Monday, December 31, 2012

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!

Thursday, December 27, 2012

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.

Saturday, December 22, 2012

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!

Wednesday, December 19, 2012

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.

Sunday, December 16, 2012

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.

Saturday, December 15, 2012


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!

Friday, December 14, 2012

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!

Wednesday, December 12, 2012

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.

Tuesday, December 11, 2012

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.

Sunday, December 9, 2012

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.

Saturday, December 8, 2012

Boomer Sooner Elfy!!!

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

Friday, December 7, 2012

Sticky Fun!

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

Thursday, December 6, 2012

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!

Wednesday, December 5, 2012

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.

Tuesday, December 4, 2012


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.

Monday, December 3, 2012

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!!

Sunday, December 2, 2012


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


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.