The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Monday, December 31, 2012

The Reality of It All

Interestingly I have started this post several times...it began months ago and continues to linger on my mind.  I want it on my blog, because someday perhaps my children will read this.  I want them to know the reality and the truth about how it (this medical journey) all happened.  I also want to share it publicly because Tyler and I feel like it is important for everyone reading to know and understand The Reality!

Tyler and I are your average basic people, there is nothing spectacular about us.  We make mistakes every day.  Some days are considered good and successful, other days are discouraging and difficult.  What we have been through over the past several years has been anything but average.  We tread a difficult road.  There are many people who have rough roads to travel.  Not one person travels with smooth paved roads of gold....ours just happens to be like those in Radiator Springs. ;)  that was for my boys...they love Cars.

The good news is that we don't feel like our road is less desirable than another.  We are happy to be where we are.  What we do is specific to us and we feel blessed and honored.


I want to share some of the reasons why we feel so blessed and honored as I answer the question we tend to be asked most often...that of---"How do you guys do it?"

First of all, we feel an enormous amount of trust in God.  We know that he does not make mistakes.  We feel so blessed to have the children we have.  It is not chance that Natalie and Alice came to this earth with a  malady.  Tyler is 1 in 40,000 and I am 1 in 40,000.  The odds of us finding each other are phenomenal.  It happened and we have never regretted it since.  The blessings that have come to our family through our health struggles have provided us with a better understanding of who we are and even a better understanding of the purposes of this life we call mortality.  The blessings in store for Natalie and Alice are infinite...to experience such struggle that others may gain strength is among the most selfless deeds.  They themselves will perhaps be strengthened beyond their age.

Second of all, we feel that our journey has not been traveled alone.  It's mighty difficult to feel alone and discouraged when you have many people cheering for you and telling you that they are praying for you and your family.  It's tangible!!

Again, the question of---"How do you guys do it?"  Simply answered I would reply in two parts; just as I said--1. Trust in God:  2. Receiving help from others.

The two answers I have provided need explanations.

I want to be specific and write of the sweetness we have experienced from others.  I have hesitated to do this earlier because I was worried I might forget something.  I couldn't possibly list all the ways people have served us, please know that we have been blessed by every single act of kindness, regardless if it's mentioned or not.

Tyler and I understand how much work, time, energy and resources have been given in our behalf...we can't express in words the miracles that have taken place because of it.

We live in a beautiful home that is ideal for our situation...it is not ours.  We drive reliable and comfortable cars...they are not ours.  We, the entire family wear new lovey clothes/shoes that we did not buy, but were purchased/donated in the perfect sizes to fit each nicely.  On occasion Tyler takes me out to dinner, he thanks those who provided the means to do so by way of gift cards, etc.  We are thankful to those who have watched our children when we could not be with them.  The children have lovely quilts, games, toys, books and learning tools to keep them busy and engaged.  They have dress ups, they have luggage for the day we get to travel somewhere, they have warm snow clothes, arts and crafts to be creative and innovative.  We have had help with cleaning when it was most critical. We have a personalized laundry service...the real kind of service, the kind that is rendered without a tangible reward. We even had a lovely garden that we did not plant, yet get to enjoy the harvest.  The children have bedrooms decorated especially for them...again something we could not have had time, energy, nor resources to do so, but meant so much to the children.

The meals that have been shared by neighbors, family and friends have been incredible.  Imagine what it's like to have someone fill your entire freezer with the best meals ever, it's amazing, to have a friend bring dinner each week.  The time sacrificed by many in organizing fund raisers to allow Tyler to be home and able to take care of his family in such a time of need is beyond explanation.  Packages that arrive at the door-filled with excitement, the letters and notes, words of encouragement, texts, emails, comments on our blog and much more...So there it is----THIS IS HOW WE DO IT!

It's an incredible thing to look around and every little detail is a constant reminder of that someone who loves us and cares about us.  Everything about us is from the sheer goodness of another's heart.

It just happened, we did not ask for such blessings...they came.  People are good.  People are selfless.  There is no doubt between Tyler and I that we could not have made this journey thus far without the selflessness of others.

Our family unity can be credited to those who stepped up and gave of themselves.  It made it that much easier to do something extraordinarily hard.  It would be too easy to say, 'this is too hard--I can't do this' without support and encouragement from others.

The old saying 'When the going gets tough...the tough get going' needs an addendum.  I will make my own.  'When the going gets tough...and people come together...anyone can get going'.  You are what you think...if someone tells you that you are great--you will be.  If you tell yourself you can do this--you can.  The only thing that keeps us from success is our self.  A positive mental attitude is the first recipe to success...mostly a positive mental attitude is obtained through the kind deeds rendered by others.  We have been able to stay positive with the help of others.

When we first embarked on this double transplant journey...we knew that we were over our heads.  We knew it was going to be bigger than us.  Of course we wanted to do it without help, being independent is a natural healthy desire.  Something better happened though; we felt the importance to accept help.  It's not easy to accept help.  Allowing others to serve and give of themselves has blessed our family more than anything we could have provided ourselves.  We have a deep appreciation and understanding of service.

Our prayer is that the kindness showed to us will be returned in some manner times ten.

So press forward we will...with smiles :)

Lisy




Wednesday, December 26, 2012

Alice's 1st Round of Rituxan

Alice spent the day in the clinic receiving her first round of four Rituximab treatments.  All in all everything went well enough.  After the first 15-20 minutes into the infusion she became sick, vomited and became red in the face.  She said, "Mom, I feel yucky...I'm sick."

The nurse stopped the infusion to let her body rest, we gave her some anti nausea medication and once she settled we began the infusion.  Things improved...she even slept through most of it, thankfully.

We learned that Alice's CMV (cold virus) came back positive...which means another IV infusion for her.  She will need Gangcyclovir every 12 hours for several weeks.  Hopefully in the next few weeks she will only require it every 24 hours.  Considering that she is entering another phase of immune breakdown (Rituximab),  the doctors don't want to take any chances on this cold virus...better to prevent it worsening.  I called the pharmacy and asked that I have a second pump, in order to be more efficient with her infusions...trying to promote more sleep at our house. :)

While in clinic I was able to coordinate many appointments for Natalie and Alice this up coming month.  January will be busy.  Natalie has visits with Pulmonology, Neurology, ENT, Cognitive Rehab, and Bone Marrow (1 yr. post transplant work-up).  For Alice she will finish her chemo before January is over and only has one final appointment with the orthopedic (for her leg)....and of course her continued weekly Bone Marrow appointments.

Hopefully after January, our schedule may ease up a little.  Possibly soon Natalie can start school.

It seems silly, but sometimes I get nervous to think maybe soon we will be merged back into normal life.  I worry that I won't be able to keep up with all the outside demands, etc.  Of course it will be awesome to participate in a variety of things, however, I worry that if it's too soon we will be disappointed or discouraged.  I suppose allowing fear to determine our decisions is a poor choice of route.  We only wish to do that which is best for each of our children physically and emotionally.

Somehow things come together and everything works out...it always does.

Lisy
The Ice sculptures are finished.



Not Feeling Well

Keeping the Pink Bucket Close

It's Over, All Better!

Going home, Alice brought her new backpack...full of treasures to the hospital.  She loves it.

Tuesday, December 25, 2012

Merry Christmas!!

Merry Christmas to All!!

We had a wonderful Christmas.  Everything about it was lovely.

Yes, we were all together.  The night before Christmas Eve we got nervous that Alice was getting sick, she vomited a lot and her tummy hurt and she seemed warm (temp.)  We watched her closely and she improved,  we were thankful.

Natalie wanted to be sneaky and set up a video camera so she could catch Santa.  The video worked, however, Santa had put his big red bag right in front of the camera...not knowing ;)  All she saw on the video was red and she could hear bells jingling and Santa saying Ho Ho Ho as he left; even then, she was thrilled to have something magical on the record.

When morning came (at 4:00 a.m.) the kids could not have been happier.  Tyler and I felt like we were in a story book.  Everything was perfect and wonderful.

We have so much in which to be thankful!

Many of our blessings now and over the past year, etc. have come by way of others....in many forms.  It is an amazing thing to witness the inside of another's heart.  It is also amazing how much happiness and gratitude one heart can hold without bursting.

Thank You,

Lisy








Sunday, December 23, 2012

A Week's Worth of Posts

Update on the Girls as of Dec. 23, 2012

I was able to converse with neurology regarding Natalie's seizures.  We decided to leave her medication the same and carefully document every seizure that we can.  She was having a rash of them until I called to speak with the doctor, then they went away.  Therefore we will let things rest unless they stir up again.

Natalie has figured out many tricks that help her deal with her seizures.  If they occur at night she calls for Matthew because his room is close.  He will jump out of bed and rub her back until they go away.  One night I heard her yelling, "Matthew, Matthew, hurry, Emergency, Emergency!!!"  I quickly came to help her.  I was proud of her for seeking help without getting up to walk.

She has always found security in Matthew.  It's a sweet thing to see how he cares for her and comforts her when she needs it.  Four years ago, when Natalie came home from the hospital after three weeks on life support, she held Matthew's hand every moment she could for weeks.  Her memory of previous relationships were erased but the relationship between her and Matthew remained.  Tyler and I were thankful that she was able to have someone to cling to for comfort until her memory began to return.

Alice continues to puzzle us.  She is vomiting one moment and fine the next.  She is still scheduled to receive the first of four treatments the day after Christmas.  We pray that all will go well.

Painting Christmas gifts.

Alice calls herself Purplicious...everything has to be purple...even the dress she is wearing.  It's backwards and two sizes too small.
Bored?

Dec. 19th

Matthew and Blair had Christmas programs at the school.  Matthew was in the Gingerbread play (actually it was a week ago).  It was the cutest thing.  He was so excited and practiced his two second part over and over, each time with more animation.  He made us promise that we would be there no matter what.  It was worth all the promising.

Blair's Christmas program was wonderful as well.  It was cute to see how quietly excited/nervous he was to preform.  I asked him if he felt ready; we have been working on memorizing a poem, in which he did memorize, however, just before the program I asked him, "Okay Blair are you ready to recite the poem?"  He said, "I don't have to remember all of it...cuz everyone else will...I will just say what they say."
I thought to myself...uhh that is something we are going to discuss in more detail.

We have been struggling with our Christmas tree.  Only one strand of lights is working.  The tree is missing some parts...it's the first tree Tyler and I purchased when Natalie was a baby.  I found it at Wal-Mart for $9.00 so I shouldn't complain, however, for some reason (in which we know) this year it looks uglier than other years.  Evie has made it her agenda to terrorize the tree.  Several ornaments are broken and what is left are on the top half of the tree.  Blair suggested that I put a force field around the tree, to keep Evie away.    The kids don't mind the ugly tree, they think it's awesome and exciting.

We are looking forward and hoping to be all together this Christmas! :)

I quite trying to make the tree look good.  Once I find an ornament I just put it away--not back on the tree.  It's a vicious cycle if I replace it to the tree...Evie is a determined little girl.


The Gingerbread Play

Adam and Matthew

Matthew has become great friends with Adam

I love this Gingerbread boy


Looking good Blair



The whole Kindergarten class



Dec. 20th

Today is our Anniversary.  Tyler and I have been married 10 years.  We decided to take the kids sledding.  They had a blast...as well as Tyler and I.  We figured sledding was a great way to celebrate ten good years and five great children.   Tyler and I love the snow and everything about it.  We both grew up skiing, and even spent our honeymoon skiing.  The second time I met Tyler was at Jackson Hole on the best powder day in history (in my mind anyway).  He is an awesome skier, I was impressed....four long years later we were married.

Ice feathers on the lake...we walked on the ice, it was neat...very sturdy.  The  children were fascinated with the whole thing.

Happy to be sledding.  I have some great videos of the other children , however, I will have to post them later.  I am having technical difficulties...it doesn't take much for me to experience this type of difficulty ;)


Dec. 21st

Happy Bone Marrow Transplant Birthday Natalie!!!  One year ago today she received her transplant.  It seems to have passed so quickly on one hand and on the other it seems so long ago.  It was a sweet moment yesterday when we were in the mountains sledding with the kids, thinking that one year ago Natalie was too weak to even walk and talk, and now she is laughing and playing in the snow...continuing to run her sled back up the hill for another run.  I was a very special moment for Tyler and I to witness.

We asked what she wanted to do to celebrate her Bone Marrow Birthday.  She chose to play games as a family.  We played hide n' seek, UNO, and Mustard Ketchup.  Many of the games we play are invented by the kids...usually Natalie.  Mustard Ketchup is a favorite of mine.  I have no idea where the name came from, because mustard and ketchup are not involved in the game.  It's a game of tag, in which you claim a sofa or seat for safety until someone joins you...you then have to leave and find another place to sit before the person who is "it" tags you.  It's a great way to burn energy.  We love it.

We felt it appropriate to give Natalie a haircut on her year anniversary considering that she has grown a killer mullet.  I guess it crept up on me.  I didn't realize she had such a mullet until we had a grown up 80's game night with some neighbors and someone came wearing a superb mullet.

She loves her new hair cut.  She tried to convince me to make her bald again.  I talked her out of it :)

Once I cut Natalie's hair I was feeling pretty good about myself and my untrained scissor hands, so I gave everyone a hair cut.  Evie's new cut might just be the most unique.  I should have consulted with a professional.  She's cute anyway, so I will chalk it up as a learning moment.


That little pony tail is about to be snipped, Evie wouldn't hold still for a second.


Not sure what to think.  The mullet is gone but now I have another  problem.

Evie's first hair cut...such a cute little curl.
Here lies Natalie's mullet on the counter

I figured this was the easiest way to do it.

Not too shabby...I think I did a great job.

Alice didn't need too much cut.  It's so curly that it blends well enough.  I just snipped a little bit.

Alice's curl, and fist hair cut since transplant.

Looking Good Blair!  Matthew ran off before I could get a picture, I will  take a picture of Matthew  tomorrow and add it to this post.






Monday, December 17, 2012

Clinic Update and How Old Is Jerome?

Natalie and Alice both came to clinic today.  Everything went very well; even Santa came to visit at the doorway (germ precautions).  Natalie tried to blow his cover by saying that Santa doesn't wear glasses...we had to remind her that he wears them off and on...just like Mom and Dad (contacts). 

For some reason when Natalie woke this morning and even before bed last night she didn't have any anxieties or meltdowns about going to clinic.  She had a nice little pep talk by her Aunt Jessica last night and maybe that helped.  I better call Jessica and find out what she said...I've gotta know! ;)

Natalie did have labs, enough that required a needle stick.  She tried some freezing spray which may have taken the edge off a bit, however, it was still hard for her, but she did much better than the average blood draw.  We always request our favorite phlebotomist Elena.  She gets it the first time..always!

Natalie's counts are good.  Her cough is manageable and her seizing has improved over the past couple days.  The doctors talked again about the possibility of her returning to school soon.  What is soon?...we don't know, it depends.  We know it will come together when she is ready.

Natalie dropped another medication today; no more Acyclovir.  The only medication Natalie requires at this point is Keppra (for seizures) and her Asthma inhaler as needed...and vitamin supplements.

Alice still has low counts, but seemingly well.  She continues to have terrible diarrhea throughout the day and night.  Tyler and I feel like she is having some graft vs. host disease.  The doctors are not overly concerned at this point.  Alice is scheduled to start what we hope is her last round of chemo.  It is a type of chemo that is targeted only to kill her B cells.  She will not loose her hair and have the terrible mouth sores, etc. like in the past.  It will be given over a four week period and done as an outpatient service.  We will be spending plenty of time in Clinic over the next month.

We persuaded the doctors to wait until after Christmas.  She will start her first of four treatments the day after Christmas.  We pray that she will manage well and that the treatments will be successful.  We plan to run the infusion very slow and watch her carefully.

HOW OLD IS JEROME? 

A couple days ago Natalie asked me how old  is her elephant Jerome?  I thought about it for a moment and discovered that he is almost four years old.  He was given to her by her great Aunt Patsy during a scary time in the ICU.  Natalie needed something to snuggle and Jerome came just in time.  Jerome hasn't missed  but one or two hospital stays since. 

When I told Natalie that Jerome is almost four, she said, "but mom, he looks older than that."  I told her that when someone is loved so much they sometimes look older than they are.  Then I thought for a moment and decided...no wonder I myself look/feel older than I am...I've been loving (including stressing over) you (Natalie) so much.  It goes both ways.  Jerome has needed additional stuffing over the years, has lost his arm at least twice and has been stitched back together at least three times.  There are days when I feel like I need some stitching and stuffing as well. :)  It's true I suppose, we all need mending.

Today when Natalie was in clinic, Sandy the secretary saved out a darling elephant for Natalie, knowing she was coming.  It was sweet.  Her new elephant's name is Olive, now Jerome has a girlfriend.

We are looking forward to Christmas.  There are so many sweet memories of last year that continue to pass our minds.  We have so much to be thankful for.  I wish I could share all the kind things that have been done for us...many in which we do not know who the kindness came from.  Tyler and I tell everyone that when we are still married and happy in the next life we will have everyone else to thank for it. :)...so true!!


Lots of fun stuff in clinic today.  They got Christmas gifts/stocking.  On Alice's right is her new cat named Scratch.

Playing Spot It.
Santa visits the hospital.  Natalie was studying him to see if he was the real Santa or not.  Even Santa has to wear a visitor badge.


Setting up the ice sculptures...I am not sure which organization does this, but it's cool.  They do it every year...at least I have noticed the past few years.

 
They are making trees and reindeer, and I think Santa's sled.

Looks cold.
Alice wanted me to make her a snowman with eyelashes.
Natalie made her snowman with olive eyes, a strawberry nose and a pistachio mouth.  Yummy!
Here is Jerome...he has no idea what he is getting for Christmas.
While at Grandpa Schellenberg's house...Natalie snatched up a bag of peanuts.  I thought maybe she liked them and wanted to pack a snack for the 20 minute drive home.  She packed them for Jerome. 
This is what became of the peanuts....they will be waiting under the tree for Jerome.
I have put it off as long as possible.  She is potty training with or without me.  I didn't want to potty train her while she has a central line, however, Alice is very independent.  

I went to dinner with friends...it was great.  Loved every minute of it.  We laughed about everything...told old High School stories.  Always a good time with the girls....the time always goes too quickly, the restaurant was closing, however, we had no plans of leaving.  Left to Right.  Me, Kat, Debi, Marianne, Cyd, Heather, Mindy, Jamie, and Monica.

Wednesday, December 12, 2012

A Break in Alice's Line

Last night when I was flushing Alice's line, her yellow lumen was stuck.  I pushed and pulled with the flush a bit and nothing happened.  I waited a minute and something moved... so I got excited and started to flush it more.  Well I must have got too excited because it popped/cracked and was leaking.  I clamped it and sterilized it.  I then took Alice to ICS and they repaired it.  We came home around 2:00 a.m.  The next morning Alice needed to go to clinic for TPA in her line to clear the blockage and so Tyler took her.  They spent most of the day at the clinic...and now her line works wonderfully.  This is the third time her yellow line has needed repairs.  It has been almost a year since this particular line was placed.  We are so pleased it has lasted this long.

Alice was more than happy to visit the hospital...three days in a row.  She loves it.

Each time I pass the Christmas tree in the hospital lobby I've noticed different patients observing it.  It makes me so happy when I see children in a hospital gown noticing all the familiar items on the tree...as these items don't look frightening anymore but sparkly.  It was worth it...all so worth it!

Tonight my friend Jill came to visit with her daughter Emily (who has SCID).  We could have talked for days--it was awesome talking about all the things we have in common.  There is something about talking with others who have been in your shoes...it's like therapy :)  Thanks Jill!  After a couple hours I went to inform Emily that her mother needed to leave...Natalie and Emily were having a great time.  It made me so happy to see Natalie happy.  The two girls have so much in common, they instantly became friends.

Great News....My phone was found...and in working order!  I like to think that the snow was just preserving it. :)  I feel like I have my right arm back now.  It's sad how dependent we become to our phones.

Thank you for your continued love and prayers...It's wonderful!!

Getting cozy, and hopes to stay a while.


Lisy


Monday, December 10, 2012

Clinic For Alice

Counts remained the same for Alice, ANC is 500.  We did not give her Nulasta.  Honestly, I was surprised and happy to learn that her ANC wasn't lower.  She is now off of Amlodipine (blood pressure med).  Her Cyclosporine dose just tapered another step today.  It's a wonderful thing to drop another medication from the list.  Alice is now currently taking 9 medications, two of them are still given through her line.

Rituximab is still on the back burner for Alice.

Natalie had an awesome day...she stayed home!  She never went to clinic.  Last night she did not fever...Hooray!  We decided to keep her home, which we feel was the right decision.  If the fever returns we will consider the panel of tests she was scheduled to have done today.

Tyler and I feel as though Natalie's hearing has worsened.  We are anxious for her next visit with the ENT.  We hope to find a way to help her hearing.  January will be a busy month for Natalie, she has visits with ENT, Neurology, Pulmonology, and Psychology.

Natalie went to the grocery store with her Grandparents tonight and picked out all her favorite foods.  She came home with oranges, mandarin oranges, bananas, broccoli, cauliflower, chicken legs, apple juice, carrots and Gatorade.  She had been complaining that there was nothing in the house that she liked. 

Tyler and I pulled the kids behind the car today on a sled.  It was a blast.  They loved it.  The snow is beautiful.  We hope the snow stays and that more will come.  Alice kept saying, "Faster, Faster."  When we came home she said my tummy hurts.  I asked if she wanted a pink bucket.  When I looked to the other side of the room where the bucket was, Evie had already grabbed the bucket and was handing it to Alice. 

Evie, you are so sweet.  Not many 16 month old babies are well trained in vomit control.  It's an art around here.  Alice has incredible control to wait for the bucket.  She feels a sense of security with the pink bucket.  Thank goodness for Clorox wipes..it makes sterilizing the pink buckets easier after each use.  I use several wipes a day.

Lisy

p.s. I have lost my phone in the snow somewhere.  I hope it finds it's way back.  Until then, if you need to reach me..call Tyler or email me.  lisyfish@gmail.com

Sunday, December 9, 2012

Negative Strep Test

Alice's strep test came back negative...thankfully.  Labs also showed that Rhinovirus is positive again.  This virus can stick around for a long time.  It's quite obnoxious.  For the average person it is the common cold.  For Natalie and Alice it means many sleepless nights, including diarrhea, nausea, fevers, coughs and headaches around the clock.

Currently Alice vomits between 3-6 times a day and has between 2-4 liquid diapers a day.  Natalie usually gets the hives on average 1-2 times every two days, due to panic that she may have to go back to the hospital (we think--it could be from something else too).  She also spikes a very high temp between 103-104 degrees every few days.  Our question is---could all this be from a silly cold virus?  Or is there more?  Tomorrow is clinic and we have decided to take both girls in to run some further testing, surely Natalie will not be happy about this.  At least we may be able to eliminate some possibilities and hopefully gather peace of mind that what we are currently doing is the right thing. 

It is a very good thing Tyler and I have each other, between the two of us we can function at the capacity of one.  For now one is sufficient, it's enough to continue on.  We are aware of each others needs and try to allow small outlets for each other when time and circumstances permit.  This synergy works best at night...we have to tag team the sleepless nights so someone can be available to start the next day.

This probably sounds sad, however, I need to include the details, even the not so fun details ...it's important.  And yes, truly it is hard but we are aware of our challenges and somehow they find their way into perspective when our focus is the "big picture"...this picture is easier to find when the small blessings are recognized.  It helps me to record on the blog...it allows me to label the many blessings that are amongst us.  Tyler has been able to do the same in his journal.  It helps to ponder long enough to establish an emotion that can be appreciated.

Last night I watched a Christmas video of the Nativity.  It was beautiful and peaceful.  I then imagined what it might have been like to live on the earth when the Savior did.  I immediately thought of my sick children.  I would have crossed over oceans and climbed mountains to seek after Him and place my children before Him to be healed.  I felt the most calm, peaceful and humble feeling as I imagined this.  I can only wonder how it may have been for those who experienced His presence.  I am thankful for the principles of faith and hope, as we do not live during His time of mortality...yet our blessings can be equal.

Lisy

Thursday, December 6, 2012

More Festival Pictures and an Update

Quick up-date.

Tyler took Alice to Primary Children's yesterday to have some testing done, such as a general viral panel and       cultures for strep.  She has been complaining that her throat hurts.  Alice is already on an antibiotic that is treatment for strep, therefore, if she does indeed have strep it would mean that she needs an adjustment in her medications, which may become complicated.  She has been very tired with nausea and diarrhea for several days.  We should hear soon what is or isn't discovered from the testing.

Natalie seems to have improved over night.  Still tired, but the cough has improved and she has been without fevers for three days.  Yeah!

Blair is feeling great and back to school.

The rest of the family is experiencing a syndrome called Partial Zombie.  We keep saying we need to go to bed sooner, but it's easier to say than to do.  Morning still comes bright and early, regardless of how sleepless the night may be.  Morning is a beautiful time of day, even more so when it is greeted with a full tank of gas.

We consider a good nights rest - a night in which we have no recollection of it. :)

Also I rounded up some more pictures of Festival.  Many people have asked if I had more pictures.  Thank you to all for your generous compliments of the tree...and thank you to those who helped make it and those who admired it, and especially to that person who purchased it. :)  We don't know who that is...but thank you.

Lisy

I wish now I had taken of pictures of each individual ornament and the garland.  It's hard to see in pictures the detail and even harder to see what it all is.

We made a big mess...we came prepared with everything imaginable, except I forgot to bring the tree stand.   

Getting the re-bar secured into the tree was the tricky part.
Little by little, it is coming along.  If you look close you can see three little evergreen trees on the right of the snowman.  Each tree is made of medicine vial caps from the pharmacists.  Nearly 500 pieces on each tree.  They ended up being so cute...it almost didn't look medical.

Each flip top cap on this star came off the top of a vial of medication.

These blue caps are used to protect the end of IV tubing etc.  We made lots of these type of ornaments with all different kinds of caps and colors.  Every time I look at these ornaments I can't help but think of Romney/Obama.  This is what we did while listening to politics.  We don't have T.V.  It's great we got so much done while listening to the news.

These orange caps come from syringe drawn oral medications. 

Mom and Dad Schellenberg.   They helped greatly!


Another great quote from a patient and family.  The  quote is inside of an IV fluid bag.

Almost done.

Securing the joints.

My mother Karen and sister-in-law Jessica.  Right hand ladies!