Catch Up

It's been a busy few months since we last posted, but there have been good things going on with our little Mad Man!

Maddox and I traveled to Boston in October, a week before his second birthday, for his first follow-up visit since we left when he was two months old. We had two full days of traveling to and from and two full days of appointments at the children's hospital. It was a whirlwind trip, especially since I was 11 weeks along with our fifth baby. But it was a trip full of good news and good information. We were anticipating the news that Maddox would be needing open heart surgery this year, but after having a sedated echo, Mad's cardiologist, Dr. Tworetzky, was thrilled with how his heart looked. Obviously it is not a normal heart, but all leakage is in the mild range and could potentially last for quite a while as it is. His homograft will need replaced at some point, and his mitral valve will need repaired/replaced eventually, but nothing needs done right now. This is a tremendous blessing, especially since we were trying to plan how to have surgery around having a new baby. I was feeling stressed about the possibility of spending months in Boston with Maddox and delivering our next baby there while Maddox recovered from surgery. It was not an ideal prospect, but I'm sure we would have survived if that was what was necessary. Thankfully, it doesn't appear to be what will happen and we are thrilled.

Also while in Boston we met with a GI doctor, a dietitian, and spent three hours doing tests to see where Maddox is developmentally. We didn't get any new information from GI or the dietitian and are just keeping with our current feeding program:carnation instant breakfast, whole milk, 1100-1200 calories per day through the g-tube. The news from the neuro-developmental screening came back positive overall and showed that Maddox is in the average range for everything but gross motor. They recommended we get him back into physical therapy(he'd been discharged over the summer). He is definitely making progress and catching up developmentally, but has areas we are working on. Mostly right now we just let him play and run around like a normal kid. He loves being outside, reading stories, playing with cars, trains, spider man, iron man, balls, wrestling, watching movies, singing, coloring/drawing, making messes, taking baths, climbing stools, stairs, ladders, etc... He is your average crazy two year old. (By the way, we took ZERO pictures of his birthday. There was no cake, no candle to blow out, and one measly little gift. I did hang a birthday banner because the older kids were appalled at our lack of celebrating. How's that for being a great mom. Sorry Maddox. Hopefully I'll redeem myself when you turn three).

Maddox admiring his "precious" as we wait outside the temple after

Aunt Ashlie and Uncle Cade's wedding.

We started growth hormones in November and obviously Maddox is less than thrilled about getting a shot every day. Jeff and I are getting used to giving them and alternate days between holding and sticking. We rotate around Maddox body so that he receives the shot in a different spot every day. Right now we use his bum and his thighs. He is constantly bruised, but hopefully it will be worth it and help him grow. We should know if it's working after six months of use.

Christmas spider man pajamas--the kid is obsessed

Maddox is too old this winter for insurance to cover the synagis shots that protect against RSV and so we are trying really hard to be careful and avoid crowds, especially in enclosed places like church. He has had a cold for months off and on, but so far nothing major yet(knock on wood). I have heard horror stories about kids ending up in the hospital multiple times the first winter they don't get the shots and I would much rather avoid that if possible. Hand sanitizer and avoiding people is our best bet. I am hopeful that there will come a time when we can be less reclusive during the winter, but at this point it's not worth it.

we made special allowances and took Maddox to church for one hour on Christmas

so we could go as a whole family as opposed to our usual one-parent-on-one parent-off approach.

Maddox is still trying to decide how he feels about eating. His reluctance doesn't really make a whole lot of sense, but I am sure that at some point he'll figure it out. He asks for water all day long and will drink it by the cupful. He asks for chips, crackers, croutons, m&m's, a bite of this and that, apples, carrots, cookies, milk, etc... He'll suck on whatever it is, chew it, hold it in his mouth for several minutes and then spit it out. Very little but fluids make it all the way down. He'll climb up a step stool in the pantry and dig a chip out of a bag, but he doesn't do much more than carry it around. So, we just continue to work with his OT on sensory and feeding therapy and try not to stress about it. I would love for the g-tube to be gone by the time he goes to school, but hopefully by then he'll at least be capable of pushing a syringe of milk into his stomach at lunch time if he can't eat a peanut butter and jelly sandwich. He could be the talk of the cafeteria!!

...kind of a funny story about the g-tube...on Halloween Mad stayed home with me to hand out candy to all the little trick-or-treat-ers while Jeff took the older kids out to beg for candy. Maddox has a bad habit 0f lifting his shirt up all the time as he walks around the house and even out in public -not a big deal, but gets some funny looks. Well, we had a group of about 6 cute little girls come to the door and while I was handing out candy they were all oohing and aahing over Maddox, saying how cute he was. And then suddenly, we had our own little house of horror as Maddox lifted his shirt and exposed scars and a foreign apparatus hanging out of the side of his stomach. The girls' smiles vanished and with looks of terror they turned and bolted to the safety of their parents waiting on the sidewalk. I chuckled for a while and Maddox, completely unaware of his charm went about his business until the next unsuspecting trick-or-treat-ers came to the door. Good times!! We forget how abnormal our normal is to most people and sometimes we just have to laugh!

Maddox as Charlie Chaplin for Halloween!

The hat is a bowl that he wears on his head all the time. That gave us the idea, so we painted the hat black

and put him in a suit and gave him a mustache--cutest Charlie impersonator ever!!

-taken at night with a phone so it's grainy-

Well, that's what Maddox has been up to.

We are excited to start a new year and are hopeful that things will continue to get better and better for him. He is such a blessing. He is going to be such a special big brother.

He has already taught our family so much and is such a joy to have around. He just lights up a room with his smile and enormous personality. He is so full of life and we marvel every day that he is here and a living part of our family.

We sure love our little Miracle Maddox!