Saturday, June 30, 2012

Hot Summer Day

It is so HOT here in Oklahoma!!! It's to that point, that if you are not swimming, then you need to be inside! The other day after vacation bible school, I took the kids swimming with a couple of their friends. Below is Brinlee & Kaylie.

Yesterday, Kaylie and I went to a few places to hand out posters & flyers for the Chick-fil-A event. More places to go on Monday. Kaylie's picture and link to her blog was placed on a page called "Faces of Chiari" on Conquer Pediatric Chiari website. Click here to see it! What a cutie! Also a little bit of media news! On July 6th we will be doing an interview with Moore Monthly, on July 11th an interview with Norman Transcript, and on the morning of July 17th we will be doing a live interview with Freedom 43. Chiari Awareness!!!

OU RAFFLE!!!! So after talking to Cynthia, the OU signed football & jersey and a few other donated items will be out at Art in the Park on 4th of July in Moore at Buck Thomas Park. The items will be with the Crime Stoppers booth. You will still be able to purchase raffle tickets up to 5:30pm. At 5:30pm, Kaylie will draw the winners of the items, and announce the winners on stage!! If you have purchased tickets, you do not have to be there, we will be calling the winners to set up times to pick up the items, and to take a photo with Kaylie! We truly appreciate everyones support!!!!

Thursday, June 28, 2012


Kaylie did this at VBS... how true and simple this is. He also doesn't give us anything we can't handle.

Wednesday, June 27, 2012

One Month from Today

One month from today, will be July 27th. At this very moment, in one month.... I will be holding a stuff cow, thinking of my baby girl in surgery. I will be watching the clock... as seconds turn into minutes, and as minutes turn into hours. I will be watching a set of doors, waiting for the slightest movement of them, in hopes of seeing a nurse or doctor come through them to give me an update. I will be crying on my husband's shoulder, in fear of the worst, but hoping for the best. One month from today, Kaylie will have the surgery that in hopes, changes her life. Last night I realized what today was. My heart sunk to the bottom of my stomach. And all I could think is that it is now down to counting days.

Yesterday I came across an amazing article off a post on Face Book that was being shared around.
The organization, Conquer Chiari, is the same organization that is holding the walk/run, September 22nd in Tulsa, Ok. As soon as Abby & Mason's MRIs are done on July 9th, I will be starting a team for this walk/run to help raise money for this research group.
On another note... lots of fundraisers going on! Important dates to keep in mind. July 4th will be the raffle drawing for the Bob Stoops signed football & jersey. Again you can purchase tickets for $2 each or 6 tickets for $10. If you would like to purchase tickets, Please contact Cynthia Orange, with the Moore Police Department at or call 405-793-5138

****And last but not least.... JULY 17th!!!! Come out to Chick-fil-A in Moore between the hours of 6-8pm, and support Kaylie!!! We are still collecting the soda can tabs for the Ronald McDonald House Charities. If you would like to bring your collection to Ben or I the night at the Chick-fil-A event, that would be great. If not... we will need to pick up all collections by July 22nd.***
Thank You again for everyone's support, we couldn't do it without you!!! We truly appreciate it!!! XOXO

Tuesday, June 26, 2012

OU Football

We wanted to say a special "Thank You" to The Thompson's at Masters House Art & Frame, for beautifully framing the Bob Stoops signed football that is up for raffle. They are also doing the jersey too! Outstanding job! We truly appreciate your kindness!!

~The Barnes Family

Kay's Heart!

Today we saw a wonderful cardiologist! Dr. Sherri Baker. She was super nice, and very good with Kay! They did an EKG & Ultrasound... and everything looked great! She does have a benign murmur... but has NO restrictions on it, doesn't need anything done... and most important is all clear for surgery!!! Dr Baker even said there was no reason to have a follow up! This is really what I expected... Mason has the same (he went to a different Dr, when he was younger) Just some people have them, and some don't... but its no biggie!!!! Love good news like this!!!

Monday, June 25, 2012

OU Jersey!

Just wanted to put this on here.... this is the jersey signed by Bob Stoops! It's a real jersey... the kind the football players wear on the field for a game... not like the kind you buy in a store. It was really neat! Also, as you can see in the pic, the football has been boxed/framed. It's a really nice set up! Don't forget: The raffle is July 4th, and tickets are $2 each, or 6 tickets for $10! To buy tickets, contact Cynthia Orange, with Moore Police Department at


Friday, June 22, 2012

MRI Appointments...

I got a call earlier today from OU Childrens, they were able to get Abby & Mason's MRIs scheduled for July 9th! Here is to ruling out Chiari & Syringomyelia on them!!!! Everyone keep your fingers crossed!

Thursday, June 21, 2012

Posterior Fossa Decompression

*** This post has graphic pictures.

Posterior Fossa Decompression.... this is the name of the surgery Kaylie will have on July 27th. I will first explain how the procedure is done, then the risks involved... and then talk more into doctors/surgeons. Kaylie will go in for pre-op testing on the 26th. Kaylie is currently only taking Naproxen for medication right now.. as needed. She will not be able to take this medication, or other medications, like ibuprofen 14 days prior to surgery.
Dr Rekate explained that his part in the surgery is about 4 hours... open to close. But, because of anastesia, positioning, IV starts, in surgery monitoring (the flow)... it will take about 8 hours.
They will have to shave about a 2" wide landing strip of hair. They will pin her hair up some, so that when her hair falls back down it will cover some of it. Kaylie's hair is pretty thin... so it will be interesting to see how we work with it.

Let me first state... I hope I explain this correctly, if I don't, I will correct it. But this is what I got out of it. First he starts by removing a small piece of bone, from the back of the skull. This will allow more room for her brain. Then the dura (the outer covering of the brain and spinal cord) is opened. He does this to help correct the CSF (cerebrospinal fluid) flow. I believe if there has been any scaring in this area, due to all the compression, they will try to remove it. Because that dura is opened... it has to be patched. Some surgeons use manmade patches, but Dr Rekate will be grafting a patch from her inner layer of her skull, to use as a patch. This will help in less infection, and less of a chance of her body rejecting it. Then he uses a very small and thin titanium bridge, that will go over the patch. This bridge helps protect the patched dura area from anything pushing down on the dura muscles. Then he closes her up, with dissolvable stitches.

There is a lot of controversy over this surgery with neurosurgeons. Some feel they should be more conservative, by NOT opening the dura. Where other neurosurgeons are a little more aggressive, by opening the dura. There has not been a proven right or wrong way. This is still an area that is being researched on. There is more risks involved with opening the dura. The biggest one is a CSF leak. The way Dr Rekate explained it to us, is this can happen when a patch is being sewn in, and it is accidentally punctured, or from a tear that happens in the patch. But I LOVE being able to say these next words... he told us in his 30 years of doing this procedure, he has never had that happen. There is also more risk of infection when the dura is opened. Another risk with this surgery is what is called chemical meningitis. This risk is with any decompression surgery. This is an inflammatory condition and not an infectious one. Usually treated with cortisone type medication for a few weeks. and once medication is started symptoms are relieved pretty quickly.

Now, I know a lot of you are probably saying why would you take that risk??? For several reasons. First, and for most, Kaylie has a lack of flow, because she is obstructed. She NEEDS her flow corrected. Second, doing it this way is a better chance of her NOT needing to have the surgery repeated. There is a high percentage of patients that end up having to have a second surgery, of opening the dura, because there is too much scarring built up, and sometimes because not enough bone was removed.
Ben & I feel very strongly in that this is the correct way for Kaylie, and the right surgeon for her.
Removal of the bone.
Explaining where the dura will be opened, and patch placed.
I added this pic, to prepare everyone what the incision will
look like. It could look a little better/cleaner than this... or it could be a little worse.
But this is a general pic of most of them. This is closed with stitches, if
Posterior Fossa Decompression is googled, some are closed with staples.
Staples are a little more harsh looking.
In Dr Rekate's video of a conference he did, almost towards the end of him speaking, you can see the surgery being done, and the titanium bridge that he uses. (I do warn, it is very graphic... complete open surgery being shown.)

After surgery, Kaylie will be in PICU for two days, then another two in hospital. If everything is going well, we will be released to stay in the area for another 3 to 4 days. Then if everything is still going well, at her appointment in his office, we will be released to travel home. The typical recovery time is about six weeks, she can't go back to school until six weeks after surgery. But we will decide how she is doing, and when she will go back. Dr Rekate typically likes to see his patients back at 3 months, and at a year... if all is going well. Of course we can see him anytime. He also said that if things are going well as we are at home those first three months, then we can do a Skype visit, then plan to see him at a year. 
Im sure you all remember Holly, that I had talked in several posts. She just turned six weeks the other day. At three weeks she was out and about at Target. She has also been swimming the past three weeks! She is doing very well, her mother says. 
This surgery scares me so much, but at the same time... Im ready. I am ready for her to feel better, and have less pain. If anyone has any questions... please feel free to contact us. 

Also... Kaylie's cardiology appointment is this Tuesday, the 26th.

More OU!!!!

Ok... So there is now a signed OU jersey by Bob Stoops up for raffle! And the signed OU football by Bob Stoops raffle has been extended to July 4th. Both raffles will end on July 4th. 
Raffle Tickets:
$2 each   OR   6 tickets for $10
Drawing will be July 4th

If you would like to purchase tickets please email or call Cynthia Orange (City of Moore, Administrative Assistant to the Chief) at or 405-793-5138

Photo of Kaylie and the jersey to come soon!!!

Wednesday, June 20, 2012

How I do it & Why I do it...

I get told a lot, "I don't know how you do it", and a lot of, "I can't imagine..."Yes, it is a lot to take in... Chiari is one of those hard to explain, hard to comprehend conditions, that no one can explain why it happened or how/what caused it to happen. That is why awareness is SO important! There is so much research going into trying to answer those questions... and looking at the genetics of it all.
I don't know how I do it either.... I spend a lot of time, reading, researching, watching video conferences that doctors have done, fundraising (for my daughter, right now).... all along with taking care of my family, and soon starting another semester (low key one) at school. I'm tired, I'm emotionally drained, stressed... and everything else that comes along with it all. But I do it ALL for her. I am doing it for my grand kids... that hopefully several years from now I will have. I do it for all the other parents, that at this very minute are finding out that their child is diagnosed with Chiari 1 Malformation and/or Syringomyelia. I do it for all the adults out there, that have been passed from doctor to doctor... trying to find out why they feel the way they do, or that it has taken so long for them to be diagnosed. That first month of finding out... was the worst!!! I felt like someone had put a huge bolder on top of me, and I had no clue how I was going to get out from under it. And I had to find a way.... because if I didn't .... no one else was going to do it for her.... she can't. She is only 5. This is why I do what I do. This is why I have a blog for her, a Facebook page, awareness bracelets made, shirts made... because once we get past this huge hurdle of surgery... I want to make a difference for the Chiari & Syringomyelia World. I want more chapters started in Oklahoma. I want these well expert neurosurgeons to come to Oklahoma and do conferences here, to help our local doctors learn more about this. I want to fund raise for more research, and especially in the genetics of it all... so that my great, great, great grandchildren don't have to go through all this.
I have been contacted twice through Kaylie's blog from parents that their child was just diagnosed, and told me that Kaylie's blog has helped them a lot. Everywhere from information, to just not feeling alone, and that it made them feel better. Hopefully there are a lot more out there, and they just don't contact me... which is fine, I'm just glad it's helped/helping someone.

So... this is "how" & "why" I do it.... I know every parent would!

Tuesday, June 19, 2012

Kaylie is finally getting over her strep throat... now to just stay healthy for the next couple months!!
Got a call from her pediatrician today. Abigail & Mason's MRIs will be ordered soon. Also, we talked about Kaylie getting in to see a cardiologist before the surgery too. Kaylie has had an off and on heart murmur for awhile. Dr Marcy has never thought it was serious, just one of those growth spurt ones that kids can get here and there. But, she feels since Kaylie will be having major surgery, that it might be a good idea just to make sure its nothing, by a cardiologist. I completely agree!!! We don't want any issues or surprise issues during surgery. That appointment should be scheduled soon. When I get appointment dates, I will let everyone know.

Fundraising.... where should I even begin?!?! We seriously can't "Thank" everyone enough for all that you do!!! There are so many fundraisers going on for Kaylie, I don't believe I even know about all of them. The city of Moore once again this week are doing "Thunder Casuals" today and Thursday. Some of you know that my mother works for DHS, and I hear they have been doing lots of different fundraisers too. They have been doing Thunder Casual days, Gift Basket Raffles, selling pieces of cake, some type of a balloon/cash raffle... the list goes on! I have heard rumors of an OU jersey (signed) possibly going up as a raffle... and maybe a 10K run for Kaylie. When I hear more details I will let everyone know. We are truly blessed to live in such a caring community...more less state.
Also, if you haven't heard, we will be doing a fundraiser with Chick-fil-A of Moore on July 17th, 6-8pm. Fliers will be available soon to pass out, along with a few posters to hang in local businesses.
We hope everyone can make it out. It should be a lot of fun. Moore Police will have police cars, police dog and other law enforcement type activities. Moore Fire Department will have their fire trucks out. There are talks of a DJ and an inflatable bounce house too!!!

We are still collecting the soda can tabs for the Ronald McDonald House Charities. If you would like to bring your collection to Ben or I the night at the Chick-fil-A event, that would be great. If not... we will need to pick up all collections by July 22nd.

I'm starting to think I could have divided up this post into a couple of posts... but, one last thing. Sometimes there are anonymous donations made to Kaylie's account, or generous gifts left in my husband's box at work. I always like to send a "thank you" to everyone that does these acts of kindness... but without knowing who you are... I have to tell you this way....Thank You, we sincerely appreciate your kindness. This picture below is for you!

Friday, June 15, 2012

Kaylie woke up again with a really bad headache.... immediately went to the bath, when she finally got out, I took her temp, and she still had that low grade fever of 99.3. She was acting a little different too, so I called the doctor's office, we went in... and she has Strep Throat!!! As much as I ate to say it, I'm so glad it's something else... and at least we can get antibiotics started now, and hopefully she won't get sick in July! Oh this girl!!! If its not one thing, its another! I'm just glad I trusted my gut, because I felt something was not right!
One of the Dr office ladies gave Kay a donut! They are so nice there!!
I think this is one of my favorite photos of her.... I LOVE that smile!
Now to go Lysol my house.... hopefully no one else gets sick!

Thursday, June 14, 2012

Long Day...

I thought today was going to be a good day... I went for a walk first thing this morning, got the kids up and ready, did a few things around the house.... then about 9:30/10am Kay started to have a really bad headache, and running a low grade fever... that comes and goes. Her headaches are daily, and she has learned how to deal with them... but today was a very bad one. I know this because of how often she complains about it, she starts taking lots of warm baths, heating pad is out all day... she spends the day on the couch. I gave her Naproxen, which usually makes it go away for a while... but it didn't work today. She complained even more, about her ears and eyes off and on too. I hate these days.... because there is nothing I can do.

Today in one of my Chiari Oklahoma groups... several people were saying that today has been really bad for them. A few even talked how they thought because the barometric pressure was rising due to storms slowly moving in tonight... was causing all this. So I looked into barometric pressure and Chiari... I guess pressure headaches are noted a lot dealing with barometric pressure. Then I thought about when we were flying to NY how... Kay started with a headache, then the eyes, ears, throat, then nausea... then she got sick! I think it was too much pressure change for her to handle. It worries me a little because we are thinking of flying for her surgery.... its so much faster to fly... but I don't want her to hurt... and even after the decompression.... they say she will have head pain for a while... and that it slowly goes away. I think I will email Dr Rekate more on all this....

On another note... I still haven't talked about the surgery... I am in the middle of writing that post, but in it, I talk about Kaylie's hair... and how some will be shaved, not too much, but with her hair being so thin as it is, I do think it will be very noticeable. So, I found this organization that donates caps/hats for chemo and brain surgery patients. They sent Kaylie 3 hats!! The organization is called Knots of Love.

She doesn't know what the hats are for... we think she thinks they are for the winter... I don't even want to deal with that right now! We will deal with that at a later time.
* Cute butterfly...huh?? The first time I put this photo on, I didn't realize her nightgown was hanging a little low!! Love photo editing!

Thunder Thursday!!!

Kaylie wanted to say a BIG "Thank You" to all the city of Moore employees for Thurndering it up for her!!! City employees got to wear their Thunder Casuals today, and all proceeds went to Kaylie! We LOVE this city we live in, and are so proud that her daddy works for them!!! We love you Moore!!!

Tuesday, June 12, 2012

We wear Crimson & Cream Proud!!!

The email was just sent out!!!!

Bob Stoops sent Kaylie an autographed OU football to be raffled! All proceeds will go to Kaylie’s surgery July 27th

Tickets are $2 each or 6 tickets for $10. Drawing will be held June 22nd. Get your tickets today by contacting:

Cynthia Orange
Administrative Assistant to the Chief
Moore Police Department
117 E. Main St.
Moore, Ok 73160
Ph: 405-793-5138
Fax: 405-793-5140

Also they still have books to sale “The Gift” by Kevin Barnes with OCPD. Great Book!
They are still taking orders for the handmade bracelets too!

We would like to say a special “Thank You” to Cynthia for all the fundraising that has been going on. We really appreciate it!!!

Monday, June 11, 2012

Past couple of days...

The past couple of days have been hard on me, I like to blame it all on my hormones right now... but I think I have hit a low lately. Monday always brings me lots of phone calls to be made, or things that need to get done. Today I went to our church to sign the girls up for VBS. And of course while I was there I broke down. Then Mason had a speech meeting with the public school system, and in the meeting I broke down. My thoughts the past few days have been running a mile a minute.... and I feel like I can't stop thinking. I feel like I am back in that place when Kaylie was first diagnosed with all this. I knew surgery was going to be recommended.... but until it is actually told to you... I think you always have this small, inkling of hope. I know she needs this surgery. I know that is has a huge possibility of making her more comfortable.... but I am so scared!!! I sit here thinking what am I going to do when she is crying in the hospital bed, because she hurts, and there is nothing I can do but hold her. I worry that she will loose trust in me.... because I have always told her I will never let anything hurt her. I'm scared of the actual surgery and all the risks. I'm scared for my other two children.... and that they have a possibility of having this. I hate the fact that I go to bed at night, wake up and this whole ordeal is still here. I just need to find my strength again.... and continue fighting for her! Sorry... but I have told y'all all before... writing is my best release!

On other notes... My school. A lot has gone on since I dropped that A&P class. A lot of details I just don't want to go into. But... it all came down to me having to meet with the Support Services at school, and I had told them I didn't think I would be able to take the A&P class that I enrolled in for the Fall. But I was told they would suggest I think about taking the semester off... I told them I was interested in at least taking two classes... but they then really suggested the one. So after signing some papers that I will meet with them before the spring semester.... I will only be taking my Overview to Nursing class this fall. I was really upset when I left the school.... because I have worked so hard to get to where I was at in school. And believe me my kids will always come first.... it just hurts. I'm sure it is for the best... :/

I referred Kaylie to Make A Wish. They have to talk to the doctors first before deciding if they will grant her a wish, so we will see. I was thinking there really needs to be a wish grant type organization out there for parents!!! To grant relaxing vacations after you get over some of the medical hurdles... just for you and your spouse. Maybe I will start something like that. I will start thinking of some names! I am so grateful or Ben.... and how he has handled all this! Medical issues become a huge reason why spouses get divorces. When Kaylie was first diagnosed... on the way home in the car from that appointment.... I told him we had to make a promise to each other that we would NOT let this come between us. And we haven't! I think it has brought us closer. There are a couple moms from the groups I read, and their husbands have left them... all over this. I feel so bad for them, because I can't imagine facing this alone.

Well.... I am feeling a lot better now! And to the wonderful ladies that I saw today... sorry for all the water works!!! Just one of those days!

Thursday, June 7, 2012

Ronald McDonald House Charities

Today was a good day!!!! Besides that our pediatrician is behind us, today we got to visit our OKC chapter of Ronald McDonald House. In New York we will be staying with the RMH, it has already been set up by Christine, Dr. Rekate's secretary. Who by the way... is awesome!! The RMH Charities collect tabs (like from soda cans) to help raise money for their organization. Believe it or not... these little tabs bring in a lot to them. Our family is so grateful for all the support we have had, and want to give back. But as you know, right now it is hard for us to do that. So I thought that we could collect tabs for RMH Charities, and when Kaylie goes to NY, she could give back to a charity that is helping us so much. I picked up 7 cute, little houses today... hoping to spread them around so we can have help in collecting them. I am going to try to put one at Ben's department, Library, City Hall, My mom's work, my mom's, and I have a couple extra. You can also send Kaylie your pop tabs if you would like to:
Kaylie Barnes
PO Box 7881
Moore, Ok. 73153

While we were there, we met some fabulous ladies that work there. They gave us a tour of the house, and explained what was offered to the families that come there. Meals are almost 90% taken care of at these houses by local volunteers. It was amazing to see how much our community pulls together, and helps people at difficult times in their life. I can not wait for when we are over this hurdle to volunteer some time at our OKC chapter.

So that was our day... a lot of happiness! Stay tuned for some exciting news on Monday about a fundraiser that is being done for Kaylie!! Let's just say do you bleed Crimson & Cream????

She is on board!!!

I just wanted to make a quick post, that we met with our pediatrician today, and I am ecstatic to say that Dr Emily Marcy is on board with us!!! I have kept her name private for so long, just in case things did not work out... but I am so happy they have. I can not say enough good things about this wonderful woman! She has been in our lives for the past 5 years... and she is truly amazing! Thank You to her, and her staff for always listening to me, and for being so pro-active when I had complained about Kaylie's headaches. We have a great team of doctors working with us, and things are going to go great!!!

Wednesday, June 6, 2012

After a lot of talking between Ben & I, we wanted to let everyone know, that we have decided to go with Dr. Harold Rekate, from The Chiari Institute. We have a 100% confidence in him, and feel he is the right doctor for Kaylie. With this said, Kaylie's surgery appointment has been set for July 27th.

While we were consulting with Dr. Rekate, he told us about a lecture he did, and I wanted to post it for whoever is interested. The name of the lecture is called: "Chiari Malformation: A Name Which Leads To Unnecessary Confusion"

Click here----> Video

Tuesday, June 5, 2012

The Chiari Institute

We got up very early to be at The Chiari Institute on time. Our appointment was to meet with the nurse at 11am, then at 12pm with Dr. Rekate. The drive there wasn’t as bad as we thought. Kaylie and I talked with the nurse… basically getting a lot of medical history, even on Kaylie’s siblings. Then of course the normal vitals… weight, height, blood pressure. etc. Then we waited awhile to see the doctor. When we finally went in to meet with the doctor Ben & I thought Dr. Rekate was very inviting, warm, and very down to earth. He is very knowledgeable about Chiari, and with that said I was very impressed about how he handled his expertise. I have been around a lot of doctors …especially since having three kids… and it can get very frustrating when your having a consult with a specialist…. And they act higher than you, or they feel like you don’t deserve their time to ask all your questions about your child. Dr. Rekate was the very opposite of those types. He treated us like the human beings we are, and also had a genuine concern for our daughter.
            When he first came in, he told us right away that Kaylie’s case was severe, and that her herniation was really 15mm (1.5cm). I immediately got upset… for so many reasons. I asked him right away, how he got that, since we have been told 3 different sizes. The first time was by Kaylie’s neurologist that she thought it was possibly 9.5mm, Then on the last MRI, in two different areas of the report, it was said that it was no less than 1cm (10mm)… then later said it was 8mm. Size doesn’t make a difference… but what upsets me is the fact that our local radiologist and neurologist is measuring this stuff wrong. Seriously…. Can you imagine other kids being dx with this… but told it isn’t herniating that much, or it’s  “a mild” case… and there parents never seek out a specialist… because they trust what they are being told???? I truly believe that our Children’s Hospital and our local neurologist do have our child’s interest best at heart. But I also believe because this is such a rare condition… there is a HUGE need for more education of it. It can’t hurt these doctors to go to a conference or something!  Sorry… for the short rant… but that’s how I feel. I knew Kay had this, I knew surgery was going to be a possibility… but when the first thing you’re told is that it’s “severe”… it hits you hard. And it makes it worse knowing, that the MRI your child just had… you still have not gotten a call from your neurologist.
            Anyways… back to Dr. Rekate. He explained that he correctly measures the herniation by starting at the two lower points of the Foramen Magnum, then measuring down to the end of the herniated part of the brain. And it comes to 15mm. He told us that her brain was like a stopper in a sink. That it was fully stopping up the Foramen Magnum, and that every time she coughed, sneezed, or cried… it was just getting plugged more. He explained to us how she did not have a syrinx or tether cord, and how because of this herniation… that every time your heart beats, it helps flow the spinal cord fluid… and her fluid was having a hard time getting through. It is like a piston. Because of this, he recommends decompression surgery. I will go into detail and how the surgery is done in a later post. But he had also said that what made him more concerned, was that Kaylie was getting help with her speech, and that when she was an infant, she had horrible reflux. He said those two things are known to happen with kids with Chiari. And said that with decompression surgery, besides the fact of the pressure pains (i.e.: headaches, eye pain, ear pain) possibly going away. Her speech would significantly improve, and she wouldn’t be such a picky eater. He said that these children that have chiari, could complain that their throats hurt, cough often, and sometimes gag a little while eating… due to all this. I told him that I had only seen Kaylie gag a few times while eating… and he said that the kids at an early age learn to control that, or choose foods with certain textures, to help prevent that feeling.
He told us he thought this would be her only surgery… that there is a very, very small percentage that she would need another one… due to her age. He said if she was two… he could most likely say she would have another, and if she was 10 he could almost be 99% sure she would never. He really thinks she would not need another.
Complications: We asked if we didn’t have the surgery, what were the risks. He said she is not going to die from this or anything like that. Only that she would live a miserable life, in pain. She doesn’t have a syrinx now… but if she continued to live life with such a severe herniation/and crowding… there is a possibility that one would form, or she could become Hydrocephalus. These things that could form because of not having surgery could a bad outcome.
The complications of the surgery: the top complication is what is known as a spinal fluid leak. When I talk about how the surgery is done in a different post, I will go into details of how this happens. But, He said in the 30 years that he has been doing this procedure, he has never had a child end up with a leak, after his procedure. The 2nd biggest complication is chemical meningitis … he said this type of meningitis presents the same symptoms as normal meningitis, but it is not as severe. And you just give the child antibiotics, and it ends up going away. And you don’t know about this, until about 2 weeks after surgery.
He said she would be in the hospital for 4 days… the first two days in PICU, then he would release us to stay in the area about 3 to 4 days. Then we would come in to see him, and if everything were going well, he would release us to travel home. He said typically he likes to see a patient 3 months after, and then in a year. And as he was saying “But”… I immediately said what ever is needed in traveling we would do… probably 10 minutes later, he said that if everything was going well at home, we could do a Skype visit, and then plan to come out in a year.
He said that the recovery time was about 6 weeks, and that’s how soon she could return to school. I had told him her school was very supportive in anything she needed, and that an IEP was already set in place, for the next school year. He said there are NO restrictions… with sports, or riding roller coasters at Disney!! J The only thing he gets concerned about is boys, and football…. Just because of the risks of concussions.
We asked if we still needed to see a neurologist or could we just go through our pediatrician. He said we didn’t have to, but as long as our pediatrician was on board with the treatment plan, and would order follow up MRIs as/when needed. He said she didn’t need to be on any medications, as we have found out, not a lot works to relieve these symptoms, but not only that he said that the toxicity percentage was greater, he recommended just staying with her naproxen as needed.
We talked a great length about genetics and the hereditary factor in all this. He explained to us that the field is still trying to figure out and do research in what causes this…. Because the skull formed a little smaller than needed, and her brain caught up, it had no other option but to protrude down.  In the way he talked to us, he seemed to think that the size of the bottom portion of the skull was hereditary, and that there was a good chance that Abigail and Mason could have this. But there was also a good chance they may not. He said it doesn’t hurt them, or anything else to have MRIs done on them. And especially since all three of them had eating issues when they were babies, and they all three have speech issues.

We asked if there were any signs of any related conditions to Chiari… he said her MRIs showed none.

Overall we were VERY pleased with Dr. Rekate, and his staff. Yes, we do still have the appointment with Dr. Carson… but we are not sure if we will keep it. Ben and I are still keeping that option open. There is a feeling I believe one should get with a doctor that you plan on using. I have this feeling with my kid’s pediatrician. I love her; I can never say enough good things about her. And if it wasn’t for her continually checking on Kaylie about her headaches… we wouldn’t be where we are today in all this. My kids like her. And that feeling makes a HUGE difference in the outcome of events. You know… are they going to be around when you need them, are you going to be able to get in contact with them personally… or like how I currently am with our neurologist… I have only spoke with her once… every thing is through the nurse. And I get it, that’s how everyday things are handled… but it shouldn’t be with this. This is serious. This is not the flu, a virus, or any other common illness. Somebody is going to open my child’s head up and do surgery on her brain and skull. And I want that person to be available to me. We have very good feelings about Dr. Rekate. He was so kind, he told us about him and why he moved to New York, and showed us pictures of his grandchildren. He had a real connection with Kaylie… he moved from AZ, to be closer to his 5 year old, blond haired granddaughter, in which he said he couldn’t believe how much Kaylie reminded him of her. Besides looks, her sweet personality, and how she is shy. He reminded me of my father, so compassionate, and caring. And this is the type of person I want to handle my daughter’s 8-hour brain surgery.
Ben and I still have a lot to talk about… this isn’t a decision made on a whim.

Sunday, June 3, 2012

Flying High

On our way to NY... To meet Dr Rekate at TCI... We are so excited!! Our first flight was a little bumpy, and while descending Kay's head and ears started to hurt... Then she vomited on herself. Hopefully the next flight while be easier!
While on the first we met an awesome family! The moms daughter Katie was involved in an accident, that put her in a coma, and she had to have brain surgery... With lots of therapy, she is doing well and looks great!!! She was treated at John Hopkins by one of their pediatric neurosurgeons.... And told us many good things about them. Her story was absolutely amazing, and we are so blessed to have met them!!!

Friday, June 1, 2012

The results are in...

The neurologist is out this week, so I went to the hospital to pick up a copy of the radiology report. Here it is (sorry its not a great pic!):

So... No syrinx or tether cord!!! There is a lack in her CSF flow... which is being caused by the herniation. We see Dr Rekate, from TCI soon.... so we will let the experts tell us their opinion.