Happy New Year!

I have been thinking about this post, probably for the past two months. A lot of people in my place would be counting down the minutes to say, "Good Bye 2012". Nine months ago, my family's life changed forever. I felt every emotion in the book, and occasionally still do. But I can honestly say I have gotten over all the anger. I am no longer mad at the doctors that were not a lot of help to us. I am no longer asking "why my daughter, my son or my husband". Just because I say I'm not angry, doesn't mean that I don't get upset anymore. I still do time from time. But being upset usually comes from not knowing what will go on in the future. As much as 2012 has burdened my family, I have to think of all the people that have come into our lives. I have to think of all the life lessons I have learned... and even my children have learned. Or how I was reminded that good still exists in our world. In so many weird ways, 2012 has blessed us. This year I learned how not to sweat the small things, how to take one day at a time, how to truly never give up, how to have faith and trust in others when my child's life depends on it. I have learned how the journey we plan is not the one that always happens, how being able to help others is the best never ending gift, and how God really has a plan for each of us.
This year the people that have come into our lives, I never want to let go or forget about them. They all have such a huge part of our hearts. I am so grateful for everything that everyone has done for us....

At the same time, with all the wonderful people that have come into our lives, it has also showed me the true side of people. Friends and Family that you thought would be there no matter what.... seem to fade from your life. I think when something tragic, an illness, or a life altering situation happens... you learn about the people in your life.
When I look at 2013... my plans are endless. I have so much I want to do, to bring more awareness about Chiari 1 Malformation. I want to get through school, so my husband doesn't have to work so hard for us. I want to continue to show my kids, how helping others grows our heart. But at the same time I worry so much about the future. I hate the days Kay wakes up with a headache or say her ears hurt. It scares me to think what will be next in her future. Even though I am so involved with the Chiari community, its days like that the put me back in my place... and remind me that this is a never ending journey. Or when I hear of a child or adult that passes away from chiari... it reminds me to keep going on, and not to give up. Research studies on chiari may not change Kaylie's life, .....but everything I am doing on Awareness for Chiari will. I am paving the road for better acknowledgment of Chiari. As Kaylie gets older hopefully it will be better understood by doctors, nurses, and others in the medical community, along with the people that are in her life.

What's are plans for 2013??? Well, like above I have learned thats the plans we make sometimes have changes in them, and ours for 2013 have already started.  I have decided to take the semester off from school. There has been a few conflict with Ben & I 's schedule, along with Mason's speech & mother's day out program, and then a small part of Kaylie and the upcoming ENT appointment. I had moved around the class, not even taking the professor I wanted, just to take the class... and then when I add these things in the mix... it just seems like a disaster waiting. I wanted to take the class, and do very well in it, like I was before I left it. Ben and I have talked a lot about all this, and we are hoping there will be some changes in his job schedule starting next August, and that is when I will start back. I will go back to school, just not right now.
The kids: well, I am hoping 2013's plans are that they are in school for the rest of the year, and not out sick all the time.... more less Kaylie on that one.... Abby & Mason always seem to be well. There are no traveling plans... which is nice. I am hoping we don't have to travel to NY this year, and that things just get back to normal....and healthy! I still continue to do my monthly ASAP meetings, and I hope to bring maybe a couple fundraisers into this year for that.

So, I am saying so long to 2012, and welcoming 2013 with many hopes.

Happy New Year from our family to yours!

Are the holidays over yet???

I love Christmas! I love all the decorations, all the fun traditions, being with family, the lights... everything. BUT, I am also glad to see it go! By the time Christmas Day comes, I'm ready to be done... to have my house back, and have everything be where it is suppose to be. So if you are like me... I bet your tree is already gone... mine is!
We had a great Christmas, and we are all well!!! That's a Christmas miracle itself. Last night Abby stayed the night at one of her friend's house, and I took Kaylie to Target to exchange one of her gifts that was missing a part. On the way home, out of the blue... she starts asking me questions. She first asked, "Is this thing on my head going to be there forever?" I asked, "your Chiari scar?" She answered, "Yes". I then went into this huge explanation, that yes it would be, but because we had such an amazing doctor for her, and that he knew how to do things, that as time goes on, and as she gets older, that you would hardly be able to see it. I tried to tell her its a part of her, and it stood for how strong she is. Then she asked the question I thought I would never hear her say, "Did they open my head up?" I couldn't believe she asked it so bluntly. I told her yes. She said that must have been scary, and I told her that her dad and I were very scared. She asked if her dad was in there when they did it, I said no, that he just took her back to the surgery room, but that it was scary to us because we loved her so much.

I never ask her questions about what she remembers, or if she wants to talk about any of it, because if she wants to know something, and when she is ready... she can ask us. But it does make me wonder what goes on in that head of hers. After those couple questions, that was it... she went on to talking about how old Abby was when she was born.

Happy Holidays!

Wanted to give a quick update on all of us, before the next few days become really busy. Kaylie is doing a lot better. Ben had taken Kaylie to the doctor on Thur, for a recheck... and Dr. Marcy mentioned to him about us seeing an ENT, due to her being sick 4 times in 6 months. I made an appointment to see our ENT, they cant see us till Feb. 1st.
I'm doing a lot better too. Still have a mild cough, and still on antibiotics, but feeling much better.
I hope everyone has a Merry Christmas, and stay safe! We are suppose to have a white Christmas... very exciting if it really happens!

Sorry to the ones that have looked for Elfy photos... Elfy has been extremely low key in our house this week. Kaylie went to the doctor on Monday... they ran strep tests, the 5 min test was negative... but we have not gotten results on the culture. They thought she still had strep, so they put her on an antibiotic. This whole week she has been running fevers, when not on Motrin or Tylenol, she has been vomiting, very extreme headaches, and sore throats. Her throat looks horrible. She only has two more doses of antibiotics to take, and with her still being sick, we have an appointment tomorrow morning to have her rechecked out. With this all going on, I woke up this morning, with a cough that would not stop, and chest pain. I went to the doctor, where they did a breathing treatment, and chest X-ray. I have severe bronchitis. They put me on an antibiotic, cough med, and an inhaler. Ben, Abby & Mason are all fine. Hopefully Kaylie & I will be better before Christmas.

I am still doing Elfy, for the kids... just not anymore of the crazy antics I had planned. Elfy did bring flowers for Kaylie to Get Well. Hope everyone is enjoying the holidays!

Update 12/20: Ben took Kay back to the doctor today, I guess the culture came back positive for a rare form type of strep. But, can still be treated with the antibiotic that she is on.

I Smell Baking in the Kitchen...

Tonight Elfy baked cupcakes for breakfast in the morning! 

Here was last nights Elfy, just a piggyback ride by a Holiday Penguin.

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

As for Kaylie, she is still fighting her fever, I have to keep her on meds to keep it down. We will be seeing the doctor tomorrow. 

Long Day...

In my last post I talked about how I was worried about Kaylie's headaches she had been having the past two days.. well, last night around 9pm, she spiked a fever. Its been on and off through out the night and all day today. Ive been keeping her on Tylenol & Motrin to keep it down. Today she started complaining about a soar throat... which her tonsils look a little red and swollen, being nausea and every once in awhile her ear hurting. So, she probably has some type of virus, or possible strep! JOY! I will probably be taking her to the doctor tomorrow or Tuesday... depending on how she is doing.
Anyways... we spent the day in bed all day, I baked some cookies at one point, just trying to keep her rested.

hmmm....

Kaylie hit 5 months post op yesterday. The day started out ok... when I picked her up from school, she had a headache. I kind of blew it off... thinking it was weather related, because Ben had a headache too yesterday. We had plans to go out with friends last night, and by the time we were headed out the door, she still had a headache. I gave her Naproxen. An hour later she still had it, but seemed to be doing ok, because she was having fun with Abby & her friend. The night went on, things were good... till on the way home. Meltdown. Not too bad of one, but it had me a little worried.

Today she started to have another bad headache... in the front & back of her head. At one point she complained her ears hurt, and her neck hurt. She didn't want to take anything... so I let her be, finally around 3pm, with her acting like it was worse I made her take some Motrin, and go lay down in my bedroom with a heating pad. It seems to have help a little, but hasn't taken the headache all away. 

Since surgery Kay has done A Lot better. She will occasionally get small headaches... which I say are always due to weather... but nothing like she use too. Since we had met Dr. Rekate back in June, I had stopped keeping track of all her symptoms... just because she was having surgery... I felt it wasn't needed. The first time she had a headache after surgery... I thought to myself I really needed to keep track of when things happen, just to be on the safe side.... I keep putting it off. I don't know why, because its as easy as writing it down on a piece of paper. I think I am scared to keep track of it. Every time we have one of these days... I find myself panicking that things are going to start to go down hill, or was it really ok to register for that class. I am kind of scared to plan things out... not knowing how things will be. I know I should say everything is going to be fine.... but there is just that part of me that is uneasy about things. 

I asked some friends on FB about what they used to track symptoms. I use to have a binder that I kept, ... I guess like a symptom diary. But I wanted this time, something that would graph out... so I could see  the distance between each episode. I found this app for iphone, iPad, and itouch. Its called Health Manger... it was like $3.99. I started it today, I can add in symptoms, track medications given, notes, then it will show you graphs ... and I can even import/export the info. I'm going to try this for Kay & Ben. 

Anyways...besides that today is kind of a bummer day... things have been good. I think i just worry about the future. 

To those that got on my blog today looking for Elfy... I just sat her in the tree today. I kind of wasn't in the mood last night, for anything crazy. Yesterday was an emotional day for the US. Our thoughts & prayers go out to all the families in CT. With having three young kids, two of them in school... I can't imagine going through that.

UPDATE (9pm).... So Kaylie has a fever! I guess she is coming down with something. All of my chiari friends have reminded me that headaches are much worse when sick... hopefully she will get better before xmas!

5 Months Post Op... & Elfy Supports Chiari!

I know I say this every time a month goes by.... but I can't believe 5 months ago my daughter underwent a 5 hour brain surgery. And she is doing great!!! Kaylie has not had many problems since surgery. And the only time she gets a headache is when a cold front, or bad storm is coming in.... when the weather pressure changes. She is doing great in school... the list could go on and on. And as much as I would like to write a longer post on her 5 months... it is super late, and I have a very early morning. But I promise a nice big update post soon.... without this Elfy stuff!!! lol

I had to make sure Elfy rocked purple at least once this season
and what perfect timing... Kay's 5 month post op!!!

Can you believe how good it looks???
She doesn't even look like she ever had surgery!
Just a reminder, all her healing shots are under
"Kaylie's Story" She is so blessed to have an amazing surgeon!

Some Elf Got Stuck Outside!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Elfy was Busy Last Night!

The girls were so embarrassed to go to school in our car this morning!! 

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Hitchhiker Elfy

Today Elfy is hitching a ride to school with Abby.... she doesn't know it yet, but in about 20 min when she gets to school and opens her bags, she will!!! So funny, wish I could see her expression! The kids have been looking all morning for Elfy... they are worried someone touched her, and now she is gone!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Snowing at our house!

I did this Elfy scene last year too.... it's my favorite!!! I love snowflakes, and it just makes the living room so whimsical and Christmasy! We usually leave them up till xmas is over.

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Boomer Sooner Elfy!!!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Sticky Fun!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Elfy From Above

Elfy was sneaky tonight!!! I hope the girls aren't late to school tomorrow! 

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Mason & Speech

So when we saw Dr. Rekate last, he knew Mason was getting speech therapy, but wanted us to increase it to twice a week. Mason now is in the public school system, and sees the same speech therapist that has worked with the girls at school. You have no idea how blessed we are!!! Kelli is GREAT!!! The girls have so much improvement working with her, so I was ecstatic when I knew she was going to be working with Mason. She has been working with Mason for a few weeks now, and things are going well. Mason is very comfortable with her, which helps a lot! Kelli did suggest that Mason needed some peer interaction, being around kids his age would possibly help his speech a lot. Because of Mason's condition he could get services with the public school's pre-school 3 year old class. This class is only for really delayed 3 year olds, which Mason's speech qualifies him. Kelli & I went to check out the class this past week, unfortunately we both agreed that the children in the class were more cognitive delayed, where Mason is not at all, its just his speech. So, with that said, we both agreed it would be a good idea to put him in a Mother's day out program twice a week, and to continue his speech therapy with her twice a week. So I enrolled him at our church, which has a great Mother's day out program... I know the ladies that work there, and in fact the girls went there when they were younger. Right now they only have Mondays available, so we are on a wait list for an opening on Wed. He will start this Monday, we are very excited! I think this will be really good for him.
Because of all this needed therapy and peer interaction for Mason, it has made our schedule a little hectic. I had enrolled for the spring semester back in the beginning of October, thinking things after Jan. would be back to normal. My classes really conflict with Mason. So, with a lot of thinking, looking over schedules... and some tears (I won't lie)... I dropped one class, and moved the other one to different days. I will only be taking my A&P class now next semester. Both Ben & i talked about it all.... we are in no rush for me to go to work, or finish school... so taking my time on it isn't a problem. And right now, Mason is more important. So, I will take my four hour class in the spring, and focus a lot on getting Mason's speech better! Everything will work out!

Elfy is sick.

One of the rules about Elf on the Shelf is that you can't touch the elf. Mason touched Elfy today, the girls were really worried. So she is very sick now.

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Elfy...

Every year I do a police scene for my husband....

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Dog Groomer Elfy???

Looks like Elfy has a new job as a dog groomer! Don't worry! Lilly was not harmed in this photo... just her pride!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.


By the way, Kay had a better day today!!

Elfy...

Hmmm... hope she isn't planning on painting anything!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Not a good day...

It hasn't been a good day for Kay today. She woke up with a bad headache. I want to say this has probably happen a hand full of times since surgery, and they usually go away. But today, was just a bad day. She has also complained about her ears hurting a couple times the past few days. I feel on edge. I know the surgery was not a cure.... but we have had so many good days since surgery... you forget about those bad days she use to have. Then today happens... and it hits home.... this is a life journey for her. I try not to get to worried... hoping that its all weather related. It seems when we have drastic changes in our weather, she has a little head pain... or I hear Ben complain about a headache.

The Chiari community lost another chiarian today. I believe she was only 52. I don't think I have posted a lot on the deaths that I hear.... I would have to look back in my posts to see. I feel like I hear about one at least once a month. I hate it. Because the ages range everywhere.

This is just one of those days, that reminds me why I fight so hard for Kaylie, and why I have become such a huge advocate for Chiari.
~In memory of Margie

Photo-Op

Tonight Elfy switched all our photos in our house! It was a lot of work, but it will be worth the laughs, giggles & smiles tomorrow morning. Anyone that is looking to do this, you can get about 50 free 4x6 photos when you sign up for a new account at CVS, Walgreens, Shutterfly, and other photo companies. Elfy then sat in our tree posing behind a frame!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Elfy is here!

Elfy has come to our house! She put her book on our entertainment center, and is hiding for the kids to find her!

* Note: All though "Elfy" is not Chiari related, we wanted to share one of our holiday traditions.

Tiss the Season...

Wow, the Holidays keep us busy! I hope everyone had a great Thanksgiving. We did, and had a great time with Ben's brother & family. Last Sunday, another mom, that has a child with Chiari.. we decided to serve dinner to the Ronald McDonald House in Oklahoma City. This other mom also travels for her son's treatment, so she as well understands what it is like to stay at a Ronald McDonald House. Anyways, her mother joined us, along with my friend Barbara. Marco's pizza of Moore helped us by providing pizza and cheesy bread to the families. We also provided salad, fruit and dessert. The families were really Thankful, and we were honored to visit with them.

The family is doing great. We just decorated our house for Christmas. I do the Elf on the Shelf for the kids. The kids have named our elf "Elfy". To those that don't know about the Elf on the Shelf.. its a little elf that comes to our house after Thanksgiving, each night moves to a different part of the house to watch the kids. Then each night he/she reports back to Santa if the kids have been good. There is a whole book that goes along with it... super cute! Anyways... last year, our elf really stood out, and did some crazy things around the house. Once the kids found her drinking chocolate syrup in the refrigerator, she hung snow flakes from our ceiling... and other cool and crazy things. Well, Elfy has not shown up yet at our house this year...  and the girls are all in a frantic over this. Abby thinks she is sick, and Kay isn't sure why she isn't here... but every morning they look for her. Elfy is going to appear on the first.... and I have a whole list of crazy antics this elf will do while here. Last year I posted on my old blog each day. I no longer have that blog, and though this isn't Chiari related.... I still would like to share this on here. It's part of our family! So each day I will post what "Elfy" has done!

Happy Holidays!!!

4 Months Post Op!!

I was just looking at my calendar, and saw that Kaylie was 4 months post op this past Friday!!! I can't believe how the time has gone by fast, and how well she has been doing! Before you know it, a whole year will have gone by!

Once again, it has been a busy week for us! I had our second ASAP Support Group Meeting this past Sat. We had a discussion topic on pain/chronic pain. We had a great turn out, 16 of us again... but 9 were new! At every meeting I have an agenda, then a sheet about our topic. I usually try to add in some great links or videos on the subject. Below you will find some that I had for my group.

Great References:

How to Describe Your Pain to Your Doctor -http://www.health.com/health/condition-article/0,,20187961,00.html

Managing Chronic and Recurring Pain: Pain Types and Classifications - http://www.webmd.com/pain-management/recurring-pain-11/types-of-pain

The A to Z of Pain - http://www.4therapy.com/life-topics/chronic-pain/z-pain-2858

I Have Chronic Pain: Why Do I Need a Pain Psychologist? - http://www.4therapy.com/life-topics/chronic-pain/i-have-chronic-pain-why-do-i-need-pain-psychologist-2611

Resource Guide for Chronic Pain…. Overview of medications and their usuages.

http://www.theacpa.org/uploads/ACPA_Resource_Guide_2012_Update%20031912.pdf

Great Videos:

“Pain Management in Patients with Chiari 1 and Syringomyelia” By: Ann Berger, MD, MSN, Chief of Pain and Palliative Care, national Institutes of Health   http://www.asap.org/index.php/online-video-library/pain-management-in-patients-with-chiari-i-and-syringomyelia/

Our next meeting is Dec. 29th, and our discussion topic will be on Medical Bills/Financial Asst./Disability. 

If you would ever like more information on my support group or possibly an ASAP one in the state you live in, please email me at oksupportgroup@asap.org

Kaylie had a fall party last Friday, too. I went to help out, they were asked to dress up like scarecrows. They were all so cute, and she had a great time! 

Along with our week, Ben came down with Bronchitis, and of course the rest of our family caught a bad cold from it. I had an ear infection too! Yuck! Hopefully we will all start to be on the minds soon! Ben's brother & family are coming in for Thanksgiving. We are supper excited to have them. We of course have so much to be Thankful for this year!!! 

From our family to yours we wish everyone a Happy Thanksgiving!!! 

I See a Break in Our Future!

Sorry I haven't updated!! I feel like I have said that a lot lately. It has been a crazy past few weeks. Let's see, I left off that we were at the hospital getting MRIs. Well, Kay & Mason got them done, had no issues. Once Again.... North Shore Hospital is outstanding!!! The kids were transferred upstairs to the pediatric floor to fully wake up from anesthesia. The Child Life department kept Abby busy with crafts, while she waited. Then Mason & Kaylie got to join in on the fun too.

While waiting, I emailed Dr. Rekate, to let him know we had made it in, and the kids were currently getting their MRIs, and what he wanted us to do, since TCI was still without power at that time. He immediately emailed me back, and said we could meet at the hospital the next day.
The next day (Friday), we went back to the hospital to meet Dr. Rekate. When we saw him, he explained that Kaylie's MRI looked great, asked how she had been feeling, and any symptoms. He was very pleased how well she was recovering, and how the incision was healing. Ben & I were very pleased to hear all this, especially after what happened on our trip there. Something I had left out in the last post. On our way here, we had stopped off at a restaurant for dinner, and Kaylie was sitting in a chair, fell out backwards and hit the back of her head (the incision area) on a wooden window seal. Ben & I went crazy... I am sure the people in the restaurant thought we were nuts. All I kept thinking is that we had worked so hard this past 3 months, on protecting her head... and bam... she falls out a chair.  She was "OK" that night, the site turned really red, but I knew to watch for concussion type symptoms. Luckily none happened, and her MRI showed no damage. But boy, what a scare.

Mason.... Dr. Rekate talked to us that he does have the Basilar, but none of the nerves were being pressed on... which was a good sign. He asked several times if he had headaches... like holding his head, or rocking (signs of headaches with kids that don't communicate that well.) Mason doesn't do any of those things. We talked about his speech, and he wants us to increase therapy to at least two times a week. Dr. Rekate told us he doesn't have a lot of answers for Mason right now... that he is a special case, to which it will be a watch and see. He does not want to do a Fusion surgery on him at this age, for not a lot of symptoms. Because that would limit some neck mobility.
Dr. Rekate wants to see us in about a year and a half to two years, with both kids getting new MRI scans, and seeing were each is at. BUT, if Mason does not start to improve in his speech in the next year, we may need to think about other options. And of course if either one has symptoms that come up... to contact him immediately.
Dr. Rekate also looked over Ben's MRI again, we talked on ways to help Ben with his headaches.
So... All GREAT news!!! We couldn't have been happier. As soon as we left the hospital, we went back to the Ronald McDonald House cleaned up, packed up, and checked out!!! Gas in Long Island had started to become scarce, and we only had a half of a tank left, knew it was enough to get back to Philly, to stay with Ben's dad, then we could get gas in PA. We had heard from others at the RMH that friends had waited in lines for gas for 3 hours... and never got any. We didn't want to take that chance, run out, and get stuck there. So we headed back to Philly!

When we got to Philly, there was still no power, but they had gas. Later that night, Ben's dad got there power back. So did Ben's brother & family in Quakertown. Since the power came back, Halloween was on for the following night. Saturday we headed back to Quakertown, so the kids could go trick-or-treating with their cousins. They had a great time!

Then Sunday we headed to Pittsburgh, Pa to see Ben's Aunt, we had a great visit there. Then we headed back home to Oklahoma!!! We got in Wed. evening. I kept the girls out the rest of the week, we needed the sleep on Thur. Then today Abby and Mason had a few doctors appointments... nothing big, just yearlies, and Abby had an eye exam too.

We are so glad to be home, and even more so... I am so glad that I feel like our lives may get back to normal for awhile. No more frequent doctors appointments or traveling. I can also finally focus more on school, and replan out my next few years of school, and when I plan to apply for the Nursing Program.

Something I have learned out of all this, is that time with family really matters the most. We all live such busy lives, and I think sometimes we miss out on things because we are so preoccupied with jobs, school, after school activities, ... and so on. When Kay was dx with all this, our everyday life was so crazy... I was taking 13 hours of school, the kids were in activities, Ben was always busy with work. We were forced to slow things down... which made me look at the big picture. I have made myself stop worrying when things are going to get done, and have also learned its not a race, nor are we in a hurry. So as you read this.... be sure to look at the big picture, you never know when something is going to interrupt your life, and change it forever.

Crazy Couple Days

Where to begin!!! We arrived in Ohio Sunday afternoon, got into a room, had dinner... then was watching the weather, and decided it would be best for us to go ahead and drive into Philly. We left, and arrived in Quakertown, Pa (a little north of Philly, this is where Ben's brother lives) around 6am. When we got there, we crashed! But we beat the storm! The storm hit, we lost power. There was a lot of wind and rain, but not a lot of damage. We had a generator, so they were able to take care of their sub-pump, and have some light. Yesterday(Wed), they still did not have power, and trick-or-treating was canceled till Sat, so we decided to go ahead into NY, and check in at the Ronald McDonald House(RMH). We took the Lincoln Tunnel, ended up downtown.... big mistake. Half of the city has power, half does not. After driving around for a few hours we got out of the city, and arrived at RMH around 9pm. We got the kids fed, showered, and we went to bed.

We are now at North Shore Hospital, getting Kaylie's 3 month check up MRI and Mason's flex/extension MRI. Mason just went back, it should take him about 40 minutes, then they will do Kay. TCI was closed yesterday, I have not called today to see if they are open... but our appointments with Dr. Rekate aren't till tomorrow(Friday). I plan to call around later this morning to see where things are at... so we shall see.

Everybody is safe, and doing good. Just plans have change a lot! Will update everyone later!

On the road again...

Headed North, yes right into Hurricane Sandy! Kaylie has a MRI just to recheck everything. And Mason is having his flex/extension MRI so we can figure out more on his condition. We don't have to be in NY till the 1st, so we are going to stay in Philly with Ben'a family during the storm. Hoping we will be able to head in afterwards. TCI called me the other day to confirm appt. so things are still a go.

On another note: some know that Kaylie has been sick this past week. She was fighting, we guess a bad virus again. She had a sore throat, really high fevers, just not feeling well. We took her twice to our pediatrician, who ran strep swabs and culture... Both were negative. It lasted all this past week. She is doing a lot better, still has a cough here and there... But for the most part on the mends!
We will keep everyone updated!!

Happy Birthday to My Little Boy!

Today Mason turns 3 years old! I can't believe my last baby is growing up. We celebrated a couple weekends ago with my family, just because this week was so busy for us.

As it has always been on the back of my mind, as the time gets closer, I am starting to worry more. Mason will be having a Flex/Extension MRI to help let Dr. Rekate know more about all this Basilar Invagination is. Basilar Invagination is also called Cranial Instability, Retroflexed Odontoid, and/or Basilar Impression. I am shocked at myself that I have not wrote out all my questions for Dr. Rekate on this. They are all sitting in the back of my head... and I plan to write them all down during our drive.
I really have so many thoughts running in my head, and as much as I want to share them on here, for some reason I have been holding back. I think I just want to talk to the doctor first before saying my thoughts.
Anyways... I think I will go bake my little monster a birthday cake for today!

Just Busy... But Kay hit 3 months post-op!

Sorry it's been awhile, the past couple weeks have been really busy.

A PA from Duke University came out about couple weeks ago... our family is in the Chiari 1 Malformation Study. They took blood from all five of us, we signed some release papers, answered a questionnaire and that was about it. All though we won't see the benefits of all this.... maybe my grand kids will never have to go through this. To learn more about the Duke Study please go here.

I started back to school, this past week. Just the one online course.... Overview to Nursing. I registered for the Spring semester, I decided to only take two classes.... retaking the Anatomy & Physiology class I had dropped, and will also be taking Dev. Psychology. I am really glad to get back into school.

So Kaylie hit the 3 month post op mark!!!! No there was no party... but I was still excited to pass it. She has been doing really well! Back to school full time, she is playing at recess with the other kids, and her academics are good too! I don't have her in her PE class, she just takes an extra music class. I want more healing time to pass before she gets back involved in that. We have noticed a few little bumps in the road, nothing bad... I really just things that she will deal with for life. We have noticed with weather change the back of her head will start hurting a little. Also i have noticed when ever she has been playing hard, like running around... her incision gets really pink looking. I try to tell her to take it easy, but she knows she has to watch out for her head, thats what we say. She does a good job of that. Abby accidentally elbowed her in the back of her head the other day.... she hurt the rest of the night after that, but was fine the next morning.

It's looking good ...huh?? The hair is growing in, it does look a little pink here... but she had just come home from a friends house playing all day. That little bottom end part always seems to be the pinkest area... but if you look at it, or rub your finger over it... you can feel a suture underneath that is trying to work its way out/ dissolve.

We leave soon to go back to NY. Kaylie will have a MRI to recheck everything, and Mason will have his Flex/Extension MRI. Then we will meet with Dr. Rekate the following day to see Kay, and talk about mason's condition. We are excited to go, we will see some of Ben's family in Pa too.

This past Saturday, I held the first Oklahoma Chapter Support Group Meeting for American Syringomyelia & Chiari Alliance Project. It was great!!! I had 15 total there. I handed out information, talked about my goals for the group and everything else. I think it's going to turn into a great Chapter, that brings a lot of awareness and education to Oklahoma.

All in the Family...

It has been a crazy couple weeks. I think a lot of my emotions, like breaking down during my speech at the the CC Walk, and at church this past Sat. evening, have a lot to do with things that have been on my mind... and I had just not been writing, or telling anyone about. Ben went to see our pcp about a month ago, for headaches... Ben has always had headaches, I think I have just never noticed how much, because I just never paid a lot of attention to it all. But When Kay was diagnosed, I was watching everyone... a little closer. Started noticing that Ben would take Tylenol, Aleve, or Advil... about 4 to 5 times a week. I would ask him about it... and he would play it off, or just say it's all sinus related. I kept asking him to see a doctor... not for the fact of possibly having what Kay has... but if they were at least Migraines, he could get on a Migraine medication or something better to help. He kept saying no... but then after Kay's surgery... I told him I really thought he should... too many happen in a week. So we went to the pcp, talked to her about it all, and about Kaylie's situation... she decided to go ahead and do a brain MRI. We got the scans... and sent them to TCI. Ben said, whatever the outcome, that he really didn't want surgery... that he rather try medications, because he wants us to focus on our kids right now. I told him I would support him either way. So, the scans were suppose to go to Dr. Kula... the neurologist up there. But the scans are always reviewed by all the doctors together at one time. A few days before the CC Walk, we were contacted by Dr. Kula's secretary, they wanted Ben to set up a Skype appointment with Dr. Bolognese (a neurosurgeon). They would not give us any other information, just wanted to set up the Skype appointment. The appointment was made for Oct. 2nd. So many thoughts went running through Ben & I's heads... we were worried. The walk came, and we put on a smiling face, as I met others at the walk, I could only think of one thing that entire day. I really think that is why I broke down in my speech.... I just couldn't handle it all. Days went on, during our wait. There was even a couple days I saw my mom, and I could tell she knew something was bothering me. But I never lead on. We didn't want to say much, until we had all the facts. This past Monday came, at 2pm we waited for Dr. B to call in. We chatted for a couple minutes about things, then he put up the MRIs on the screen, still being able to chat with us via Skype, and point out areas of the MRIs he was showing us. (Which by the way, I have never seen Skype used like this... and was in amazement of the technology, being able to do that!) He said that Ben had a mild case of Chiari/ low lying tonsils. Ben's herniation is 4.1mm. He said that there was a partial blockage, but nothing severe. He said that surgery is NOT needed at this time. But, wants Ben to repeat MRIs yearly. He would like Ben to try some other therapy options before being put on medication. He wants him to keep in shape, work on good posture, loose some weight, look into any food allergies, try cranial massages, and/or acupuncture. If some of that doesn't seem to work with Ben's symptoms, and headaches, then we would talk later about a medication called Diamox. What he explained is it's a medication that helps with spinal fluid flow. We then talked a little about what links Ben, Kay & Mason, and talked a little about us coming up North in Nov. to see Dr. Rekate again too. That was about it.

The part that is under the line, is his herniation. 4.1mm

We have kept this quiet, Ben really wants to focus on the kids, and we will work together to manage his symptoms. We are very thankful that it is not nearly as severe as Kaylie's. Kaylie's situation was a no choice issue... she had to have surgery, she was completely blocked. Things for her could have gotten a lot worse.

With all this said, we have talked to Duke University. They are currently doing research on Chiari 1 Malformation. They are coming to Oklahoma this weekend, to talk to the families here that have more than one member with Chiari in their family. Here is their Face Book link on the study. Here is their website for it. They will be stopping by our house Friday at 3pm. I think this is very important. All though it will never benefit us 5 personally, but by the time my kids have kids... their could be new research about genetic links in how to have better treatments, prevention, or maybe even a cure. We are doing this for future generations.

We will be fine with all this new info, and God doesn't give us things we can't handle. I have to trust in him.

Power of Prayer

I wanted this to be it's own post, so I am writing it today, because I feel in the days & weeks to come I will be posting a lot more frequently. I don't ever talk a lot about religion, I don't know why, I just don't. But today's post is about prayer... and my thoughts on it.
Last night Kaylie & I went to Saturday evening Mass. For those that don't know what "mass" is... I am Catholic, and that is the term used for church service. When we typically go to Mass, we usually go on Sunday mornings, but I went to the Sat. evening one, because there was a lady I wanted to meet. Her name is Barbara... and I know she is reading this now. She has always kept up with Kaylie's blog, sent cards... and I know she prays a lot for Kaylie, and our family. I didn't know much about her, until after I announced that I was leading an ASAP Chapter for Oklahoma... she immediately sent me a letter. She has a condition called Scleroderma, and she is the Vice President of their Chapter for Oklahoma. She told me about the same struggles that Chiari has, and how their biggest goal was educating the doctors as well. She also told me about a program that OU Medical puts on yearly called Continuing Professional Development, and how they bring in well known doctors or speakers of a condition... for other local doctors to come to a 4 day seminar to learn more about different medical conditions. Barbara gave me all the info to contact the right person to get involved with all this.
Anyways... Barbara gave me her number, and I decided to call her... for one, I want to Thank her again for all her support, and tell her how much it means to us. We talked for awhile, and she told me she went to the Sat evening Mass. Kaylie & I went... Ben had a really bad headache. So, we went, we met Barbara... such a lovely lady. She told me at the end of Mass, on every end of the month that Father did the Sacrament of the Anointing of the Sick. Basically, personal blessings. Barbara asked if Kaylie & I could join her.... and of course we did. Here is where my post comes in about Prayer.

I know thousands of people have said prayers for Kaylie, and our family. But, there is something different when a Pastor does it.... at least I think so. Father went around with oil, and blessed all that was there, mostly elderly, Kaylie was the only child. And of course I broke down. You know, I did this the last couple times she was blessed. When we were at St. Patrick's in NY, and then in the hospital, a Rabi came by her room (North Shore is a Jewish Hospital). But this time, I really thought to myself I wouldn't break down... I have been dealing with all this for the past 7 months. I had thought I was past that point of getting teary eyed all the time. The kicker of it all... I really don't know what set me off. Was it the fact that here is this child amongst all these older people.... or have I not come to terms with it all? I know she will deal with this the rest of her life... right now.. things are really good, but I can't help think what goes on when she gets older. As we walked to the car yesterday evening, Kaylie asked if I was crying "happy" tears (because that is what I tell her all the time)... and I told her yes, I was happy that she was blessed, to help her, and that I was happy she was doing well. Little does she know I was crying because I hope everything I am doing ... is the right thing, in setting up the road ahead of her for her future. I hope one day when she is older she continues this blog, is the leader of the chiari support group, or takes herself to be blessed.... because she is so strong.... because of prayer.

I believe in prayer... more so now, than I ever have. I believe prayer got her through her surgery, and prayer is what will get her through the rest of her life.

BIG News...

It's official!!! Oklahoma has an American Syringomyelia & Chiari Alliance Project Chapter!!!! What's this mean??? Well, to the Chiari Community, it means a lot of different things... but most important, it means the next time an Oklahoman is diagnosed with Chiari and/or Syringomyelia, they go to Google it, and come across ASAP.org, and go under support.... their state, the state of Oklahoma will have an official support group... and they will know they are not alone!!! I know it doesn't sound like much... But it's a lot! It took me forever to find other Oklahomans... and now I feel like there are so many!
There was a lot of thinking and deciding going into this... I guess I should add... I am the Chapter's leader. So each month I will host a support group meeting. Also as a leader I will help spread awareness to our medical community, and put ASAP events on to raise funds for research. Yes, its a lot... No, I have not forgotten about school... I will still be working on becoming a RN! To help understand why I did this, below is the letter I sent as a message to other chiarians in Oklahoma. I had let them all know what my plans were about a week ago.

Please Click on photo to go to their website!

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I first want to say, Thank You to everyone in this group. We all come from different walks of life, yet we can come together to support each other at our worst days. I sometimes rather talk to you all about what is going on with Kaylie, than my own friends or family… because you all get it. I have talked about how I feel about neurosurgeons/doctors… and that I feel… you have to find whats best for your family. Some of you also travel, and some stay in state, and I support everyone, no matter who you use. All though I have not had good treatments or appointments here at home… others of you have had the best here, but there is always room for improvement… with every doctor, nurse, or hospital. When I had so many problems I reached out to the three Big organizations… Conquer Chiari were the ones that told me about Stephanie, who she brought me to this group; they have also supported Kaylie, and her story by putting her as a Faces of Chiari child on their site. Chiari & Syringomyelia Foundation (CSF), all though I haven’t had personal contact with them, except for some of their doctors on their medical advisory board… they have such a great website full of information, and videos. American Syringomyelia & Chiari Alliance Project (ASAP) was the first organization I found when Kaylie was first dxed. Their members reached out to me, at my worst times.

When I was first added to the Oklahoma FB pages, Stephanie had talked to the OKC area about how we should start a support group. I know she knows this was something I was looking for, needed, and wanted to help start. Just at the time, it wasn’t good timing for me. I needed to focus on my daughter, and prepare my family for her surgery. Because the surgery was not a cure, and we now have to deal with my son, Mason… I want to make time for that support group. I love the fact about raising awareness, and fund raising for research…. But there were times I really needed doctors to listen to us, and that’s something hard to have when a support group doesn’t have a big organization backing them.

I have decided to start an ASAP Oklahoma Chapter. We will be nationally recognized. And the next time there is someone newly dxed, and they look at the big 3 organizations…. They will come across ASAP, and find that there are others in OK, and know there will be immediate support for them. I chose ASAP… for many reasons. First they are a strong organization, very well established, and have a very big medical advisory board that backs them. They also support; support groups. Meaning they help the group get info out to the medical community you live in, which is needed here. CSF does this too… in fact their medical advisory board pretty much consist of the same doctors… just maybe a couple different ones. But I know for a fact that all those doctors support both ASAP & CSF. My own neurosurgeon sits on CSF’s board, but also does ASAP’s conference every year. I think CC is great… but they don’t support support groups, and I don’t see them backed by a lot of big doctors. You can’t start a chapter with CC.

With starting a Chapter with ASAP, I had to sign Non-disclosure and Statement of Understanding forms. I first want to say Both ASAP & CSF makes you do this, and what that means is that; I as a leader of a chapter for ASAP, I can not fund raise for another Chiari non-profit/organization. I thought about this for a long time, talked to the group at the OKC meeting and many friends about this, had a lawyer look over the forms, and spoke to other friends that are involved in other big non-profits about it. But my deciding decision was when I saw Kaylie’s pedi the other day for a check up. We both had news to tell each other… She told me that she had just dxed another child with chiari, and since she couldn’t break Hippa laws, asked if she could give my information to the family. Of course I said yes! Then I talked to her about the chapter. She told me I would have more support, and willingness to learn more about Chiari from other doctors here, if I was backed by an organization that was backed by well-known doctors.

With this all said, I had already made plans to walk in Conquer Chiari walk, I have my family and friends joining me, because they know how important it is to me. I talked to ASAP’s board about it, and they understand I had already made commitments to CC to do that, and to the other Oklahoma Chiarians. So, I dated the papers Sept. 23^rd, and ASAP will announce our Oklahoma Chapter after the walk.

When I signed those papers, it was only signing me as a leader, not those who decide they want to come to group meetings, or participate in ASAP events that I will put on. Just I can’t attend other Chiari non-profit events. But I fully support everyone else doing so. I wish the 3 groups could come together… but like all major illnesses; there will always be more than one non-profit for a condition. I hope my fellow Oklahomans support my decision.

Thanks,

Amber 

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Again, I hope this brings a lot more awareness to Oklahoma, and that many good things come from it!!!  Our first ASAP support group meeting will be Oct. 20th at 11am at the Southwest Oklahoma City Public Library at 2201 SW 134th, Okc, Ok. The email for this Chapter is: okasapsg@gmail.com