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

Pediatric Visit-Full House

Mason had his 9 month pediatric well visit today and it continues to be all good news. Dr. Etheridge was very happy to see how well he looked and how well he was behaving. He is doing the typical things a 9 month old would do and is looking great on the growth chart! This just confirmed what we already knew, our little boy is so tough! Dr. Etheridge thought it would be a good idea to get a finger prick on him to check his iron levels, which in turn gave us a high result in lead. From what he said, a normal reading would be below 10 and Mason's was 22. Not the best news, but Dr. Etheridge did say they got a new machine so it may be as a result of it not being done properly or the machine malfunctioning. Either way, we were called back to have a venous blood draw to send off to the lab in Albuquerque. Even though the plebotomist was a pro little Mason must have been having flashbacks to the hospital, he was terrified when she started to put the band around his arm. My poor baby was so sad! Thank goodness it was over quickly and I could get him out of there without having to ask to be discharged! I just whisked him away and now we wait for a few days for the results. If it is high after the lab testing then we would be visited by the State to determine what could be causing the unusually high levels. It's good to know there are precautionary measures in place. On the other hand, Mason's hemoglobin levels were great and again, Mason's surprised Dr. Etheridge with how good his numbers looked.

Our niece and nephew Kelly and Kenneth are here for a few weeks of vacation and we so now we have 7 kids at home! Michael is home from college as well and it has truly been great. Everyone is getting along, with the exception of Matthew, who has reached the terrible two stage at 5. Nonetheless, it is a great time to be alive as a full house makes for more fun!

Mason: Height: 28" Weight 19.10

I've got an angel

These past six days have brought a whirlwind of cries, shouts for Mommy, groans, and multiple trips to the bathroom for almost everyone in our little household. The flu bug, or something evil like it, had gotten a hold of even little Mason. My sweet boy would throw up every time he drank his milk. He could keep down both Pedialyte and Gatorade and so we existed on that for 2 days. Through it all Mason wasn't even phased. He continued being his cheerful, little self as soon as he finished spilling out everything he just took in! Those sweet smiles are doled out like candy to an eager crowd on a 4th of July parade. I call him my "Dolly Boy" because he is just so darn sweet and is just a doll. God let us have his little angel to fill our hearts with a love so complete you just couldn't ask for anything better.

When I weighed him yesterday, he had lost .4oz from our last visit to the cardiologist. Not bad, I would say. His 02 sat last night was 82, without the oxygen. That too, is pretty darn good. As far as appearances go, you would never be able to tell there is anything wrong with him. The shirt he was wearing to church yesterday wasn't buttoned all the way up and I could see his little "zipper." When I pointed that out to Matthew, he got a great kick out of it. He never really looked as Mason's scars like that before.

Mason is scheduled for his first physical therapy visit this week. The therapist is hoping to work on his rolling over/tummy time in order to facilitate crawling. He already has a preference for standing, with help, and really hates to be on his tummy. I think a lot has to do with the fact his mickey button is pushed into him when he is face down. Although I don't think we really need a therapist, it can't hurt to help him get pushed along towards either walking or crawling. That will certainly be a site to see.

Great Cardiology Visit 5-7-09

We had a visit with Dr. Goens, Mason's cardiologist last week. She held clinic in Las Cruces and we were happy to not have to travel to Albuquerque for this visit. The nurse had plenty of help in taking care of Mason's vital signs as Matthew was eager to help out. Surprisingly, Mason's 02 sat was 88! That was on .5 litre of 02, but was remarkable nonetheless. Dr. Goens felt it was time we allowed Mason to come off the continuous 02 and hold his own. We will continue to monitor his 02 levels and make sure he is maintaining them while at home. The oxygen tanks/concentrator will remain in case there is a need. Dr. Goens also discontinued one of his doses of Lasix and discontinued his Captopril and replaced it with Enapril, 2 times per day. Happily, we are making progress!

Now that he doesn't have the 02 cannula and cheek stickies, he looks darn good. His weight was 18 pounds and is therefore another reason to celebrate. We can discontinue the nightly g-tube feedings and see if he continues to gain weight properly. He is currently somewhere in between the 10th and 25th percentile for weight, which we will be glad to maintain. If you didn't know all about him you would never know what he has experienced. God has truly blessed us and we can see it in Mason each and every day.