Friday, November 30, 2012

Happy 5th Birthday Miracle Mason

Today Mason turns 5! 
Every birthday is a true miracle for this boy.
5 years ago when Mason was born we thought
he was a healthy little boy.
Little did we know that at 3 days old he
would get very sick and we would learn 
about Mason's very special heart.
A heart so special, but so sick that
we didn't know how long we'd get to keep 
him here with us. It's been a long journey,
but one full of many blessings! Mason has
surpassed by far any medical expectations!
This is why we call him
Miracle Mason!

 Mason is one very funny boy.
He is also very stubborn!
When he gets his mind set on something,
just know there's NO way you can get him 
to change his mind! Just like the swimsuit he
wanted to wear EVERYDAY during the summer,
he has certain things he wants to wear lately
which I am not sure is better or worse than that
silly swimsuit. He likes to wear button down shirts
and a tie. He started wanting to wear these shirts
because they have a pocket for his police 
walky talky. 

Then one day 2 weeks ago he pulled 
some ties out of the closet and he insisted on 
wearing one. And, has wanted to wear one 
almost every day since. No need  if it matches
 either, in fact sometimes I think he goes for the 
most mis-matched as possible! He also has to
 have a belt on, for a place to put his gun. 
Let's just say..... it is very cute, but quite  
high maintenance for a 5 year old! 

Even better is when he is insists on 
wearing the shirt, tie, pants, and belt to bed!
Or, if his clothes get dirty or wet at all,
he has to change into a whole new outfit.
Sometimes it's 5 outfits in just 1 day!
He will wake up in the middle of the night
asking, "Mom is my shirt fine? Is my belt fine?
Is my tie fine?" and he will repeat this several
times a night! One very silly boy that I 
dearly love, but at times can drive me crazy!!!

Mason loves anything that has to do with
police officers, fire fighters, sports, and guns.

His favorite TV shows to watch are Caillou, Fireman Sam,
The Fresh Beat Band, Rookie Blue, and Flashpoint.
(Yes that's right, Rookie Blue and Flashpoint are
 quite "grown up" shows, but he loves them because of 
the guns, the helmets, the uniforms, and the action!  )

Mason also loves to dance (especially to 
"Gangnam Style), color, paint, and play any kind
 of ball.... be it baseball, football, lacrosse or
 soccer. It has been so fun to seem him finally walk
 this year and join in playing with the all kids!

Mason is still just a little guy weighing in at
 just 27 lbs on his 5th birthday, but
 he is one of the strongest little boys I know!

Dear Mason,
Thank you for letting me be your Mom.
I feel so blessed that you chose me!
You are so brave, so strong, and
so very tender hearted.
You are wise way beyond your years.
You are a teacher to us all
about what is truly important in life.
You are fun and silly and
a joy to all those you meet.
You are one amazing little boy
who is LOVED by many!

Happy 5th Birthday Mason!

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown

Wednesday, November 21, 2012

Fall Flashback

(A brief update on Mason- Monday's clinic appointment went well. His echo looked great, so these yucky recent illnesses have not affected his heart function. For that we are very grateful! I don't yet have results from the quantitative test for the CMV and EBV or the test to see if Mason is resistant to the IV med he is on. But, in the mean time he seems to be slowly getting better.) 

Here is a flashback for a few of the Strickland family fall happenings:

First day of school- August 21,2012
Kaitlin- 8th grade

Preston- 6th grade

Braiden- 4th grade

Ammon was so excited to get on the bus that he 
wouldn't let me get a picture before school.
And, after school he was too tired!

Ammon- 2nd day of 2nd grade

Mason, even though not going to school yet,
was getting ready for the first day of school too!

By the way, how do you freeze time?
My kids are growing up to fast!!!

Kaitlin's 14th Birthday-
September 16,2012

It is so hard for me to believe that my first baby and my only
 girl is now 14! Kaitlin is one very special, kind, amazing, and 
beautiful daughter. I am grateful for her and especially proud
 of the person she has become. She is a leader, a good friend,
a good example, a great student, a fashionista, and has a smile
that lights up the room. Kaitlin can meet up to any challenge
she faces. After a 4 1/2 year break from piano Kaitlin picked
 it up again about 6 months ago and she is becoming quite the
 pianist. I was so impressed at her recital earlier this month!
  She is also the most wanted babysitter in the neighborhood.
 If I want her I have to book her in advance!

Kaitlin, I love you! Happy belated birthday

Kaitlin got to go on a trip to New York with Mark
 as a special 14th birthday daddy-daughter date.
They went during UEA fall break in October.
They had a great time!

Fall Sports

Preston played in a fall lacrosse league.

Braiden played some fall baseball.

Braiden also played on a flag football team.

Ammon was invited to play on a neighborhood
soccer team. He had a great time and  I am so
 grateful to his team and coaches for including him.

Thank you to coaches Lynn and Calvin!

Mason is always the favorite fan on the sidelines
of all his brothers' games! Someday he'll be out there too!

Mason also loves trying on his brothers' sports gear.

Mason is one funny, happy kid! And on this day before thanksgiving I want to share with you how very full my gratitude is for Mason's donor. It is because of Mason's donor that this will be his 5th thanksgiving! It is because of his donor that our family will be spending tomorrow ALL together! My heart is full!

Happy Thanksgiving!

Monday, November 19, 2012

Update on Mason's recent pneumonia, EBV, and CMV

Just a quick update on how Mason is doing.....
The last few days he has finally been acting like he feels a little better. Since last Monday he hasn't had anymore high fevers. Just two nights ago he had a fever of 100.8, but that is  
nothing compared to the 103-104.5 fevers he had for 16 days! 

Last Tuesday when the transplant team called to tell me the results of Monday's blood work, I will admit I was quite discouraged. The count of the CMV copies in Mason's blood had gone up by 1100! (Oct. 31 it was 6300, Nov. 5 it was 6600, & Nov. 12 it was 7700). The EBV (Mono) copies have remained the same this whole time (at about 700). So, after 4 days of an oral anti-viral med which was then switched to an IV anti-viral med.....and at this point he'd been on the IV med for 10 days, Mason wasn't kicking these nasty viruses!

Today we go back to transplant clinic for an echo, more blood work, and his monthly IVIg treatment(still treating the Parvo). We will check the quantitative amounts of the CMV and EBV again as well as a test to check if Mason is resistant to the IV anti-viral med (Ganciclovir) that he is on. We had continued with the same med for this  last week even with the news of the copies going up, with the hope that it will start working, because the docs are leery to switch to another IV med. The other choices of meds to treat what Mason has could be very hard on his kidneys. I'm praying today's blood work brings good news.

On the bright side, last weeks echo showed that Mason's healthy heart has not been affected by his reason illnesses. And, the pneumonia in his left lung seems to be almost cleared up. No more crackles!! I believe this is why the last few days he has seemed to feel a little better. At least 1 sickness down, now just 2 to go! Also, I'm not sure if the IV med is giving Mason an appetite or what, but he's been eating quite a bit more this last week.....


Mason enjoyed pizza and root beer on Saturday night.

I will up date again soon. Thank you for your prayers and love.

“Even if you cannot always see that silver lining on your clouds, God can, for He is the very source of the light you seek. He does love you, and He knows your fears. He hears your prayers. He is your Heavenly Father, and surely He matches with His own the tears His children shed.” 
~Jeffrey R. Holland

Monday, November 12, 2012

Home Bound

Mason is one smart sneaky boy! Somehow he was able to stop his fevers and keep enough fluids down last Sunday and Monday in the hospital in order to fool the docs into discharging us to go home. Monday night we came home to a delivery of IV meds, IV supplies, gowns, masks, and a home health care nurse. 

I learned how to take care of Mason's PICC line (central line) and administer his anti-viral IV meds. He is receiving the IV infusion twice a day and each time it takes one hour. The gowns and masks serve a dual purpose while administering this med...... 1) to keep a sterile environment because Mason's IV is a central line right into his internal jugular vein and 2) for precautions to protect the one administering it (Me) from a drug that is classified into the same class as chemotherapy drugs. Do I remember the gown every time? Let's just say, I'm lucky to even get his IV started on time!

So, I say Mason is one sneaky boy because the day after we got home from the hospital his fevers were back with a vengeance! Little stinker! Everyday this last week at home his fevers have started around 101.5 and by night time have gone up to 103.5- 103.8. The only thing different than before he was admitted is that he has been able to stay a little better hydrated. Poor little guy has continued to feel so very crummy. He has had three hang-out spots where he has spent all his time: the big red chair in the family room (which I cover with blankets because of his vomits and diarrheas right now), my bed, and his bed. He hasn't even felt like walking from one resting spot to the next, he asks to be carried. These yucky viruses along with the pneumonia have wiped Mason out! 

Everyday I have stayed in contact with the transplant team at Primary's about his fevers. They feel that the fevers are still part of the EBV and CMV....they are just 2 very horrible viruses and they may take Mason quite awhile to get over them. Since Mason started antibiotics the day the pneumonia "crackles" started in his left lung, the fevers probably are not from that still. The team has felt I'm okay to continue treating Mason at home as long as the fevers and dehydration don't get to the point they were 10 days ago when he was admitted. I love taking care of him at home, but I will admit it is tough when I have a family to take care of as well!

With this combination of illnesses Mason has caught this time, we will probably be home bound for the rest of the winter. Or maybe I should say "lock down"! Besides going to doctor's appointments Mason will pretty much be confined to our house. Catching all this at once so early in the cold and flu season makes him all the more susceptible to the other yucky illnesses spreading around this time of year. This makes me so sad because he was finally enjoying going to church (the first time ever was in July of this year), hanging out with cousins, and going to the store once in awhile with me. 

What makes me even sadder is that Mason's therapists and preschool teachers can not come see him right now either! As I said, LOCK DOWN! The EBV and CMV are highly contagious to other immune-compromised kiddos and adults, as well as to pregnant women (because CMV is dangerous to the unborn child). That being said, Mason's preschool teacher is pregnant so she definitely can't come see him. And, all the people his other teachers and therapists visit are also immune compromised, so we can't have them spreading Mason's germs! Mason LOVES his teachers and therapists (he gets speech, occupational, and physical therapy)! He asks me almost everyday, "Is my teacher coming today?" I sadly have to answer, "not today  honey". How long until they can come again?..... We aren't sure right now.

Today Mason has a transplant clinic appointment. He will get an echo to make sure his heart is handling all this right now, and lots of blood work. Thank goodness for his central line because they will be able to draw all of his blood work from that without any pokes. Most of the blood work will be to measure the level of infection in his body and to get a quantitative count on the amount of EBV and CMV he still has. If the amount of each is going down then we know the Ganciclovir IV med is working. If not, then Mason will have to switch to something else. Also, as we continue to follow the amounts of CMV and EBV in his blood over the next couple of months this will help us to know when he is not contagious anymore (and thus can receive visits from his "teachers" again! yay!).

The good news for today is..... so far no fevers! Hopefully is is on the mend!

I will try to be better about updating and I also need to still do a "Fall Family Post" very soon. Thanks for your continued prayers for Miracle Mason and all of his heart buddies.

Sunday, November 4, 2012

Number Eight & Halloween

Here we are again, at Mason's favorite hotel.....The Hotel on the Hill (Primary Children's Medical Center Hotel that is). It truly is our home away from home, especially this year it has been for sure! I just counted up how many times Mason has been admitted this year, 8 admits in 10 months! That is definitely a record breaker for us. Not the best record to break either!

Mason has pneumonia in his left lung (thank goodness this is his non-functioning lung that doesn't get any blood flow, and hopefully we started antibiotics soon enough to prevent it from spreading to his good full functioning right lung). He also has EBV ( better known as Epstein Bar or Mono) and CMV (Cytomegalovirus). THE JOY OF IMMUNO-SUPPRESSION! Not! But in all reality, this is just our lifestyle right now. I just have to count my blessings that Mason has a donor heart that has saved his life, and in order to save his donor heart he will always be immuno suppressed...........which means picking up miserable and sometimes rare sicknesses is just part of the game.

Mason started having fevers of about 101 about 10 days ago with no other real symptoms accept being more tired and a higher heart rate. By the 4th day, which was Monday Oct 29th, I took him to see the transplant team. I was worried about rejection. His echo looked normal, which usually will rule out rejection. Yay! So what was going on then? Mason had a bunch a blood work done to see if we could figure it out, because in his physical exam everything seemed normal as well. Most of his labs came back normal with some pending until Tuesday, so we headed home. 

Monday night he just didn't seem like his happy self. I knew he didn't feel well, but he still tried to enjoy the family activity of carving pumpkins:

Late that night his fever went up to 103! So, in the morning our pediatrician Dr. W checked him out. Overnight his left lung got quite junky, full of crackles! He started Mason on antibiotics to treat pneumonia. Thinking this had been the only reason for the fevers, I felt relieved to have an answer. BUT, then I got a call from the transplant team with the remaining results of Monday's blood work. Mason is positive for EBV (Mono) and CMV! These 2 viruses can make immuno-suppressed kiddos dangerously sick! I would have been perfectly fine with JUST the pneumonia diagnosis!

Mason was then started on an antiviral medication to treat the EBV and CMV. We also were told to go in Wednesday for more blood work, because they needed to run quantitative tests to find out how much of the EBV and CMV he actually has. This would tell us if he would need a stronger anti-viral med via IV rather than just the oral med. 

So here is brave Mason on Halloween morning in his cute little police costume at the Primary Children's Riverton lab. He is warming up his arms for more blood work:               

He continued to have fevers that day of 103.5. Which would only go down to 101.5 with Tylenol (he can't have Motrin).  All the other symptoms came on with a vengeance as well; a nasty cough, vomiting, diarhea, sore throat, and body aches. This was definitely not Mason's happiest Halloween! Poor little man! He tried to put a smile on that night to enjoy the night with our other kiddos.....

 but he just felt crummy! He "trick-or-treat"ed to just a few neighbor houses and then he was ready to call it a night. It made me sad, because he had been so excited for Halloween this year!

As the week went on Mason seemed to get sicker and sicker. His fevers were going up to 104.5! Yikes! We were waiting for Wednesday's blood work to come back to know if he needed to be admitted for IV meds. Thursday came and went with no results. Friday came and still no results, but by late afternoon I talked with the transplant team and told them I was quite worried about Mason. He was so lethargic and I was certain he was dehydrated. They had me bring him right into Primary's. This is how miserable he was feeling:

He was admitted and started on IV fluids right away, for dehydration. When we got there the blood work results finally showed up. The CMV was in very high amounts and the EBV was lower, but still concerning. He then was also started on a strong IV anti-viral med. He will need it twice a day for at least 2 weeks, before it is switched to an oral med. 

The good news is..... Mason had a PICC line put in today that he will be able to go home with to continue the IV meds. This line will also be used for the frequent blood draws that will be needed to monitor the CMV and EBV. Today is Mason's first day without a fever. So he seems to feel a little better. If the fevers don't come back and he is able to stay hydrated we will be able to go home soon. I just feel so bad for my sweet little boy. I hate to see him feeling so crummy! Please remember him in your prayers that he can be happy and healthy again soon.


Preston, Braiden, Kaitlin, and Mason showing off their Jack-o-lanterns.

 Ammon was Mason's police partner. They both are
so fascinated with police offers!! 

 Kaitlin a pretty purple cat, Ammon and Mason the
crime fighting police men, Braiden and Preston the
boys in black were all ready to go get some candy!

Mason even had the perfect mode of transportation!
If only he had felt better!

I will update soon to let you know how my little policeman is doing! Thanks for your love, concern and prayers!