Friday, November 30, 2012

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.

Thursday, November 29, 2012

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!!!

Monday, November 19, 2012

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 -,,20187961,00.html

Managing Chronic and Recurring Pain: Pain Types and Classifications -

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

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

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!!! 

Friday, November 9, 2012

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.

Thursday, November 1, 2012

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!