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.