Sorry it's been a whole since I updated here... Things have been so busy!
Surgery went well, they finished quicker than expected, they removed the pieces of bone from the back of her head that should have been removed the first time .. Her head was positioned properly and then placed into her spinal column and screwed into place with purple screws :).
anyone can email me at anytime ! Sarah and our whole family are so grateful for all the wonderful messages that are left here for her!!
We are at North Shore Community Hospital, 300 Community Drive, Manhasset, NY 11030. She is in room 303A in the Pediatric ICU ...
She loves purple, jewelry (bracelets, necklaces etc) coloring, makeup, nail polishes, shoes! She is dying for us to buy her these blue high heels she saw at Burlington coat factory! LOL She is a size 2 kids shoe.. She's a fashion diva as well.. Size 10 clothes .. And of course cards with notes of love and encouragement :). After we check out we will be at the Ronald McDonald house of Long Island, room 306. Again we thank you for every prayer and love that we have been surrounded with!
She is sleeping now.. Rough getting her out of bed, her heart rate skyrocketed , she screamed and cried she can't she can't .. She wheezed and got dizzy an said she couldn't feel her arms or legs (nurses said normal) but all of this was stressful on her and us! Afterward though, after they made her sit for a while, once she got back into bed she was actually more perky and talked to her sisters in Florida so that was good and hoping when they get her out of her bed later it will be easier ...
I have truthfully putting off this update as it seems like writing it down makes it all the more real. I have made myself try to get through the holidays without the anxiety and stress and worry that tries to creep up on me if I allow it to as Sarah's surgery approaches.
Her surgery is now just a mere 15 days away, reality is here, I can't hide from it, and though I try not to, I am beginning to worry. She is just 8 years old, she has already had to endure a 5 hour surgery that failed, now she has to endure an even longer one and have pins and screws and who knows what else put into her to hold her little head on her spinal column"¦ Just saying that out loud (or writing it down) makes me cringe with the thought. I envision the first time she woke up from her last surgery and she was so swollen and scared and she cried so hard, and the pain was so bad, and she was so sick to her stomach as she came out of anesthesia, it breaks my heart to think she will go through this again, and that it may be worse since they have to manipulate her head and spinal cord and brain stem. It seems unreal that saying these words I am in fact talking about our own precious little girl!
I just ask for your continued prayers for Sarah, for our family, for our safe travel as we leave for NY on the 15th"¦
In addition, pray for Timothy, Sarah's brother, as well. I am worried that he may have Chiari too as the last time we were in NY he vomited for a few days for no apparent reason, and he has started to complain of headaches recently. I am starting a diary for him of headaches and trying to see if he only tells me he has one if Sarah does (like maybe he says it to try to get attention). The vomiting is my huge concern as that is what Sarah used to do when she was stressed, and Timmy did that when we were gone and he has started to gag and sometimes get sick in the mornings, and he vomits in his sleep on occasion"¦ all symptoms of Chiari and article after article have come out that Chiari is in fact hereditary. I took him to the doctor of course (just like I did countless times for Sarah) and even with Sarah's history, the doctors did not want to test him yet, which frustrates me, but I will get through Sarah's surgery and if Timmy continues to present symptoms I will begin Timothy's Fight as well.
We will be having a breakfast fundraiser at Applebee's in Henderson, NV on Stephanie and Sunset on January 13th at 8 am to 10 am. Applebee's cooks the food and our family and friends serve everyone who attends. The tickets are $10 each for a pancake breakfast and we get $5 of every ticket sold (If you hadn't heard, my insurance totally denied Sarah going to NY so I had to drop her off of my insurance, and even though Sam's pays a portion 60/40, for the doctor and 90/10 for the hospital, the doctor is not contracted so anything above "reasonable and customary" that he charges, we are responsible for and there is no "cap" on that amount) If you can come to breakfast we would love to see everyone! Tickets can be sold in advance, just contact me! That way Applebee's knows how much food to prepare, but you can come on the day of the event as well and eat, so don't let it stop you from coming if you didn't buy a ticket in advance. ïŠ
We would love to fill Applebee's and send Sarah off to New York surrounded by people who love her, pray for her and support her!
God Bless and hope you all have a great New Year!
Sorry I have not posted in a while... Sarah's surgery has in fact been scheduled for January 17th... we will leave Jan 15th, post op 16th, surgery 17th, ICU/Ped ward for 5 to 7 days depending on how she feels, then another 4 to 5 days in NY before doctor will release us to come home. We continue in prayer that all will go well for our little girl and that surgery will be successful and this will be her final surgery, that it will give her the relief she needs.
our prayers and thoughts go out to all the families in CT. Our hearts are heavy and we are on our knees praying for comfort for all those involved, who have lost loved ones, children, parents, and the first responders who are on scene. God Bless them all and please we ask for you to pray for them all as well.
As I am sure you have heard, Sarah does in fact have to have surgery again... We have planned it for January (not sure exact dates yet) Both the neurosurgeon and a spinal specialist will be in the OR with her. Neurosurgeon will fix her decompression and do it properly then spine surgeon will come in and do her cervical fusion. She has basilar invagination as well as Chiari and those two have also caused her to have fibromyalgia. This is the cause of all her pain, vomiting, gag reflux etc.
The way they explained it her brain has a bone (the odotnoid I think) that is pushing on her brain stem and due to the first surgery and the c-1 laminectomy where they shaved down the c-1, this has caused even more instability and that is why her symptoms are worse now. She is a "classic" case of basilar and the symptoms returning 100 times worse after the first surgery. The doctors have worked together for a few years now, and understand and have seen this many times and are very confident in being able to get her back to being a "normal" kid again. She will be in ICU at least 4 to 5 days and then another 4-5 days we will have to stay in NY before being released to come back to NV. She will have to wear a neck collar for a while and miss about 5 weeks of school..
Follow up via Skype at 3 months (she will be able to get an MRI here and we will send it there and speak to him over the internet) Then, in his words, at a year, he will check her again and give her a hug as he is going to make her all better! :-)
She will have several pins, screws, etc put in neck and skull to literally put her neck back on her spinal column properly, and that will limit neck mobility up to about 30% but also said children are so resilient that they usually are able to gain almost full mobility back.
I am scared to death for yet another surgery, yet another doctor who says all will be well, as we have heard that before. But we have fought long and hard to get her to these doctors who understand every aspect of Sarah's diagnosis and we are remaining confident and in prayer that these doctors are who she is meant to see and who will be able to get her back to a child again!
Insurance, well that is another issue... You all know I have filed appeal after appeal and grieved it, and my insurance continued to deny. I wrote letters to the senate and all they did was direct me to the the Consumer Health Advocate and they in turn told me that these good Ol' HMO's write things so good in their in their contracts and when it says no out of network benefits, they will be be able to legally deny it all.
We contacted Sam's insurance who is a PPO and I was finally able to speak to a case worker. My worry is that I am court ordered (as is her Biological father, but he never has) to carry insurance on the kids and I didn't know what would happen if I dropped Sarah off of my plan leaving just Sam's plan covering her. I worried that the court order would allow Sam's to tell me no they wouldn't carry her as I am supposed to be the one doing so per the courts. So, I dropped her off my insurance, she is no longer covered under my plan at all.... This left it so that Sam's is her only insurance, the good news is, according to the case worker I spoke to, that they WILL cover her!! The bad news is that it is at a 60/40 rate for any doctor not in network, our doctors in NY are not contracted so it will be 60/40.. the hospital and all that are in network so they will be covered at 90/10. There is also another team that goes into the operating room to monitor brain waves etc and their fee is about 10K ... we are probably looking at approx $15,000 out of pocket plus all the travel costs... but thank God she is covered by Sam's insurance which is better than no insurance at all!! We will have a bulk covered from the fundraisers thanks to everyone!! NY is expensive holy cow! And we will have to have open ended flights for the way back as we don't know how long her recovery will be for sure.. Thank heavens we can stay at the Ronald McDonald house so housing is minimal for us, $25 per day and we can grocery shop and cook there.. My mom will come watch Timmy for us so he won't miss school..
Thank you all who continue to support us and love Sarah and our family and for those who continue to pray for her. I remain in prayer constantly that this is it, this is her final surgery and she will get the relief from her symptoms and she will lead the life she is meant to, as pain free as possible!
Please watch this video, its about a girls fight (and her mom's fight to find a doctor) for Chiari, and where did they end up? The Chiari Institute in New York!
We are off to NY on Wednesday... The hearing decision was a "no" they have upheld their answer and will not approve the consult for Sarah in NY. We had always planned to pay for this consult out of pocket and are able to do so thanks to all the amazing support we have gotten from everyone! I will try to update while we are there, but if I am not able, then I will do so as soon as we get back. God Bless.
Feel like I just spoke to myself on the phone .. I had to present my case and basically got zero responses.... Then she said anybody have question? Everyone said no, and I was told answer in 5 business days.... Not really sure of anything... What I do know is my poor daughter is now vomiting because she is having a bad night and every day this is delayed she suffers more :(
Well... The Chiari Institute is still closed as of today, Oct 31st... I will call them first thing in the morning to see if we still have an appointment this Monday, but right now, considering La Guardia airport is still closed and under water, I am thinking probably not.... I will keep everyone updated!
In the meantime, the grievance hearing with the insurance company is tomorrow at 5:30 pm... If you think about it, please pray for me then as I have to try to keep emotion out of this and point out just the facts so that I can convince/show them that this is the best possible place for Sarah to go... It is a phone hearing, which I don't know if that is a good or a bad thing... I really don't know what to expect.. I will keep ya posted on that as well!
Sarah had a great day yesterday.. We went to the local trick or treating/drive in movie and all the kids had fun.. She ran around like a "normal" kid and it was so nice to see it! The the Chiari Cloud settled in and reminded us all how not normal she is.. She got home, was over tired, had a headache, nausea and vomiting... She fell into a restless sleep and woke up pretty much the same. We didn't even make it through church without my having to take her to the restroom for her to get sick. She is now in PJ's to spend her day doing nothing in hopes she can make it through school this week. We leave for New York next Saturday.. Hoping and praying this consult will give us all the answers we need and we will be able to plan accordingly to give Sarah the best possible outcome.
OK.. Here is the latest.. Health Plan of NV called this morning and left a message.. They are asking me if I am "willing" to go to Children's Hospital of LA.. their reason behind this is that they have surgeons who are "willing" to do a basilar invagination on Sarah..
Here are my thoughts, 1. That hospital does NOT take my insurance either, they take United Health Care, just like UCLA does and just like The Chiari Institute, if they will send me there why not to TCI?? Plus this hospital does not take our secondary insurance, but TCI does..
2. I googled that hospital, and nothing, and I mean NOTHING comes up about them doing basilar invagination surgery.. so they have a doctor "willing" but obviously not qualified or it would be listed! Plus NONE of their doctors come up as Chiari Specialist, they "do" Chiari surgeries but they are not specialized in the field.. Are they trying to experiment on my daughter?
3. HPN has recieved all the info I sent them and it appears that NOW they see the basilar invagination (I sent Sarah's MRI's) so I am thinking that is a good thing.. they see that she has an underlying problem!
I am hoping, praying, that HPN is seeing and is willing to see all of this and they will let pay for us to go to TCI realizing that Sarah needs a specialist, not just some doctor who is "willing" this diagnosis for her needs the best possible care and we will continue to fight to get it for her!
Please watch this awareness video..
Whoo hoo! Step in the right direction (I pray) the Governors consumer health advocate office has opened a case for Sarah.. They will help us appeal decisions made by HPN so we can fight and WIN to get the proper medical care for her!
Whoops.. meant to say "misdiagnosed" for so many years in my last post! Sorry!
We are so grateful to everyone who is supporting us and helping us in the fight to get Sarah to the doctors she needs to see.
The UCLA visit did not go well... He has no answers as to why Sarah remains sick... He told me he does brains, and doesn't understand her severe stomach pains, he is NOT a specialist in Chiari and does not understand all the underlying problems, which is why we are fighting so very hard to get her to the Institute in New York! Chiari is still listed on the Rare Disease list, and if you ask a Chiari specialist, they will tell you that 50 patients can be in front of you and they will each have different symptoms, this is the main reason people are diagnosed for so many years! The doctor in New York has found also that basilar invagination in pediatric patients may be a HUGE factor in Chiari and the reason why surgeries fail the first time if that is not discovered, this is another reason we feel we HAVE to see him in New York so he can check for sure if that is what is wrong with Sarah. He has seen her MRI's and is already pretty certain, but we need to get a plan of action. Surgery is going to happen, but we need to find out when.. In the meantime, Sarah remains ill almost every day. She had one good day Wednesday, but yesterday at school had to leave class for medicine and was up several hours last night with a headache and stomach issues... I hate that she suffers so much and we can't fix her right away, its not fair that the insurance company is making her suffer every day, she is 8 years old and can't have a normal day without falling ill. Please continue to help us in our fight to get her where she needs to go and get the proper help!
As we leave for UCLA tomorrow and we continue in our fight to get the best medical care for Sarah, I hold to these Verses and am so grateful for Gods love. He will provide, He will hold us up when we are weak, He will be our rock, He will get our baby girl through this!
And I am convinced that nothing can ever separate us from God's love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow"”not even the powers of hell can separate us from God's love. No power in the sky above or in the earth below"”indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord. (Romans 8:38, 39 NLT)
This is Sarah's After MRI, taken Sept 2012 (in this you can see the basilar invagination, which is what has to be fixed or she will never have relief, UCLA missed this in her first surgery, even though you can clearly see it....Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord.
This is Sarah's MRI taken BEFORE surgery, May 2012
We were honored today to be presented a check by the Red Iron Brotherhood and other clubs, from all the fundraising they have done for Sarah. This will help in our first trip to New York to get Sarah's consultation. We still have a long way to go to pay for surgery. But one step in the right direction to get her in person in front of the doctor at the Chiari Institute in New York. God Bless the motorcycle clubs and everyone who participated in the fundraisers to help us help our little girl!
We are thankful for friends and family and cannot say thank you enough to those who donate, who pray, and who support, we will update often so you know of Sarah's progress on her Journey...
Here is a picture of Sarah and her family.. she also has an older brother who couldn't be in the picture.
On June 20, 2012, we found out that Sarah, a normal, "healthy" 8 year old has Chiari Type 1 Brain Malformation with the size of her herniation being approximately 18-20 mm.
Chiari Malformation is defined as a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.
Sarah has had what we thought were childhood migraines most of her life, and would vomit if over tired.. she was misdiagnosed for years but finally in May 2012, we were sent to a neurologist who ordered her first MRI and the Chiari was discovered. She had brain decompression surgery July 20, 2012 at UCLA.
There is NO "cure" for Chiari, Sarah will live with this for the rest of her life, and may in fact need further surgeries. We were just given the results of her 2 month post op MRI's and her post MRI does not look much different from her Pre op one.
We have decided to seek the help of the Chiari Institute in New York, where they specialize in Chiari and all related disorders. Upon reviewing her MRI's the Chiari Institute informed us that Sarah MUST have another surgery. It appears from the MRI's that she may have Basilar Invagination (Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord.) as well as Chiari, and the herniation from her Chiari HAS NOT improved. The reason is that at UCLA instead of doing a regular Posterior Fossa Decompression, which is defined as removing the bones in the skull to relieve pressure, they actually placed the bone BACK IN after performing the duraplasty and the C-1 laminectomy. NONE of the pressure in Sarah's brain has been relieved and her symptoms are now worse than before surgery. She used to have symptoms every 2 months or so, now it is every day.
Our Insurance has DENIED our request to go to the Chiari Institute in New York and see the specialist there that can help Sarah in every aspect of her diagnosis and provide her a quality of life she deserves.
We appealed the denial to go to the consult and they denied that. They have informed me I should be "happy" they allowed me to go to UCLA and have to stay with them.
We only want the best for Sarah so that she can lead as normal life as possible, she wants to go to college and she wants to be a brain surgeon to help others like her. If this continues, she won't even be able to go to school let alone hold a job, she can't make it through a day of third grade without a headache that knocks her down for several hours.
We ask from the bottom of our hearts, help us get our baby girl to New York to the specialist that can help her and help relieve her of the symtoms, they can't cure her, there is no cure, but they can relieve the symptoms and we can hope and pray she can have the life she is meant to have.