Home Sweet Home

Last night, Sadie and I arrived home from the hospital.  She is doing well.  All in all, her problems were much less serious than they might have been.  She had a combination of EBV (a mono virus), a severe sinus infection, fevers and strep throat.  Her body was worn out trying to fight them all.  Doctors suspect that the sinus infection could have started a month ago and actually thrown off the results of her blood draws.  Her black eye, they now suspect originated from a large pocket of sinus fluid located below her eye, shown on the MRI.  Her symptoms were the same as other serious complications of liver transplant.
Today, her nurse Sharon called to let us know the results of her EBV testing arrived.  A few weeks ago they told me that this virus had "skyrocketed" in her blood.  I asked what the levels had been.  Sadie's EBV levels were at 371,000.  The levels we got back today were 4,081-- a "manageable" level for a person with this virus.  No wonder Sadie felt so awful and couldn't get better.  We will take her back to Primarys for another ultrasound of her arteries and liver soon.
I am grateful for the many doctors, nurses, and others that continually help us.  I am also grateful for support of family, friends and others who we have met as we continue to take a medical journey with Sadie and now Trevin.
Coming home is always wonderful and hard.  It is very emotional for me each time.  By the time we got home last night, I was beyond grumpy.  Grouchy to the point that I'm sure my family wondered if I even wanted to be home.  They had planned a fun surprise and all I wanted to do was give them hugs and crawl into bed. I am grateful that they forgive me for being cranky.  Being able to sleep at night, with no alarm monitors, nurses, or announcements over speakers is wonderful.  In fact, I think I'll go practice sleeping now so that I will be a nicer person for my family to live with tomorrow. They are pretty awesome. It is good to be home.

One Black Eye & Two MRIs

Well, what can I say?  We're back in the hospital.  Sadie hasn't felt good for about four or six weeks.  Her labs have been goofy and she's been extra tired. She's also had some odd symptoms that I think I wrote about last time.  She lost her first two teeth about a week and a half ago.  She began running fevers and to complain of headaches, eye pain and had a runny nose.  I took her to the doctor last Monday.  On Friday evening, she was leaning on my shoulder, got up to go to the bathroom and hurried back to tell me that my black shirt had given her a black eye.
Sure enough, her eye was black and quickly swelling shut.  I called Primarys and was told to take her to our local doctor (to determine if Sadie needed to go to Primarys by ambulance or to see if it could wait until Saturday or Monday).  They were worried that her blood wasn't clotting.  The two doctors then did a phone consult and we were sent home with orders to be at Primarys by noon the next day.
So far, Sadie's had numerous blood tests, three IVs, two MRIs and one ultrasound.  The first MRI checked her brain activity; the second checked out her abdomen region for lymph nodes.  The ultra sound tested her liver arteries and veins.  She has a major sinus infection which is probably the cause of her black eye.  Doctors had been worried that bruising easily could mean her liver and lymph nodes weren't clotting her blood.  Not being able to have blood clot is a big deal.  They have also checked her for a disease that sounds Chinese to me-- something like Kawasaki (like a motorcycle I'm told).  She doesn't have that, and her clotting looks normal.  So far, her problems are all workable.  The mere fact that they are not life threatening makes them seem manageable to me.  Tomorrow we'll get more blood work and either go home or stay for a few more days for more testing (liver biopsy and another kind of scope thing to take biopsies from her esophagus all the day down to her stomach).  Sounds fun, huh?
Sadie met her first ENT (ear nose and throat doctor) who tried to put a camera up Sadie's nose for a better look.  Didn't work to well.  Sadie doesn't like being poked and prodded.  And who likes other people sticking things up their nose?  Not us.
We got to paint Sadie's window.  That was fun for both of us.  Sadie directed and painted.  I painted and followed orders.  She painted a bunny rabbit, tree, sunshine and a nest of poisonous snakes.  I painted the outline of a tiger and she gave it orange stripes.
We have watched a whole lot of TV.  Bleh.  I don't watch much at home and went to the hospital library today and got some books for us to read.  The book cart also came around.  Each child can choose a new, fun book to keep.  Sadie picked out a fairy book.  She has also made hospital dolls and enjoyed milkshakes from room service.
In other news, our move went well.  The kids are loving the new yard.  There is a giant sandbox.  They are magnets to it.  Natalie and Rachel are digging a large whole.  Alyssa likes to play in the dirt with her barbie.  Trevin loves being outside.  They are all happy as can be and easily amused there.  We also have a lot of their friends wander over to visit.  It is pretty fun.  Oh, time to go, Sadie wants to paint!

Moving & Moving On...

I only have a few minutes to write.  We are moving in the morning, and I should be packing.  We are still alive and still kicking.  We have had several set backs the past few weeks but still feel like there are many good things in life.  Here is a quick up-date.
Sadie's EBV (a form of mono) levels have "skyrocketed" according to her nurse.  Her prograf levels, the medication she has to take twice a day for the rest of her life, are also bouncing around and the medical staff at Primaries isn't positive as to why she is having these problems.  She has had to go to our normal physician twice to have her lymph glands felt for nodules.  Since her immune system is weakened due to the medications, she and all transplant patients, are at risk for quickly developing nodules that can turn cancerous.  A sign of this happening is having a sore throat.  So far, she hasn't had to go back to Primaries.  Instead of having her normal once a month blood test, she will have had at least four by the end of next week.  There is also a shortage of the medication she needs to prevent the EBV infection from causing more problems.  It took three days for our pharmacy and Primaries, working together, to find any.  So frustrating!
On Tuesday, I took Trevin to the ENT doctor (ear nose and throat) with some concerns.  He gave me a four step plan to try to find out why Trevin has a rash that we can't get rid of. 1.) Try cortisone cream for 4 days  2) Try a prescription after that 3) Come back in two weeks for allergy testing 4) Take Trevin to a dermatologist to see if the rash is NF-1 related due to increased skin sensitivity.  Also, we were asked to keep a daily log of everything Trevin eats.  We had seen our regular doctors office a month ago for the same problem and used a different prescription.  I hope step 1 of this latest plan works!
Wednesday night I was setting dinner on the table when I got a phone call from the University of Utah.  I thought it was probably a bill collector as I answered the phone.  No, it was Dr. V.  I thought, "Great, they made a mistake!  Trevin doesn't have NF-1 after all.  This will be wonderful."  No, I should know that when a doctor calls, it's not to give good news.  The results of Trevin's genetic testing came back.  Besides being 1 in 3,000 children to get neurofibromatosis type one, Trevin is one of the five percent of these children who have gross gene deletions.  This means that Trevin is missing about 15 genes.  Doctors only know what one of these genes, the NF-1 gene, actually does.  Trevin is now 1 in about 17,000 kids who have a similar medical condition.  The doctor said it is one of the more "severe" forms of NF-1.  I hate the word "severe" to pertain to any child-- especially one I gave birth too!
Here are some quick facts about what this may mean for Trevin as he grows up (maybe not, but this is what other persons with NF-1 and similar gene deletions face).
* An extremely hard time in school.
* Motor delays-- he has taken a few steps, will turn two next month, and we are hoping to have him walking by summer.
* Language delays
* Many tumors.  When other kids get zits and pimples, kids with gross deletions begin to get tumors.  Some will be visible. Most will be internal.  The location of these tumors will determine the severity of Trevin's complications (in the eyes, brain, spinal cord or in his organs... lots of worry some places for them to form).
* Most of the time, these tumors are non cancerous turning the childhood and teenage years.
* Kids with gross gene deletions & NF-1 have a higher risk of developing cancer-- usually between the ages of 20-40.
Combing all of Trevin and Sadie's medical adventures, and life can become a bit overwhelming.  We have moved so many times that moving doesn't really phase me much.  It keeps us busy but it's all things medical that really get stressful for me.
Here are some great things that we have going for us.  Sadie lost her first tooth last night.  She smiles constantly and loves, loves, loves attention for her toothy grin.  Trevin blew a kiss to his Daddy this morning. I have never seen him do that before.  I am so grateful for each new thing Trevin does (except unpack the boxes-- but that's not really a new skill-- we are pros at repacking after he is done playing).  It was tender to see him blow a kiss.  Each time things get rough, we have some heaven sent blessings.  Someone will call, stop by, send a kind note, bring us dinner or a treat, send help to get us moved, or on one special occasion,  kidnap me for a night out.  We are given much needed help and support without asking for anything.  I am so grateful.  I have had my prayers answered many times by the service other people give to us.  Now,  I've also been praying to get my house packed up in time.  It's time for me to get busy so I can help Heavenly Father answer my own prayers.  We have had so much support and love given to us-- I am constantly amazed.  Thank-you to everyone who had ever helped us or prayed for our family.

By the random way, I am not proof reading this post.  I don't have time.  Please ignore any typos or incomplete sentences.  If I read this again I will start to edit, revise and re-write.  I won't finish.  I'm going to pack, so please ignore anything that doesn't make sense.   Gracious.

NF1-- What's that?

Todays post is a bit different than others.  It is about a subject very tender to the hearts of our family members.  It is about something I have not spoken of to very many people.  After debating about whether to discuss it at all I have decided to for two reasons-- education and support.
When little Trevin was born, he spent a week and a half in the hospital.  When he was one month, I noticed that he was beginning to get small marks--resembling bruises or birthmarks-- all over his body.  I felt like a vain mother for letting those marks concern me.  I mentioned them at our next doctors appointment.  From there, we began to take Trevin to see specialists.  We have seen an optomologist, neurologist, and had an MRI done for Trevin at Primarys while Sadie was in the hospital.  After waiting for months for an opening with a geneticist there, we were able to take him to an appointment this week.  The doctor confirmed that this happy, calm, book throwing little boy has a chromosome disorder called neurofibromatosis type 1, or NF1.  There is no cure.  However, there is always hope for a cure!
We've known for quite a while now that he may have NF1.  I woke up at two in the morning and began to compare and contrast the similarities and differences between  Sadie's illness and Trevin's.  Hers as sudden as a bolt of lightening striking us.  Trev's was gradual.  I have spent many hours crying for both of these children and the unknown future.
I can't help but feel Heavenly Father is watching over our family.  The geneticist we were assigned to just happens to specialize in NF1.  I had wanted to go to Primarys for medical care, hoping to see a doctor who had worked with other children who have this condition.  Zing!  He actually wrote the book on it.  Literally.  He is co-chair for the Childrens Tumor Foundation (ctf.org).  They are dedicated to research for NF1 and hope for a cure.  I do not know if it would be possible to find anyone, anywhere who knows more about it than him.  He is the genetics teacher at the University of Utah for the medical students majoring in genetics.  Very smart and very kind.  He spent at least 40 minutes talking with David and myself about NF1 and what it means for Trevin.  We are in good hands.
Another way I feel we are going to be okay is based upon a comment made by Dr. V.  (I can't pronounce his name.)  He said the best thing parents can do for children with NF1 is to get them in to early intervention programs.  Many years ago, I made the decision (after much fasting and prayers) to change my major to early childhood special education and severe special education.  Poor little Trev, he has a built in developmental therapist for a mom.  He may never get a break.  I already have his sisters starting to sing to him more to help his speech development.  Oh, and talk about a getting a double whammy, kids with NF1 are often uncoordinated.  Poor kid, with me as a mom he was already bound to be a bit clumsy.  (Don't think I'm making this up, my sister said the exact same thing when I was talking with her about what to expect for Trevin.)  Good thing his dad has some athletic skills.
So... that's been our week.  I am grateful to finally have an official diagnosis.  I can stop fretting about the unknown and do something about it.  The doctor calmed many of my fears.  Let me add my own two bits for anyone thinking of doing a random web search for any type of medical condition: don't do it!!!  The information that is easy to find is usually not accurate and worst case scenarios   Get a doctor to give you a website with accurate, reliable information.  You'll save yourself a lot of grief.
... and now for the Sadie update.  She doesn't have to go back to Primarys for three months-- hooray!!!  This is a new record for us.  We are excited.  She has had a lot of stomach pain this past month but seems to be doing much better.  Her doctors have been great at giving us ideas to help her.  She is very hip and stylish.  Most kids can't pull off the Snow Suit to School look, but she graces those outdoor bibs each and every day, all day.  Apparently, it's a pain to have to take her boots off to put the suit on at recess.  Plus, then you miss valuable play time.  She wears it all day.  Whatever.
Natalie, Rachel and Alyssa are all alive.  They just don't have mysterious illnesses to write about.  Let's see, nope, they are healthy and normal as can be.  (Yea!)  Natalie is turning into a teenager.  Rachel asks lots of questions and may be a scientist in the making.  Alyssa makes us laugh.
And one last thing.  I finally did something that has been hard for me.  I finally sent a letter to Sadie's liver donor's family.  I have written that letter over and over this past year.  I couldn't mail it.  How do you thank someone for saving your child's life when you know that it came as another person lost theirs?  I have had an internal battle brewing for months now.  I feel relieved to have it sent.  Thanks to my Aunt Karen for making beautiful crocheted angels for their family.
We have been given an overwhelming amount of support from countless people this year.  I still meet people who tell me they know about our family from the fundraising auction last year.  Thank you to everyone who has helped us and prayed for us.  We are deeply grateful.
Now, if any of you good readers have actually made it to the end of this long post, congratulations!  If any of you have questions for us about NF1, please don't ask.  We don't know!  We are still learning ourselves.  The website ctf.org is an excellent source for information.  In twenty years, I will happily answer questions.  As for now, I am in research mode.  We are in good hands medically, and I know where to go for help.  We would be interested in connecting with other families who have a member with this disorder, but other than that, I am hoping to not be bombarded with suggestions.  (Not that anyone would, because, who has even heard of neurofibromatosis?  Not me before this all began.)
And hey, watch for us to be on the news as future lotto winners.  Although we haven't played before, the odds are definitely in our favor.  The odds of having a healthy child need a liver transplant?  One in millions.  The odds of having a child born with NF1?  One in three thousand.  We have a much better chance of winning the lottery than most people.  Future millionaires for sure.

Make A Wish-- Dreams Come True

So many things have happened lately... we made it to the one year anniversary of Sadie's liver transplant.  One year ago we didn't know how we'd make it through each day.  We have survived!  With the anticipation of Christmas and Sadie's wish trip, a change came over our girls.  The girls began to dream again.  The began to hope again.  They became kids again.  It has been wonderful to see them let go of so much hurt and pain.






Shortly before Christmas, one of our Make A Wish volunteers, Becca, stopped by our house with a trip itinerary and a gift for each child.  Who knew that there is a Make A Wish barbie?  The girls were thrilled.  Christmas came.  (One year ago on Christmas we were all healthy and had no clue how quickly or drastically our lives were about to change.)  Then came our final check up at Primaries.  Sadie's doctor approved her trip.  Mid January, we left on our adventure (you know, the day after it was 20 below zero at our house).



Sadie's wish?  To be a photographer at Disney World in Florida.  David and I felt so much apprehension before going.  Trevin has been battling ear infections, our girls have been disappointed so many times this past year, we wondered what would go wrong to prevent us from leaving.  In the end, I don't know that David and I really believed we would get to go until the morning we drove away.  Sadly, we did leave Trevin.  Happily,  he stayed with Grandma LaNae and was pretty happy to not be traveling.
Our trip began with a drive to Logan, Utah to drop off a car at Uncle Ethan's shop (Elite Auto).  We ate lunch with Grandma Susan, and then took off for Salt Lake.  We attempted to get a good night sleep before getting everyone up at three to hurry to the airport.  David and I were so worried about missing the alarm that I think we were both up most of the night.

On the plane, Sadie and Alyssa were invited to come meet the pilots before out flight.  As the wheels lifted off the ground, a little five year old voice yelled, "Wahoo!"  The passengers burst out laughing at Alyssa's antics.  Both Sadie and Alyssa made announcements over the intercom.  Sadie said, "Ladies and gentlemen, please remain seated for the duration of the flight."  The passengers clapped for her. Alyssa got to  say, "Welcome to Denver."  Between flights, Natalie and Rachel were able to meet the pilots and pose as captains.  The next flight crew also let us meet the captain.  We were given royal treatment.

Rachel took this fun picture as we were flying into Orlando.

Next, we drove to what could be the best place on earth, and where wishes really do come true.  Give Kids The World is a village resort just for Make A Wish families.  Each family there has a child with a terminal or life threatening illness.  The village has a staff, but is mainly ran by volunteers.  Over 1500 individuals come weekly to serve.  We met persons from Kansas, Ohio, New Jersey, and more. The youngest volunteers were about 10 and one man told us he is 87 and serves breakfast each week.  They were so kind to us.  Again, we were treated like royalty for the duration of our visit.  Each night there is a party for the kids.  The resort has a carousel, castle with a wishing well, train, miniature golf, Candy Land Playground (just like the game), splash park and swimming pool.  January is Give Kids the World's slowest time of year.  It felt like we had the place to ourselves.  Wonderful!

Alyssa's favorite movie of all time?  Any of the Chipmunk flicks.

Singing Sensations! The dazzling duo sang and danced to "Love Song" in front of a live audience on our first night at Give Kids The World.

Princess Rachel at the La Ti Da Salon at Give Kids The World.

Natalie and "Little Miss Hollywood" as people around the resort called  Alyssa.  The tree behind them has a face and snores.  Alyssa yelled at it to "wake up and talk to me" each time we passed it.

The Wizarding World of Harry Potter at Universal Studios.  Natalie's all time favorite books come to life!

Christmas comes once each week at Give Kids the World along with a winter carnival with characters from the game Candy Land.

Surprise!  Sadie's wish was to be a Disney photographer.  We met three official park  photographers who taught her to take pictures of her models (the rest of our family).  Guess who showed up just to meet Sadie?  Mickey Mouse!

Mickey gave Sadie an official award that names her a professional Disney Land photographer.

V.I.P. access to the rose garden in front of Cinderella's castle with our photographers.  Sadie felt so special!

Waiting in the rain for lunch in Belle & Beast's Castle.  (Please note the bunny ears-- they are in a good portion of all pictures taken.)

Natalie picking her friend's nose at the castle.

The girls each rode a horse for the first time at Give Kids the World.  (Yes, I know that is a bit pathetic since they have spent their lives living in Idaho and Utah.)  They loved it and each got a snazzy hat to take home.  Alyssa informed me that the hats are really stinky, but that I shouldn't tell dad.  Hope he doesn't read this.  I'll have to smell them tonight to check it out.

Rachel mouse with the blue Make A Wish buttons we wore everywhere.

Alyssa was too little for many rides so we amused her by taking pictures around the parks.  This one is to scare her friend Eli with.  Roar!

Each wish child is given a magical star to decorate.  Stella the star fairy then hangs it in the Castle of Dreams at Give Kids the World.  It will always hang there.  We can go look at Sadie's star 100 years from now.

Miss Merry came to tuck us in-- it was the gigglingest bedtime I have ever heard.  This had to be a highlight of the trip for the girls.  Laughter filled their room.

The magical pillow tree at the Castle of Dreams.  Each girl got a pillow to help their dreams come true.

Ice cream... all day long, everyday.  We LOVE Give Kids the World!

Sadie in front of the swimming pool/splash park at Give Kids the World.

Getting home we swarmed Trevin with lots of love!  Thanks for watching him Grandma.  We sure love this boy.

In conclusion, this week has been an amazing, emotionally healing time for our family.  I realized in the middle of the week that I hadn't worried for days.  I forgot to stew about doctors appointments, blood tests, and the additional stress that comes with have a child with medical needs.  As we swam in the pool, I asked Sadie how she liked her wish trip.  She said, "I feel like a normal kid again."  What a blessing.
Our family hopes to be able to volunteer at Give Kids the World when our kids are older.  Thank you to everyone who made this trip possible.  You will never know how emotionally healing it has been for our family to have something positive to look forward too.  We are grateful.

Make A Wish of Idaho's website: http://www.idaho.wish.org/

Give Kids the World website: http://www.gktw.org/about/

Fabulously Famous-- See Our Little Movie Stars

Sadie's Make-A-Wish Story on KPVI Channel 6 News  (news story and video link)

http://www.clipsyndicate.com/video/playlist/16611/3868637  (just video link)

The link above will take you to a news story on Sadie and her wish.  She wants to meet and take pictures of all the princesses at Disney World.  She is also a huge fan of Jake and the Never Land Pirates (a spin off of Peter Pan).  I wanted to post the video on here but will admit that I'm not sure how to do it.

This year has been so hard on everyone.  Natalie and Rachel really want to go to see the Harry Potter area at Universal Studios.  Alyssa jumps up and down cheering when she thinks of seeing the princesses in their fancy dresses.  I love seeing them each have something to look forward to after a year of disappointment, pain and fears.  The best thing about Make-A-Wish?  For me, it's about allowing the entire family to have hope that something good can happen again.

Sadie is now officially seven years old.  We celebrated by eating Chinese food (which she loves) and stayed home.  We had quite a bit of trouble with her birthday cake.  She asked for an angel food cake.  I made an angel food cake.  The following is a brief description of what occurred when she got home from school and saw it.  Please read it very dramatically.

"I told you to make angel food cake!"

Me: "I did."

Sadie: "No, you didn't."

Me: "Yes, look, I even used the round pan."

Sadie: "That's not angel food cake!"

Me: "Yes it is." 

Her (yelling): "You don't even know how to make angel food cake.  You don't know what you're doing. You don't even know how to make it right."

Me: I got the box out of the garbage and had her read the name of the cake I made-- an angel food cake.  

Her face about crumbled and she teared up.  We then figured out that she had really wanted a rainbow chip cake that was cooked in a bunt cake pan.  Later, we made her the other cake.  Her sisters were quite excited to have two cakes to choose between, and we were able to laugh about the misunderstanding.  For a little girl who has made us wonder if she'd even get a seventh birthday, making another cake didn't seem like that big of a deal.  

I've been thinking tonight about how Sadie will get her Make-A-Wish and how much it has helped each of us get through the past year.  On our hard days, we always tell the kids that we just have to get through this first year and there will be something wonderful for us.  Watching the news about the school shootings in Connecticut has made me sad.  So many families had their dreams and innocence stolen today.  Our family's hearts and prayers go out to all the individuals and families hurt by this violence.

Thanks to KPVI, reporter Sasha Zimmerman, the Make-A-Wish team, and to everyone who has helped our family find hope this year.

Channel 6 News

Sasha Zimmerman from KPVI channel 6 news just came and interviewed our family for Sadie's Make-A-Wish.  It will be on TV tomorrow night (Thursday, Dec 13) at 10 p.m.  It will also be available via internet at kpvi.com.  Sasha was very friendly and nice.  The girls had so much fun!  They are excited to be famous movie stars!!!

'Tis the Season for Cub Scouts

Today our family spent much of the day at Primary Childrens Medical Center.  Sadie had her blood work done there at 7:30 in the morning.  Later, she had an ultra sound to check her arteries and her regular check-up.  We were able to visit with old friends at the hospital and make some new ones.  We are very grateful for the kindness we have been shown this past year.

Before we left, Natalie and Rachel helped David haul in 40 bright and colorful fleece blankets.  Local cub scouts planned the activity for pack meeting in November.  The material was donated; many families came to help with the project.  We were able to join with them to help tie the blankets.  We had fun visiting, laughing, and being a part of this positive activity.  Thanks to the scouts, their families, leaders and all who helped.  This was fun for us!  The girls were beaming as they carried the blankets in the hospital.

Totally Awesome!

... And now for an awesome announcement.  After a crazy mixed up year, Sadie will celebrate her 7th birthday this month!  We are so excited that she is still here with us and that we'll be able to celebrate with her here.  I saw a doctor today who was able to open her arteries back up in September and felt such gratitude.  We are grateful to the family, somewhere, who offered Sadie's new liver to her.  Thank you.

Princess Alyssa

Gross update-- the queasy probably shouldn't read this

Okay, confession time... this is the true story of our lives.  I sometimes write blog updates but don't post them.  I don't want to sound whiny, grumpy or ungrateful for so much good in our lives.  It just seems like the past many months our family has been tossed from one tornado into another repeatedly.  We finally finished Sadie's twice daily injections.  She is no longer having nightmares about me hurting her when I have to give her pokes, and I no longer have bad dreams about giving her the shots.  Alyssa doesn't run and hide in her bedroom like she did when Sadie screamed from her fear of needles.  It was an unpleasant time for our entire family, and as of Halloween, it is over!
The first Friday in November, Natalie came home from school with an awful headache.  That night, she, Rachel and their dad went to Utah to visit their cousins and pick up our van from Uncle Ethan's shop (Elite Auto in Logan).  They came home the next day and Natalie still didn't feel good.  By Sunday both she and Rachel felt sick, but with very different symptoms.  To make a long story short, for the past week and a half our family has had strep throat, the stomach flu, ear infections and eye infections.  Pick a person, pick between one to three of those illnesses, and you will be able to imagine how much fun we have had!  Oh, and to our cousins, I apologize if we got any of you sick.*
When Sadie hadn't been sick after over a week of illness, I thought we had lucked out.  Unfortunately, she came home sick from school Monday.**   We spent a lot of time on the phone with the hospital throughout the night.  Our nurse advised me to give her an ounce of liquid every half hour to keep her hydrated.  Sadie couldn't keep it down.  We were worried about her getting dehydrated, keeping her medicine down and having her artery close off again.  She threw up every single hour until the hour I had to give her her pills and liquids.  For two hours nothing came up.  That was a huge blessing and answer to prayers.  It kept us out of the hospital that night.  She quit throwing up by ten and I couldn't handle getting up every half hour.  So, I set the alarm and got up every 45 minutes throughout the night to give her a drink.  In the morning, we were able to keep her meds down and get her to drink enough that she didn't have to go to the hospital.  (Which is good since I was too tired to drive and David was also sick at this point in time.)
So Tuesday afternoon, I am obviously exhausted.  Natalie got home from school while I was talking with our nurse at Primarys.  I hear Natalie say, "Uh, Mom, can I talk to you?"
"Ya, just a minute."  I keep talking on the phone with our nurse.
"Uh, Mom, can you come here?" The nurse and I end our conversation and I walk to the door and look where she is pointing.  "What is that?"  I look again.  Someone stepped in doggy poo and unknowingly walked through the house with her shoes on.***
I begin to clean up the mess and hear Natalie say, "Uh, Mom, can you come here?"
"Natalie, I'm cleaning up dog poop."
Again, "Uh, Mom, can you come in here?"  I walk into the kitchen to discover that a glass magnet has fallen off of the fridge and shattered.  I invite Natalie to clean it up as Trevin tries scooting into the kitchen.  She is put on baby duty and I clean.
A couple of hours later Rachel is doing homework and I hear, "Uh, Mom, there's a problem."  She had dropped a nail on the kitchen floor and couldn't find it.****  We found it, but I informed the girls that if I heard, "Uh, Mom," one more time, I was not going to listen.
That was our day.  I hope that comes across as amusing and not whiny.  It wasn't funny then but makes me smile now.
And that's our life.  Tonight, Sadie is feeling much, much better.  Things should improve starting tomorrow as nearly everyone is healthy again.  It should be a day without doctors appointments, shots or puking kids. Last night I was feeling frustrated and started to think of how many people have helped us these past 11 months and how much service we've received.  Remembering helped me change my attitude.  I am grateful for the love we have been given.

____________________________________________________

Thanks for the continuous prayers and help offered to our family.  I am often asked how people can help us.  Other than offering psychiatric services, I'm not sure.  I've also been asked if we will take donations down to Primarys.  Yes!  We take Sadie down monthly.  New donated blankets, toys, crafts, etc. are always used and loved.  The toys are used as prizes for hospital bingo, when a child does something scary (get an IV or surgery possibly), used for the kids to play with in their rooms or the play area.  Crafts can be done in the children's rooms or in the play room.  Blankets are placed in their rooms to cheer them up.  A child can take the blanket home when he or she leaves or it can be washed and used again.  Any of these things helps make the hospital visit a little better and more cheerful.
When Trevin was born and a guest in the Madison Memorial NICU, people also donated cute receiving blankets, burp cloths and baby clothes.  One nurse and her son tye dye onsies for the babies to wear while in the hospital.  It cheered me up so much to see that tiny sick little boy in something bright and fun.  If anyone wants us to take something to Primary Childrens Medical Center, let us know.*****  Many hospitals have donation web pages that tell what they need.  The items are comforting and greatly appreciated.  The Ronald McDonald House also takes donations.


*David and I refer to it as "Curse of the Cousins."  Typically it occurs at all family reunions or holidays on both sides of the family.  One child gets sick and eventually every family has someone who gets ill.

** Sorry to those other kids and folks at her school.  We really hope that she didn't make any of you sick.  She seemed healthy leaving in the morning.

*** We don't have a dog.

****The nail had absolutely nothing to do with her school work.

***** loveforsadien@gmail.com  OR  daveandkim99@gmail.com

Home Sweet Home

The NewMyer family is reunited once again! (This is Kim's sister, Camille.) Kim & Sadie were able to drive home to Idaho late this evening after a long wait at Primary Children's today. They are so happy to be going home. The biggest change after this go-round at the hospital will be new medications. After practicing on oranges, nurses, and even one of Sadie's doctors; Kim will now be giving Sadie a shot twice a day. Wish them both luck. It is not fun for either! We are so excited that Sadie is doing better. Kim's computer cord was lost in Utah. For now, she won't be able to update the blog, but will be able to view it. Thanks for all of the continued support!

The Fourth Floor Terror

Okay... confession time, between switching hospital rooms, I am not sure where I have packed the cord to charge the computer.  Meaning that I'd better find it or blog posts will once again be few and far between.  :)  Sadie moved out of the PICU yesterday and into a sunshiny yellow room on the fourth floor.  It has a view overlooking Salt Lake City.  At night the city lights sparkle like glitter, and she loves glitter!
We are still waiting for her blood levels to normalize and for physicians to be able to determine what medications she can safely take.  I am very grateful for a doctor who stayed late, hours after his shift ended last week to work on clearing her clots.  He told me today that the main artery going into her liver was 99% blocked and that he hadn't thought the procedure would work.  Prayer is the only reason I can think of that he was able to restore her blood flow.  He saved her liver and possibly her life.  Many, many people here at the hospital have shown the same love and care for her.  I am so grateful!
Tomorrow I start training on giving shots to oranges and nurses.  Each day for several weeks, I will be giving Sadie shots morning and night.  I have never envied nurses and have often thought they are crazy to practice giving each other shots while in school.  Now, I guess, I'm grateful.  This morning, Sadie said that she thought it would help her if she saw someone else get the shot before she had one.  Call me Mrs. Victim.  She almost smirked as she helped the nurse give me a poke.  I will admit to having quite a bit of anxiety and that it pinched a bit.  Sadie was furious and called the nurse and I liars for saying that it wouldn't hurt bad when she got hers.  I think it was a good lesson for me to remember how stressful shots, medicine and hospitals can be.
The highlight of the day was little Sadie terrorizing the fourth floor immunocompromised unit by riding a bike through the halls continuously for about twenty minutes.  A volunteer began teasing her and the next thing I knew, they were playing golf down the halls.  Loudly.  Doors opened, parents peeked their heads out.  Nurses laughed, and a few got hit by the balls.  Sadie giggled and shouted.  It was music to my ears.

Needles and Tests and Meds, Oh My!

We spent the day in the PICU (Pediatric Intensive Care Unit) once again.  Today was much calmer.  Sadie was done with her ultra sounds and most doctor exams before noon.  She was even able to nap.  The doctors said that her hepatic arteries are still 99% open.  There is still concern about the artery between her liver and spleen but no plans as of yet to do anything about it.  They are observing her and carefully studying medications to determine what combinations they can safely use with her.  Unfortunately, when we get home, she will be on many meds again.  We are sad that one of them most likely will need to be given twice a day via syringe.  She is terrified of needles.
So, overall, it was an okay day as hospital days go. Mix some good, a little bad, toss in some waiting time, and at the end, I think Sadie ended the day as good as she started it. (In the our hospital experience, that's fabulous.)  We should get to move out of ICU tomorrow.  When Sadie first got sick back in January, we met a man who gave us some advice that sounds wonderful.  "Get your problems over with early in life so that you can sit back and enjoy the rest of it."  Doesn't that sound nice?
I saw two sister walking through the cafeteria today.  They were holding little hospital dolls and giggling.  I was instantly homesick for our kids in Idaho.  I am missing them!