Tuesday, March 31, 2009

16 months old

As of yesterday (March 30,09), Mason is now 16 months old! A great accomplishment for a little miracle heart baby.

He is a 16 month old happy "half-hearted" baby with
  • 13 teeth ( at least double the teeth my other babies had at this age)
  • 2 ear infections (poor little guy)
  • 10 little purple finger nails
  • 10 little purple toes
  • 2 little cold & purple feet
  • 1 big smile (when he can forget about his ears right now!)
  • 2 lips that are a lovely shade of reddish-purple
  • 16 lb's 8oz's on the scale

At 16 months he likes to:
  • play peek-a-boo
  • give "5" (if asked he will hit your open palm with his)
  • scoot all over the house (preferably tile or wood over carpet 'cuz he can get more speed)
  • scoot into the open pantry and see what surprises are within his reach
  • taste anything he finds (not necessarily a germ friendly practice :)
  • empty out drawers and cupboards he can reach from his 'scooting' position
  • give kisses
  • wave "bye bye"
  • jump and spin around in his "johnny jumper"
  • laugh at his sis & bros doing funny things (they love to jump & dance around to make him laugh)
  • follow Mom or Dad (scooting) until he gets picked up
  • be held and snuggled
  • go outside

At 16 months he does not like:

  • when Mom puts him down and walks away
  • to lay on his tummy
  • to be put in the crawling position (still prefers to scoot on bum)
  • anyone in scrubs
  • his own bed (or really going to sleep at all)
  • any woman who doesn't look like Mom (I think he believes everyone else is a nurse!)
  • anything taken away from him (he gets so upset that sometimes he starts to turn blue)
  • when Ammon gets too close (quite often his loving cuddles are a bit rough for Mason)
**someday though, Ammon & Mason will be best buddies**

What's been happening at our house:
So, life continues to be very busy keeping up with five children running in different directions all the time. From too much homework, to doctors appointments, to baseball tryouts, to soccer games, to meetings with teachers and therapists,to birthday parties, to griping at the kids to do chores, and then getting a nasty sore throat flu at our house last week, I definitely haven't had time to smell the flowers (it's snowing again anyways), take more than a 2 minute shower, and for sure not sit down at the computer to blog!!

Little Mason has been sick w/a yucky cold, sore throat and double ear infections. He has been on two different antibiotics to try and clear them up. He needs to have new tubes put in, because the ones he had placed a year ago have worked their way out of the right spot in the ear drum (which happens normally with growth). My kids just have bad genetics when it comes to ear infections. I am trying to coordinate his tube surgery to be done at the same time he is sedated for his echo next week on April 9th. Hopefully that will work out.

As for his heart, he will have his echo next week which should give us some answers about how he is really doing. Honestly, I have anxiety about his echo and the truth about his heart's condition. The last few months his little lips, fingertips, and toes have become more and more purple. Also, the last 6 weeks or so he has gotten a lot more exhausted when scooting around and also when eating (especially nursing....yes call me crazy 'cuz he does have 13 teeth). He starts breathing really hard and then he will just stop what he is doing for a while to take a breather, or doze off while feeding for a few minutes, because apparently he uses up his energy. His sats also have been low to mid 70's which is still okay, but since his Glenn surgery he had been low to mid 80's. If he were to be in need of his 3rd surgery already, he is too tiny. They want him to weigh between 25 and 30 lb's !! Well, with all my speculating I just begin to worry myself, so I best wait 'till next week for the echo.

The good news is that we have seen no recurrence of his arrhythmias so far. We have done two 24 halter monitors since the cardiologists took him off his arrhythmia meds that have shown no arrhythmias. Thank goodness! But, I will say my hope of him sleeping better off the meds has not come true....I think he just has a bad habit now of waking up every hour or two! Someday he will learn to sleep all night long and I will wake up and think I am dreaming. For now, one day at a time, no more like half an hour at a time is how we operate at our house:)

Some Humor for a Heart Mom
At one of our doctor appointments these last two weeks, a new nurse at our pediatrician checked us in. While checking Mason's O2 sats I noticed her begin to get a really scared, frantic look on her face as her eyes went from the pulse ox monitor reading 72 to his purple lips then to his little purple finger tips. I'm pretty certain she was about to yell "call 911" when I said, "oh, I am sorry, 72 is okay for him. And this shade of purple is his normal lately." She sighed a big sigh of relief. I felt bad that I forgot to warn her, like I normally do to a nurse that doesn't know us. But it did give me a silent giggle moment, even though it gave her quite a scare!

I will update after Mason's echo next week.

Thursday, March 12, 2009

Mason's Smiles

(Mason's 15 Month old pictures that I had trouble loading
on to my February 28 "Hold on to Dear Life" post)

Mason's Smiles:

Look at Mason! He loves to smile for the camera!
He was 15 months old on.... Feb. 30th , well
since there is no Feb 30 I guess it was Mar. 2nd.
And the big news: he almost hit 16lbs!

Mason still thinks he does not need to sleep much!
He spends most of the night being spoiled in my arms,
but occasionally I can transfer him to the swing for a
break in the middle of the night! I don't know
what I would do without this swing!!!

Mason loves to play with his brothers and sister! They
always make him smile and laugh. This is Mason on
big brother Preston's back. You can sures tell they
are brothers. I think they have the same smile.

Mason is wearing his "24 hour halter monitor" here. The first
time, (since he was really little)is in this picture in February.
He didn't seem to mind it much. But this week we did it
again and he was pretty upset about it. He wanted to rip
it off! This is to check for arhythmias since we stopped
his aryhthmia medicine. The first one showed no problems.
And the second one I haven't heard back on yet.

Mason is scooting all over the place and getting into
everything down on his level. He was trying
to play legos here with his big brothers. After
he scoots across the house he is usually breathing
really heavy. It's a lot of work for a broken-hearted
little guy! We love to see him move around though!!

Mason still fits in the kitchen sink for a bath.
Sometimes that is just much easier!
And look how good his scar looks.
Vitamin E oil has been our secret potion.

Mason likes to sit up at to the bar with all the other kids.
He feels so big to join in their fun.

I came across a quote this week while reading the book
The Silhouette of a Wish, during some of my late night
hours with Mason when he doesn't want to sleep. I love
this quote because it definitely pertains to my life!

"Affliction comes to us all, not to make us sad, but sober;
not to make us sorry, but to make us wise;
not to make us despondent, but by its darkness
to refresh us as the night refreshes the day;
not to impoverish , but to enrich us."

by: Henry Ward Beecher

Have a great weekend! Thanks for being a Miracle Mason fan!
With gratitude, Summer

Monday, March 9, 2009

Enjoy the Journey!

Saturday, Mark, Kaitlin, and I had the opportunity to attend Gracie Gledhill's funeral. I must say it was a very emotional day for me. I know the only other time I ever have cried like that was the day my little Mason crashed...was Life Flighted...and then diagnosed! My heart hurt for Gracie's family so much. It also seemed too close to my own reality, having our own baby with the same congenital heart disease.Although, through all my tears, I was very touched by the beautiful spirit of love and faith that radiated through out the entire funeral.

Their family did a wonderful tribute to their sweet Gracie Girl. They celebrated her triumphs, her milestones, her smile, her courage and more than anything how they ENJOYED THE JOURNEY they have had with her for the last 11 months. There was not one complaint of the trials, but only appreciation for the blessings she has brought to their family and hundreds of others (through her blog). Oh, how I admire this family! They took a very big trial and turned it into pure happiness.

Gracie's dad spoke of the Eternal Plan of Happiness that our Heavenly Father has given us. The plan which brings them much joy and hope at this time. The plan that is about eternal families and the ability to be together forever someday. He spoke of Gracie being greeted with open arms, not only by our Savior Jesus Christ, but also by her aunt, uncle, and great-grandparents as she returned 'Home'. What a joyful sight to imagine. Thank you to the Gledhills for sharing such a wonderful example of faith.

I myself am grateful for this beyond words in my own life. Yes, of course the thought of losing someone near and dear to me, especially a child, or seeing the dear Gledhills say "Goodbye for now Gracie", makes me extremely sad, sad beyond words, and very broken-hearted, but at least I have hope and faith that families are forever!

I came home from the funeral and greeted my little Miracle Mason with tears rolling down my face, who had been home with Grandma. I held him closely and said "I love you Miracle Mason and thank-you for being mine". My life has ever so changed since he was born, but only for the better. My goal is to always ENJOY THE JOURNEY, as the Gedhills did with Gracie, with little Mason and my other 4 children, because we never know how long we will be blessed to have them with us!!

On the back of Gracie's funeral program was one of my favorite scriptures: "But Jesus said, Suffer the little children, and forbid them not to come unto me: for such is the kingdom of heaven." I feel that our children are a bit of heaven on earth, especially these little "heart babies" who left half their heart in heaven!

Thank-you again to the Gledhills for allowing us to know your beautiful Gracie and for the wonderful trubute we were able to attend in honor of her.

Tuesday, March 3, 2009

Angel Gracie

I am writing this with a very heavy sad heart this day. Sweet Gracie Gledhill has returned home to live with our dear Father in Heaven. She has left an amazing legacy behind in her short 11 months here with her family on earth. She has touched so many people by her miraculous story and her sweet spirit. I know my family personally has been touched by her story and by her family's faith and strength.

I began following Gracie's blog last March right after her first surgery. I had linked to it from Kaidence's blog (we met Kaidence and her wondferful parents in the PICU Dec 08 when Mason had his first surgery and when she received her new heart). There was a post that had asked for prayers for baby Gracie. I instantly became attached to Gracie's blog and her story. Not only because she had HLHS just like Mason, but because she was a also a miracle beating all the odds.

I've since had the opportunity to meet sweet Gracie and her special parents. We actually met in the PICU last April when Mason was Life Flighted for tachycardia. Ironically enough, they live here in Highland only a few miles from us and in a neighborhood we almost built in 4 years ago. Over the Months I have become friends with Michelle, Gracie's Mom, and we have called each other to talk diaper rashes, heart meds, and and just about the crazy but special life of a heart mom. I truly admire Michele and how dedicated she has been to Gracie and her other children. I have loved reading her blog and learning from her positive outlook on life.

I know Gracie has fought all her body could fight. She is in a much happier place now, but even knowing this does not make it much easier today. This has just hit too close to home, with how many times Mason has almost slipped away in front of us! I have cried many tears over Gracie, and she is not even mine! This being said, it is hard for me to fathom Michelle and Tom's heartache yesterday to say, "goodbye for now" to their beautiful Baby. I am grateful for the Gospel of Jesus Christ who has taught us that "Families can be Together Forever".....so that we will see our loved ones,who pass on before us. again some day.

Even my sweet Kaitlin has been so upset since I told her yesterday that Gracie was ready to return home to our Heavenly Father. Quoting her, "But Mom we have prayed so much for Gracie. Everyone has prayed so much for her! Why can't the doctors just fix her heart one more time?" We cried together as I explained to her 'that our prayers were answered. Just not the way we imagined. She is no longer in pain and she is much more comfortable now in a very happy place. Heavenly Father has a plan for each of us and we do not always know exactly what that is. And now some other child's life will be spared and their family's prayers answered because Gracie's parents have donated her healthy organs.

A note to Gracie's Family:

Dear Gledhills,
We will continue to pray that you may feel comfort and peace until you meet up with your Angel Gracie again some day. Thank you for your example of hope, love, strength, and faith. Thank you for your friendship. Thank you for allowing your sweet Gracie to change our lives.

Sincerely with Love, The Strickland Family