Saturday, December 24, 2011

MERRY CHRISTMAS

Hooray! We made it back home in time for Christmas. We want to wish all of you a very merry Christmas! 



This
Year at
Christmas time
we certainly have a lot
to be grateful for!   First and foremost,
we are grateful to be together at home celebrating
the TRUE REASON for this special holiday season, the birth
and life of our Savior.  Here are some of the other things we are
thankful for this year: Kaitlin ( 7th grade) – Dance, skiing, cousins, friends,
fashion, and shopping. Preston (5th grade) – baseball, lacrosse,  skiing, friends,
 mountain biking, and  long boarding. Braiden (3rd grade)-  baseball,  skiing, more
baseball, mountain biking, and did I already say more baseball? Ammon (1st grade)
Caliou, Curious George , Buzz Lightyear, and Mom and Dad are grateful that I continue 
to progress (just at my own speed of course!). Mason (preschool)- life,  watching big bro’s
play sports, baseball, football, policemen, & my teachers and therapist who visit me at
home. Dad- good jobs, biking, our 2 vacations this year (Sun Valley  Ski Resort & Cali-
fornia beaches), helping coach baseball, & family.  Mom- staying home with her five
 Kiddos, running, family, Mason coming off of steroids finally, & naptime snuggles.
We wish you peace,
love, hope, joy, a
 Merry Christmas, and
A Happy New Year!


Thursday, December 22, 2011

Recipe for Rosier Cheeks

Mason's red blood cell count actually had dropped even more from last week when yesterday's blood draw results came back. Thus, the transplant team had us come up to Primary's late yesterday afternoon to be admitted overnight for a blood transfusion and some more testing. This definitely wasn't on my "to do list" this week to get ready for Christmas, but better now than on Christmas eve!

Today Mason has rosie cheeks again and seems to have more energy. I hadn't realized how pale he had really gotten until he woke with nice pink coloring today. The transplant team decided to switch him from Cellcept to Imuran in hopes Cellcept is the culprit of his suppressed red blood cells. Hematology is also looking at all of Mason's labs to see if they can find anything different or in addition that could be causing this. We will continue to follow up with Hematology in January.

We would have gone home early this afternoon today except Mason spiked a fever! Of course, right?! It most likely is a reaction to his blood transfusion, but they are keeping us here probably until sometime tonight just to make sure. We hope to get home to our family soon to finish getting ready for Christmas!

Thanks for your thoughts and prayers! Enjoy you Holidays!

Monday, December 19, 2011

Never a dull moment......



Happy holidays everybody!!! I'm sure most of you are busy getting ready for that special day coming this Sunday. I just want to take a moment to update you on Mason and share a few pictures.


Where do I begin? I am not sure, because I have been taking too much time in between posts! And then I've been wasting time trying to fix Mason's birthday post that has a complete mind of its own. It adds in strange spacing after I hit "publish" every time. Well, on to the update........


December 1st Mason had transplant clinic at Primary's. His echo showed great heart function and his trucuspid leak remains mild to moderate. Which is absolutely wonderful, because during, and for a while after, his bad case of pneumonia in June his leak was severe. Mason also had gained a whole pound in one month! That's huge for him! (He's not like most of us who can just look at a piece of chocolate cake and gain a pound!)


...then came the not so good news of the day.....Mason's sleep study report. He has moderate to severe sleep apnea and restless leg syndrome. 


What does this mean? For the wiggly leg issue the answer is the easier of the two. The docs upped his iron intake quite significantly (which in turn may also help with his too many loose stool diapers.....and help his weight gain). Right now for the sleep apnea, Mason needs to be back on O2's at night. He is such a stubborn little stinker that he rips the cannula off about an hour into the night (do you blame him? He dealt with that long enough already!), so I turn the concentrator up 4x the amount he needs and use a "blow by" cannula near his face. That works well until he turns his head during his sleep! In January we will see an ENT to find out if removing his tonsils and adenoids will help with the apnea. (This is quite common for transplant patients, because of the meds they have been on, which can cause swelling, sometimes the tonsils and adenoids remain enlarged even after coming off of those meds.) My hope is that this is the answer, so that Mason does not have to be on a c-pap O2 machine at night. 


Mason has also had a cold for the last 3 weeks or so, but last week it got much worse. Tuesday he woke with his eyes glued shut with green gunk and his nasal drainage kept getting greener and greener.  I tried prescription eye drops for a couple days, but then Thursday night he spiked a fever of 103 and was very lethargic. Friday morning we made a visit to the pediatrician. No strep and no ear infection, but it appeared Mason had developed a nasty sinus infection. As much as I didn't want to put Mason on another antibiotic because of his poor little tummy issues, that's what we did. His cold had remained too long, only getting worse. It needed to be treated before it settled next in his lungs.


All the above I can handle just fine, but then Friday (Dec. 16) soon after returning home from the pediatrician, I received a call from the transplant team at Primary's with results from Thursday's routine blood draw (If we don't have a clinic visit I take Mason to Primary's Riverton offices and lab for his weekly blood draws. It's much closer!). It was RN Emily. First she asked how Mason was doing. I told her about the fever, the doctor's visit, and I also mentioned that I was going to call them today to tell them that Mason's BP has been lower than normal. She told me the lower BP makes sense with his lab results. His RBC (red blood cell count) is way too low. It has lowered significantly in the last week despite the high amount of iron he is taking. I said to her "I guess that would explain why he's been so pale" (I just thought it was his cold combined with the winter time-no sunshine). Then came the unexpected news........she said the team was concerned enough that they wanted me to bring Mason in right away for some more testing.


Not really in my plans for the weekend; I packed us an overnight bag, made plans for my other kiddos' care after school, and headed up to Primarys.  The entire 45 minute drive, my mind was racing...... thinking of ideas of what could be wrong with little Mason now! I tried not to even think this, but transplant patients always have the possibility of developing autoimmune disease and/or cancers because of their anti-rejection meds. As my eyes filled up with tears of concern and worry, I prayed for positive thoughts and comfort.


Upon arriving Mason had more blood tests and a complete echo. 5 hours later...........after his echo showed good heart function and no changes, and a doctor's thorough exam, we came up with a plan that would allow us to go back home (for now), but be followed very closely. From a heart-lung stand point Mason is doing just fine despite what is going with his RBC's right now. If that was not the case they would have for sure admitted him. The additional blood work showed that Mason's bone marrow is not making new red blood cells. Not good. But at least it is still making platelets and white blood cells (which if not this would lean us towards thoughts of cancer, leukemia, or other major illnesses). 


What could be the cause and what next? Celcept, one of Mason's anti-rejection meds, can cause this if the level of Celcept he is on is too high. But that is one the levels we check in his frequent blood draws, and it is not too high right now! The hope is that possibly a virus (his three week long cold) in combination with being on Celcept, has stumped his red blood cell production. The docs cut his Celcept dose in half in hopes this would help his body restore its red blood cell making ability. Although doing this is kind of a two edged sword.....not enough Celcept could cause rejection! Yikes! Mason will have more blood tests on Wednesday to see if his red blood cell count has gone up. If not, he may be admitted for a thorough hematology work up!! Pray with us please for more red blood cells and no rejection! Mason for sure does not want to spend Christmas in the hospital!


Birthday Pictures:
Mason opened up new pj's the night before the big day.........

 and then he woke to a room full of birthday
balloons and streamers from the "B-day Angel"! 

 Mason had a very happy day! Most of it spent
cruising around the house on his plasma car.
(The car was not a b-day gift. He's had it quite  
awhile, but he loves it and rides it all the time.)

 Besides baseball and football Mason also loves policemen.
So, he wanted a police car cake...... and he got it!!!

Mason couldn't wait to play with his cake topping!

 All Mason wanted for his birthday was a baseball helmet.....

and batting gloves like his big brothers. 
 That was definitely easy enough for me !!




Thank you for your prayers and love! Hope you are enjoying this holiday season with your families! I will update with news soon about Mason's newest issue of the "diminishing red blood cells".

Wednesday, November 30, 2011

Happy 4th Birthday Mason!

mir·a·cle: "A surprising and welcome event that is not explicable by natural or scientific laws and is considered to be divine."  (~Webster dictionary)





mir·a·cle: Mason Andrew Strickland celebrating his 4th birthday.
Mason has defied all of the odds, laws of nature, medical explanations. Mason is one determined little boy with a special mission here on earth. We may never know what exactly his mission is, but he certainly has taught us all lessons about faith, hope, prayer, charity, endurance, joy, priorities, love, patience, and so much more.

We do know the miracle that Mason is, and the many miracles that have blessed his life, have been given to us by our divine Heavenly Father, the God of all Miracles. He has led and guided the numerous doctors and nurses that have taken care of Mason along this journey. He has held my hands though all the tearful and scary times, making sure I have never been alone. He has comforted Mason and our entire family through the many speed bumps we have encountered. He has sent many many "angels" by way of family, neighbors, friends, and strangers to help us these last 4 years. For Him, all of Mason's caregivers, and our "angels: I am grateful beyond words. . I am tearful today thinking and writing about ALL that has been given us and how truly blessed we are!!!
Today my heart is very full!

Full of:
GRATITUDE
JOY
LOVE
HAPPINESS
BELIEF

Dear Mason,
I want you to know how very happy I am today to celebrate this 4th birthday with you. In fact, better words would be... over-joyed and emotional. You are well deserving of a very happy day! You have been through so much in your short life. More than most of us will ever understand or experience! It's hard to believe that it was four years ago tonight that you came into our world. Although the journey at times has seemed long, it does not seem like four years has gone by. You are the sunshine in our family. You help us realize that we need to be happy just be alive! Your love of life is very special and contagious. Mason, your personality is one of kind and so absolutely fun. Your smile is radiant and beautiful. Your spirit and countenance is like that of an angel. I feel so lucky that you call me "Mom"!

Love and Hugs Forever,

Mom"


One of my favorite quotes that I've posted before, but want to post it again because it so fitting on this day!.......

“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle." (~Albert Einstein)



Happy Happy 4th Birthday Miracle Mason!


Wednesday, November 23, 2011

Halloween 2011



Late, as usual these last few months, but here is our Halloween 2011 post........ (In fact, it's so late it's just in time for Thanksgiving!!)


Halloween was a fun day and night at our house. Always a busy day with parades at school and class parties (especially with my kiddos at 3 different schools), but memorable none the less! Mason definitely understood much more this year about what was going on.........dress up "cute" (he told everyone they looked "cute") and then go out and collect as much candy as you can. Although, after awhile he decided he didn't really want to eat the candy (what kid doesn't like candy? Well, besides a heart kiddo with a a very miniature size appetite I guess!) he would take a handful of candy out of his bag and offer it to the person at door where we were trick or treating! Of course my other kiddos thought he was crazy to offer up his candy!





Mason was one very cute little skeleton.


Ammon went as an adorable "2 for 1",
Bullseye and Woody from Toy Story.


Braiden, our young sweet homeless boy, told
everyone he was a "hobo". (I'm honsetly not
sure how or when it started, but my kids have
always called homeless people hobos. Braiden
has always been the most fascinated with hobos,
especially after visiting downtown San Francisco
when Mason and I were at Stanford! 
Kids are so funny!!!

Preston, dressed as one of the scariest zombies 
I have ever seen. I heard all the kids at school
were freaked out by him! (Thanks to Sammi 
who was his personal make up artist.)



Kaitlin was the prettiest Elmo Sesame Street
has ever known. 


Carving pumpkins is always a messy yet fun 
traditions at our house. (Notice, Mason in a 
hoodie, diaper, and shoes......that's his normal
outfit lately, because his pants just won't
stay on his tiny little body!!)


My three oldest are stinkers about letting me
take pictues of them, but let me tell you.....
they had no problem playing with matches
to light up their jack-o-lantern's and then
taking my camera to get pictures of their 
works' of art. Oh for the love of kids!!!




Mason was definetly ready for "trick or treating".
Ammon was not in the mood for pictures,
he just wanted to get out and collect candy! 



Ever seen a cuter skeleton with a bigger smile? 


Mason is busy most of the day cruising furniture or 
crusing around the house with his reverse walker.
Not yet walking on his own, but he's definely proud 
of his hard work and accomplishments!

Watch Mason in action.....
video


Way to go Mason!!!




HAPPY THANKSGIVING FROM OUR FAMILY TO YOURS!

"Ours is the responsibility to show our gratitude by the actions of our lives." 
~Thomas S. Monson

"Despite the changes which come into our lives and with gratitude in our hearts, may we fill our days-as much as we can-with those things which matter most. May we cherish those we hold dear and express our love to them in word and in deed."
--Thomas S. Monson

Wednesday, November 9, 2011

Mason's Make A Wish Journey



 I think most everyone has heard of the Make-A-Wish Foundation, but if you haven't let me just tell you it is a very special and absolutely amazing foundation! It is a national foundation with most states having their own chapter. They are a non profit foundation which sets out to grant the wishes of children with life threatening illnesses. Their main goal is to give back to these children what there illnesses have taken away- laughter, strength, joy, and hope. In order to make this possible they receive a lot of help, volunteers, and donations from the community. Please click here to read more about what they do, some of the special children they have granted wishes to, and maybe how you can help too: http://utah.wish.org


I knew personally about Make A Wish because we've had two nieces and a nephew who were born with Muscular Dystrophy and have all been granted wishes. In fact, about a week before Mason was born our family had joined our niece Madeline at her wish making party. Never did I dream or fathom that my soon to be born little Mason would also be granted a wish someday! (Remember Mason was not diagnosed in utero with his heart disease!!!) Also, as I look back upon Mason's almost 4 years of life I cry thinking about the many miracles that have saved his life thus far, enabling him to even be granted a WISH!




In July Mason and our family received a visit from two wonderful
wish granters from the Make A Wish foundation. Sherrie and Jannessa
brought Mason some balloons and a bucket full of fun surprises. He
didn't know what to think or what was going on. But, he definitely liked
the new gifts, especially the baseballs!!! 




During our visit they explained to us how the wishing process
 works and shared with us a few wishes that other children have
 been granted.  One important step of being granted a wish 
is receiving doctor's approval. Knowing this ahead of time, I had 
already done my homework and discussed different options with 
Mason's transplant team at Primary Children's. One very popular 
wish is spending a week with your family at Disney World in Florida. 
So I asked their opinion on Mason receiving that as his wish and
they said they were not comfortable with him traveling that far away 
from Primary's or Stanford, especially with how sick his lungs got 
this summer with pneumonia. Needless to say, my other kiddos were
disappointed about this!!! (But, hey it's Mason's wish anyways.) 

(Mason and big brother Braiden playing a 
little baseball during our visit.)


I had also already asked if Mason could wait to be granted
his wish until next year when he was a walking, talking more,
and further out from transplant. But, unfortunately with heart
transplant kiddos the protocol is within 18 months of their
 transplant they need to receive their wish. So, we decided we 
would take some time as a family to help Mason come up 
with a wish ......keeping in mind he needed to have his wish
 granted before the end of October. 


Once Mason had a wish in mind (with just a little help from us)
we were to call his wish granters to let them know. They would
then schedule his wish making party at their Wishing Building 
in Salt Lake City, where he would officially make his wish in the 
special "wishing room".  Following Mason's party his wish 
would be granted soon thereafter. 

Although........ as most of you know,  Mason
doesn't usually like to follow normal guidelines. 

Once I spoke with his granters about what we had decided, 
we tried to set a date for his party. But, with fall sports and school 
activities we weren't able to find a date that Make A Wish also 
had open until October 7.  Now here's the out of order non-normal 
way of receiving a wish: On October 3 I received a phone call that
 Mason would either need to have his gift installed on October 6
 or not until the end of November, because the installers were
 booked up! So if Mason wanted to enjoy what was to be installed 
before it got too cold I definitely chose the earlier date. Thus, 
Mason was granted his wish before he even really wished for it! 
And, just one day before to be exact!


October 6, 2011



Mason watched for hours as his special wish was installed!
He was so very excited that he did not want to leave his 
front row seat at the window. I knew then we had helped
him make a great wish choice!!!



Introducing.........."Mason's Park" as he calls it!
As soon as the play set was completely installed, 
Mason said to me, " Jacket mom! Help me please! Go
swing now!" So we put on our jackets and out we went. 
His smile couldn't have been any bigger!!!



While at Stanford before and after his transplant, Mason
and I would visit the park everyday, sometimes even twice
a day. His favorite thing to do was swing. Since we've been
home, life doesn't allow us as much time to visit the park quite
so frequently, but at brothers' baseball games this past year
you could always find Mason on the swing set. Even when the 
games were over for the day he didn't want to get off his swing!!!


So now Mason has his very own park. Of course,
he is very kind to share it with his siblings and the rest
of the neighborhood. In fact, I'm thinking of making a 
sign that reads:

  "Welcome to Mason's Park. 
 You may stay and enjoy until dark
  but, PLEASE remember to take
 your socks, shoes, and jackets with you!"

Because, let me just tell you .........we have accumulated 
quite a collection of homeless items in the last month.





(Ammon enjoys it just as much as Mason! Out to
 the play set is the first place he goes after school.) 


What a perfect wish for Mason! We couldn't be more 
grateful for Make A Wish and their kind gift to
our one of a kind Miracle Mason!!!




October 7, 2011


Welcome to Mason's wish making party!


Mason was given a gift bag full of more presents from
his sweet wish granters. Of course lots of sports items!


The blue mitt was a big hit. And still is...
He sleeps with it every night!



We celebrated with yummy cake, chips and pop.
(hmmm....chips? His wish granters sure knew what he likes!)


Family and friends that joined us that night 
signed Mason's pages in the Make A Wish scrapbook.


Each wish child gets their own star to hang up in the
Wishing Building. I was given the responsibility to write
on Mason's star. Each star is hand made from glass and 
unique just like each child is so very special and unique.


It was a fun evening for Mason. Many of his cousins
were there to help him celebrate his wish.


Soon the time came to visit the "Wishing Room".


Mason was given his very own special key to unlock the door.


Everyone joined us in the room and watched as 
Mason officially made his wish.


The room was almost magical with its 
special lighting, music, and waterfall!


 Mason placed his wish (written on a rolled of 
piece of paper and inserted into a rod iron capsule)
 into the top of the wishing wizard's hat. And then
the true magic began. The lighting in the room
began to change into all the beautiful colors
of the rainbow.  Feelings of peace and hope
filled the room...........







 





Mason was definetly the shining star of the evening!



As you can see in the pictures,
he wanted to walk instead of being carried
the entire night! He felt like such a big boy!
(He's still needing assistance to walk, but soon
he'll be running around on his own.)



Hundreds of star hang from the ceiling on the 
first floor of the Make A Wish building.




Everyone watched as Mason helped raise his star.


Mason's star now joins the stars of 3 of his cousins
and those of many other very special kiddos. Mason 
is also invited back to visit his star and the wishing
room at anytime.


Mason will always hold a special place in his 
heart for his wish granters, Sherrie and Janessa.


Thank you Make A Wish from Mason and our family for
 the play set and a wonderful and very memorable evening!



Good bye Make A Wish! We will visit again soon!


A quick Mason update:
1)Two weeks ago we met with the nutrition clinic at Primary's to talk about how to put some weight on Mason. After running several blood tests and stool sample tests we sill don't know why he's had diarrhea since June! So now we are experimenting with different G-tube formulas to see if that will help. I prefer to do blended foods, but right now we are trying to see if he has some food intolerances and the easiest way to do that is by process of elimination. (We've already done food allergy tests, which all came back negative. But, sometimes there can still be intolerances.) They also started Mason on a medicine which should help increase his appetite so that he will take more in by mouth. So far it seems to have helped a little bit. He is down to 22 lbs and should at least weigh 28 lbs for his height! Part of the issue is also that he has become so much more active coming off the steroids..... thus burning a lot more calories. 
2) At cardiology/transplant clinic that same day Mason's echo looked terrific! Although, his chest x-ray showed some haziness in the lower lobe of his left lung. Possible pneumonia would explain the persistent cough he'd had for 3 weeks. So he was started on an antibiotic. It helped the cough thank goodness, but only made the diarrhea worse (along with a miserable yeast rash). One step forward, two steps back! No, honestly I am so glad we got rid of his cough, before it turned into a pneumonia that checked him into the hospital!!!
3) Drum roll please............Mason is completely off of steroids! A long time we've been waiting for this. 18 1/2 months, that's all! Now we just have to pray he stays out of rejection so he can steer clear away from the "return of the steroids".
4) As I finish up this long post (it's only taken me two weeks), I am sitting next to Mason who finally just fell asleep (at 12:15 am, November 10th) as he is hooked up to at least 50 different wires in the sleep lab at Primary Children's. The transplant team has wanted us to do this since June to look for possible sleep apnea, which is frequently common among heart transplant kiddos. Mason has cooperated much better than I thought. With a just a few tears he let the techs hook him up without much of a fight. Wow he's come a long way with these hospital over-nighters! You are a trooper Mason!
5) Mason enjoyed a fun Halloween as a darling little skeleton. That will be my next post and hopefully you won't have to wait 2 weeks for me to post it this time.


A quote to leave you with:

  Hope is one leg of a three-legged stool, together with faith and 
charity. These three stabilize our lives regardless of the rough 
or uneven surfaces we might encounter at the time
~President Dieter F. Uchtdorf~