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!

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!

TP Time...

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

Wouldn't Be Christmas Without Purple!

Wow! The kids fell asleep at a decent hour tonight…. and Elfy put up a small tree to show his support for Chiari Awareness! Every year I have to make sure I do one scene dealing with awareness for Chiari… its so very important to my family! Enjoy!

A Window Mess!

As we were all sitting at the dinner table last night, the girls kept saying what they thought Elfy would do… then I piped up and said, "I don't care what he does, as long as I don't have to clean up a mess!" When the kids got up this morning, Elfy had left them some window art…. and Abby goes, " guess he thought you needed a mess to clean up!" Life as the Elf!

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So after I posted the above, Ben was telling me how he saw Abby seeing it for the first time. He said that she was just laughing and giggling, and that her expression was priceless. I wish I could have seen it. That is why I do all these crazy things with the elf…. and not your average "you've been good scene". My kids are good. They are kids! So to see a little craziness in our house from an elf…. is fun. And I love that my kids get a kick out of it!

Elfy has returned!

Hope everyone had a great Thanksgiving! Yesterday we had another ASAP meeting, had a great turn out! Lots of new faces.... Kind of brought me back to when Kay was first diagnosed. Such an overwhelming roller coaster of a ride those first few months. I'm hoping the new ones got a lot of information, and know that we are all here for them. 

On another note... Our Elf on the Shelf is back! Elfy brought a little snack for each of them.... Something simple, but let the fun begin!!

my struggles....

I spoke earlier that my last meeting was back in August, and we had Dr Stetson at our meeting... its meetings like that, that reminds me why I keep doing what I do. I have been struggling a lot lately with if I should even be involved as much as I am with Chiari stuff. I didn't have a meeting in September or October, to big reasons were that we were moving, and my brother was getting married. My next meeting is Nov. 30th, which is going to be a great meeting for whoever is "new" to this whole journey. It's going to be on the basics of Chiari... like terminology, looking at MRIs... things like that. In some of the groups I am in we will through out abbreviations like CM, SM, RO, BI TC, OTC... the list goes on and on.... and even though we know what it means, and we type like that because its faster... we forget about the newer patients and parents. So, since in our Oklahoma group there has been many new patients since I started the chapter... I have decided to give a fast track course in chiari and its related conditions.
Anyways... since I have not given a meeting... I have really enjoyed the time away from it all. Its really true, when things are good... why look back. This is what it really comes down to.... if I am not affiliated with a non profit backed by a medical advisory board.... then I cant help or get the doctors in our community to listen to us. Sometimes I wish we could just be "Chiari Friends of Oklahoma"... and we are not with any non profit.

Right before October, I watch a documentary called Pink Inc.  (you can see this on Netflix)... and it really made me think about non profits (in general). All though the film was dealing with breast cancer organizations.... and NONE of the chiari ones even comes close to that big of organizations.... it just started making me think what I "wanted" to do a long time ago when Kay was diagnosed. Which always leads back to where I still want to be.... better educating OK medical professions, and helping the ones here that financially cant do it. I want to show them... the resources that can help you, or even help them in their fundraisers. I will probably Never do a walk or 5K, or and financial awareness here.... I guess because I rather that $200 or $2,000 I would raise go to the child's parents or adult that cant pay for that MRI they need, or to help them travel for better treatment.

I was recently approached by a group of high school girls that are working on a community awareness project for their nursing program. They had gotten my name because one of the girl's moms works at Kaylie's school, and had seen the bracelets for Kaylie.... they wanted to help spread awareness for Chiari and raise funds for Kaylie as their project. I was so appreciative of the offer.... but told them that we were fine with Kaylie's medical bills.... but if they want to still raise money for the organization I was with OR I knew several patients in Oklahoma that could use that support, they could. I was so happy when the choose to help another patient.... and what's even better is they picked one of their own peers. A girl that goes to one of the high schools, that one of them goes to. I love how this whole project will spread awareness about chiari, financially help this family get better treatment for their daughter, and teach her school and peers of her school whats really going on. In time I will feel you in more on this whole project.
I guess I just need to find a happy balance between living a regular life (meaning not always focused on chiari and worried about patients I get attached too), and still doing what I want to do for our chiari community.

It's Been Too Long!

I know, I know... every time I post I say that I am going to get more in the habit of updating more often. Sorry... I suck!! lol Last time I updated, we were celebrating Kaylie 1 year post op... between then and now, so much has gone on... all for the good of course!
In August we also celebrated Kaylie's 7th Birthday, and all the kids started school too.

At the end of August I had my monthly ASAP Chapter meeting. We had a special guest, Dr. Nathaniel Stetson. He is the new neurosurgeon at Mercy Hospital here in OKC. He did his residency at North Shore University Hospital up in NY where Kay had her surgery done. He also worked along with Dr. Rekate & Dr. Bolognese of TCI with patients of NSU Hospital. So needless to say he has been taught well on the chiari side of neuro. He also is very compassionate. You can see his Bio from Mercy Hospital here. Anyways, he came to our meeting,  introduce himself, and probably was shocked out how large of a group we have. He answered general questions of people, and explained a lot too. We look forward to him being at another meeting one day!

At the end of September we closed on a new home, basically 7 miles from our old one. But, we do live in the same neighborhood (around the corner) from my parents. I really enjoy living close to them, and the kids love it too!

Mason turned 4 mid October. He is getting so big! And Halloween was a blast. Kay was a witch, Abby a Voodoo Doll, and Mason was Mr. Incredible.

Another piece of cool news is that Kaylie was excepted in the Beads of Courage Distance Program. To learn more about beads of courage go here. They are an organization that shows children with serious illnesses courage through art (gosh!, I hope I explained that right!!) Anyways, Kay is part of the chronic illness program... the other programs they have are Cancer, NICU, Burn Victims, Cardiac, and a couple others. Children get a bead for each treatment that they go through, and each bead represents a treatment. Anywhere from MRIs, blood draws to surgeries. Its a great program to show our kids how strong and brave they are.... and they can get through anything. If you are a bead maker, this would be a great program to donate your services to.

This is Kaylie's beads.... Beads of Courage sent her all these, except for a purple bead on the end (I added to the strand to represent her fight with Chiari), and the two red crosses (I added those one for the time she was blessed by a priest in NY right before her surgery, and the second was when the Rabbi came into her room at the hospital and prayed for her). Those two moments were very important to us as a family. The strand continues to get longer as she lives her life.

I'm looking into changing up some of this blog.... still and always focused on Chiari & related conditions.... but to start turning it into a general family blog. I think I would be able to update more often, due to having other things to talk about besides chiari. But, that's all still in thoughts right now. We are excited to celebrate Thanksgiving and Christmas soon... we love the holiday times with family, and ready to start new traditions in our new home.

It's a Purple Cupcake Kind of a Day!

Today is a Happy Day, enough so, that we will be celebrating with purple cupcakes!!!

Wow! Can you believe a year ago today, I was giving many kisses to my daughter, as my husband walked her back to an OR room. Then I sat in the chair and cried…..

Last July 27^th was the longest day of my life; hours felts like days and the waiting grew tiresome. But she made it through, and what’s even better than that is we are celebrating her 1 year post-op surgery! What a year it has been…. I knew we would get through it, but man… it was a long one. I am also happy to say that Kaylie has not been sick for 6 mths straight!! That’s a first for us. 6 months after her decompression surgery, Kaylie had her tonsillectomy… that surgery helped a lot!

Kaylie is doing so well! She doesn’t have nearly as many headaches as she use too, no ear pains or eye pain. She still has some issues with memory, which she will have some testing done in Sept on that, and she has had some eye issues, that seem to be under control right now, we are watching those issues carefully. Kaylie went to summer school this year, to try to help catch her up from all the school she missed. I think it helped some, but not as much as I was hoping for. Over the summer I have been working with her on reading, and a summer bridge workbook too. But after a lot of thinking, Ben & I have decided to have here do 1^st grade again. The school is very supportive on this decision; in fact I believe they think it’s for the best as well. I think I am more worried about it than she is, in fact she says she is ok with it. We had new neighbors move in across the street, they have a little girl Kaylie’s age, who will be going into the first grade this year. They have become good friends, and I have asked the school if it was possible that the two girls be placed in the same class…at least this way Kaylie will know someone. We will see what happens. Either way…. I think this is the right thing to do.

            I still get contacted a lot though Kaylie’s blog. And recently I was speaking to one of the moms; our first phone conversation … and she said something to me… that is probably true about a lot of moms in the situation I am in. She told me, “I noticed you haven’t wrote as much on your blog as you use too… so I figured Kaylie was doing really well….” She is right. I don’t write as much as I use to, because there is nothing to really write about. Kaylie is doing very well. I keep in contact with Dr. Rekate, and recently he reviewed her Nov. MRI (3 months after her surgery), because it looked so good, he feels she does not need a MRI right now. She will probably have one next year. I am very content with this, in fact happy… there are not any other words to say except that she is doing great!

I put this one up by itself , b/c it was bigger than the one above.

Kaylie’s scar looks GREAT too!!! Don’t you think?? This pick was posted on my facebook…. Not only to show how well she is doing, but also the sheer need of awareness! I continue to be heavily involved in The American Syringomyelia & Chiari Alliance Project, leader of the Oklahoma Chapter. I’m hoping next Spring to bring the first ASAP walk to OKC, and continue my efforts in showing support to patients and more education to our medical community.

If there is one thing I could tell every parent and even adult patients out there starting this journey, is to find the right doctor for you and your family. One may be great for me, but not right for you, and vice versa. Being comfortable and trusting your doctor is so important.

We like to Thank all our friends and family that have always been there, and never left our side. We Thank the City of Moore, and surrounding cities for your generosity, prayers and good will. We especially Thank The Moore Police Department, for they are our second family, and always will be. 

I need to post more....

Having a blog is so therapeutic for me. I use to utilize it a lot, mainly last year, but now... I don't have as much to write about, or at least I don't think I do. I think there is a tad bit of me that is scared to voice what I am thinking now days.... its not the worry anymore about Kaylie, or my family in general, my thoughts are more about ...kind of things that drive me crazy, in the chiari world.  lol I know I have a lot of emotions built up... and I should be writing more... I have often thought about starting an anonymous blog about life in general... but one blog in my busy life is enough to handle!!

There are two chiari patients in NY right now getting treatment... one of the moms I have become very close with... I feel like sometimes we have to back each other up, because we chose to see better doctors (in my opinion). The other one is new, and I'm just getting to know her. The newer one's daughter had surgery today... there was a complication, where they ended the surgery, to get a handle on this other health issue.... I have been reading her Caring Bridge... and everything she wrote brought back so many memories... ones we faced literally almost a year ago. I have been struggling a lot lately, I would say for the past 4 months, being so emotionally involved with some of these patients.... mainly the kids, and parents... probably because I can easily relate, and remember being in that position. I feel like I go through these highs and lows with being involved in the chiari community. Something good will happen, for an example: we have a new neurosurgeon coming to OKC, that has worked with the TCI docs in NY... so he will really know chiari, and I have been in contact with him... so I have this "high" of things are going to change in OK, and other neurosurgeons are going to understand this condition a lot better. I have a doctor willing to get involved with ASAP here in OK.... it makes me feel great, that a difference is really starting to happen... that putting on all these meeting, are not for nothing. But then a "low" will come ... where I will watch friend's child go through the ringer dealing with this condition.... or like today, the problems with the surgery with that child being so out of whack... that I just wished I was not involved anymore... so I wouldn't be emotionally attached to these people. No one tells you that part of all this.... the part where you worry about other peoples kids... worrying that it could be your child one day, or sometimes the guilt you feel because your child is doing so well, and others are not. I know I should never feel guilty because Kaylie is doing well.... but it upsets me to tell others when they ask... yes, she's having a great day, or has been doing so well.... when their child or them are suffering so bad. I'm a fixer... and when I cant help, or fix the problem... it frustrates me, I feel like I am in limbo with things.
So... with all that said, I am going to try to start blogging more... I'm serious this time, I know I have said that... how many posts??? Let's don't count! Tonight I am going to start with my anger about a post that was in a FB group.... how a doctor told a parent that children under 6 grow out of chiari.... I didn't even get through the whole post, b/c I was so mad. Not at the parent who posted it, but at the doctor that said it! I am really hoping it was a miscommunication, because if it isn't... just means awareness is that much more needed! All I could think about was all the littler kids in my groups that have all had surgery... one as young as 18 months.... it just kind of sounded like we as parents put our kids through this horrific surgery for no reason... like we should have waited for them to grow more. I know I can easily say, along with the rest of the parents I know... if we would have "waited" I don't know where we would be at right now. How much more Kaylie's brain would be damaged, or all the nerves that are dying off, because they are so compressed... or even brain tissue, from being overly crowded. It's a scary thought... but that where I as a support group leader urge patients to get more than one opinion, regardless how well you think a NS knows this condition. But... I don't know why I am so surprised... b/c one of the biggest things I hear from adults in my groups, is how long it took for them to get diagnosed, or correct treatment... b/c it took them that long for a doctor to figure things out. And this is a scenario where it gets my blood boiling to a "high".... to keep doing everything I am doing... this is why awareness, and support group meetings are so important.

P.S.~ if you pray, say some extra ones for the two chiari warriors in NY right now, they could really use it!

What a week!

Sorry I haven't posted in awhile... but this week was so crazy... and still is!! Again... our family and home were fine from the tornado. We were at home when the storm was coming, at one point the sirens started going off, and Ben stepped out of the garage, and could see it about 5 miles away... he called me out there... and I immediately panicked, and we put the kids and the dog in the car, and headed South of the tornado... once we were in Norman, we watched the tornado go through Moore. After it went through we went home... our house was fine... it hit about a mile away from us. Ben raced to get his uniform on, and went to work. Him and all of the officers of Moore have been working 12 hour shifts since the tornado hit. There is so much destruction, words, and even the scenes on TV cant even come close to showing what it is really like here. There is so much sadness for all the families that lost their homes, and loved ones. But, with that said... I see some of the strongest people ever. Our community is AMAZING... but I have said that before!!! And so is everyone else that has come to OK to help us, and other nearby areas. We are truly blessed with all the support that has been given to this city.

On another note, through a lot of Facebook friends, I have gotten questions about how Kaylie did through out the storm, because of the extreme pressure of the storm and what have you. She did great!! In fact not once did she complain about anything, till late that night when I had put her to bed. She had said that her head hurt, "so so so so bad" in her words... I had asked her when did it start, and she said right before she left school and came home that day. That day I had decided to pull them out of school early due to the storm coming... I gave her some meds that night, and she still had a little head pain the next day, but by the time the afternoon came around, she was doing a lot better. 

School for the year ended early.... we went last Thur to get the girl's belongings and say good bye to their teachers. Kaylie was suppose to do summer school, starting next week... but we haven't heard if they are going to still do that or not. We shall see. If they don't, I'm going to join a website called time4learning.com to have her do over the summer. Other than that... Abby is still in gymnastics, and the kids started swim lessons tonight! Hope everyone is well... and thanks for all the kind thoughts and prayers being sent to our great city! MOORE STRONG!!!

I know many of the readers of Kaylie's blog knows we live in Moore, Oklahoma... Please know that our family and home are ok.

We added an Ophtho doc to the list....

I feel like I am always apologizing for not keeping up.... sorry :/
What's been going on....everything! lol Kaylie is enrolled in summer school, this will help with her reading and math skills. In Sept. we are having some executive functioning testing done. And we saw an ophthalmologist today. It never ends! I don't know why I think it does sometimes, but it doesn't! I should first say that Kaylie has complained on several nights, when going to bed that her heads hurts when she lays down. At first I thought she was being dramatic over that her older sister gets to stay up late, until it has happened while Abby was gone. on really bad nights she will use a heating pad or prop her pillows. I also thought it was due to weather change... all the crazy cold fronts that would come in/ going from 70s to 30s. But what got me really worried was last week while doing her reading homework, she was struggling. I asked her what was going on, she said she sees two of the same words under the sentence. (double vision) She said it only happens when she reads, and i was ok with everything, until this past weekend and she started saying everything was in twos. Ben then checked her eyes for nystagmus... said he saw a little in both eyes. I immediately got a hold of her pedi, and emailed her NS, her pedi got us into a really early appointment with a ophthalmologist today.

The appointment went really well!!! We saw Dr. Trigler at The Children’s Eye Care Center in the city. He was AMAZING! He knew about chiari, and all the weird things that go a long with the possibility of Intracranial Hypertension (IH). Which is refreshing… I didn’t have to get out all my info!

Anyways… we were there till about 10:30… they ran a bunch of tests, and dilated her eyes. He said that he did see a little papilledema (optic nerve swelling), but not even enough to call it mild… almost not enough that he said it could have easily been missed. He said the disk looked good, but the edges seemed a little rough. But the form (I guess the curve of it was good). He also said that her venous pulsations were very good, and present. But because of the papilledema, he sent us over to OU/Dean McGee Eye Institute to get an ultrasound of her eyes. Within about two hours of getting it, he called with the results, and said there wasn’t any fluid in the optic nerve, but there were some drusens (these are like calcium deposits), he didn’t seem to worried about them. He kind of thinks that the double vision is coming from an outer surface issue of the eye.. like dry eyes, and wants us to try putting in artificial tears, to see how that helps. But, if this progresses and gets worse, and other symptoms come on worse… like headaches, nausea/vomiting, and dizziness/clumsiness. Then I need to call him immediately. The next steps would be to check everything again to see if changes have occurred, and then unfortunately a spinal tap, to check the actual pressure in her head. If it ever got to that point, we would head NY. 

So the plan is right now, to gather all the information and send it to Rekate to get his opinions… and I'm thinking we are going to kind of watch it all. Intracranial Pressure is defiantly a road I didn’t want us looking at…. The thought of spinal taps and possible shunts scare the crap out of me. But right now I think things are ok… we will see what her NS says, and go from there!

Kaylie in the kids area of the waiting room at
Children's Eye Care!

Happy Easter

Hope everyone had a wonderful Easter!

This is Kaylie's pet bunny Sara, she has had her for about 4 years. 

1 Year Being Diagnosed...

"A year ago yesterday, I sat in my child’s pediatrician’s office listening to her say words I have never heard before. Our lives changed forever, and the word Chiari became an everyday vocabulary word in our house. Emotions were everywhere, and today they still are, occasionally. But we have learned to make it into a positive. I don’t let it control my life, nor do we dwell on it. Instead we spread awareness, that one-day a cure will be found. I have heavily involved myself in the non-profit American Syringomyelia & Chiari Alliance Project, to help educate the medical community where I live, to help the patients that suffer from these conditions, and to believe one day my grandchildren or great grandchildren will not have to face this journey Kaylie will travel for the rest of her life.

The year has been a crazy ride, and I am so proud of my family of how well we have gotten through it all. We also Thank all of our family & friends who have rode the ride with us, and never left our sides." 

I wrote that yesterday on my Facebook page. Tonight I was watching Grey's Anatomy, part of it was about this mom, that fought for her child.... her "mama gut" told her something wasn't right, and they finally found out what was wrong.... But Meredith told her she "fought" for her child. I get all that.... and I love that I do! Because it was exactly how I have felt at times with Kaylie... you feel like your going crazy, about how you talk about symptoms, explain things, or even thinking about the decisions you make about traveling for treatment. But in the long run... you know you made the right decisions, and all that time you were just fighting for your child. 

It shouldn't be that hard for parents. They shouldn't have to fight for good treatment, doctors that listen, teachers and schools to understand. But it is what it is.... once over one big hurdle, it seems another is around the corner. I will always fight for my family, that's what love is....