Finally, a bit of good news!

(This was one of the cute pictures taken by

Blue Lily in June. Mason was 18 months old)

On Monday (Oct 5), Mason had a cardiology check-up and ECHO. For the first time since April we we finally received some good news! Mason's ECHO showed some improvement in his heart function!! When Dr. Everett told me this my eyes instantly filled with tears. It was so wonderful and comforting to have tears of joy instead of tears of fear and heart break. Although, Dr. E did continue to say, "not normal, but better" .....this news still brought me a spark of happiness and hope. Okay, so this doesn't solve his left pulmonary vein problem or his incapability to receive a heart transplant, but at least seems to offer sweet Mason a small improvement in his quality of life for the time being. He has seemed stronger and has needed less O2's so this news definitely seemed to make sense.

It is speculated that all his heart failure meds are finally helping. I also know that because of so many prayers and fasting on Mason's behalf, our wonderful Father in Heaven has extended his hand once again to help our Miracle Mason at this time. This is a true reminder to me to keep faith and hope in the power of prayer and in the belief that 'miracles happen'. This may be small in the perspective of his whole prognosis, but even small improvements and tiny bits of good news lead to increased hope!

Mason also continues to gain weight, thanks to his G-tube. He he has gained 3 lbs since mid July when he got his g-tube. He is 19 lbs now! This is huge for Mason. It does make me sad though that most of his food/ calories he gets through his G-tube now, because he refuses food most of the time. He once was a very good eater and his heart failure has taken away his desire to eat. But, on the bright side, at least we had the g-tube put in when we did.

THE WAITING GAME

We are still waiting to here from most of the hospitals that have received Mason's medical history. His info was sent out to for their opinions on a Heart-Lung Transplant:

St Louis Children's Hospital, Children’s Hospital of Pittsburgh, CHOP- The Children's Hospital of Philadelphia, University of Florida at Gainsville , Natonwide Children’s Hospital Heart Center in Ohio,

John Hopkins Hospital in DC, Texas Children’s Hospital in Houston, and Lucille Packard Children's Hospital at Stanford, and Cook's Children's in Ft. Worth,Texas (Cook's doesn't do Heart-Lung, but they have a doctor who specializes in PVS -pulmonary vein stenosis).

So far we did hear a definite answer from only two of these. Both Nationwide and Pittsburgh said that Mason is too high risk for a Heart-Lung Transplant due to his Level II antibodies being too high. His Level I are 0%, but his Level II are 95%. For just a heart transplant that is okay, but lung transplants have a much higher risk of rejection. Although, on a more positive note, we have heard from Texas Children's and CHOP, not with a final answer or opinion, but they both are presenting at their care conferences to their medical board, the possibility to do just a heart transplant to his right lung which is healthy and has good pulmonary veins. I'm trying not to get my hopes too high, but we didn't even know this was a possibility. So needless to say, it is definitely a ray of hope and sunshine upon the dark, sad news I have been dealing with for the last 5 weeks!

Thank you to so many for the donations to Mason's medical fund. This is so kind and so greatly appreciated. I am so amazed at the extreme kindness from people we do not even know! All of the donations and money made at his fundraisers will go to help with medicine and medical bills. Thank you, thank you, thank you!!!

We hope to see you at Miles for Mason tomorrow! Also, I will post the flier for the November 5th dinner in a couple days.

(Family Picture by Blue Lily in June)

Happy 22 months Sweet Miracle Mason!

Dear Mason, we are so blessed to have you in our family. Happy 22 months (on Sept.30th)! You are a true miracle!

Mason wants the camera every time I try to take a picture.

Mason has worn oxygen for 6 months now! I almost forgot

how adorable his cute little face is without it! This was

after a bath. He needed new stickers and a new cannula.

One night Mason decided he liked pizza! We were so excited.

But he hasn't liked it since, it just it ends up on the floor. Darn!

This is Mason's very favorite toy! (Thank you Muaina Family!)

Mason loves to brush his hair. And notice he is sitting

in a pyrex dish. He still puts his little bum in or on

whatever he can find and scoots around the house.

Helping big brother fold laundry is always fun, because

then he gets pushed around the house in the bucket.

Mason has so much fun scooting down the stairs!

(Well ,except for when he fell and pulled out his G-tube!)

Kaitlin, Mason's big sister turned 11 this month.

Happy Birthday!!!

Too bad ice doesn't have calories because he loves to chew ice!

He enjoys riding this rocking horse and once you put

him on it, he does not want to get off.

Mason has figured out how to get up the 2 steps from

the family room into the kitchen. Way to go!

What can I say? He is Mister Happy all the time!

At least he's always got his on toys on had at all times.

O2 cords!

Mason is really into dumping toys out of their container

and then putting them back in. And look at him

tangled in his O2 cords and not bothered by it at all.

Braiden and Mason have matching shirts so Braiden

coordinated their outfits and wanted their picture taken.

Oh how Mason's siblings adore him!!!

********************************************************************

Mason Update:

On September 18th, 2 weeks after the heart-breaking news of Mason's 'pre-transplant' heart cath, we went to Primary's and met Dr. Kouretas (Mason's Heart Surgeon) and Dr. Everett (Mason's Heart Failure Cardiologist). Mark and I felt like it was important to ask for this meeting to hear Dr. K's thoughts on Mason's cath lab results, as well as his opinion on Mason's prognosis. Dr. E had also pulled up all Mason's past Operating Room reports, sedated echos, cath lab report before the Glenn.......basically anything that would give her and Dr. K a look at his pulmonary veins that have caused us this huge obstacle.

I thought that waiting 2 weeks was long enough for me to get through this meeting without crying, but I didn't get 3 words out without crying. Good thing there was a few boxes of kleenex in the room to get me through the meeting. Mark ended up getting called out of town on business so I was the only one there asking the docs all our questions.

Dr. K expressed his sadness for us. He also expressed how difficult it is for him and his team when they have a case like Mason's when they can no longer palliate or correct his heart disease surgically. He did agree with us on seeking more information and opinions on a heart-lung transplant for Mason. He was not very optimistic about it, because he said they are very high risk, but said seeking these opinions will help guide us in a decision. I even asked him what he would do if this was his child (Dr. E had already told me the day of the Cath she would never put her child through this type of transplant). He said he'd like to say he wouldn't because of the statistics, but said he truthfully couldn't answer that because he's not in our shoes. This made me feel better, knowing he understands when your own loved one is involved it would be very difficult not to keep fighting.

I asked if his PVS (pulmonary vein stenosis) was something we could have seen sooner , in time to have corrected it or listed for a heart sooner before his 2 veins were completely obstructed. As they both reviewed all the above mentioned reports, they noticed that his lower left P vein had probably been diseased and narrowed since birth. During his first open heart surgery at 10 days old, the OR reports show turbulent blood flow in that vein. So that one has probably continued to narrow over time, just part of his heart disease. They wouldn't have done anything to correct it or list for a heart because it is ok to have 1 of your 4 PV's not working. ( There are 2 on each side of the heart going to each lung).

As for the other left PV that closed off, it had been fine even in his heart cath before the Glenn (his 2nd open heart surgery at 6 months old).....but speculation is that a blood clot may have narrowed it and eventually closed it off. This is very possible because Mason had a blood clot in his SVC (superior vena cava) since 1 month old that we treated with shots everyday. It was there still at his pre-Glenn cath. but 2 weeks later when his Glenn was performed it was not there anymore. Dr. K had planned on removing the clot during the surgery, but had reported to us it was not there! I'm not clear on why the OR report at that time would not have shown an obstruction or narrowing in that upper left P vein if this is the case.?? They believe that the upper vein may be diseased just like the lower one, so if a clot did get caught in there and began to narrow it....it just was not strong enough to stay open. The questions I asked that day seemed to create more questions in my mind!

Although you can always continue to say "what if?"......and "how come"....... I'd rather just take what the situation is now and GO FORWARD WITH FAITH.

We did have Mason's info sent out to 7 different Children's Hospitals so we should start hearing back next week! Oh how I'm praying for optimistic opinions! Dr. K did also offer to sit down with us when we get all the opinions back and go over them with us. He wants to help us understand the other hospitals' answers and help guide our decision if we we would like. As for Mason's prognosis, something I try very hard each day not to think about, both Dr. E and Dr. K say its hard to know..... but that his months with us are probably numbered. Unless of course there are still more Miracles in store for our Miracle Mason!!!!

THANK YOU

A big thank you from our family goes out to all of you for your concern, kind messages, amazing acts of service (meals, house cleaning, help with laundry, help with homework, yard work, planning of fundraiser, donations....and much much more) and most importantly your prayers on our behalf. This has been a very hard month emotionally for me. I couldn't do it with out all of your support! Thank you, thank you!!

For now, I will continue to enjoy every minute I have with my precious little boy! I will never complain again about sleepless nights, for now it just means more time with my Miracle Mason!

Mason's G-Tube Accident! Oops!

(Mason is kicking back in the stroller in hospital pajamas

on Tuesday when had to get a replacement g-tube button.)

Sweet Mason had a little accident on Sunday night and I feel awful about it! After I was done giving him a G-tube feed I got him down out of the high chair, and then when I would have usually taken out the little 12 inch extension ( it is connected into his g-tube button when giving meds or a feed), but I got distracted when I saw Ammon standing at the top of the pantry shelves. I quickly tucked the extension into the waist of his pants (but not all the way I guess), and hurried to get Ammon out of the pantry. In the mean time Mason scooted straight for the basement stairs (hmmm... someone left the door open, because normally I have someone be with him when he scoots down)..started scooting down, but must have slipped on something....a toy, O2 cord,...and tumbled to the bottom, ripping the g-tube extension and button right out of his tummy on the way down! Oh, was he screaming! It was awful!


I quickly grabbed my emergency g-tube kit and frantically reviewed the instructions on how to insert a temporary tube. I had been taught after his g-tube surgery that you need to do this within 10 minutes! Then, Mark held poor little Mason while I (why me?!!) tried to insert a temporary tube into the little whole in his tummy. Mason was screaming so hard we were scared for his little broken heart! All our other kids were crying!It was horrible! I could not get it in so I called the GI doctor on call at Primary's. He tried to talk me through it and even said to try re-inserting his button or try a size smaller tube from my kit. Well, two problems...my kit only had bigger tubes than the one he had in and only one packet of sterile lubricant! Yikes! I couldn't get the button in either, used up all the lube....and his whole had already started narrowing.


We sent our kids to get our neighbor who is a nurse at Primary's (thanks Michelle) to come help! She had much steadier hands than me, but she had no success either! We finally decided to insert a NG-tube (much smaller because its the one that goes down the nose), because I had some unopened ones from when Mason came home from his first surgery. (We've got our own medical supply and pharmacy here at our house! ) At least the NG would hold a small whole open and I could still give him his night meds. We were embarrassed but, the doctors were actually quite impressed with our plan.


Then we headed for the ER room at Primary's to either get him a new button or a better temporary g-tube. 4 hour later at 2am we headed home, after making Mason completely miserable being poked all night in his tummy (completely awake, with no pain meds, besides the Tylenol I gave him at home) , crying every time another doctor or nurse came near him, they finally inserted a temporary tube 2 sizes down from his button. And we learned along with the ER staff, that the hospital doesn't even stock G-tube buttons. They have to be special ordered! Crazy!!


Tuesday, Mason and I headed back up to Primary's for an all day stay! He had to get a new button placed through same day surgery (after it had been ordered of course on Monday for same day delivery....crazy they don't stock them in the GI clinic!) Because of Mason's heart condition, there is always serious concern with any kind of anesthesia, but there was no way they were going to do it with him awake...for his sake and the doctor's! He always has a cardiac anesthesiologist so I know he's in good hands, but it's still hard to leave your baby as he's crying in the arms of a nurse he doesn't know.


All went well, and I will do my best to make sure that never happens again!!!


A few lessons learned....never leave the extension in, keep the pantry shut (it has a lock, but that doesn't help if it is left open!!!!), keep the basement door shut, have a better prepared emergency g-tube replacement kit (in fact, the doctor ordered 2 extra buttons and 3 smaller temporary tubes for my kit) and guard that g-tube button with your life......Sunday night was a nightmare! More pain than Mason needed right now!


While up at the hospital I met a sweet young Mom, she was maybe 20. Mason and I were standing near the radiology waiting area (Mason needed a 'barium x-ray' to make sure the new button was placed correctly) and she came over to me to say, "He is so cute". Then noticing his oxygen tubes and his hospital pj's he was still in from the g-tube surgery, she asked "What is wrong with him?". I explained he was just there today for a minor g-tube surgery, but that the oxygen was because he was born with a heart disease.

Then she asked, "what can they do for his heart?". And as I began to tell her he'd already had two open heart surgeries her eyes began to fill with tears. At that point I decided not to explain that now he needs a new heart and lung, she had already been emotionally touched by a simple beginning of his story. I asked her why she was here with her baby girl and she told me she was getting an ultrasound because of a reoccurring bladder infection, but then she went on to say ...."this is nothing compared to your little boy". She was so concerned about Mason that she then asked, "He is going to be okay?".......I pondered a moment and then holding back my own tears I gave her the short but sweet answer I give my kids...."We sure hope so, and we feel blessed he is ours." I then wished her luck with her little girl and we headed on to get Mason's x-ray.

Little did that sweet mom how she had touched my heart that day. All the way home I cried just thinking about her tears over his two heart surgeries. She had no idea about the rest of his diagnosis or prognosis. She helped me realize once again what a true Miracle he is in our lives. What a Miracle it is that he lived past 3 days old! What a Miracle it is that he looks so good and is doing so well right now with what was seen on his heart cath just 4 weeks ago! What a Miracle it is that he is now 22 months old! And I honestly ask myself..... how can such a sweet, adorable Miracle like Mason bring you so much joy and happiness but yet now with his latest diagnosis, bring you so much heartache and fear? I am grateful to my Father Above for the gift of Mason in my life. I continue to pray for more Mason Miracles and for His comfort and guidance for the rest of our journey that lay ahead.

Miles for Mason Update

The following e-mail was sent out to our neighborhood/ ward and then I forwarded it on to my e-mail contacts:


The Miles for Mason Bike Ride is coming up soon.

Saturday October 10

But we have some great news!!!! We have added a "Kids/Family Walk"!!!!
It will be a 1 mile walk through the neighborhood of Dry Creek, so it will leave the parking lot of the Stake Center and end at the same spot!!

The suggested donation for the "Kids/family Walk" is
$5.00 per person

Registration for the Bike ride and for the Walk is 7:30am - 8:45am

There will be tee shirts for sale
$8.00 for kids
$10.00 for Adults.

Please join us for this Fundraiser

***If you have questions about this event please contact: "Alejandro Vargas" AVargas@dialogue-marketing.com


***The Charity Dinner in honor of Miracle Mason will be on Thursday November 5th at the Alpine Country in Highland. I will post the flyer with more details as soon as I recieve it. With donations for the silent auction during the dinner please contact Scott and Susan Bland at: 801-310-6864, 801-369-0952, or sbland@pmidirect.com

Miles for Mason

We have some wonderful neighbors and friends who have put this together for our Miracle Mason:









We would love to have you all there! Also, look for upcoming details for a charity dinner in honor of Mason sometime in November.
If you or know someone who could donate something to the silent auction that will take place at the dinner I will post soon who you can notify about the donation. Thank you!


PS... Thank you for your continued prayers. Mason continues to do well at home. He has even come down quite a bit on his O2's.

Comfort

(This picture was taken in our front yard on a love sac the kids had just received from Grandpa and Grandma. They rolled into the yard before it ever made it into the house. It was the jumping bag /entertainment for the day!)

I want to thank each of you who have sent comments, e-mails or texts, prayed, fasted, brought by cookies, flowers and many other ways of showing your love and concern to our family. Through all of this I have been able to find the necessary comfort and strength to continue to go on with life, to take care of my family, and to find joy in each day I have with Mason. Though even with this comfort, I'm not trying to fool anyone. I still cry each day, several times a day, as I think about the day of Mason's Heart Cath, Dr. Everett coming out of the Cath Lab with red teary eyes saying she needed to talk to me, and the devastating news about Mason's failing heart unable to receive a transplant. This broke my heart, shattered my hopes, and left me numbering the weeks and days I have to spend with my baby. But I can't even imagine going through this alone, without the comfort of wonderful family and friends, a loving Father in Heaven, the Gospel of Jesus Christ, and a supportive "heart" community.



After fasting and praying along with everyone who joined us (and still continue to...thank you!!) I feel comforted with our decision to send Mason's medical information on to a few children's hospitals who specialize in heart-lung disease for their opinions and advice. As a mother I need to know I did everything possible to give my baby a chance at life. Maybe, there is another miracle out their for our Mason. Or, maybe I just need more information to know and accept that we've done all we could to optimize our baby's quality of life. Although I feel like my hopes were shattered and I am trying not to get my hopes up once again as we seek more opinions, hope and faith are all I have to hold onto now. As I go forward with this faith and hope I am comforted knowing there are so many praying for Miracle Mason and our family.



The good news is Mason is doing really well. He has seemed much stronger the last two weeks.Watching him scoot around the house and continue to get into all the cabinets and drawers with a big smile on his face, it is hard to believe how truly sick his little heart and left lung really are! He is trying to crawl up stairs and pull himself to a stand. He needs a bit of help, but will now put weight on his feet and actually enjoys it. He will also scoot on his bum all the way down the stairs. Not just a couple of steps, but 17 steps from our upstairs to our main floor, and then again down another 15 steps to the basement. He laughs with each step! It is sooo cute! I need to get in on video. These little things, which are actually huge things for sweet Mason, give me comfort too!

Thank you again and again for all your love and support! I will continue to update as needed. Dr. Everett has been out of town, but we will begin this week to send Mason's information on to other hospitals.

Back to School

Just a little late, but I wanted to post some cute pictures of Mason's big brothers and sister (since they are 4 of his greatest fans) on their first day back to school. The three oldest started on August 20th and Ammon started on August 27th.

Ammon (4 1/2) returned back to the same full-time school he has
been at the last year and a half. I am very happy that he is still
able to go to this certain preschool class, because his teacher is absolutely
wonderful and her program has helped his progress tremendously!
And the other bonus is that bus picks him up and brings him home
right from our house! This is a huge blessing and he loves the bus too.

Braiden (6 1/2) is now in first grade. He loves going to school
all day with the older kids. He hasn't complained once about the
school day being to long. He also loves lunch and recess now
because he gets to hang out with his big brother. Braiden eats lunch
with Preston and his friends and then they all go out and play football
together. I love that those two like to hang out!

Preston (8 1/2) is now in third grade. A month after we had moved to
our home here in highland he started kindergarten. I can't believe how
time flies. Preston, like most boys, has two favorite things at school...
recess and p.e. ! I am proud of Preston for including his little brother
at school with his friends. Football practice and games are the motivation
I use right now to get him do do his homework. Thank goodness for that.

Boys, boys, boys!!!

Kaitlin (turns 11 this week) is in 5th grade this year.

Because she is our oldest, she seems much older than this!
Kaitlin takes on so much responsibility in our family and I'm
so thankful to her for all her help. As usual, she is all about
fashion and friends, but manages to be a great student too!

I must say even though I dearly love all of my kiddos, I am very grateful to have them back in school at this time. With the heart breaking news about Mason being ineligible for a transplant I want to spend every possible minute I can with my sweet baby. This is the first time in many years that I only have 1 baby at home with me during the day (except for Mondays, Ammon doesn't have school). Usually I've had three kiddos home, because part-time preschool and half day kindergarten don't count! Time is a blessing right now. I am cherishing every moment my Miracle Mason and I have together.



Thank you to all of you for you prayers and dear thoughts of love!

A Broken Heart

It has taken me 24 hours, since the news of Mason's Heart Cath, to pull myself together enough and to pick up a few of the pieces from my shattered heart to be able to post about my sweet Miracle Mason. Thanks to Shauntelle (Kaidence's Mommy and dear heart friend) who fortunately happened to be there for a cardiology appointment yesterday, was there for me to cry with and hug when I was told Mason was not going to be a candidate for a new heart. Mark was coming up to be there when they were supposed to finish the cath, but they called me to the cath lab an hour early. Thank you to everyone who has sent comments and e-mails in response to Shauntelle's post yesterday.



So what were the results? Mason has pulmonary vein stenosis. Which I am still learning about myself. But, basically there are two pulmonary veins on each side of the heart going to each lung which bring back oxygen rich blood from the lungs. Stenosis is when there is partial or total obstruction in the vein. Both of Mason's pulmonary veins going from the left side of his heart to his left lung are totally obstructed. Thus he can not have a transplant without at least one of those flowing from heart to lung. You need at least 3 of the 4 (his two on the right side are fine) veins open and working to receive a new heart. This also means he has a very sick left lung along with the high pressures in his heart causing the low function.



What can be done? They only other option presented to us is a heart-lung transplant. But that would have to be somewhere else like Boston or Stanford.....and he may not even be a candidate because of how progressed the stenosis is.... and usually the risks out weigh any positive outcome of this type of transplant. We have not yet decided on getting a second opinion or not, because we do feel the cardiac team at Primary's his highly qualified. We are praying for guidance.



Although I had expected to hear from his cath that "yes" his pressures are high and he does for sure need a transplant I am taking these results with faith that our Heavenly Father does have a plan for Mason. Definitely a different plan than we had hoped for with a new heart bringing him a higher quality of life, but we can still pray for miracles along the rest of our journey with our sweet baby.



At this time, we plan to optimize Mason's quality of life the best we can with his heart meds and oxygen (as well as still avoiding sickie germs) keeping the broken heart he was born with. He will continue to see cardiology every 4 weeks, or more often as needed, for check ups and to up his meds as he gains weight. We will enjoy our Miracle Mason as long as we are blessed to do so.


Thank you for all your sincere concern and prayers. We will be doing a special prayer and fast on Sunday for Mason and our family. We would love any or all of you who follow our story to join us as well.

FAITH, LOVE AND SUPPORT FOR THE STRICKLAND FAMILY!

Dear Friends and Family,

Summer has asked me to give a quick update regarding the Heart Cath that little Mason had this morning. Mason seems to be doing fine. However, Mark and Summer did not receive the news that they had hoped for from the doctors after the procedure. Due to some issues, Mason will no longer be eligible for a heart transplant. Their hearts are broken.

As far as I am aware, they will be bringing Mason home this afternoon. Please keep Miracle Mason and his family in your prayers. Also, this Sunday we will be having a special fast for Mason and his family. Mark and Summer have many hard decisions to make in the weeks to come and I know that through fasting and prayer they will be given the guidance and peace needed.

Mark, Summer and family........We love you and will do whatever we can to help carry you in the days ahead. Our thoughts and prayers are with you, Mason and all of your family.

With Hope, Faith and Love,
Shauntelle

Look At Me! I'm 21 Months!

On Sunday (August 3oth) Mason turned 21 months. Every month, every milestone, is a miracle and a great celebration. Mason may be tiny ( a whole 17 1/2 lbs) but he is always over flowing with love and happiness. Even when days are chaotic and crazy with 5 kids going all different directions, all I have to do is look at Mason's constant smile to remember life's true meaning....to remember how special it is to be a mother.....to remember what is really important.

Here are a few cute pictures from August:

Mason in his favorite evening hangout spot, the back deck,
watching all the neighborhood kids play.

Mason is trying to climb the two steps from the
family room into the kitchen. He figured out how
to get down (scooting on his bum!) but is still
working on going back up. And he put big brother's
hat on all by himself.

Mason actually sleeping, this is a rare occasion!!
And not in his crib of course! Why would he sleep there?

Scooting around the kitchen on a lid to a pyrex cake dish
and attempting to empty out one of the kitchen cabinets.
Mason has this silly fetish for sitting on something.....
a paper plate, a book, a toy, a lid, a hat etc..
and scooting around the house on it.

Happy 21 months Mason! We love you! Thank you for filling our home with sunshine.