Saturday, February 28, 2009

Hold on to Dear Life!

These last two weeks watching our two little heart friends Gracie and Gracie struggle in the hospital, and knowing there are many other ill children suffering around the world each day.....I can't help but think how grateful I am to have my five children at home with us this day. I can not complain about little Mason's health this winter. No hospitalizations. No major illnesses or major problems with his heart (well, it is functioning almost as good as his little broken heart can). Pondering about the struggles of these other little babies and about how quickly life can change has made want to hold my children a little closer and hug them a little tighter! When I have layed down with Mason for his naps this week I have cherished more than ever this time with him and have realized I can not take these moments for granted. Life is too dear to let it sneak away with out appreciating every moment we have with our special children, our gifts from our Father Above! I hope I can remember these thoughts each day when life is hectic and crazy, so that each of my children know how dear and important they are to me.

As for the latest on Mason......we have had a few doctors appointments the last two weeks. We saw his Pulmonary doctor at Primary's and for the most part his lungs were pretty clear. He did have a cough and an ear infection at the time. His upper air ways sounded pretty tight and raspy so he put Mason on a 3 day steroid (in addition to the inhaler meds we do at home already) and I will never give him that certain medicine (prednisolone) again if I can help it! He was miserable and cranky! I am pretty certain it gave him an awful tummy ache! Whether it helped the cough or not I am not sure, I think it just had to run its course.

The following week we were back up at Primary's (on Feb 19th) for a cardiology appointment. It had been about 6 1/2 months since he had been seen by cardiology, so I was quite anxious for this appointment. We saw Dr. Saarel, who very first treated Mason for his Arythmias. She is an Electrophysiologist/Cardiologist who deals specifically with arthmyia issues. She was impressed with how well Mason looks. He is still quite little but she didn't seem too worried about that because he has no eating issues and continues to grow.

When she listened to his heart she said it sounds like his tricuspid valve is leaking again. She said she thought it was pretty mild, but has scheduled him for a sedated ECHO on April 9th to get a really good look at his heart function. His lips and fingers have been more purple lately so possibly the leaking valve is affecting this. She told me not too worry about it though. If she had thought it was severe she would have ordered an ECHO right away.

But what does worry me.....she took him off Amiodarone (his arhythmia medication)! 2 week after we took him off of it last time,(last March) he went into major tachycardia at home and was Life Flighted back to Primary's (on April 3)! She sent him home with a halter monitor to record his heart rate and rhythms for 24 hours and plans to do this every 4 weeks. Although I think I am going to ask for one every two weeks just so we don't run into what happen last time!! They don't like to leave children on Amiodarone longer than absolutely necessary because it can begin to have adverse side effects on their liver, kidney, and thyroid.

My true hope is that his arhythmia issue is gone, that we won't have a Life Flight scare, and that when the medicine is all out of his system (which can take up to 2 months) he can sleep much much better. Dr. Saarel said not to bank on the sleeping better, but I still think this medicine has affected his sleeping! Even if he'd sleep for a 4 hour block at night would be fabulous!!!

That same day (Feb 19th), up at the Child Development Center near Primary's we took Ammon to see Dr. Paul Carbone, a Child Development Pediatrician. He gave us new insight on some more services that Ammon may qualify for because of his developmental delays. He deals alot with children in the autistic spectrum. After visiting with Ammon for a short time, his opinion of Ammon was not necessarily autism but, a very bright and energetic child who just can't focus! I do agree! I will be scheduling some future appointments at their clinic to do some testing and some therapy.

We also saw our pediatrician last week for check-ups. We had Braiden's 6 year, Ammon's 4 year, and Mason's 15 month checkups. I timed them around Mason's Synsgist (RSV) shot. (Ihave certainly earned a lot more of my "doctor appointment Flight miles" this month...ha ha!!) Mason was barely 15 lbs 11 oz. He hasn't gained much weight at all lately. He eats quite a bit, but he is moving around a lot more. He scoots all over the house now on his little behind!

We've been very busy at our house this month. With 2 birthdays, Braiden's was on the 8th, and Ammon's yesterday the 27th, all the doctors appointments,and Kaitlin in 6 performances of the Cinderella play at her elementary school..... added to our every day crazy lives there hasn't been much time to breathe, let alone blog!! My computer won't let me down load pictures, but as soon as I figure it out or borrow a computer I have some cute pictures to post.

I am grateful again for how well Mason is doing considering all he has been through. I am grateful for 5 wonderful beautiful children. May we all let go of all the little unimportant things in life and hug our children a little tighter and alot more often. Life is too short and too delicate not to cherish each moment we have with our little ones.

Tuesday, February 24, 2009

Gracie and Gracie

Mason's dear heart friends Gracie (Gledhill) and Gracie G. (Gourley) are still in need of lots of prayers! They are both in the PICU at Primary Children's in critical condition. My heart aches to see what these sweet babies and their families are going through right now.

Gracie (Gledhill)

Gracie had some major complications with her heart transplant on Sunday and has been re-listed for another new heart. We pray and hope for another miracle for Dear Gracie Girl!

Gracie G (Gourley)

This sweet Gracie has had a very tough time recovering from her "Glen" open heart surgery. We pray her body will strengthen and recover at this time.

Seeing these "sweet-hearts" and their families struggle hits too close to home! I constantly worry about them & hope for a happy tomorrow! It makes our little family so grateful our Miracle Mason is home with us.

Please pray for Gracie and Gracie! No matter what religion you may be or not be our Dear Heavenly Father listens always. I have seen in my own life how important prayer is! Especially with my own children's special needs and this past year with Mason's major heart problems prayer helped comfort me and helps me endure each day's trials.

Sunday, February 22, 2009

Gracie is getting a heart!

Talk about miracles....Gracie has only been on the transplant list a few days and right this minute she is in surgery receiving a new heart! Please pray for Gracie that her surgery goes well and that her body accepts the heart. And please pray to comfort the family who has lost their baby this day. What an amazing and wonderful gift they are giving Gracie Girl and her family.


Wednesday, February 11, 2009

Please pray for Gracie!

Gracie Gledhill ("Gracie" on the heart buddies' list on the right side of our blog) is in need of your prayers. (Now this is a different Gracie than the one I mentioned in my last post. That is Gracie Gourley or "Gracie G" on our list.)

"Gracie" is in need of a true miracle! Yesterday she went in for her heart Cath. It was her 2nd one. She had one in November (maybe October, sorry) which showed her pressures were too high in her heart to go forward with the Glenn (the 2 nd surgery for Hypoplast Left babies) at that time. They had given her a couple months to hopefully bring the pressures down. So, yesterday was the day, and her family received very bad news. Her pressures were even higher, making her not a good candidate for the Glenn.

Now Gracie's parents are faced with some very tough decisions. She has already been through so much and has fought so many times to live. Please pray her little body will continue to fight and that her family can be touched by another miracle at this time. Miracles do happen!

As for our other little heart buddy, Gracie G, she is in the PICU still recovering from her surgery with many ups and downs. Please pray for this sweet heart baby too.

Mason has been sick still with a cough, runny nose, ear infections and now the stomach flu. In fact, I (Mom), was really sick yesterday with a horrible flu bug, and we've got strep throat at our house as well. But, I sure don't have to look very far too be glad for our sicky trial and not be in the shoes of some our "heart" friends.

We love you Gracie and Gracie! We will continue to pray for you and your families.

Sunday, February 1, 2009

Happy 14 months old to Mason!

Mason turned 14 months on Friday (Jan. 30, 09). Every month older is an amazing milestone and blessing for our little miracle baby!

At 14 months he :
*weighs 15 lbs 11 oz.
*eats solids well.
*likes baby cereal, fruits, vegies and finger foods too
(cheerios, crackers, etc)
*scoots around on his bum, usually in a circle.
*likes to jump in his "johnny jumper".
*still prefers sleeping in Mom's arms & sometimes in
his swing.
*has definite stranger anxiety (I believe he thinks most people
are nurses or surgeons!)
*has a fetish for playing with baby wipes.
*loves to play with his sister and brothers.
*just started clapping Saturday night.

Fortunately, Mason has been pretty healthy since November. Well, until this last week that is. He has been coming down with a cold all week (runny nose) and then on Friday he woke up with pink eye, Saturday with a yucky cough, and Sunday with an ear infection. Hopefully he can fight it off and not get any sicker. I am still so careful about crowds and taking him to public places etc..., but I guess with our other 4 kids going to school, germs are inevitable even with tons of hand sanitizer!

Mason has become quite a little trouble maker when he gets his hands on the box of baby wipes:

Why buy toys?! Baby wipes are all Mason needs for entertainment! We are just glad to see him moving around so he just needs to learn to really crawl. Very soon probably.

Also, please remember Mason's little heart buddy, Gracie Gourley, in your prayers. She goes in for her Glenn (2nd heart surgery) tommorrow.