making strides

Cameron is lieterally making strides (walking more steps) each day.  As of today he is a Rehab patient instead of a neurology patient.  YEAH!!  

Cam has an intense 3 hours of Physical and occupational therapy everyday but is having fun and getting stronger. 
His personality has 100% returned and most of the time I am loving it. There are exceptions like when he sprays me with the shower hose right before I am going out for a date with Mark!  Or when he yells at me just like he used to do at home!  Among other little Cameron quirks!    I will admit that when it was time to turn him over to Mark last night I was looking forward to the 15 hour break, he's quite the handful!
It is fun though to see him interact with all of the nurses and therapists. They think he is pretty great and laugh at him most of the day. 
At this point he is so close to being able to walk without assistance, it's amazing. 
He was truly blessed.

Thanks again to all of our GREAT family and friends that have helped us out and visited us.  Having never been on the recieving end of all the help I am feeling totally inadequate at being able to thank everyone enough.  

Mom??

Cam- mom do you have your camera with you?

Mom- yes

Cam- do you have any videos of me when I could walk? I want to watch one so I can remember when I could walk.

Mom- Oh, Cam, I don't have any videos like that on my camera, but I do at home, I will have dad bring them.

Cam starts crying. I really just wish I could walk
I want to be back to my old self.

Oh Cameron, I am so sorry. You will be your old self very soon. If I could take this away from you and have it be me instead I would.

But I don't want that mom. I don't want you to be sick.
I'm just the scaredest kid in the whole world.

Cam you are the bravest and you will be out of here so soon.

After rubbing his arms for a few minutes then going back to my bed...

Cam- Mom, I just feel kinda scared right now, can you come sit close to me so I can see you.
Sure Cam, I'm right here. And off to sleep he went.

This conversation was at 11:50pm Cam had fallen asleep at 10:00pm but the nurse had to come give him some meds at 11pm so we had to wake him up. It took about 20 minutes of convincing to get him to take the meds then he had a hard time going back to sleep.

I know that he really will be able to go home soon and my heart is joyful at the progress he makes everyday, but it breaks my heart to hear him say things like this. He is only 5.
Of course he is scared, of course he wants to go home, wants to walk again, and wants to be back to his old self.

New York Steak and Baked Potatoes

thats what Cameron ordered for dinner, along with bacon and mandarin oranges. I'm afraid that he is going to be very dissappointed in his menu options when he gets home. Maybe we can talk Aunt Terri Grandma into staying forever at least then someone would cook!

Cam had therapy twice today and with the help of a walker and a little assistance from the therapist he was able to stand and take a few steps! Hayden got to play at Physical Therapy too!

Mr. Nate came to play today! This kid and Cameron make a crazy pair I'm scared of when they are teenagers, lets hope they didn't listen to the stories their dads tell about when they were growing up together!

Not the best picture of Cameron, but cute of Hilary. We wanted him to hold still for one picture with Hil but he was in his wheel chair and was not going to hold still! It was a sad goodbye to Hilary today, she goes into the MTC tomorrow headed for the Rochester, New York Mission. We are going to miss her so much but know she will be a great missionary, the people in New York are lucky to be getting her for 18 months.


Grandpa Heap is going home tomorrow too. Tonight he brought Cam a bag of suprises. One thing he brought was a stuffed Elephant. GPa said that the elephant reminded him of Cameron because it is the STRONGEST animal, just like Cam is the STRONGEST kid! Thanks Grandpa, we will miss you.

Cameron still throws everything from his bed when he is done with it.

An empty milk carton just hit my foot!

He says he has to throw things because he can't walk.

I say, FAIR ENOUGH!

Colby got to check out of school early today to ride to the hospital with Gma and Hayden and I. He was so excited to get out early, he told me that he prayed all day that he would get to check out early!! Colby is an amazingly smart kid. I can't wait to see the great things he will accomplish in his life.

Tomorrow we start a pretty regimented schedule of therapy.

It's a good thing.

It means Cameron is getting better!

Ok, so I better end this post, Master Cameron is calling me!

PROGRESS

Cameron has been making AMAZING PROGRESS!! His spirits have been lifted with the help of fun visits from family member and from a higher power. Last night, at midnight, when I finally convinced him it was time for bed, I was rubbing his back and he said, "Mom, I wish no one couldn't walk and I wish no one got sick, even bad guys." Again his sweet spirit melted my heart. These tender moments with my son are priceless for me and I hate to miss one minute, so on nights like tonight when it's my turn to be home, my heart longs to be there. Although to be able to put my Hayder baby to bed and cuddle with him and watch wipe out video's with Colby was priceless too. No matter if I am at the hospital or at home, my heart it always tugged in two directions.

Also, there is no way I can ever thank my parents and Mark's parents enough, but I will say Thank You in every post so they know we don't forget how much they are doing for us and know we appreciate all of it. Marks mom kept Hayden today so that my mom and dad could spend some time at the hospital. Mark drove me home and so we got to have a little time together too. I am quite sure that Cam was totally spoiled by GMa and GPa! Some of Cam's friends from the neighborhood came by to visit today too. Cam asked if they could come back tomorrow! Thanks Jayne and Valerie for bringing your kids down! And tonight Cam's favorite Utah cousin came down from Ogden, Brandi brought Adrian and although I was not there I am sure Cam had a CRAZY time with Adrian! Oh, and Uncle Ryan brought Jacob back again this morning before they had to head back to AZ. Thanks so much to Ryan too for driving Jake to the hospital everyday this past weekend, Cameron loved every minute!

Cameron with the Physical Therapist. Despite being very nervous, he did great! Ms. Lisa was very impressed with his effort.

This is a picture of Cam's doctor/nurse poker. If they are hurting him he pokes them! In a children's hospital, the CHILDREN are in CHARGE!!

I am pretty sure that without Aunt Emily here to visit Cameron, that he would still be sick! She has a way of making his day every time she comes to town! Last night she brought a PARTY to Cam's room. They threw darts (plastic forks) at blown up rubber gloves, made party hats, had treats and played games! Thank you so so so so so so so much Emily. Are you sure you had to go back to Vegas?

When Cameron asked Colby to push him in his wheel chair,

I CRIED. It was AWESOME to see Colby serving his brother that way and having fun doing it.

Even though Cam wasn't at GMa's to have fun with Jake, they managed to have fun anyway in the hospital!!

Because one of the side effects of GB is double vision, which Cam has sometime, he got a SUPER COOL PIRATE EYE PATCH!!! You should hear his Jack Sparrow voice too!

It doesn't get any more touching than this. Finally asleep with his new Webkinz Gecko that he named RAMON after his favorite Nurse! I sit and stare at the heart rate monitor all night making sure he's ok, if I could hook all of my kids up to those things at night I would. Watching the lines and the numbers beeping across the screen... it really was a time of meditation for me. The human life is AMAZING and so fragile. How can anyone not believe that there is a GOD? Who else could make such intricate, delicate, perfect things as people?

WIPE OUT

To pass the time here in the Hot-Spital, Cameron and I watch wipeout videos on You Tube.  The Following link is one of our favorites. 


http://www.youtube.com/watch?v=BK4KorpXfaY

 When I remember to bring my camera cord from home I will post some pictures of our patient.

thoughts for Sunday

Since today was Mark's sister Hilary's farewell, he stayed at home last night so he could be there. I am sad that Cam and I had to miss out on such a fun day for our family, but Hilary knows we love her!
I found out this morning that there is a Branch here at the hospital and they have a sacrament meeting on Sunday and even a primary lesson for the kids. I could not talk Cameron in to going to the sacrament meeting, but he said I could go without him. It was only 30 minutes long.

Elder Arnold of the 70 was there and a ward from the U came to do the sacrament and talks. I went seeking strength and recieved more than that. The hymns that were sung spoke to my heart and taught me again that we have a merciful loving God and a Savior, Jesus Christ who love us and take care of us. Jesus will strengthen Cameron's weak legs and help him walk again. He will lift Mark and I so that we can be strong and get Cam through this. He (Jesus) knows our pains, all of them, he went through it all in the Garden of Gethsemane. We can cast our burdens at his feet and he will take them. I know that Jesus loves little children so much.
3 Nephi 17:21 "And when he said these words, he wept, and the multitude bare record of it, and he took their little children, one by one, and he blessed them, and prayed unto the Father for them."
I also know that through the Priesthood power and the blessings that Cameron has recieved that he is healing faster than the doctors expected and that he will continue to do so. Our prayers and our Faith are calling down the powers of heaven to be with our whole family at this time.
I am so grateful to everyone that has helped support us at this time. Thank you so much.
If anyone would like to join us, we are going to have a special fast for Cameron next Sunday, that he will be able to continue to recover quickly and regain his strength and walk again soon.

the first full day....

KIDS ARE AMAZING! Cameron is AMAZING!
Yesterday Cam had a long hard day. He didn't sleep well the first night because he was being so closely monitored and was being woken up about every hour. He has a huge team of doctors and nurses and we feel he is in the best hands. Dr. Morita the Neurologist is great we really like her and feel confident in her.
So yesterday Cam had to have a lumbar puncture (spinal tap) to get the fluid they needed to run the test to be sure that he had GB, he also had to have a pick line put in his arm. That was very stressful for him and he was really scared of getting another poke. He did GREAT though and came through great. He was really glad to have the IV out of his hand so that he could use his hands better. When he was coming out of the sedation he kept looking at me and saying "mom your face looks really really funny!"
Later in the day he had to have a swallow study to determine if his muscles in his throat were strong enough for him to eat. Had he not been able to pass this test he would have had to have a feeding tube put in. By this point he had not had anything to eat for over 48 hours and had not had much sleep at all, it took everything Mark and I and the Speech Therapists had to convince him to do the swallow study but he did it and passed with flying colors. HE COULD EAT!!! Nothing lifts the spirits like being told you can eat real food after almost 2 whole days of not being able to. When we got back to the room we looked at the room service menu and he ordered pancakes, french toast, oranges, orange juice. Between 4 and 7pm he ordered 4 times. Poor boy was starving and wanted to have a little bit of everything. So far he has kept up his appetite and even gets to order whole trays of dessert just for him!
Another boost to his day yesterday was that Colby and Jacob and Grandpa and Ryan and Julie and Nathaniel and Hilary and Emily came to visit. And Grandma and Grandpa Heap got here from Arizona. All of them arrived with a bag of surprises!! Cameron and Jake were so cute! Jake sat in the bed with Cam and they watched WIPE OUT videos on the computer. Colby drew Cam and really cool picture and told him he can't wait for him to be home so that they can stay up late talking in bed! Oh, and getting a Pirate Eye patch to wear because sometimes his eyes get wobbly and he sees two of everything. He thinks the eye patch is cool.
Last night I rode home with my parents and Mark stayed with Cameron. As much as I needed a good nights sleep and as much as I missed my baby Hayders and Colby and as much as I knew that Cameron was just fine with his dad, it was so so so so so hard to leave the hospital.
My head hit my pillow in my BIG SOFT very own bed and I was out like a light at 11:30 pm, my sweet baby was kind enough to wake up at 6am instead of his usual 8am. Oh the pain of not getting enough sleep!!!!!!!!!! I was able to go to Colby's last Jr. Jazz game and spend most of the day with my Hayder baby.

Before I end this day I have to tell the funniest part.

Cam had a really cool nurse named Dave, he was great with Cam. After Cam had woken up from the sedation and still had doctors hovering all around, he was really agitated and nervous about the next test and not having been able to eat, on top of just being in a lot of pain. Nurse Dave had the best idea of the day and asked Cam if he wanted to have a water fight with the doctors.

Cam said "SURE" as loud as his soft little voice could speak.

Dave handed him a syringe full of water and called in the resident doc. As soon as Dr. Buchanan walked in the door Cam nailed him with water!

Then Nurse Dave told Cam to trick Dr. Morita when he called her in. She walked in and Cam, in his softest voice, asked, "when can I eat?" she leaned in closer and said what honey? And Cam SOAKED her with water! IT WAS GREAT! Everyone got a good laugh out of that including the Doc. she was a really good sport. He squirted a few more people through the day and even got Ramon the Tech so that it looked like he peed his pants!

Gee-yon Bar-A

I would like to thank our friend Mike for this description of Guillain Barre Syndrome that he added to my comment section the other day. 

FYI: Guillain-Barré syndrome is a disorder in which the body's immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances, the weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until the muscles cannot be used at all and the patient is almost totally paralyzed. In these cases, the disorder is life-threatening and is considered a medical emergency. The patient is often put on a respirator to assist with breathing. Most patients, however, recover from even the most severe cases of Guillain-Barré syndrome, although some continue to have some degree of weakness. Guillain-Barré syndrome is rare. Usually Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally, surgery or vaccinations will trigger the syndrome. The disorder can develop over the course of hours or days, or it may take up to 3 to 4 weeks. No one yet knows why Guillain-Barré strikes some people and not others or what sets the disease in motion. What scientists do know is that the body's immune system begins to attack the body itself, causing what is known as an autoimmune disease. Guillain-Barré is called a syndrome rather than a disease because it is not clear that a specific disease-causing agent is involved.


http://www.ninds.nih.gov/disorders/gbs/gbs.htm

I also read that approximately 80% of patients have a complete recovery within a few months to a year.

from primary childrens hospital

(picture of strength)

Well, here we are in the hospital, for how long we don't know. They have said at least a couple of weeks, but I know that Cam is going to get better quicker than the doctors think, he's STRONG like that! For now though he thinks he is going to starve to death because they won't let him eat until after all the tests tomorrow. I keep telling him to be brave and that we brought him to the hospital to get better. He got mad at me and said, "you brought me here to starve me to death!" Feisty strong 5 year old he still is. He is going to set new standards of strength for this Guillain Barre Syndrome.

Prayers for Cameron

In my last post I said that we thought Cameron had something called Toxic Synovitis, well, he doesn't have that.  After 11 hours in the ER at Primary Children's Hospital on Monday and an MRI yesterday and a visit with his pediatrician today, we are still not sure what's wrong with him.   He can't walk and is getting weaker everyday.  The pain in his leg that was hurting him so much seems to be gone, but now his legs are just weaker and more wobbly as are his arms and hands.  Tomorrow we go back to Primary Childrens to see a Neurologist and run more tests.  Seeing my once energertic, loud, crazy 5 year old not even be able to stand up on his own is so hard.

It has been three full days of doctors and who knows how many more to come.  I used to wish that my life were a little more interesting as per my "Am I Lazy" post last week!  But after this week and these three days of not seeing my baby or Colby (they have been staying at Mark's parents, we could not do this without them) I would give anything to have my normal uninteresting life back, to have all three of my boys tucked snug in thier beds at my house. 

As hard as this has been watching my child go through this and not knowing what is wrong, I have faith in the power of the priesthood and preisthood blessings.  I have faith that Cameron will heal and be ok.
To all of my friends and family that read this, please keep Cameron in your prayers, I know that prayers are answered.   Thanks so much.

Toxic Synovitis

Toxic synovitis
Toxic synovitis is an irritation and swelling of the lining of the hip joint. The condition causes pain and tenderness that may move down to the thigh and knee; it sometimes makes a person limp.
Toxic synovitis is the most common cause of hip pain in children. It occurs most often in boys between the ages of 4 and 10 years. It commonly follows a mild injury or an illness with low-grade fever, such as tonsillitis or an ear infection.
This condition usually resolves on its own, but treatment may be given for pain and inflammation.
Toxic synovitis is also called transient synovitis.

Self portraits by Cameron

WARNING: I wrote this for journaling purposes, read on if you wish but it's kinda lengthy!

My dear sweet little 5 1/2 year old Cameron has been sick this week. He has been complaining that his knee hurts, the first few days we wrote if off as growing pains and gave him Advil for the pain. But by Thursday when he was limping and had not been able to sleep for three nights I started to worry and let him stay home from school. He literally laid on the floor all day and kept telling me that he needed to go to the Dr. and get an x-ray. If he needed to get up, I had to help him. I took him to urgent care that night and the Dr. said that he needed an x-ray and blood work, Cam grinned at me and said, "see mom, I told you I needed an x-ray!"

After x-rays of his knees and hips and blood work we still didn't' know what was wrong. Dr. said it could be growing pains and just keep giving him Advil but if it's not gone by Monday to bring him back in. Yesterday, he was not any better, today, not any better. The night of ZERO sleep are starting to take their toll on Mark and I and Cameron too. The pain keeps up all night, he literally can't sleep, he lays there staring at the ceiling asking how long until morning. So by 4pm today when he could not go from the floor to the couch, we called the on call pediatrician. We were starting to get really worried and were ready to take him to Primary Children's. Dr. Larson called us right back and after listening to his symptoms told us exactly what is wrong. He literally hit the nail on the head with out even seeing Cameron. He said that he has what is called Toxic Synovitis. He said it is painful and the kids usually are pretty self limiting and that they shuffle around like and old man because it hurts to walk. He said that it lasts from a week to ten days. Well, we are in the 6th day so hopefully it turns around soon. OH THE RELIEF we felt to hear this news from the Dr. This has seriously been so hard to care for him this week. I felt so bad for him and frustrated at not knowing whats wrong. GOD BLESS Doctors and SICK Kids.

Am I lazy?

Does anyone else ever feel this way? PLEASE tell me I'm not the only one!!

Instead of getting the guest bedroom ready for our guest that is coming in the morning, and a million other things that I should be doing while the baby is asleep, here I sit, at my DANG computer!! Sadly this cartoon is so true!

Some of our favorite tv shows

Mark and I, other than sports are not big tv watchers. There is not a prime time show out there that we have ever watched other than American Idol for the last 9 years. However, late at night after the kids are in bed we do have a few favorites that we try and remember to watch!






This show on The Food Network I really like. I love to cook and I like to imagine myself on the show someday and winning the $25,000 Grand prize. Maybe. Someday.
Another favorite show, don't know why I like it but I do. Maybe it keeps me from letting my house get to the point of needed this show to help! Mark doesn't love this one, so I usually get to watch it when he's not home!

Mark and I have watched this show for a few years, we love it! I can't wait for the new season to start! Yeah, the fishermen are all a bunch of "dirt balls" but it's very entertaining!

So far we have been enjoying the new season of American Idol. We never make it through the whole season so we'll see how long we last! I can't believe though that this is season 8! How has it been 8 years already?!

One of these days Mark and I are going to buy this book and take a road trip across the country to eat at all these places. This show is a lot of fun to watch, but don't watch it when you're hungry!

WINNER WINNER Chicken Dinner!!!!

Ok so the last time I won anything was a cake in the cake walk at the Halloween carnival in SJ when I was like 9 years old. (does anyone else remember those Halloween Carnivals they used to have at the Jr. High?) Well, today I broke my loosing streak, I won the photo giveaway from EYEFUL Photography. Not sure yet when I will have the photos taken or which child I will choose, but when I do I will definitely post the results.

Need some new pictures of your kids????

(all images property of Eyeful Photography)

Who wouldn't love to WIN a photo session from Jenn at EYEFUL PHOTOGRAPHY!!! She is doing a giveaway over at her blog. Check it out and enter for yourself, but hurry it ends on Friday!!

A Grand Idea

Dear American Liberals, Leftists, Social Progressives, Socialists, Marxists, Obama supporters, et al:

We have stuck together since the late 1950's, but the whole of this latest election process has made me realize that I want a divorce. I know we tolerated each other for many years for the sake of future generations, but sadly, this relationship has run its course. Our two ideological sides of America cannot and will not ever agree on what is right, so let's just end it on friendly terms. We can smile, slate it up to irreconcilable differences, and go our own ways.

Here is a model dissolution agreement. Our two groups can equitably divide up the country by landmass each taking a portion. That will be the difficult part, but I am sure our two sides can come to a friendly agreement. After that it should be relatively easy! Our respective representatives can effortlessly divide other assets since both sides have such distinct and disparate tastes. We don't like redistributive taxes so you can keep them. You are welcome to the liberal judges and the ACLU.

Since you hate guns and war, we'll take our firearms, the cops, the NRA, and the military. You can keep Oprah, Michael Moore, and Rosie O'Donnell (you are however, responsible for finding a bio-diesel vehicle big enough to move them). We'll keep the capitalism, greedy corporations, pharmaceutical companies, Wal-Mart, and Wall Street. You can have your beloved homeless, homeboys, hippies, and illegal aliens. We'll keep the hot Alaskan Hockey Moms, greedy CEO's, and Rednecks. We'll keep the Bibles and give you NBC and Hollywood.

You can make nice with Iran , Palestine, and France, and we'll retain the right to invade and hammer places that threaten us. You can have the peaceniks and war protesters. When our allies or way of life are under assault, we'll provide them job security.

We'll keep our Judeo-Christian Values. You are welcome to Islam, Scientology, Humanism, and Shirley McClain. You can have the U.N. but we will no longer be paying the bill. We'll keep the SUV's, pickup trucks, and oversized luxury cars. You can take every Subaru Station Wagon you can find. You can give everyone healthcare, if you can find any practicing doctors (that is practicing, Howard Dean) who will follow to your turf (sic). We'll continue to believe healthcare is a luxury and not a right.

We'll keep The Battle Hymn of the Republic and The National Anthem. I'm sure you'll be happy to substitute Imagine, I'd Like to Teach The World To Sing, Kum Ba Ya, or We Are the World.

We'll practice trickle down economics, and you can give trickle up poverty its best shot. Since it often so offends you we'll keep our History, our Name, and our Flag.

Would you agree to this? In the spirit of friendly parting, I'll bet you ANWAR on who will need whose help in 15 years.


Sincerely,

John J. Wall

Law Student

American


P.S. Please take Barbara Streisand.


(message via pedalingfast)

Colby's 8th Birthday

Totally unlike myself...I didn't take many pictures at all of this past weekend. Now I am kinda sad that I didn't, it was a big weekend for us.  On Friday the 30th it was my & Colby's birthday and we let the kids miss school so we could have a fun day with Gma and Gpa Heap.  On Saturday Colby was baptised. It was a neat experience for our family and it was nice that all his Grandparents and some other family and friends could be there. 

How can it be that I have been sharing my birthday with this GREAT KID for 8 years already?

On Friday we went to the Bean Museum at BYU, it's free and the kids really like it.  Right now they have a really great African Lion exhibit and Hayden wasn't sure what to think about all the Lions, it was Great! He is at a really fun age to take because he LOVES Animals and points his little finger at everything and says, "whats that?"  SO CUTE!!

It looks like this lion is waiting to pounce on Hayden! Kinda freaky.