from anyone at TCI or Dr. Rekate…. my nerves are really starting to take a toll. I feel like I am constantly stalking my email account…. hoping to see his name pop up. This wait is normal, those that know TCI (The Chiari Institute) sometimes, they do a review board over MRIs… so its just not one neuro doc looking at your scans. just keep waiting…

On another note… Kaylie's 8th Birthday was a few days ago! Can you believe she is 8 now….

She had a skating party with some of her friends… she had a great time, and she did so well out on the skating rink. Never fell. We didn't make her wear a helmet…. it was in the car (just in case), but I knew she would be holding on to the side wall most of the time… like I said, she did great! 

fake glasses…. lol, she is so cute!

The kids started their new school yesterday…. they did great! And this mama never cried! They all liked it, I think Kay & Mason are a little nervous, but that's to be expected. I was a little worried about Abby, … at her age, a lot of the kids know each other… but she said she met 5 new friends, and sat by them at lunch… she is her mom's personality… so she will be ok! 

I know… they are getting so tall!!! 

Well…Im wearing bracelets, and posting… hoping my rituals will take effect, and I will hear something soon! 

MRI

Kay had her MRI on Tuesday…. I didn't post about it, b/c I just needed time for my head to rest. We had a great nurse Courtney… really sweet girl, gave Kay a "birthday bear" since Kaylie's B-day is around the corner.
Kaylie did very well…. I am always scared what it will be like when she wakes up, with anesthesia you just never know… and since she has been under over a handful of times… I think I can say that! But, she actually did great… no angry Kay came out!! lol It didn't take too long… about 45 min or so. I did get copies of the MRI on CD… yes, I have looked at it. And it has already been mailed up to Dr. Rekate. I'm sure I will hear from him next week sometime. As for my thoughts… I'm not going to post her MRI on here, until I have talked to him. She does have great flow, and areas of the decompression do look good. There is a small area of concern of possible related conditions… but we are going to wait to hear from him, before jumping into anything.

If I could urge anything… is more awareness in the medical education system is much more needed than people know. One of the "tiresome" things I always get to experience is the questions of "Why did you go there for treatment… we have great doctors here" And my answer will always be the same… We may have great doctors here, but we wanted more experienced neurosurgeons with these conditions to treat our daughter. I wanted someone that operates 5 times a week on this condition, rather than 5 times a year (if that). When people ask this question… they really have no idea of the person they are asking it of…. it really isn't hard to understand these conditions, it just takes the time to learn them.

On another note… walk is a month & 1/2 away!! Register now at https://asap.myetap.org/OKC_walk/ 
We currently have 144+ people Pre-registered, involving 20 Teams!!! This isn't counting a list I have running at home. This is really going to be an amazing walk…. and A LOT of Awareness!

Prayers for Amy

Today Im sitting at Mercy Hospital, for my friend Amy. She is my closest chiari friend. She has this amazing bond with my daughter Kaylie, and has just always been there for my family. Today she is having her 2nd decompression surgery, along with a cranial fusion. The picture above was the first time I met her…. she was also the first chiari scar I ever saw. Many prayers to you my sweet friend, your in great hands, and God is with you. xoxo

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. 

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! ;)

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

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!