Everyone's Happy She's home!

When Kiera walked in the door both her sister, and her dogs loved her over and over! Savannah wouldn't let go of her, and Daisy kissed every inch of her face at least twice! It was Very sweet to see!
After the initial excitement wore off, the two girls were connected at the hip for a long time! It was great! They played games, and giggled non stop!

The day Kiera was being discharged from the hospital Kiera, as part of her therapy, got to make cookies, then at the end of her therapy went into the therapy room and shared the cookies with all the therapists, patients, and nurses! It was great fun!














She had amazing people taking great care of her while she was there! They were ALL wonderful people, and we are VERY grateful for them all!

Relaxing at home

We have been home now for 9 days, and are LOVING IT!

The first hour Kiera was home, her and her sister couldn't hardly stop hugging, laughing, and playing little games. It was so touching to see those two having such a good time together!

We have all felt thankful that we were home to enjoy Thanksgiving with our family!
It has been an amazing thing to experience gratitude for all the little things, like sleeping in my own bed, having a lazy day at home, chilling on the couch with my dogs in my lap, even daily chores around the house!

Home sweet home!

Going Home!

We are SUPER excited to be going home today!
Kiera will finish her day of therapy, then she will be released!

As part of her therapy sessions today they are going to be standing, and making gluten free cookies, and then this afternoon there will be a going home party, and they'll pass out the freshly baked cookies!
We are so excited we can hardly wait!

We have been warned that there is almost always regression when sent home, then most times, they start going back up. So, I'm nervous about that, but I hope its something we can all handle!

Two nights ago Kiera had really intense walking in her therapy! They had her walk farther, longer and more frequently through the day, and that night she hurt so badly she wouldn't get her legs into bed! She sat on the edge of her bed and cried!
We talked about how bad it was, and I asked her, if a level 10 was like the day she came to the hospital, then where was she? She said 9! I was so scared, and worried! The nurses gave her all her pain meds that the doctors had said she could, but it never seems to do a thing! They gave her melatonin to try to help her get tired, but the pain just out weighed everything!
At 11:00 I asked if there was anyone in the building that can give blessings, and so the nurses sent out a page. (With as long as we have been here, it's something I hear several times daily, so I knew it was an option!)
So, around 11:30 two men in scrubs, one with a long goatee, came in and gave her a very comforting sweet blessing.
I don't remember what was said, I just remember crying through the whole thing because I was at my wits end! I try so hard to hold it together for Kiera, but some times, I just can't!
After that, the nurse came in, and we tried to put her legs up on the bed. It still hurt a great deal, but we got them up.
We had her bed in an upright position, like sitting, and put all her fluffy soft stuffed animals by her face. I caressed her face and head as she closed her eyes, and fell asleep in just a couple minutes!

The next morning she said her level was an 8 or 9, so still high.
The therapists came in to start therapy, and I was petrified with her pain level where it was how that was going to go.
They got her to stand, and she had no problem expressing her pain in her face. She even groaned and let out little whimpers! Then they started walking down to therapy.
Since I was no longer allowed to go down to therapy with her, I just waited in our room, very anxious!

When she came back to the room, she was walking better, and not expressing as much pain!
She said her level was at a 5! I was SO happy!
The rest of the day went well! Therapy was not as intense as the day before, so she also went to bed much better!

Today we are ready to go home!

YEAY HOME, HERE WE COME!

One more week here

We met with the team of doctors here and decided that we need to finish out what our insurance will cover for inpatient care. I think if our insurance covered more, they would want her to stay longer because she can get such a great routine of intense therapy all day!
After we go home, she will continue therapy in outpatient, but it will not be daily like it is here.
That would be better daily, but it doesn't work that way I guess.

Today was the most progress we've seen yet! They had her walk all the way to the elevators, go to the first floor, then to the other end of the hospital to see a HUGE ginger bread house. Then they walked back, and took the stairs, doing a total of 24 stairs!
WAHOOO!
That was exciting!

I don't have a picture for her therapy today because they are having me stay away to help her rely on expressing herself to the therapists, not me.
She is doing well with it so far!

"Somataform Disorder"?

The doctors here have all been working together and say they are comfortable with saying that she might have a condition called 'somataform disorder'.

They also said they can't say 100% if that is the diagnosis, but that they feel comfortable treating her for it.

This is copied from Wikipedia on Somatoform disorder:

"In psychology, a somatoform disorder is a mental disorder characterized by physical symptoms that suggest physical illness or injury - symptoms that cannot be explained fully by a general medical condition, direct effect of a substance, or attributable to another mental disorder (e.g. panic disorder).^[1] The symptoms that result from a somatoform disorder are due to mental factors. In people who have a somatoform disorder, medical test results are either normal or do not explain the person's symptoms. Patients with this disorder often become worried about their health because the doctors are unable to find a cause for their health problems. Symptoms are sometimes similar to those of other illnesses and may last for several years.

Somatoform disorders are not the result of conscious malingering (fabricating or exaggerating symptoms for secondary motives) or factitious disorders (deliberately producing, feigning, or exaggerating symptoms) - sufferers perceive their plight as real."

All of this makes me think about Fibromyalgia. (I'm not saying that I think Kiera has a form of it at all) Doctors don't have a solid cause of fibro, and only know some ways to try to help the symptoms. So, I wonder if this condition has some similarities that way?
They are working on finding what can be helpful in helping her becoming functional, but maybe like fibro there are yet unknown factors in the cause?
Who knows.

Furry visitor

Today we had a surprise visit from a therapy dog! Her name is Liberty, and she loves to get attention from all the kids she gets to go visit!
It was impressive to watch her! Her owner helped her up on the bed. With Kiera's tender legs, her owner was very careful and gentle! Once on the bed, she slowly carefully laid down and held perfectly still! She laid next to Kiera, and as many hands came and gave her a royal rub down, she started falling asleep! It was SO sweet!
This sweet dog was as therapeutic for me as it was for Kiera, if not more.

Therapy

Kiera is so strong and brave for pushing herself to do all these games and activities through all her pain! Look at her go!

In the Hospital

Kiera has been doing some intense physical therapy. Its really ingenious what they have set up! They do games and activities that all implement therapy. Like, for Kiera, since she can't stand or walk without severe pain, they have her play games like bowling. So for her turn, they help her stand, she rolls the light weight ball, and then sits down again.
She has played all kinds of games and activities! They have played board games, and on her turn, she stands up. The brilliant thing about this is she gets so distracted by the fun activity, pain is not the focus! Some times I see her grunting, and squinting in pain, and others I see her smile and laugh!


This is our room. I say "our" because I eat and sleep here too!
Sisters are great!!! Savannah has been So excited to spend every free moment here with Kiera!
We've had so many fabulous visitors! Here we have cousins, and a furry stranger by the name of Daisy! :)

Kiera's Mystery heath problems

It all started the first week in March, 2011.
Kiera woke up sick, with what turned out to be Influenza B. She was very sleepy for 2 days and she had fever of about 103 for a day. On the third day she woke up feeling much better, so I told her to get up and get ready for school. She attempted to stand up, and let out a scream. Apparently her feet and legs were so tender to the touch that she could not stand, or even touch any part of her legs without a great deal of pain!

We took her up to Primary Children's Hospital where they found a very large amount of enzymes in her legs. I forget the name of the enzymes, but a normal number is around 100-200 and she had 4,000. So they gave her an IV to "flush" out the enzymes, and then sent us home.
She took a week to fully recover, and was back in school for about 2 weeks, when she got another small virus. This virus had the same effect on her as the first. We took her back up to Primary Children's, where they tested for the enzymes again, but found it was at a totally normal number.

We then went back and forth to Primary Children's Hospital 11 times over the next 3 months.
Test after test they ruled out a lot of serious things, along with anything else they could test for. They did a bone scan, MRI, CAT scan, & we spent part of a day in the neurology department getting a series of tests that were very hard to watch! Kiera was drugged, so she didn't feel it until later, when the medication wore off!
They ended up telling us they thought it was "Post infectious neuropothy".

Along with this odd pain in her legs she developed really severe head aches that would hit suddenly, and they were so bad it was completely debilitating! She couldn't sit up because it hurt her head, and made her dizzy. And when she had to use the bathroom she would sob as we carried her in, and sob as she sat on the potty with her head leaning on the counter for a place to rest her painful head, and she would scream and cry until a few minutes after she'd get situated in bed again.

Then, right as the school year ended she started to recover, and over the summer she made a full recovery. We spent time with her helping her learn to walk properly, and build up strength again.

Things seemed to be back to normal, but we were told at the hospital that due to the fact that her issue was mostly a mystery, that she could get hit with it again. Maybe with a specific virus, or any virus, nobody really knew. She had gotten sick once over the summer with no problems!

School started up again, and things were going great! Then about the 11th of October, just before bed she said her legs and feet hurt a bit. I disregarded it, and tucked her in.
The next morning she could not put pressure on her feet because of pain!
With our previous experience at Primary Children's we didn't take her to the hospital. We contacted the school district to ask them to borrow a child's wheel chair again, and also her pediatrician.

The pediatrician said that because she relapsed he thinks it will be something that reoccurs, so he wrote out a prescription for us to get her own wheel chair.
We have found a chair that fits her to well! It seems like it was built just for her. But the problem is insurance probably wont cover it because it isn't a "standard" wheel chair. Standard is the cheapest chair available, which also means its bigger, heavier, and clunkier!
The one we want to get her is light, small, she doesn't have to reach over the arm rests uncomfortably to push the wheels, and another big deal to her is it will fit under her desk at school.
Now we are just waiting to see if insurance will accept or reject it.

We are currently trying to find a way to build a wheel chair ramp up to our front door. Due to the amount of steps we have, and the requirements for the angle of the ramp it would cost $3,000. just in supplies!

We took Kiera in to see a new neurologist a couple weeks ago, he has been talking to other doctors at primary Children's to brainstorm and see what else can be done to find a diagnosis for Kiera. The doctor called and set us up an appointment with a rheumatology in a couple weeks at the University of Utah.
At this point its a waiting game. Her pain has been doing a roller coaster kind of ride. Good days, bad days, good days and it just keeps going.
At one point she was in SO much pain that she couldn't have the blankets on her bed touch her legs. She cried and cried! She wouldn't even adjust herself in bed because moving at all made her legs hurt. Mark and I sat next to her bed, holding her hand, singing to her trying to help her get to sleep!