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.