Friday, December 4, 2009

'Tis the season to be thankful

Well, it was this date last year that we were getting ready to travel to Palo Alto, CA for Mason's Glenn surgery. That was to be the "easy" surgery. As if any open heart surgery could be easy, but as you know it turned out to be the worst one for our little Mason. Thankfully, we had some divine intervention and he pulled through. Today, we live almost normal lives, trying to keep the gravity of his condition in the depths of our minds. Whenever I tap into those thoughts I turn teary eyed and can't help but imagine the worst. It usually doesn't happen unless I have read someone else's blog. Someone whos child has not been so lucky and is still in the hospital, someone's child whose heart is starting to fail and they now await a transplant or someone's child whose passed. It's always someone. It just doesn't seem right that it has to be a little child with so much to give.

Giving is certainly what Mason has done. He has given us hope, courage, strength, a stronger faith in God and more love than any human being deserves. We are so thankful for these days!

Thursday, October 29, 2009

Uneventful visit-or should I say for me...

On October 21 Mason, Daddy and I traveled to Albuquerque to visit with Mason's cardiologist, Dr. Goens and visit with the Pediatric Surgeon, Dr. Lemon. The good news was that Dr. Goens believed that Mason's heart looked good enough to get rid of the Digoxin and simply increase his Enalapril. The reason being that the Digoxin was used to increase the forcefulness of his ventricle and was especially needed after December's life-threatening events. His heart has recovered enough to hopefully keep him off of the Digoxin for some time. As Dr. Goens explained to me, the goal is to keep Mason's own heart functioning as well as possible for as long as possible. We wouldn't want to wear it out further by keeping his ventricle pumping more forcefully with the Digoxin. She did comment that she thought perhaps there was a slight decrease in function since his last echo but that was subjective. Give it to someone else to read and they might not see the same thing. So to us, all looked pretty darn good.
Now, his peds surgery visit was not as nice. After discussion and evaluation from the med student, Dr. Lemon and Dr. Lemon's nurse it was decided that we try the silver nitrate first in order to hopefully avoid surgery to close his still, leaking fistula. (g-tube site) We had to hold Mason down while the nurse pushed in the swab that contained the silver nitrate into his g-tube fistula. Not a good thing. She asked the med student to hold his legs down while I took his arms. The nurse was apparently a little frustrated with the student's inability to hold his little legs down. She commented to the student, "Now you see, he has been through things like this before, he knows what he is doing and how to move his legs, you have to hold them down!" Of course, she took over the leg part and held him down and applied the silver nitrate at the same time. Horrible for Mason but worse for Ernie and I when we had to do it at home on Saturday. The wonderful news is that it looks like it might have worked! I pray that his fistula closes and we can avoid surgery. It would only be a minor surgery, but I am so afraid of him undergoing anesthesia without a cardiac anthesiologist on hand. Maybe I don't understand the "minimal" risks but I would feel better having any surgery done on Mason out of state! All that being said, look what happened in December at Stanford, of all places. We'll just have to give to God, I know he is taking care of us. So all in all, the visit was "uneventful" and deemed a success! Thank you God!
I almost forgot to metion, Mason took a couple of steps on his own, two times, both while Billy and Marsie were over at the house. I guess he was just showing off! We know he'll be walking in no time. Now then, we'll really have something to report.

Friday, August 21, 2009

Wednesday, August 19, 2009


Happy Birthday Baby T

What a beautiful day for our little Mason's birthday! Absolutely perfect skies with warm sunshine filling every crevice available and little Mason's happy face filling our hearts. It has been a year filled lows and highs and each day has had a little bit of a challenge. From normal baby things like learning to crawl to a heart baby leaving his g-tube behind. There isn't a better place we could be and as always we thank God for giving us so many things to be thankful for. Here's to everyone who has helped us get our little boy through that tough first year and to those who will be helping us get through all those in the future-may your heart be filled with the kind of peace and love we have been blessed to experience.
To my Mason, your are perfection in each and every form, with an innocence found here on earth only as a child. Your rebuilt heart a perfect little machine able to work in a way no one could imagine. To live each day with you is to know the great and glorious power of God, for it is he who has given you life, given the doctors and nurses the knowledge to help fix your heart and for everyone you encounter to be filled with happiness whenever they meet you.
Today is one year from the beginning of our journey, little one. With faith and love many more are to come. We all love you so much!! Happy Birthday Big Boy!!!

Friday, August 14, 2009

We are almost there

Back in January I had applied to the Medically Fragile and Developmental Disabilities Programs for Mason. It wasn't until this past month that I heard from both, one that Mason had been allocated funds for nursing care and the second program wanted additional medical information. I am happy to say , at this point, he needs neither program. When Cathy, nurse from Medically Fragile called me, I was happy to report to her that Mason was off his 02 and his g-tube was removed. She wanted to see him in person and was just amazed at how great he looked. She was thrilled to see how active he was. As for the DD Program, Mr. Piel, spoke to me and told me he had received my enormous box of medically records and from what he could tell, it appears Mason isn't in need of those services at this time as well. The DD program is more for those children and adults who are considered "mentally retarded" and they offer nursing, respite, life skills and other programs to facilitate their lives and the lives of thosearound them. If and when there is a need I would simply reapply for either program. The reasoning to apply to begin with is that there is such a long wait to be on these programs and people wait months/years to be accepted and the fact that when we got back from Stanford in December Mason was in rough shape.
So here we are today only a few days away from his 1st Birthday! Amazing life we have nurtured for this past year. He is such a joy and everyone he encounters simply just falls head over heals over his jolly personality. Thank God for every step we've taken, forward and back, as we have learned so much from this journey we are on.
Our motto now, Don't worry today about what could happen tomorrow. If it never happens then you'll have worried twice!

Thursday, July 23, 2009

Mickey is gone

Monday was a good day. We had a visit with Dr. Etheridge who was to remove Mason's g tube (mickey button). After a brief visit we decided that we would just remove it at home closer to bedtime. I figured that it would be better to do it at night while he didn't have much in his stomach. So we went to Daddy's baseball game and as soon as we returned home we just deflated the retention balloon and out it came. He had very little discharge in the next morning and I thought we would be home free since Dr. Etheridge said the actual hole in the stomach would close in about 4 hours. Unfortunately, it just isn't that simple. When Mason drinks liquids he has minor discharge and with increased activity the discharge becomes more significant. The site itself looks good so now it is a matter of wait and see. Most literature I have read indicates the site should close within a month and if not then surgery would be required to close the hole. This is a perfect time to do this though as Jordyn, Matthew and Jaylen are in Mexico and I devote all my time to Mason. He is just a doll and is happy 99% of the time. Everywhere we go he inspires smiles from others as well as comments like he is so beautiful, he is so happy, what a beautiful smile, what beautiful eyes, etc. I guarantee part of the reason he was given to us was to inspire joy and happiness in all those around him. His story is an inspiration and once you hear it you can't help but falling in love with him.

He has now perfect the goodbye wave and crawl. Next are his attempts at pulling up and standing, soon enough he will be walking. What a long way we've come.