Oh what a process this all is between insurance, referrals, opinions. I feel like i live on the phone. Not only are we dealing with neurosurgeons, MRI's Chiari, syringomyelia, platybasia. Emma has seen an ENT (she has seen a few ENT's in her lifetime.) Her ear tubes have been in for 6 years, they usually fall out after 2, hers didn't, so after her "big surgery" Posterior Fossa Decompression. She will have another small surgery to remove her tubes. Since her tubes have been in so long they take some cartilage from the back of her ears and add it to the ear drum so a permanent hole doesn't remain in her ear drum. On top of that, she needs to see an endocrinologist. She has seen a few Endocrinologists in her lifetime to monitor her growth, (she fell off the charts at 10 months) so anyway to make a long story short now that she is showing signs that she might be deficient in her growth hormone. ie. a child growing less than 5 cm a year is considered deficient, she is only growing 3.5. Yet our insurance is denying us a visit with an endocrinologist so we can receive further tests. I have appealed, been denied, appealed, and been denied again and tomorrow I get to have a phone hearing with a judge. Wish me luck.

Emma has the sweetest friends

So you may or may not know that i am not a stuffed animal fan.

Emma on the other hand loves stuffed animals. She sleeps with one every night.

They are my nemesis i am always trying to get rid of them (don't judge we have a ton!) when we moved from AZ to CA I had them pick their favorites and we put them in a box and their not as fav went in another box that fell off the moving truck ; ) (I know i'm a horrible mother! ).

Well she was asking if she could go to build a bear one day and i said only if she had to have surgery. Well when we knew she had to have surgery it made it bitter sweet because she knew she got to go to build a bear before surgery!

So the other day she got a card from her good friends at school. They are part of a group called Indian Princesses. It's a daddy daughter thing. Emma really wanted to be a part of it but Nate had school on Mon. nights when they meet. : ( These girls pay dues each time they meet and then they take the money they save and divide it 3 ways. One part of it they use for an activity for themselves and then one part they use on service. They were going to help a family at Christmas, but when they heard Emma was going to have surgery they mentioned to the girls they could give it to Emma. So the parents decided they were going to let the girls decide. They decided to give to Emma and then take the part for themselves and give that to the family for Christmas. How sweet are those girls. Emma is so excited to use her gift card when we go! Thanks to her sweet friends.

Surgery

We scheduled surgery for February 17th with doctor Zouros here in California. Our doctor in AZ is going to take Emma's MRI and CT scan to a case study with other neurosurgeons on Jan 25th. Their is some controversy on which procedure to perform on Emma. We are going to continue to get other opinions until surgery time. Wish us luck!

Believe

So last month i was reading in my scriptures and read Luke 8:50 " Fear not: Believe only, and she shall be made whole." You can imagine why this scripture stood out to me so I read the whole story. Luke is talking about when Jarius a priest at a synagogue was informed his daughter had died. Jesus heard it, he answered him saying, Fear not:believe only, and she shall be made whole. In our young women lesson on Sunday Lisa used the same story, but from Mark 5:35. The story in Mark gives a better detailed story, but that scripture in Luke just struck a chord to close to home. I do believe that if we Fear not: Believe only, (and God willing) Emma will be made whole.

This is a picture Simon Dewey painted, it was in a book Grannybird gave me for Christmas.

Neurosurgeon

We got the CT scan Monday.

Emma had a busy week, A CT scan(Mon), audiologist apt(Thur), ENT apt(Fri), neurosurgery apt. (Fri)

the audiologist and ENT apt. have taken me a year to get scheduled, she needs surgery to have the tubes in her ears drums removed they usually fall out before 2 years and hers have been in for 5 years. We run a risk of having a permenant hole in her ear drum. That surgery will happen after we take care of the bigger brain problem!

We got our apt with the neurosurgeon moved from Feb. 11 to Friday Jan. 7th.

We have decided to do surgery before Emma's symptoms get worse.

Our neurosurgeon at loma linda has an opening on Jan 27th. Or we might wait till March 7th durning Nate's spring break.

Our doctor here suggest we proceed with decompression surgery. Which would involve removing a section of the back of her skull (a craniotomy), and removing part of her c-1 vertebra. Opening up the dura (membrane your brain and spine are in), and patching it. and also removing part of the cerebellar tonsil (brain tissue in the spinal cord). I know it's scary.

Our doctor in AZ suggest we do more to stabilize her Platybasia & Basilar invagination (The bones that are putting pressure on her brain stem.) One approach he suggested is to go in through her mouth remove the malformed bones and put a new bone in that is harvested from her rib or hip. Then you would flip her over and fuse the bones by putting some "hardware" screws or brackets to stabilize the spine, there would also be some form of decompression done on the back of the skull, i know even more scary!

We still need to discuss with Az Doc more after he has seen the CT Scan. Before we decide exactly what we are going to do. We might also be looking to get a third opinion but i fear he will just bring up more options and less decisions. I really like both our doctors and feel they are both qualified to do a good job their are just lots of different approached on how to handle things like this.

Life is Life

A while back Emma said to me she didn't want to have surgery. Who can blame her! So we were talking about how sometimes in life we have things we don't want to do but we have to. I talked about when i was in 2nd grade i had to have surgery. So as we were about done talking she said to me with a smile i guess "LIFE IS LIFE." I have repeated that so many times in my head since she said that. We ALL have challenges. Sometimes life is easier than at other times. We all have to do things we don't want to at times. LIFE IS LIFE. We all just have to deal and keep going.

Emma has her CT scan tomorrow. Then back to the neurosurgeon to schedule surgery.

So today we were unloading the kids bags from our trip to Vegas and Emma was putting her swimsuit away and was talking about how we never went swimming. Then she stops and looked at me and asked if the doctors said she couldn't swim because of her condition! I told her no just gymnastics, and the wild rides at disneyland were out.