Thursday, December 30, 2010

Oh No, Not Croup!



Yes, it is true! I must have jinxed Mason by saying how well he was doing in my last post. On Christmas eve Mason came down with that nasty cough called CROUP. All my kiddos as babies to even 1st graders have been prone to come down with Croup. Sometimes worse than others. And, even though I've learned all the coping tricks and also when to call the doctor, it's definitely one of my least favorite childhood sicknesses. It can be really scary! Thank goodness though, Mason's case of croup right now is not the worse my kiddos have been sick with before.


After much time spent out on the back porch with Mason in the a.m. hours of the night, (allowing him to breath in cold air to help soothe his harsh cough), a home visit from our amazing pediatrician over the holiday weekend, and a dose of decadron (yes, more steroids for my poor little guy), I think he is finally on the mend. Mason still has a very hoarse voice, but it's improving, and his cough has become more productive than the horrible tight barking that it was. His energy has been quite low but, the good news is: Mason's lungs have remained clear and his O2 sats have remained in the mid 90's.



Needless to say Mason's heart cath/ biopsy which was scheduled for this morning has been moved back until January 13, 2011. (2011? Wow! Where did this year go?) I am a little bummed about this, because I was anxious to see where he is at with rejection. But, he's hot showing any signs of rejection, and the risk of putting him under with anaesthesia right now while he's still getting over the croup are way too high!



We were still going to go up to Primary's last night for his scheduled monthly IVIg treatment until we got hit here in Utah with a white-out blizzard. The storm was so bad that I was not going to drive anywhere!!! I called and canceled. (This storm is much worse than the one everyone was scared about the day before Thanksgiving, yet there was not much warning this time!) Mason has now been rescheduled for tomorrow for his IVIg treatment. He and I will now spend most of the day and evening of New Year's eve at the hospital. Although, it is really just fine, because he's still too immune suppressed to join in any large and crowded celebrations right now.



I hope all of you have had a wonderful holiday season with a very happy new year to come! I will post pictures from our Christmas soon, but I need to go now. Mason is sitting right next to me and whining for "MaMa"! (Maybe I can get him to sleep so we both can catch some rest.)


Friday, December 24, 2010

Merry Christmas



Miracle Mason and his family want to wish you a very Merry Christmas! With hopes that your holiday season is filled with love, hope, joy, faith, miracles, memories, and many prayers of gratitude.


Here is the card that will take some extra magic this Christmas to make it to your mailbox this year.


(Click on the card to enlarge.)




I recently came across this song and wanted to share it with you:

"A child is born tonight in Bethlehem,

His mother holds him close and sings a sweet lullaby,

All the world lay sleeping, unaware that God himself has come in the night.

The shepherds tremble as the angels sing, and in their song the voice of God speaks peace to the world,

A miracle has happened: God has come and God has spoken...but the miracle has only just begun.

And the God who spoke is speaking still,

And the God who came still comes,

And the miracle that happened still happens in the heart that will believe,

And we see the miracle of Christmas.

So come to Bethlehem again and see the one who's come to rescue us: our saviour and king,

Bring your past, the joy, the sorrow, all your hope to find tomorrow,

And hear the words again: "Fear not and know that God is near."

For the God who spoke is speaking still,

And the God who came still comes,

And the miracle that happened still happens in the heart that will believe, and receive the miracle of Christmas.

The miracle.

And the God who spoke is speaking still,

And the God who came still comes,

And the miracle that happened still happens in the heart that will believe, and receive the miracle of Christmas.

Believe the miracle of Christmas,

Will you believe?"

("The Miracle Of Christmas" lyrics by Steven Curtis Chapman)


These lyrics bring tears to my eyes each time I read them. The Miracle of Christmas is what makes miracles possible in our lives today. The Miracle of Christmas is what has made Mason's miracles all possible.


May you all feel the love and gift of our Savior this Christmas and all year long. We want to send a special "Merry Christmas" and "thank you" to Mason's donor family. It has been 8 1/2 months since Mason received his Angel Heart and not one day has gone by that I haven't thanked them in Prayer to my Father Above. I truly hope someday we can meet.


It has also been 8 1/2 months since Mason surpassed all medical hope. He is the youngest patient known to receive a heart transplant having just one healthy lung. He is doing so well! We feel so BLESSED! Having Mason still with us and thriving this Christmas was certainly a far of hope and dream last year. The medical world had given us very little belief that this would be possible. And here we are together as a family with all our special and amazing 5 children. I couldn't ask for a better Christmas gift!!! (Okay now i just made my self cry! But at least they are tears of extreme gratitude and joy!)



I need to wish a very Merry Christmas to someone very special to our family! To Sammi who I call an "Angel" and "an answer to prayers" (while I was at Stanford with Mason she also earned the title "Super Nanny" by all our friends and family who saw her in action) I want to tell you how much we love you and appreciate all you've done for our family. All the hours you've donated to us this year out of pure LOVE will never be forgotten!!! (She went home to Vegas to spend 5 days with her parents. She's only been gone 2 days and we all ready miss her smiling face.)

(Sammi and our 5 kiddos)



One more quote I love:

What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace. - Agnes M. Pharo



And last, but not least, I leave you with this video:



Merry Christmas from our home to yours!


Saturday, December 18, 2010

Birthday Boy Pictures & How is Mason Doing?


At this busy time of year, preparing for Christmas has kept me from updating our blog. It's amazing how much time we spend preparing for something that comes and goes so quickly! But for me, it's all worth it to see the joy in each other's eyes (especially our kiddos on Christmas morning) as we celebrate the true "Reason for the Season" - Christ's birth, life, and atonement. Let's just say I'm quite behind on things this year, especially Christmas cards! So if you do receive one in your mailbox there must be some kind of Christmas magic that gets it there!!! I hope you all are enjoying this beautiful holiday season. Don't get so caught up in the hustle and bustle to remember the real reason we do all this :) (That's a reminder to myself as well!)



A few pictures of Miracle Mason and our family:


Our 3 Year old boy whom is true proof that miracles still
exist and continue to! Hold on to your HOPE and DREAMS!
PRAY, have FAITH, and never give up! NEVER GIVE UP!!!



MASON'S 3rd BIRTHDAY

A birthday angel comes to our house during the night
and decorates the kids rooms. (Even though Mason and I
ended up on the couch that night-as usual- I stuck him in
his crib for the sake of a picture! Little stinker has NEVER
slept all night in his own bed. Hopefully once he's off his
steroids we will have better luck w/ that !!!)




Our family party that night included
2 sets of grandparents, our Angel Nanny Sammi,
Daddy, Mommy, and our kiddos. Small & simple!

Mason is opening his favorite gift which came
from Grandma and Grandpa.........



his very own recliner chair!
He looked like a king sitting on his throne!!!




Mason's #2 favorite was a new cell phone. Maybe
now he'll leave our phones and ipods alone!




Mason and big sister Kaitlin




It's almost impossible to get all 5 looking at the same time.........


...........as you can see!!! Ammon (5 1/2) in front,
Preston (9 1/2), Mason (3), Braiden (7 1/2) in the middle
and last but not least - our one and only girl Kailtin (12).



Mason loves in Grandma's and Grandpas!
Meet the 4 that were able to join us that night........

Grandma SanDee & Grandpa Wally



Grandma Marilyn & Grandpa Jerry




Here's Daddy giving Mason a pep talk about blowing out the candle.




Attempt 1 didn't work. The other kiddos blew it out for him!
So here's Mommy pep talking for round 2.




Mason's thinking about eating his cake........




took one lick........




and decided it was more fun to play with tissue paper
than to eat birthday cake! Of course!



How is Mason Doing?

As always, I want to be very careful not to jinx Mason. But, he is doing so so good!! We have gone almost 3 weeks without a single doctor appointment or blood draw. It makes me nervous, but our transplant team at Primary's saw no reason for another appointment before next week as long as no sicknesses or rejection symptoms manifest. Say some prayers, knock on wood, & cross your fingers that nothing gets in Mason's way of having a wonderful happy healthy Christmas at home!!!! 4 weeks in between appointments certainly means our brave little guy has come a long way from having 2 or 3 appointments a week. Hooray for Mason!!!


Positive: Mason is pulling himself to a stand all the time and isn't as scared to put his weight on his feet. Yeah! He is also being extra courageous and tasting more foods especially all the yummy goodies we receive this time of year! (notice I said TASTING, not EATING- but it's a step in the right direction)


Not so positive: Mason's average night sleep still = 3 or 4 hours! Yikes not so good! Those darn steroids! Can't wait until April when he can come off of them. This also means Mason's Mommy, that would be me, feels like a zomby most days. But, somehow I still make it through the day and accomplish the MINIMAL that a Mom needs to do (as well as what Mason's personal nurse needs to do).



Next week on the 29th Mason has his monthly IVIG appointment. And, on the 30th he'll have a heart catheter biopsy. For this I am truly nervous!! It has been 3 months (the longest he's ever gone) since his last biopsy. For those of you who are new to our blog. A biopsy of the heart is the best way to check for rejection. In the beginning, Mason had them every week. Then at 4 months post transplant he went to once a month biopsies. Now, his last one was the 30th of September-4 days shy of his 6 month anniversary of receiving his Angel heart. His last 3 biopsies showed ZERO rejection. Please remember Mason in your prayers that next week his biopsy will also be a ZERO, just 5 days shy of his 9 month anniversary!!!



I want to leave you with a quote I found yesterday. It instantly made me think not only of all our family, but also all the friends, family, and strangers who have served us in many many ways AGAIN, AGAIN, and AGAIN! Thank you with all my heart. Little by little as a family we are trying to pay your service and kindness forward.

“Just as Jesus used a child in His mortal ministry as an example for the people of the pure love they must and could have to be like Him, He has offered us the family as an example of an ideal setting in which we can learn how to love as He loves.

“That is because the greatest joys and the greatest sorrows we experience are in family relationships. The joys come from putting the welfare of others above our own. That is what love is.” ~Henry B Eyring
HAPPY HOLIDAYS!!!



Tuesday, November 30, 2010

Happy 3rd Birthday!





(Michelle Riddle Photography w/ The littlest Heroes Project)



Wow Mason is really three years old today! It is truly hard to believe
all that this kiddo has been through in three years. He is such a strong
little guy with an extremely powerful will to live. Along with this will.....
........lots of HOPE ,FAITH, & PRAYER, modern medicine, belief in
Heavenly Father's plan, and of course his special donor family's gift
of life - all worked together to keep him here on earth with us,
even when his prognosis was very grim. We feel so blessed to be
part of Miracle Mason's amazing journey and for the lesson's we
have learned along the way!! HAPPY 3RD BIRTHDAY MASON!!!


Weighing in at almost 28 lb's Mason is doing great.
He is still a liitle squirt just beginning to wear size 2 pants
(well, he does need size three shirts to comfortably fit over his
chubby little steroid tummy and his g-tube button) and only
wears a size 5 1/2 shoe, but He seems to get stronger and
have increased energy each day. Mason finally has a renewed
interest in pulling to a stand and cruising furniture. Yeah!
Honestly, I'd hoped he'd be walking by today. His 3rd birthday
would have been s great time to accomplish this milestone, but
as we all know, Mason follows his own schedule always!
But, I won't complain because a year ago on this day we all
had a struggle believing he'd still be with us for his third birthday!



Here are some cute pictures from this last month:






(These pajama photos were all from last night on
his Birthday Eve.)



(Along with his G-tube feeds, his potatoe chip fetish
has to help his weight gain just a little. Probably
not because he's usually done after a few nibbles,
but at least there is hope he'll eat again.)



(Prefers playing with spoons rather than eating with them.)



(And his attraction to electronic devices still continues.
Which is fine, until he hid the computer mouse from us.)





(Mason has warmed up quite a bit around family,
but still is very shy around most people.)



(He has enjoyed the snow we've had lately, but only
lass out in it for a few minutes before he's shivering.
Here he is outside with Kaitlin and Ammon.)


(Mason thought it was funny when big brother's
Braiden and Preston were throwing snowballs
from the deck up above until...........)

(one hit him right in him right in the face!)



Mason love to play with water.........



especially water in the kitchen sink!
What a silly boy!!!


One Sunday afternoon,
Mason was enjoying his little tike car........



until big brother Ammon decided to join him!



Oh, brotherly love!




Mason at 2 months old.
Wow, hasn't he change?!!!
Now he's pink not blue!




Mason, as your mommy I feel honored to
call you mine. I feel honored you chose to come
to our home when you left your home up above.
I feel honored you have let me care for you
(even if it means I haven't slept much in 3 years),
for I couldn't think of a better gift than to take care
of a very special child of God. You are so loved by
your 4 siblings and your daddy and I!
Thank you for the love and peace you bring into our home!
Thank you for being you.

Happy Birthday Miracle Mason!

Love,
Mommy

Saturday, November 27, 2010

Happy Thanksgiving


The day before Thanksgiving a big windy snow storm blew through Highland Utah. In fact, the news had people so worried that the grocery stores and gas stations were packed with people preparing for the storm that might snow us into our homes for the rest of the Thanksgiving weekend!

(Picture taken on Sunday when a small storm came through
and left us a little snow. But Wednesday's storm was too
windy and frigid cold to go out and play in the snow!)


On Wednesday Mason and I headed up to Primary Children's for a cardiology checkup and his monthly IVIg treatment. His treatment was going to have us there until about midnight, so because of the storm warnings I had in the back of my mind that either we'd end up spending the night at the hospital or we'd have to go stay with some friends that live 15 min from the hospital. But, the transplant team had other plans for us. Once they heard that the Universities were closing and that anyone working in the Salt Lake valley were being told to leave work early and head home.........they told us to post pone Mason's IVIg treatment until next week and go home right after his check up!!!


At first I was discouraged because it takes a lot of planning to spend a whole day up at the hospital. After preparing all of Mason's meds and feeds to take with us and leaving my kids in the hands of a good babysitter, I almost turned them down on canceling! Although after thinking about it I decided we didn't want to be snowed in up in Salt Lake and not be able to spend Thanksgiving with our family. Mason and I have already spent too much time away from our family this year!! (In the end the storm was bad only until midnight and then passed through. By thanksgiving morning the roads were clear.) I am grateful for our wonderful transplant team for care so much about us.



(This was at the hospital preparing for Mason's IVIg treatment. The bummer
was, this was the first time Mason was actually smiling and happy to be
coloring in a hospital bed. Hopefully next Thursday, when we will go
back to do it his treatment, his happy attitude and smiles will accompany us again!)




Last thanksgiving was sad for me because of the prognosis
Mason had been given by so many medical professionals. It was probably going to be his last Thanksgiving here on earth with us. Even though in my heart I felt very strongly that Mason still had more time here with us, it was hard at that time not to let my emotions listen to what they were all saying! Our family cherished every minute we had with him during the holidays last year, as we still do this year! It is just so wonderful to have him much healthier this year and with a longer life expectancy.


Life is tricky though because he is still very immune suppressed, but we have been able to enjoy time with extended family in small groups this Thanksgiving. I am so thankful for all our family and friends who have surrounded us with love and support during our blessed, but at times, difficult journey with Mason.


Thanksgiving brings with it a spirit of love and gratitude. I pray we can keep this spirit around all year as we count our blessings small and big each day.


(This Picture of Mason was the day before
Thanksgiving last year. Wow, he has
come so far! Look at those purple
lips and finger tips!! And I'm
not sue where his O2's were because
he was on them full time. I must
have snapped a few pictures
during the change of his cheek stickers.)



I truly have so much to be grateful for that It would take me all day to list them. And I certainly do not have tome in my life right now for that. But a few at the top of my list are: My absolutely wonderful family, a loving Heavenly Father, the gospel, prayer, faith, hope, miracles, and Mason's donor family.


Our family wishes you a very Happy Thanksgiving weekend and may you be blessed with many happy memories this Holiday Season!


My quote of the week:

"We need to be more grateful. It's one of the marks of strong character, to have a feeling of thanksgiving and gratitude for blessings that are ours. We need more of that spirit in our homes, in our daily associations, in church, everywhere. It's so easy to cultivate the spirit of appreciation." ~Ezra Taft Benson


Saturday, November 20, 2010

Patience



Patience is something I am still learning, but definitely need a lot of in my life. I started this post in September, but never got around to finishing. It must have been a day that I was frustrated or short on patience. Some days my patience are much better than other days!! As much as I try not to..... because I am truly grateful for all I have and especially grateful for how well Mason is doing.... having little patience some days still gets the best of me. I share these thoughts with you because I know this is something all parents, and even more so, parents of special needs kiddos (certainly including me), need more and more of each day!



Patience is a virtue.

It takes patience to wait for a seed to sprout or a tomato to ripen.

It takes more patience to ask a 5-year-old to tie her shoes than to tie them for her.

Sometimes the phrase "long suffering" is used as a synonym for patience.

Patience is the ability and willingness to endure waiting without complaining or being upset when faced with a difficult or challenging situation.

Patience requires tolerance, compassion, faith, hope, and love .

Patience is a good natured tolerance of a delay or incompetence.

Patience is talking softly, yet sternly, to reprimand a child who has just colored all over your wall with permanent markers.

Patience is learned and acquired slowly over time.


Or in Mason's journey patience sometimes means enduring......................
the wait for answers from all the hospitals who reviewed mason's unusual and complicated case, being in another a state away from your family, hitting yet another speed bump, delaying moving forward for just a while, hitting your lifetime max and losing your medical insurance, answering daily phone calls (or ignoring them some days) from those trying to collect for Mason's uncovered bills, filling out and refilling out SSI and Medicaid applications only to be denied, the hardships it can be to the siblings of special needs kiddos, and overall- life throwing at you what you didn't expect being a mother would include and just taking it in stride looking for the sunshine each day.



In the end of such trials patience will always pay off and everything will work out. Some sooner and some later, but we are never alone and our patience will help us find a better day always. I hope and pray for more patience in my life and also that my thoughts may help you to do the same.



We did finally get insurance for Mason. (Which was the speed bump I think triggered me to start this post initially.) It just took lots of research and patience to find him some coverage that was best for his situation. Any one out there having the same problem, look into the Health Care Reform that changed a lot of insurance guidelines in September 2010 and talk to your employer or insurance broker as well as your hospital's social workers. I am grateful we were able to get Mason covered again after a few stressful months of no insurance!


"Patience is tied very closely to faith in our Heavenly Father. Actually, when we are unduly impatient, we are suggesting that we know what is best–better than does God. Or, at least, we are asserting that our timetable is better than His." --Neal A Maxwell


"We can grow in faith only if we are willing to wait patiently for God's purposes and pattern to unfold in our lives, on His timetable." --Robert C Oaks


".....Heaven's kindness will never depart from you, regardless of what happens......Bad days come to an end, faith always triumphs, and heavenly promises are always kept."
--Jeffrey R Holland

(This quote I've used many times because it is one of my favorites!!!)

Friday, November 12, 2010

Halloween Happenings 2010


Wow, I am really behind on my blogging! Only 2 weeks late, I'm finally posting some pictures of our family's Halloween festivities. We had fun and were especially glad to be all together at home for this holiday. Enjoy.......


The most appropriate picture to start with:
Mason's heart jack-0-lantern, because this Halloween
we celebrated Mason's healthy heart and being together!




All the kids worked together to make a
gingerbread 'haunted house'. Although Kaitlin
would probably tell you the truth; that it was mostly
her, as the boys ate the candy and made a big mess!




The finished project: Strickland Kids' Haunted House 2010




Mason was sure to assume his favorite spot on top
of our kitchen island to assist in our Friday night
PUMPKIN CARVING.




Ammon (in his apron), Braiden & his buddy Berk, Mason,
and Daddy, working hard on their very artistc Jack-o-lanterns.




AND THEN TRICK OR TREATING NIGHT:


Mason was our little doctor.
(Very fitting, don't you think?)




After a tick or treating to a few houses, Mason had
a lot of fun handing out candy to our trick or treaters.
In fact, I could not get him to sit still for this picture. It's
super blurry, but I still wanted to show off the back of
his cute little scrubs. (Although if I could've, I would've
put '....... and Lucille Packard Children's Hospital' !)





I dressed up as Mason's assistant,
since I already officially am his full-time nurse!





Ammon was our very own Buzz Light Year.
He loves Buzz and Woody and the rest of Toy Story!




Braiden (on the right) and his friend Berk
were rough and tough motocross racers.





Preston was a Lone Peak Knight's (our local high school)
baseball player w/ a broken leg. Well, the broken leg and
crutches only lasted for the school Halloween parade but,
after that he decided his leg was healed for trick or treating.




Kaitlin (on the right) was the Queen of Hearts with
her friends: Lachlan (Alice in Wonderland)
and Rachel (The White Queen).
Definitely a beautiful bunch of girls!!!





Here's our Super Nanny Sammi as the grape with all our kiddos,
(I tried to get out of the picture, but Mason wouldn't allow that!)




And here we all are....The Strickland Crew on Halloween 2010.



Our family hopes all of you had a fun and memorable Halloween too.



"May the laughter of children gladden our hearts. May the faith of children soothe our souls. May the love of children prompt our deeds. 'Children are an heritage of the Lord' (Ps. 127:3)."
Thomas S Monson