Happenings at Home

The funny things that happen at home...I love it when the kids are creative and come up with their own games and projects.  This time Natalie came up with her own dance.  She thought she was so funny.  When she showed me the video I laughed plenty.  This can be viewed two different ways...either she is just silly or she is bored and needs to be back in school surrounded by peers.  I think both might be right. :) 

Later Alice joined in, then when Blair came home from school he joined them...it was a ball!  By the time Matthew got home the rest of them were too tired to make more dancing videos.

Natalie has been doing awesome with her homework.  The goal is to have her caught up with the rest of the class by the time the doctors allow her to return to school.  Her teacher Mrs. Nelson who comes to the house three days a week is wonderful and Natalie enjoys the time together.

Tyler and I have been tag teaming the rest of her homework as well as the boys' homework, usually we get this done before the boys go to school in the morning.  We seem to fight over that job, because the other job is keeping the two little girls out of the way...which means all the stinky diapers that come with it.  Morning seems to be the schedule for stinkers; which in Alice's situation, she has more stinkers than one.  Maybe this is more information than desired.  However, if we are willing to play dolls and princesses they are as happy as can be.

Lisy

Mattewlina and Jacksonlina...This is what I found when I came down stairs.  They ran around laughing, thinking they were the funniest kids around.  The princess dresses didn't stay on long, they tired of them quickly...a little snug.

Matthew and his friend Jackson...it's true, they had much more fun being Knights...it's all about fighting and swords.

Mean Knights

Who's Who?

Blair and his friend Tayler.

Alice and Evie all bundled up for a long bike ride with Dad.  They had a great time and I had an even greater time.  I was able to get many things done while my two shadows were absent.

Natalie wanted me to see her elephants:  All in a row!

A nice bonk at recess is good for your character.

Evie loves white powdered donuts from Grandpa.

Biopsy For Alice

Today Alice had a bone marrow biopsy.  The procedure was done in the RTU (rapid treatment unit).  We love the RTU.  It's much faster and simpler than same day surgery.  Anyone who has been to Primary Children's same day surgery knows the fairly lengthy process involved in a procedure at same day.

The nurse practitioner took a small piece of the bone, inner bone fluid and some marrow to be tested.  Her little back is a bit sore, but nothing compared to the past two biopsy's that she has had.  Everything went well and smooth...until it was time to wake from the anesthesia.  She didn't want to wake up.  Being the faster unit...the patients are in and out.  She wanted to sleep longer and be left alone.  I don't blame her.  I felt bad about that.  She did manage to get an awesome nap during the one hour ride home.  When I pulled up to the house I was equally as exhausted.  I just parked the car in the driveway...turned it off and the two of us had the best peace and quit ever.  I will say that some of my favorite naps are in the car. 

The kind of naps when you don't have the energy to unload the car and face what's awaiting behind the door the moment you enter. ;)

We made it home long before we would have--had it been our routine clinic appointment.  It was nice.

I'm trying to keep my phone on me all day in the event that the doctor calls with some results.  No news so far.

While fasting before the procedure Alice told me that her tummy was talking to her and said it needs a ham sandwich.

Lisy

We played bubbles, hide n seek, and Cinderella to help pass time while Alice's tummy was hungry.

Leg Doctor

Alice visited the orthopedic doctor today.  The x-ray indicated that it is healing nicely.  She is able to have her boot off for an hour or so in the evening...and does not need to sleep with it.  She is going to be very happy.  It will be a challenge to get her to wear the boot after enjoying the freedom of having it off. 

Two and a half weeks left in the boot and she is done.  This will make almost ten weeks total for her leg's recovery.

While talking with the doctor Alice explained to the doctor that her leg 'just broke right in half'.  She likes to be involved in the conversations with the doctors.

Thankfully this visit was snappy.  Our fastest orthopedic visit yet.

Lisy

All ready to go see the leg doctor.

Happy Birthday Natalie--Evie Has Parvo Virus

Natalie turned 9 today on the 9th.  She was skipping around all day anxious for the evening to come and celebrate with pumpkin pie and family.

It was a great day.  I asked her what she wanted for dinner, she said "Green Soup"...asparagus soup.  I figured she would say that.  It's one of her favorites.  Instead of cake she requested pumpkin pie.  I can't remember the last time we didn't have a pumpkin pie for her birthday cake.

Our friend Jessie came for the day and played with the kids and helped me prepare a nice birthday meal.  

Yesterday we noticed a rash on Evie's legs, arm and cheek.  I wanted to have it examined so I took her to the doctor.  The doctor is certain she has Fifth's Disease...Parvo Virus.  I have only terrible memories of this virus.  This same virus put Natalie on her death bed several years ago.  It dropped her hemoglobin to 2.8.  She was in the PICU waiting for blood.  Two people worked non-stop for eight hours to match her blood...still it was released as a non-match but as close as it could be with the urgency of her need.

Evie has been feeling terrible, yet she manages.  It seems strange to have such a virus and just go along as normal.  We are holding little Evie more and giving her plenty of fluid.  She doesn't want to eat much.  It's a wonderful thing that her immune system is managing.  Something we will never take for granite.  We are not sure what to think regarding Natalie and Alice.  We hope this bug doesn't amount to much.    

Lisy

Cousin Kennidee made Natalie a darling elephant picture.

The excitement of glass.

Showing Alice the snow through the window.

The dinner Natalie requested. 

Happy Birthday to Natalie!

What's new on Natalie...clip-ons!  She asked for earrings that don't have a needle.

A giant Jerome!

First snowfall of the year on Natalie's birthday.  She, Matthew and Blair had a great time.  They built a snowman.  Before I could take a picture of it...they knocked it down.

Catch Up

The last two posts are back dated.  Time goes too fast, before I know it I'm a few days behind.

Rehab Visit for Natalie

Natalie visited the Rehab center in American Fork today.  The therapist did well helping Natalie feel comfortable.  Natalie didn't want to go, once she began the session she warmed up.  It was interesting to see how they test the cognitive processes of the brain.

The therapist was very good.  I felt good about the visit.  He confirmed that the injuries on her brain are indeed affecting the way she is able to process information.  He was able to explain the many things Tyler and I have not been able to put our finger on, even describe to another.  He gave us specifics.  The therapist is hopeful that he can teach us the tools necessary to help her brain compensate and bridge the gap that exists.  This will make a huge difference in Natalie's future.

I am anxious to get to work.

I will explain more details later, as we learn more.  It's fascinating to me.

Tyler and I are trying to be careful that we don't provide a crutch for Natalie.  As long as she works hard and views herself no different than another we can be successful.  We try not to give her excuses as to why it's harder for her to understand things.  We reassure her of her strengths and remind her that she is capable of great things, and that it's important to work hard and never give up.  We have hard days...this is inevitable.      She came to me a couple days ago in tears, after working on some homework.  She said, "why don't I get it...I can't understand."

At first I wanted to tell her that she had experienced severe seizures and therefore her mind isn't able to process information as easily as it normally would.  I wanted to take away her heartache and make it all better.  I caught myself before speaking...I immediately sat down with her and told her about the life of a Caterpillar.  She knows how Caterpillars become beautiful butterflies, however, she didn't know how they have to endure immense pain and pressure before they can be beautiful. If they skip this vital step they cannot fly and will never see the beautiful earth from another perspective.

I'm not sure how much sunk in or was understood, however, she seemed satisfied.  There will be many more  similar conversations to come, I'm sure of it.

I am reminded of how thankful I am for hard things, despite how tricky it can be sometimes to recognize.  I would be very sad if I arrived into the life hereafter and felt I didn't get to experience the fullness of victory, accomplishment, and growth .  I know Natalie has endured far more than most can imagine...she must have a great reward in store and a triumph to cherish. 

Lisy

Alice's Counts Still Down

Alice had clinic today.  I left at 9:00 a.m. and didn't arrive home until 6:30 p.m.  It was a long day.  Thankfully Natalie didn't have to endure the long day with us.  Alice did well, I was proud of her.  She asked several times before we arrived if she needed a shot.  I reassured her that she did not.  I believed what I said to her, but I was wrong.  She needed more Nulasta.  She was unhappy to discover that she indeed needed a shot.  Her ANC was only 300.  The doctors are becoming more uneasy with her counts.

They are still baffled that she has not been more sick with her consistently low counts.  We are incredibly thankful for the many prayers in behalf our our girls.  Alice is doing great, you would never know her counts are so low.

The team of doctors are discussing repeating more Rituximab on Alice.  This will take some time for Tyler and I to digest.  Each decision is a challenge.  There are many decisions to make along the way.  We want to do the right thing.  Alice has given the doctors many reasons to scratch their heads.

Unfortunately Alice will need another bone marrow biopsy in order for the doctors to have some physical evidence of what her marrow is doing.  In the past (pre-transplant), the two biopsy's in which she had were partly helpful.  We hope this time around it will be even more helpful.  Antibodies are not visible under a microscope...otherwise Alice's puzzling situation would be less puzzling.  I continue to wonder if her original antibodies are causing trouble still.  The new marrow/antibodies shouldn't be the problem.   Surely, we hope to reveal the culprit.

Biopsy is planned for next week.

Also in clinic today Alice received a three hour infusion of Pamidronate, a medication to help strengthen her bones (the ability to absorb calcium).

While in clinic for several hours I managed to be productive.  I met with the physiologist, whom we are working with through this bone marrow process.  Tyler and I have many concerns regarding Natalie's cognitive abilities over the past three years...since Swine Flu.  Paul the physiologist obtained a referral from the doctor, called the rehabilitation center and had it all lined up before we left the clinic.  I knew I ran into him for a reason.  It was great.  Tyler and I feel good knowing that we can get Natalie the help she needs, while her brain is recovering from neuro trama.

Tyler had the children at home busy doing homework when I arrived.  They all seemed happy to see Alice and I.  I'm so thankful for Tyler, he is a great Dad.

Lisy

Alice was so excited to order a ham sandwich for lunch...her favorite.  Just ham and mayo/mustard--nothing else.  It never gets old.

We had a lot of time to play...fifth round of hide n' seek.  She was sneaky and hid behind the IV pole.  This was a nice break from the puzzle we had accomplished six times.

Halloween

We had a wonderful/healthy Halloween.  The older three kids didn't miss a house in our neighborhood.  They may have covered the block a few times.  Natalie was determined to get the most candy...she did, almost triple.  I suppose because they used scooters and bikes they had an advantage.

The past week has been nice as we haven't had a clinic visit.  More often than not we are feeling more normal...I guess normal is relative.  It has been a few weeks or more since our last hospital stay.  We aren't sure how to feel.   When do we put our guards down and take in that big sigh of relief?  We know it's yet to come and some time away, however, we also feel much closer to where we hope to be.  Of course, we will always need to be cautious...forever, but within the next several months we might just live a fairly normal life: 
And at what point are we speaking too soon?  Hmmm....well, you can never be excited too soon. :)

Tyler and I were talking the other day regarding this subject...we have so many feelings attached to our current situation.  Some feelings are strong one way and others are mixed in the middle.  We look forward to jumping into "normal" life with both feet, although deep inside we know we will miss this time more than any.  The amount of time we have spent together truly is unique, and definitely has been most healing for everyone.
One might think after being with someone constantly, you would tire of them...the contrary is true.  Surely when life pulls each of us in many different directions, it requires more effort to stay connected.

Natalie is incredibly anxious to return to school, however, when she does, she may miss home more than she anticipates.

Lisy

Mario and Luigi

A real live porcupine

Her hair is the perfect length for spiking

Alice's dream came true...she became a Care Bear, just so happened that our neighbor had a Care Bear costume.

Silly Evie

Dad working hard to have Blair's Mario pumpkin finished by Halloween night

Trick or Treating in the neighborhood

Dad and the Ladybug handing out candy...if you look real close Tyler has Natalie's iPod on his lap.  He was checking up on what is going to become of this presidential election between trick or treaters

Blair asked for a Mario pumpkin--it turned out great

Matthew carved his own pumpkin this year, Jack--he used a stencil--looks awesome Matthew

The after Halloween candy assessment--so fun to sort through

Evie was fascinated with the candles inside

One proud boy

Tyler's pumpkin...need I specify?  Tyler asked that I explain this in one word--HELLO.

Lionel and Jack...buddies

The other day Tyler sent all the kids to clean their rooms.  I later made inspections and this is what I found in Alice's room.  Life in a boot!

Catch Up

The last three posts (which I did today) are back dated for my records.  I have been slacking.  As long as I have the main things recorded...I'm happy.

Sunday--Home With the Girls

Tyler took Matthew and Blair to church with him today, while I stayed with the girls.  We had a good time playing and eating.  Evie was in heaven to have much of my time as I just played with her.  Natalie was a little sad she could not go to church.  We played UNO, Flippin Frogs, Blocks, played in boxes and baskets, and read from The Friend Magazine (Natalie's favorite).  It was fun...until I turned on the church music (Mormon Tabernacle Choir singing Primary Songs).  Natalie bursts into tears and said, "I want to go to church!"  She misses that feeling of church.  It's true there is a special feeling at church.  I know she feels it at home as we read scriptures, sing primary songs, etc.--but you really can't replace being in church.

I tried to console her, she said, "Mom I wish the doctors would let me go, can you ask them again?" 

Who knows...maybe it will be sooner than we think. 

Usually kids don't want to go to church because it's too long and boring.  I remember thinking this when I was little.  Maybe the trick is to tell them they can't go...then they will want to go ;)  Isn't that how everything works. 

MAYBE...we are closer than we think we are.  I hate to speak too soon, however, it's been almost a week since the girls' flu shots.  So far, no hospital stays, and no fevers.  I know for a fact, had they had a flu shot with their original immune systems it would have been disastrous.  Tyler mentioned that he wrote in his journal that possibly this is the first moment of evidence that things are working the way they should in a healthy immune system.  I said to him, if this be so, then it is a reason to rejoice.  I pray that our feelings are true and continuous.

Natalie was able to have her friend Grace over for a late night recently and they had a great time.  It was awesome to see Natalie interact like everyone else.  Of course Grace and Natalie are two peas in a pod, and entertaining each other is effortless.  I need to say for journal purposes that Grace has been a HUGE blessing for Natalie.  She totally understands and relates to Natalie.  They act like sisters...it's so cute.

No clinic tomorrow...we are carving pumpkins.  Tyler's favorite thing to do with the kids...and sometimes without them ;)  I have no idea what he has up his sleeve this year.  I'm sure it will look great.

Lisy
 

Our favorite toy...A Box.  These two can't hear music and not put on a tutu.  They dance to everything.  I'm so glad we have plenty of princess things and tutus.

I asked Natalie to watch Evie while I took a shower.  This is what I found.  

She had to find a basket somewhere...which means whatever is inside is now on the floor.  It was worth the shower.  It doesn't matter anyway...all things are dumped out.  My least favorite is when they tip over a garbage can for a stool and it doesn't matter whether it was full or not.  Some things we will only miss when we our children are grown and gone.

Natalie requested her favorite dinner...baked chicken legs.  Evie loves them too...and doesn't like help eating them.