Birthday Boy

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!!!

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!

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.

Knowing

These are some wonderful days! Our little Mason is developing such a personality. He loves to smile and laugh out loud and each moment near him is pure joy. He loves watching his brothers and sisters and they love him so much. So much so that Jaylen loves to squeeze him tight; much to the annoyance of little Mason, who in turn tries with all his might to escape her clutches.

Last week we all headed to Grandma's house in Deming to take her to the bank. After the post office said they had not received Grandma's renewal payment for her po box of some 30 plus years, they gave away her box two weeks after the expiration/renewal date. So there we were, faced with changing over all important bills, insurances, etc. While we were at the bank officer's desk I asked Jordyn to take Mason, Matthew and Jaylen over to the fireplace while we dealt with changing the address on Grandma's account. In short order, I heard a thud and then Mason's hurt cry. I quickly got up and found Jordyn holding Mason and telling me that she thinks he got a little hurt. Apparently, Jordyn entrusted Mason to Matthew and Jaylen and a swivel chair! They had spun the chair around and Mason flew off. He got a little bump on his head but thankfully he seemed fine. I sent them all outside to wait it out. Within a few minutes I saw a parade of little bodies coming in to get some water from the fountain, all with bright red faces. I think I may have gotten in trouble with some authority if they knew I sent them out alone but I was upset that they hurt their sweet, little brother. As we were leaving Matthew pointed out the spot where he had peed while outside. This being right outside one of the banks large windows, some officer got quite a show. Needless to say, I won't be taking them back to the bank anytime soon.

Our traditional 4th of July camping trip included Mason this year. He loved being out in the woods and was so happy almost the entire time. Another big event happened the week leading up to our camping trip; Mason learned to crawl! He looks so precious scooting around, changing from crawling on hands and knees, to putting one leg out and pushing his butt forward. If you just take a look at him you would never, ever imagine he has a congenital heart defect that affects every aspect of his living.

Knowing he has something so wrong with his heart isn't the problem. It's the wondering when his heart won't work anymore that creeps up in my mind when I least want it to. There isn't anyway to explain this to "normal" people, only those that are going through this can truly understand the hurt you feel to know there is always something about to happen around the corner. The only solace is that I think we can all get comfort in knowing we are not alone in dealing with this. That doesn't sound that great either...Knowledge-it's not all that great is it?

The following is a great video on the basics of Mason's next scheduled surgery, the Fontan. The video is from 2001. I forgot to mention on my last post, we got rid of Mason's Lasix as well! That means he is on Digoxin, Enalapril, Reglan and 1/2 baby aspirin. Next to go will be the Reglan!

http://vvi.onstreammedia.com/cgi-bin/visearch?user=pbs-saf&template=play220asf.html&query=%2A&squery=%2BClipID%3A2+%2BVideoAsset%3Apbssaf1104&inputField=%20&entire=No&ccstart=99833&ccend=870000&videoID=pbssaf1104