Emma had another MRI and x-rays. I talked to Dr. Muhonen today and he is pleased with her progress. He wants to see x-rays in 6 months. She is doing good and happy. Hope you all have a Merry Christmas.

Just a quick update. Emma saw the neurosurgeon on Wed. Everything looks good. You can see new bone growth on the x-rays. She does Not have to wear the collar any more, but continues to take things easy while the fusion takes. She will get an MRI at the next apt. and we will see if it had any effect on the syrinx.

*Child Cervical Halo is GONE! *

*Yaa! THE HALO IS GONE! 3 months and 1 week is enough of that. It was scary for her when it came off. She actually wanted it back on! The unknown can be a little scary and She has not had to hold her head up for months and those muscles were weak. She now has a neck Collar. Doc says 4-6 weeks with that on. He is still really worried if the fusion will take. The back of her skull was so thin he is worried that the screws will not hold. Time will tell over the next few months. She will continue to get monthly x-rays. We had a fun trip back to Cali. Emma got to visit with her friends and go see some of her teachers from Litel.

*UPDATE*

Emma had X-rays and saw the neuro-surgeon today. He said everything looks really good. He can see new bone growth. He said she might get her halo off next month. Man i would be excited for that. He said her pin sights are the best he has ever seen. Which is good cause they kind of freak me out. So another month till her next apt. then well have another update!

Family therapy in an International Peace Park helps recovery!

Emma was doing so good with her halo we decided to head to Canada so she could have cousin therapy! Nate wasn't able to go:(. So Thanks to my mother-in-law who took responsibility for Levi in the day (Nate had him at night.) We were able to go for a week. She did really well and her energy level increased a ton just in the week we were there. She continues to have a great attitude with the whole situation, with only occasional outbursts of frustration with having this contraption on! (Who wouldn't have those!)

We go the second week in August for an X-ray to see how the fusion is taking, then we will meet with her neurosurgeon, and hopefully get a better idea how long this thing will be on. We are planning on staying in Cali till the halo comes off. Then we will move to AZ. So our life continues to be on a month to month bases.

Emma hiked up to Blackeston Falls. It is a short little hike, just 1.5 kilometer. They did lots of crafts. Flew kites. Made regatta boats to send down the river. Trips to the candy store. Her favorite part was just hangin with her cousins.

Doing Well

We saw the doctor today, and the halo tech. Everything is looking good. We will get an x-ray in 6 weeks to see how the fusion is taking that should help us narrow down how long this contraption will be on. She is doing amazingly well! Still a little run down on energy, but thats good so she can heal. This is picture my sister-in-law snapped of Emma's first trip out to eat since surgery.

Her Scar

Here is the scar on the back of her neck. The one on her hip where they got the bone from for her fusion is about the same sizes. It is still covered in sterry strips. Most of her scar will be up in her hairline. When her hair grows back.

Emma had a great day today. She has eaten more. She's happy. She is moving around on her own. I don't have to help her role or sit up. She had pain meds this morning, and went all day with only ice and 2 naps. Things are looking good. :) Big smiles here!

Home Sweet Home

WE ARE HOME!

She still isn't eating much (she's only eaten one of those kid apple sauces in almost a week!), but we are hoping being home will perk her interest. Her pain is mostly in her neck. Her hip hurts if she moves. Thats where they harvested the bone for the fusion. Sometimes her head hurts all over. Her tummy hurts (probably cause it's hungry!), she's scared to take her medicine afraid it might make her sick. The doctor looked at her MRI and was happy with what he saw. No fluid leaking, and he thinks her syrinx is looking smaller. Emma wants to get out of her. She wants to go to Vegas, Lake Powell, Arizona and Canada this summer! Thanks for all your love and prayers.

Family time!

These are before my Wonderful Mom took the kids to Vegas Sunday.

Levi is to young to be on the ICU floor so we had to sneak him in to see her. It was so worth it. Emma loved having him there.

All the kids playing Wii

Ok they have moved us out of the ICU. Emma is getting an MRI. Then she will come back to a new room. She walked down the hall with very little support. Her spirit is a little beat down and she is refusing to eat. If she will start eating we might be out of here tomorrow. Which would be great. Now we have a shared room. Not fun. Over the next few weeks we are praying that she doesn't develop a spinal fluid leak or we will be back her.

Nate and I are doing good. My mom has been a life saver and taken Meg and Levi back to Vegas. So if anyone can take them off her hands for a while it would be wonderful! Thanks for your love and support, and continued prayers.

Recovery

She mostly sleeps, Morphine will do that. She's gotten pretty ornery. She just ignores us if we ask a question she doesn't want to answer! The physical Therapist tried to get her to sit up and she was mad. Then Rex came in and she was so excited to see Rex and show him the Wii she sat up and played, She wanted to keep playing but she got to tired! She was so excited to see Meg too. Made her day. I'm hoping she has more energy for tomorrow.

Therapy

This was before surgery yesterday, i swear Therapy helped (both gifts, Wii & pet therapy). When Emma woke up she started to whine and whimper, that the pins in her head hurt, she didn't want to be there, she wanted to go home (not that i blame her) she opened a package from the Peterson family and that made her smile a bit, then the child life specialist came in and talked to her. Once she brought the Wii in she was all smiles and having fun, she was so excited to show it to Rex. I almost went and got him early from his last day of school. Those two have a special friendship, they are definitely kindred spirits. Then Lady came in, she loved to sit and pet her. Then she went in to surgery, at about noon. Surgery took about 3 1/2 hours Emma did well in surgery. The doctor was happy to see how much pressure was taken off her brainstem when they decompressed her Chiari. This is a good sign that the fluid syrinx in her spinal column will drain by it's self. He wasn't as happy with her skull, he had a hard time anchoring the screws. He described her skull bone like egg shells in some places. They had originally planned on anchoring it to her c-1 vertebra, but it was very thin, so they had to fuse her c-2 & c-3. So those are the high and lows of surgery. She had a good night and day today. Mostly out of it and sleeping, it should be about the same tomorrow. Our biggest risk right now is a spinal fluid leak. The best part is we snagged the Wii machine for the weekend!

Sporting HER new trend of summer

What a day! and its not over

Kerry's short version.... It's been a busy day with good moments sad moments, stressful moments, and boring moments, the worst(for me) was when we had to leave her to have the halo screwed into her head. Ya she is sporting the new trend of summer, and it's harder to get than feathers! The best was when the doctor told us he liked what he saw in her traction X-rays, so he is not going to do the trans-oral. That is great news. He is hoping to get us into surgery tomorrow sometime after 11:30a.m. They will do decompression and fuse her c-1 and c-2 vertebra to her skull. We should be out in about 5 days. There is still a chance if the syrinx in her spine doesn't go away that we would have to do the trans-oral in the future but we are hopeful that we don't. This is wonderful news. We are so happy that the darn odontoid moved. We know are Heavenly Father is watching over our little Emma Kate, and will continue to do so through out her surgery tomorrow. Thanks again to all our family and friends who fasted and prayed for her. Thank You. We can't thank you enough.

Nates detailed version...

Ok so as many know Emma went in to the hospital today for traction. With traction the surgeon secures a halo onto the head with 4 screws into the skull, then put weights to pull the skull up and away to try and change her condition. They put Emma out for this at 1045am, and were done 30 minutes later. It was very difficult for Nate and I to see the fear in Emma's eyes. Emma woke up and was disoriented and scared. This was very hard as parents. Emma got happier a little later and we could talk to her and distract her from the pain.

This is when a series of miracles happened. The CT people had a slot and fit Emma in. Originally we were going to have to wait for tomorrow. With Emma in so much pain this was not a pleasant ordeal. So we were excited. So we moved Emma and after a long trek got to the CT. Emma's surgeon wanted to see the CT of Emma to determine which surgery to perform. If no reduction from traction, then she would need a major operation removing part of the top of Emma's spine, through her mouth (called a trans-oral odontoidectomy)- A very complicated surgery with a 2 week hospital stay in store. We did not have much hope because traction has a low success rate.

I suppose the biggest miracle is the results of the CT. The surgeon was excited to see that the traction had indeed worked better than he had hoped. This was VERY good news for us! Basically, now Emma will have surgery tomorrow, and be out of the hospital by Monday. :)

Although the surgery tomorrow has a faster recovery, it is still a big surgery. The doctor will put Emma back in traction and then fuse her C1 and C2 vertebrae in the correct position. Also the doctor will perform decompression for her chiari malformation.

Kerry and I feel blessed that we have such wonderful friends and family to pray for us and support us. Thank you all very much.

End of Epistle

Emma Kate

i don't know if there is anything worse than seeing your child in pain. i so wish i could be the one going into the hospital today. Just wanted to say thanks to everyone who has watched my kids over the last few months (and thanks to those who will over the next few weeks!) and the sweet gifts Emma has received from friends. Thank you for your prayers. Thanks for the caring words of support. Thanks Jamie for these pictures of Emma, they so captured her personality.

Traction

Well, we have been E-mailing Dr. Muhonen with questions about Emma's upcoming surgery. He E-mailed us back saying that he would like to try traction. We had talked to him, and other doctors, about this procedure and while they all said you can try it but it has a very low success rate. Even at our last visit Dr. Muhonen said it's not likely to work. But in his E-mail he said if we wanted to try it we had to come in on Thur before surgery! So we made an appointment to see why he Was for it now. He simply said if it was his daughter (he has 3!) He would try it.

Well that would put her going in on her Birthday. He felt bad about that. So He is seeing if he can schedule her traction day the next week.

Traction will involve 2 pins in her head with weights stretching her cervical vertebra's She will be awake, but on valium she will be like that for 2 or 3 days. Then they will take her to get a

C-scan and see if enough pressure is removed from her brainstem. If it is they will just have to do decompression surgery and a cervical fusion. Basically if it works we won't have to do the Trans-Oral. Which he says is the hardest surgery for a neurosurgeon to do.

If we could avoid the trans-oral that would be AMaZiNG!

If it doesn't work then they will have to go in and do the trans-oral. then after that they will do the decompression and cervical fusion a day or two later.

There is also a chance we could do the traction, decompression, and the fusion. But over the next year or so it may not have been enough (mostly if the syrinxs in her spine doesn't go away.) and we might still have to go back in and do the trans-oral.

He told us to mentally prepare for the trans-oral. But it is for darn sure we are hoping and praying that the traction works!

Thank You friends and family for your prayers and support.

SURGERY

The date has been set for June 11. I know this is what needs to happen, but i am also freaked out.

Her surgery will be done at Choc Hospitol. (which is an amazing hospital)

Her neurosurgeon is Dr Muhonen (Who is an amazing Neurosurgeon)

There will also be an ENT involved in the 1st surgery, who we saw last week, but i can't remember his name!

She will be having 2 surgeries. The first will take about 8 hours. They will go in thru her mouth and remove the odontoid bone that is putting pressure on her brain stem. They will pack the open space with fat from her thigh. Then they will close her up. She will have a breathing tube in and will remain mostly drugged till the second surgery. That will take place a day or so later. During this surgery they will do a decompression, he won't know how much he will have to decompress till he gets in their and she will have an MRI in between the surgeries to help decide things. Then they will go in and fuse her cervical spine, using some hardware.

We will be in the hospital for at best 10 days.

Her surgery has some risks of infection and spinal fluid leaks, that are not uncommon. These are the things we will be watching for during those 10 days. If any develop we will remain in the hospital longer.

Back to school she goes!

Tubes Removed!

Friday the tubes came out (it only took us 3 years to get it done!) the doctor said they never would have come out on their own. The hole left in her ear drum she said was quit small and has a really good chance of healing and closing up completely. So her hearing should be completely restored.

The car ride home.

They removed the cartilage from behind her ears and so she has to wear a bandage for the next week then they give her a soft headband to keep them protected.

Celebrities!

http://www.championnewspapers.com

There was a sweet article about Emma and her friend Kaylynn in the Chino Champion Sat. Front page!

Endo & ENT

It has been a busy week with doctors. Mon. we say the Endocrinologist and the good new is her blood work is normal, and so is her MRI of her pituitary gland. The bad news is that makes it harder to get growth hormone (GH). It's starting to look more unlikely that we are able to try GH. The doctor is going to take it to a review board. If he is willing to prescribe the GH. It is almost a for sure our insurance will not cover it. Now the drug companies if they have a prescription from the doc will usually do a clinical trial for 6 months which is all we need to see if the medication makes a difference. I go and see the Endo again in a couple weeks and i'll know more on that.

Today we went to the ENT. Emma has had her tubes in her ears for 6 years which is 3 years to long. Long story why we haven't gotten them out yet. The good news is we are scheduled for SURGERY next Friday. Because they have been in way to long they will remove the tubes then take some cartilage from behind her ears and patch the hole in her eardrum in hopes that the eardrum heals without a permanent hole. She will be aloud back to school on Mon. if she wants, so this is not the big surgery. I did promise her a trip to Build A Bear for a new outfit for Snuggles. This made her o.k. with the fact she had to have surgery!

We all need a friend.

Last year this time Emma did a program at her school called Marathon. They would run a mile and a half 2x a week until they had reached 26 miles. Last year Emma struggled to keep up was last to finish and didn't say it hurt to run just that she couldn't. I found this strange and talked to her pediatrician about it. She referred me to a neurologist. who did an MRI, who diagnosed her with her conditions. When it came time to do it again this year she had little desire to walk it when the other kids were running it. She wasn't going to do it this year until she did P.E. with a girl named Kaylynn, who is blind. Then we arranged for Emma to lead Kaylynn, and Emma was excited to have a friend to walk with. So together they have accomplished and received a medal at the UCLA stadium.

Endocrinologist & Build a Bear

Friday we were lucky to get a cancellation apt. and get in to see the Endocrinologist. A miracle really. We reviewed past doctor visits and current bone age scans. A bone age is an X-ray of the hand that helps determine where the bones are at in development. Emma's first bone age was done at age 2 and her bones were only developed to a nine months old. I learned some bone ages are straight forward and you can tell the average age of a kid. Some are not. Emma's is one of those that is not. Some of the bones are 10 months delayed others are 1 1/2 years delayed. Typically a kid with hypopituitarism would be 2 years behind or more. Also we look at the growth curve of Emma's over her lifetime. While she is, and has been since she was 10 months old, been below the growth chart, she has always continues to grow at her own pace. A child with Hypopituitarism will have a sudden drop where they fall off the growth curve drastically. SO WHAT DOES IT ALL MEAN!

Emma will probably not be diagnosed with Hypopituitarism. She has to do blood test and another MRI with contrast of her Pituitary gland, to rule it out and to determine any other problems

What does that mean... The cases where growth hormone resolved a child's chiari and syrinx the child had hypopituitarism. So basically we are traveling on a road less, if ever it wasn't documented traveled.

I explained we understood that growth hormone treatment was a long shot. We have two neuro-surgeons, who agree it is reasonable to try, I figure if it resolved that would be amazing. But if it even just helps a little it might make it so brain matter doesn't have to be removed, or the surgery doesn't have to be as invasive.

She did mention we might have a hard time getting insurance to approve growth hormone. I told her i had talked to the drug companies and they will supply 6 months of treatment on a trial basis. So thats were we are at. We have another apt. in 2 months.

So since it was just Emma and I and it is rare we get to be out just us 2. We got lunch after the apt. and went to build a bear to spend her gift card. She was in heaven and the newest member of our family is Snuggles. She is well loved already.

Wow ~ We were suppose to be going to a 4 hour pre-op appointment tomorrow. Thanks to so many of you who fasted and prayed, put our names on prayer rolls, we will be enjoying Valentine's Day. I just have to say Thank You. Thank you for your faith, love & kindness. We are so blessed to have found the medical journal that had a case where a child condition was made better by growth hormones rather than surgery. We are so blessed to have found a doctor who is willing to try this approach. We realize that we are not out of the woods, yet. We still may need surgery. But for now, we are on a good path. The things i will be praying for now are that...

1. We get into an Endocrinologist

2. Insurance continues to approve treatment

3. Growth hormone is approved

4. The growth hormone resolves her condition

For if there be no faith among the

children of men God can do no miracle

among them; wherefore, he showed not himself

until after their faith

Quick update

I talked to Dr. Shafron at Phoenix Children's Hospital.

He was our Doctor who was taking it to a case study.

He brought up a third option. Of Course! They talked about doing a posterior decompression, but they also thought you would need to stabilize the spine, by doing a spinal fusion also. Then if more problems develop in the future we would have to go in and do the trans oral. I asked him about how many trans orals he does a year and he said none!

I also talked to him about trying the growth hormone as an approach, and he thought that was reasonable.

The good news is for now we won't worry about what surgery to do.

We will hopefully see improvement from the growth hormone and may be if we see enough. We may be able to avoid surgery all together. I realized it's a long shot. But one can HOPE!

Good News

So we met with Dr. Muhonen Friday. Then Sat. Nate and I sent him an e-mail telling him we wanted to see an endocrinologist and try Growth Hormone with Emma to treat her condition. There are some cases where it has been known to shrink the Chiari and Syrinx. There are also cases where it has had the opposite effect, and made things worse. We weren't sure how he would respond since he is the expert, and we are just worried parents : ), yet we were asking him if he would proceed a certain way. We had mentioned it in the appointment and he sounded open to it. We still kind of expected him to E-mail us back that we were crazy. Then just a few hours after, on a Sat. we got a response.

Yes on all your questions. I sent disc out yesterday.
For endocrine see Mark Daniels at Choc. No one compares for sure. I can help you get in. I need to check her every couple of months to make sure her nerves are still working.
Your plan is reasonable to try. Mm

Sent from my Verizon Wireless BlackBerry

I'm not going to lie we were really excited. Not only does he think it's reasonable to try, but he will help us get an apt. with a good Endo. We understand this is a long shot. But we are excited to find an amazing doctor, one of the best, who think our idea is good and worth trying. You may be wondering what this means, and what our plan is! So here goes. Start her on GH, then at 3-6 months get another MRI. If the syrinx is the same or shrunk then we will continue for another 3-6 months. If the syrinx is larger then we will stop treatment and proceed with surgery. As long as this works, she may be able to avoid surgery all together. I don't know. This will not fix the Basilar Invagination. It may create enough room where it is less of a concern, and we will be able to monitor her over the years. Who knows but we will deal with that when the time comes. For now we are happy to have found a doctor who is excited to work with us, that we trust.

Also good news for the week Emma has qualified for California Children's Service. It is kind of like an insurance but just for this condition.

Whew! Alot on our plate right now

First I have to say Thank You to all our friends and family who are praying for us, and who plan to fast for us today. I've heard people say that they could feel others' prayers, but I never understood exactly what they meant till now. Your prayers give me strength. I am overwhelmed with the decision we have to make for our Little Miss Emma Kate. I've seen people who have hard challenges in life and wonder how they do it. I'm beginning to understand how prayers to our Heavenly Father give us the strength to handle big challenges.

Now an update on where we are at. I'm never sure how much details to give. Sometimes this stuff can be overwhelming, and I worry about Emma reading too much info. If you don't know what a word is, don't worry I didn't know them either 3 months ago : ) I am amazed how informative wikipedia is. And google for that matter!

We saw a Neurosurgeon Friday. Dr. Michael Muhonen at CHOC. That brings our total to 3 neurosurgeons.. The one thing they all agree on is that she needs surgery. I have placed them in the order that we met with them. Here are their suggestions for surgery:

#1 Dr. Zouros at Loma Linda suggest doing just a Posterior Fossa Decompression Surgery. This surgery is fairly standard for Chiari and would consist of.... WARNING! scary details to come... a craniotomy (removal of a portion of the back of her skull), a laminectomy (removal of the back part of her first vertebra), a duraplasty (opening up the Dura, the membrane that hold our brain and spinal cord and the (CSF) fluid it floats in and they would add a patch to help relieve the pressure in this area.) They would also most likely remove the part of her cerebellum that has herniated into her spinal column. Then if all goes well and there are no leaks of CSF, or infections that develop she would be out of the hospital after 5-7 days home for 2 weeks, then when she feels ready she can return to school. They would have to shave a section of the back of her hair she would have a pretty good scar, but most of it will be covered when her hair grows back.

Pro's... The surgery is performed about 2 a month by most neuro surgeons. It has an 80% rate of stopping the progression of symptoms OR improvement.

Con... It does not address the odontoid putting pressure on her Medulla oblongata (Basilar Invagination & Platybasia) which is probably the problem that started all this. The long term side effects are not well known from not addressing this. But basically the bone rubbing on the brain stem is not good it can create a callus like thing and irreversible damage is possible.

#2 Dr. David Shafron at Phoenix Children's Hospital. (By the way I love Phoenix Children's Hospital all the staff really care about making positive experiences for the kids.) He told us Decompression surgery would be necessary and also thought more would be needed to be done to address the odontoid. He seemed to be leaning to a procedure called a trans-oral odontoidectomy. Which is where they would go in through her mouth, remove that bone, then may be a day or two latter flip her over and do a spinal fusion to stabilize the spine. Also the decompression surgery (what i explained above) would be done. Shafron took Emma's info to a case study, which has been reviewed, we are waiting to hear from him. Hopefully Monday.

Pros... Dr Shafron is a very kind doctor and he is in AZ. (Where we are moving to in the summer/fall. so we will be doing follow up with him in the future.) Also this procedure seems to address the area of concern directly, negating possible further surgeries in the future. Also this surgery has a higher liklehood of restoring CSF flow.

Con... we don't have AZ insurance, and that is a process! Also the surgery is very invasive. Emma would also have restriction of movement somewhat because of the fusion.

#3 Dr. We saw Michael Muhonen at CHOC (Children Hospital of Orange County). I liked the openness of this doctor. He said the reason Zouros wouldn't do an odontoitectomy is because he has never done one. So of course we asked if HE has! He said he does about one a year and has done 2 in the last 3 months. He has also trained under Dr Menezes who is the expert on this procedure. Muhonen performed about 2 a week while he was training.

Pro... of doing the Trans Oral odontoidectomy. The Problem is addressed, same as above.

Con... It is a much more invasive procedure and while Emma has symptoms, they are not severe. (yet!) It has a much higher risk for infection and problems (naturally it's more surgery.) Her hospital stay would be about 2 weeks, and I'm not sure how long after that till she would be able to return to real life! She would have spinal fusion which would restrict her neck movement.

So is anybody else overwhelmed? You should see me after an appointment with these doctors. My brain wires go all crazy and I start to ramble and make no sense, like in the movies when a robot gets overloaded!

There is also a less conventional approach we are pushing to try with Emma, and that is giving her growth hormone (GH). It is only successful in patience who have hypopituitarism. Emma has definite signs of GH deficiency. We have found a few cases where the chiari and syrinx were reduced with GH treatment. We have also found cases where it was made worse. It's a long shot. We get that. But it's an avenue we want to exhaust before we do surgery. We get the feel that Dr. Muhonen was a bit open to exploring this approach so we were happy about that.

After days like this, it help to take a step back and look at the positives. All three of the doctors are amazing doctors, who are capable to take great care of Emma. She has been taken really good care of by her school, she got 100% on her spelling test this week. Her friends have been great. Her Activity day leaders and girls are fabulous. This week she was the hostess for activity day and she was required to call all the girls and remind them. This is her second time, and she did awesome. The first time she was pretty nervous. This time She did it all by her self while I was getting the kids ready for dinner.

To end on a happy note

A really cute story... Last year Emma ran Marathon... where they run 3 miles a week for about 2 months, then when they have cumulatively run 26 miles, they run the last mile or so with the L.A. Marathon. Last year is when I first noticed Emma was having problems keeping up. BUT she did it. This year she wasn't going to do it, then she started doing P.E. with Kaylyn, a girl at school that is blind. Her and Emma are Kindred Spirits (for you Anne of Green Gable fans!) Emma has been learning how to be Kaylyn's eyes. So I talked to Kaylyn's mom and she is doing Marathon with Emma. So together they will run/walk their miles hand in hand. How cute is that? Squish squish it's brings tears to my eyes.

Thanks for your faith and prayers. have a great weekend

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.