The MRI is done!

Checking In!

We checked Kaylie in at 10:45am, about 11:15, they took her back, we got to go with her. At 12pm, they started the gas, we got to be with her, until she fell asleep. At 2:15 we were called back, she was done... but still sleeping. She was really cranky, and mad... they said that was typical of anesthesia. I did get 3 copies of the MRI, so that I can give to the neurosurgeons. They had told me before that they could give me an unofficial radiology report, but then after she was done, they said they couldn't. They also said it may take 7 to 10 days for the report to be done. I was told that last time too...but found out results the following Tuesday... from a Friday MRI. So, hopefully we will hear something soon from her neurologist.... but you know how it goes... Another Wait Game!! Thanks to everyone sending good thoughts her way today! We really appreciate it!!

Kaylie trying to wake up!

MRIs tomorrow!

Tomorrow is Kaylie's full spinal and Cine MRIs. We are so ready to have these done, it feels like we have been waiting for this day, forever! She will be sedated, for a few hours, so please keep her in your thoughts and prayers. I will be giving updates on her Face Book page.
Thanks again... for all the support!

Kaylie's TCI packet came today! You know, the normal doctor office registration type forms. Was introduced to a GREAT website... Chiari Connections International

This is such a great website, and it even has an area where some doctors answer questions.

On a separate note... only 2 more days till Kay's MRIs!!!! I feel like I have been waiting for May 29th... forever!!
I hope everyone is having a great weekend!!

Milestones

Yesterday Kaylie had a photo shoot with two amazing photographers, to help as a fundraiser for her. Angela Eichor with New Hope Studios www.newhopestudios.com and Jayceette Boger with JBoger Photography www.jbogerphotography.com could not have done it any better! They were so kind, patient, and fun with her. The photo shoot was four and a half hours, and she did so well! As I stood back and watched them with her, I started to think back of all the milestones in Kaylie’s life. When she was born, her 1^st birthday, and her first day of school. I watched as she posed, smiled, jumped… and just had a good time, and thought to myself she has become such a big girl. I thought to myself what has all gone on in this past month and a half, and how hard this summer will be for her.

But today is a happy day! Today my baby girl reaches another milestone of life. She graduated from kindergarten today. I am so proud of her achievements this year, and how she has handled herself during all the tough times too. Kaylie you are one in a million… and your mom and dad love you so much!!!

Snail Mail...

We have been asked, and have received lots of emails how people can send cards & notes to Kaylie. We finally got a PO Box today!!!

Kaylie Barnes

PO Box 7881

Moore, Ok. 73153

Doctors

So Kaylie has been diagnosed with Chiari for one month and twenty days. Every day I either look at something new about Chiari, or reread something about it. A lot of research, and listening to people's opinions can go on in a month and twenty days. When your child gets diagnosed with a rare condition, you read all the well known sites... like the Mayo Clinic, Mayfield Clinic, ASAP, Conquer Chiari, and other well know hospital/university sites. They all say seek a specialist with experience for this condition. Then there are all the support groups. Sometimes I think they are great, because I don't feel alone in, that my child is experiencing a certain symptom... or I get feed back on how others have handled issues, or school activities. But sometimes they can be extremely overwhelming. You have all these parents from all over the United States, even from other countries, just trying to figure out what neurosurgeon they should take their child to. There are a lot of opinions given out on doctors. Almost to the point it makes it hard to read... because you then start questioning your choices. I listen, read it all, and take it in... and look them all up. I can almost tell you by name who is in what state that people talk most about. But all that doesn't mean anything. You, as the parent are the only one that makes this choice. I have said this on my support page of this blog... to do your own research, this is just mine. How one doctor may be right for one person, doesn't mean they are right for another. In general I think they are all good, some yes, better than others... but I do not think there is "one" expert... or the "best". I know I have used that word, "best" many times... in, "I want to find the best doctor for Kaylie".... every parent wants that. And the only time I think you can use that word in this situation... is when you know that doctor is best for you. Your heart tells you. Your gut tells you. All your hard work finding them, tells you. I think most parents narrow it down to a top two or three doctors, in our case...two. We will see both of them, and then go with what are heart tells us. And that's when it will be the BEST for Kaylie.
If I have any parents out there reading this blog from my groups... all I can say is I would take with a grain of salt. Read the info, but find out for yourself. And to not let anyone tell you, who you should or should not be seeing as your child's doctor. You know your child, and what is right for them...and that's all that matters.

It's a sunny day...

I don't think I can post this enough... how thankful we are for all the support we receive. The letters, emails, post cards, prayers and kind words... are so amazing. We never imagined this amount of support could happen for Kaylie. I want everyone to know that I am trying to keep up with all the emails... and I will email everyone back!!
Kaylie is having a great day! And an update on Holly... She is doing very well, she is actually being released to the Ronald McDonald house for a few days before they start traveling home. She is a strong little girl!! I found this amazing photo on Pinterest, and wanted to share it with everyone.

Best Day Ever!!

Last Thur., Kaylie had an accident at school. That drew the line with me and "Topamax". Monday came around... she woke up at 6am, crying about a headache, and wanting to take a warm bath... so she did. I thought she was doing better after the bath, so she got ready to go to school and went. Ben called me has he is driving to school saying Kaylie was crying again... because her head hurt... so I told him to bring her home.. asked her if she wanted medicine, and to try to go to school. She said yes, so I gave her Naproxen... and sent her on her way. Later I had found out she cried during her Rise & Shine (by the way she was student of the month) at school... but I think the medicine was still trying to kick in... because then her teacher said she was doing fine. Also Monday morning I was on the phone all day... I had called the makers of Topamax, and the generic company... because she is on the generic for Topamax... asking them some questions. I found out that the generic one does cause incontinence. So I think all her accidents and bed wetting is from that! I called her neurologist, telling them I want her taken off Topamax and they had finally called me back around 4pm... The nurse said that the doctor said I had said (I know.. 3rd party crap!) Kay was already having accidents... I told her Yes, here and there... maybe once every month or two months... But NOT every night, and during the day!!! So then she tells me she would have to get back with me. And didn't. I also tried calling the neurosurgeons up north to get in sooner... never heard from them yesterday either. But Today... was the Best Day Ever!!! First thing this morning... her neurologist's nurse called, took her off Topamax!!! They want to see us on the 22nd, to talk about other medications. hmmm. Then we got into TCI sooner!!! We will be going in June. I am so happy!! Now just waiting for her MRIs to be done! I keep calling them too... to see if we can move it up any, still stuck on the 29th. Her full spinal & Cine MRI will take 4 to 5 hours ... that the time she will be sedated, so they don't have a time slot for that amount of time any earlier. But, OU Children's Radiology Department is so nice!! They tell me to keep calling back... because you never know!!
Today was kind of a rough morning too... she didn't want to go to school, her head and ear hurt all day... she is a trooper!

A Busy Day...

What a day!!! Where to begin… First a update on Miss Holly!!! These are some posts from Holly’s mom, Renee:

~   Holly has had a goodnight! All stats have remained good and she has been alert and telling us what she wants/needs. Her nurse last night was five stars all the way. Defiantly couldn’t ask for any better.

~I have to say that we have been nothing but impressed with this entire experience. I have sooooo many improvement ideas for our local children's hospital. This is NOT a children's hospital but they are doing an outstanding job handling peds and making sure the parents understand and are involved with the whole process. I was scared about being so far away from our friends and support people but the staff here really have made us feel so at peace. God is so good and has made sure every need is being met. Thank you to all for your continued prayers and support. Each of you are special to us!

~Holly is doing very well. They have removed the artery line and the cath. Right now she only has one iv line, pulse ox, drain tube and some sticky monitors on her chest. It is great to see tubes and wires removed. She yells the whole time but afterward is glad to have a free arm and hand. Holly is still going in and out of sleep but is very aware and vocal which is GREAT!!

~OK!!! So Dr. Rekate just came in and spoke with me about her procedure!!! I miss understood some of the things he said yesterday and now I will correct myself. He said that before they begin they do electro observation while changing the angle of the head and watching the monitors to see what changes/improvements they see. They removed about an inch x inch square of her skull. That still did not improve the flow of spinal fluid or the electro signals. So they had to open up the dura and do a patch. That opened up the flow and the tech saw GREAT improvement in the electro signals. Dr. Rekate said that was a real hooprah moment in the OR. Then he assisted Dr. Insigna in positioning her head in the vise to get the best angle to do the fusion. He was excited to hear her speech improvement that we heard even while in the recovery room Dr. Rekate said he was looking forward to hearing how much she continues to improve! From what I understand it sounds like Holly had a BONE poking her BRAIN!!! That is the part of the skull he removed! Praising God for his miracles and blessings

So it sounds like she is recovering well!!! I cant wait for us to meet Dr Rekate! Keep praying for her!!!

So Kay had an eye appointment today. Her vision has just changed a smidge; he said not enough to even change her script. But, he asked if she still had her symptoms when she did wear her reading glasses, i.e.: headaches, I said yes… he thinks possibly her vision change this past November is due to her Chiari. As for all her eye pain… its all pressure related from her brain on those nerves, so that’s why she has the eye pain. But, he said that the actual organ (eye itself) is very healthy!! We will see him again… sometime the end of Sept or Oct., depending how the summer goes.

~ Kaylie at the eye doctor ~

 After that we wanted to take her by the police department, to thank all her dad’s co-workers for all the support, donations, and prayers. We walked around to all the police admin offices, and the detectives. Handed out little “Thank You” cookies and a chiari bracelet. We also went by City Hall to see our friends and supporters there, then to the Fire Department & Admin building at Station 1. They let Kay see the fire trucks and gave her VIP treatment!! Tonight we are going to go back by the police department to give cookies to her daddy’s shift and midnight shift officers. We can’t thank everyone enough!! Its not just about the monetary donations… but the fact that our community pulls together in such support and the prayers that are said for her means so much to us! We can never thank yall enough!!!

Kay had a really good day… the only thing that she continued to complain about is her ear pain. We ran by her school for her end of the year class party… they made ice cream sundaes… YUM! Then she went over to her Best Friend’s house for a play date!! Brin is such a good friend to her!

Kaylie & Brinlee
Best Friends Forever!

Update on Holly!

Holly just got out of surgery... surgery went well, she is in ICU, and resting!!! Still keep praying for a smooth recovery, because the next few days are going to be hard... But, she is a very strong little girl!!!

For Holly....

Today I am asking for all prayers to be sent to this little girl!!! Her name is Holly, and she is having her decompression surgery for Chiari as I speak. It started at 7:30 am, and is a very long surgery. Her surgeon is Dr. Rekate, from TCI. Her mother Renee has become a good friend and support person for me. PLEASE, everyone who has graciously bought one of Kaylie’s Chiari bracelets …. Please wear them today in honor of Holly!!! This family means the world to me. Renee, Holly & Family… I will be thinking of you all day!! XOXO

Kaylie's Chiari Awareness bracelets came in today!! There were 200, and in the middle of all the bracelets was one youth size rainbow bracelet that said: Galations 5:22-23

From bad to good...

I have wanted to post an update the past couple days … but every time I sit down to start, something comes up… and I just compile a list to add to my post!

This past week has been the craziest for us all!! I’ve been finishing finals and ending this semester of school for me… all while worried every minute about Kaylie. Last week was such a hard week for her. Headaches were daily, so bad that on Friday the school called saying she was crying that her head hurt, we ended up picking her up early.  She had several nighttime accidents… to the point I ended up buying “GoodNights Underpants” for her. I thought I was going to have such a bad time talking her into wearing them… but she was so willing! I think because she is just tired waking up wet, and a little confused to why her body is doing that… when it never use to. Also she dealt with some “bully” issues again. I am not going to go into details about that on this blog… due to the people that read this blog. BUT, I can and will say… I am so glad my kids don’t act like that to other children…. I would be ashamed of them! But…. I guess its bad parenting if you cant teach your child to be kind to others! I am so HAPPY, for Kaylie’s teacher. She is absolutely amazing!!! I hope she reads this, and knows how special she is to us. And how we are so proud of having a teacher to put a stop and take care of issues like that!

Over the weekend there were two stories that brought such fear to me. They were from my Facebook chiari groups I belong to. One story is about a mom that has chiari, and is fighting for her life. She has had complications due to the decompression surgery. The last time I checked the posts, she was still on ventilators. The second story… really scares me. It is about a little boy named Bryce, 6 yrs old, who past away about two weeks ago. I have talked to his dad through messages, about his son. Their family is one of the strongest families I have ever met (online wise)… they are trying so hard to get the word out about Chiari, and how serious this illness is. I had asked if I could share his story on my blog… and so that I get the details right… I’m just going to copy and paste his post from my group, then some of his conversation with me through messaging.

Bryce’s father Ian… his post:

I talked to the King County ME today and he hasn't finished the full report, but he said that Bryce's brain stem/medulla was compressed causing a contusion due to a hyper flexion/hyperextension of his neck. He said his Chiari caused too much crowding for his brain & spinal cord. So he is ruling that the Chiari was a significant factor in his death. So he has now confirmed what we had all figured out from the MRI...Chiari was responsible for his death. What should have been nothing to a normal child was a death sentence for Bryce. So if you have a neurosurgeon tell you Chiari doesn't really cause any problems I can send him the ME's report. I wish we had known about this early, hopefully they can figure out a way to screen for this in the future so that it won't be missed in the future....we miss you little buddy.

After a lot of posts from many thoughtful parents, and even I asking about Bryce, I decided to message him, because earlier he had said he is willing to answer all questions. I told him I wanted to know Bryce’s story.

Ian’s reply back was:

Sorry didn't see your message, it put it into the other box. I don't mind answering questions about things. If it helps we are willing to do anything. We live in Bozeman, MT.

Bryce was 6 years old and he was perfectly healthy child...or so we thought. He went outside to play on Sunday morning and I was woken up by my middle son yelling at me that Bryce wasn't breathing and that Mom needed my help. I ended up doing CPR on him and he was taken to the local ER in Bozeman. He had fallen out of a toy wagon and stopped breathing and had no pulse. They were unsure what had happened, as he showed no signs of a head injury.

It was quickly determined that he needed to be sent to pediatric ICU, and he was transferred to Billings. Once there they had no idea what had happened to him either. They were at a loss and later that night he started to have seizures. So the neurologists decided to do an MRI. Once they saw the MRI they made the diagnosis of a Chiari malformation. They decided he then needed to be shipped to Seattle. Once there he fought for his life for 5 days before losing his battle.

We donated his organs and he hopefully the recipients have now had a second chance at life thanks to his gift. He also has alerted us to possible issues with the other children. They all seem to have Chiari based off the MRIs, but now we just need to confirm that with a neurosurgeon. They are not nearly as bad as Bryce's. Chiari. The neurosurgeon in Spokane said that it was the worst one he had seen. He kept telling us he would have done surgery on him if we had brought him in. We kept telling him why would we have brought him in...he had no symptoms that would lead anybody to a diagnosis of Chiari. He had numbness once and only one really bad headache. Those symptoms were not bad enough to even really warrant a trip to the doc. We did mention them to his pedtrician, but they did not think it was a problem and neither did we.

After what happened I pushed my doctor to order MRIs for all of them. She wasn't going to order them for all of them seeing as she didn't see any warning signs in them. I kind of guilted her into them. A few of them she had agreed to and the rest I said I wouldn't sleep well until they were cleared or not as Bryce never showed any signs till he died. It might give you some peace of mind, but I know they are not cheap. We aren't worrying about that right now, we hit the deductible already so we if we are going to do it this is the year. What I thought was the second worst MRI is actually the worst...go figure. Let me know if I can be any help in the future.

Ian

Every time I read this… I tear up. Of course for the fear I have for Kaylie, and my other two children…. But because I am so amazed at how strong a person can be, and how strong one can share their story, to help others. From reading through the rest of the posts… Ian has sent an email to Duke University. Duke is currently doing a study on genetics of chiari.

Chiari seems to be very hereditary. Most people I have talked to, that have more than one child… have several children with chiari, or/and one of the parents are. Of course I think of Abby & Mason. After we get Kaylie settled somewhat in the medical care she needs now, we plan to have MRIs done on the other two. I will probably talk to their pediatrician about all that soon… just to let her know how we feel.

On a more uplifting note, Tulsa, Oklahoma has a Chiari support chapter!!! They are still small and getting started… but there is one… and that’s what counts!!! They are the ones that are helping Conquer Chiari put on the walk in Tulsa that I had posted about. One of the head ladies of the chapter contacted me by email today, giving me info on Oklahoma FB Chiari groups, and some of the neurosurgeons they have used. It’s nice to know that we are not alone in this great state of ours!

Other than that… which was a lot, that is about it, for now. I found this awesome photo the other day…. It represents how strong I am going to be for Kaylie, and how strong she is! Love to you all...for all the support!

OH!!! How could I forget... today was a "GOOD" day for Kay... she woke up with no accidents, and not once did she complain about anything hurting!! She is such a trooper!

Counting the days...

I don't have a lot to post right now... we are just waiting for the next MRI. I did find out yesterday that her neurologist did order the CINE MRI along with the full spinal MRI. The CINE measures the spinal fluid flow. Also, I was able to get her MRI pushed up to May 29th... only a few days earlier...but I will take it!
Kaylie has had a bad couple of days. Yesterday bad headaches and ear pain. She ended up sleeping with me, and waking up in the middle of the night with a headache. Today, more headaches, ear pain, back of the head/neck pain and she is defiantly having the ringing in her ears. She stopped in the middle of dinner tonight, telling me she hears, "nnnnnnnn"and described it as a long line. I gave her naproxen tonight, heating pad... then a warm bath. Then she went to bed. When I can just get her to go to sleep... I think they go away, but I'm not sure on that, because she does wake up with them. Seems like we will have a row of bad days... then some good days.... so hopefully the good ones are almost here!

On a different note... Our good friends Heather & Travis had awareness bracelets made. They are purple, and say, "Hanging with Kaylie". They are fundraising with them. Ben & I have been so overwhelmed with all the support... from cheer post cards, donations, to prayers. It means so much to us! And we are just amazed at the community we live in.... we are truly blessed to live where we do. I know we say this all the time... but we can't "Thank" everyone enough! I also added a Facebook button to the blog... so if you would like to follow her on there too!