I forgot to update about Micah earlier this week. The boys had a well check last week. They usually do really well at the pediatricians office, but they were more than a hand full this time, to say the least. Ben refused everything! He was being a true 3 year old. Micah did ok, but he really doesn't like doctors in general. From the exams she could get out of them, they both look good. Micah is growing but he is still not up to where they want to see him. The only thing that really came up is that she heard a slight heart murmur, which she said normally wouldn't concern her but, since he has GSD and now a sister with a heart disease, she wants him to get an EKG done. We are not thrilled about this. It is another appointment at the Children's Hospital, another co-pay, another hard morning for Micah. But we are scheduled for next week to do it, and make sure he is fine.
I talked to Micah's metabolic/genetic doctor this week about his lab results and my genetic testing results. Micah's tests (the ones that took 4 tries to get the blood for) came back good but still not at normal levels. His doctor said the goal is for his levels to be in the normal range but he is not sure if that is possible for Micah. They are glad that there was a slight drop, but they are hoping to see it continue to slowly improve over time. As those blood levels are slowly dropping, he should also start to catch up to his normal growth curve and his liver should go down in size. They are hoping that his growth will catch up to normal by his second birthday, in six months. They are sure that the 2 am corn starch and the high protein diet is what is making him better. They want to see him one more time before Maelyn is born to check his growth and liver, and they know we wont be able to bring him for a while after she is born.
They increased the 2 am dose again, so now he is basically drinking a milk paste at night... The 2 am feedings are getting harder. He is not drinking it as well, Tim is starting to sleep through the alarm/doing it and the last time I tried, Micah screamed for mommy and Tim had to go in anyway to lay him down again. Bless my husband! He is a trooper, getting up every night and going right back to sleep. In less than 3 weeks, the boys are going to be sharing a room and Micah is going to move to a big boy bed... So the 2 am thing might get even harder.
My genetic testing showed that I am a carrier for the genetic mutation that Micah has. This means that my mom is a carrier and her mom was and her mom was, ect... Yet Micah is the first male in the family to have the disease, but I think I am the first to have more than one boy. Our genetics doctor wants to test my sister so see if she is a carrier. I am not sure what my sister wants to do, but if she is a carrier, her daughter might want to get tested one day. The males in the family don't have to worry about it. Even if Micah has a son one day, he doesn't have to worry, but if Micah has a daughter, she will also be a carrier. Doesn't this bring you back to high school science class?
It is also starting to get harder to keep sugar away from Micah... Between potty training and Easter, Ben (and I) have had a lot of candy and Micah totally notices now. I used to be able to trick him or keep it out of his sight, but he is getting smarter! And Ben, the sweet brother he is, wants to share. Today Ben went and got himself an M&M because he peed on the potty, and he let Micah pick one out too. At the Easter egg hunt I brought Micah his own eggs with stickers and gold fish, but that just isn't going to work next year. I know we are going to have to get rid of cookies and candy as a family, but what do I do at parties and holidays? And I should specify, he also can't really have "sugar free" candies either because he shouldn't have the artificial sweeteners either. The only "safe" sugar is Stevia. I am glad that it is not a huge deal if he has one M&M. The dietitian said he can have a treat every now and then, but his sugar intake should really be limited to his dairy and fruit needs. He is only supposed to have a certain number of grams of sugar per meal/day. Honestly, I don't keep that close of track to his actual sugar intake, but I know that adding one candy is going to limit what he should have the rest of the day. And I should probably keep track of that, as he gets older and pickier!
Over all Micah is doing great! We feel like he has changed so much over the last couple months, since starting the corn starch. He is so much happier, and he has a ton more energy! He has started walking and climbing everything. He has finally gotten more hair! He tries so hard to keep up with Ben and is starting to hold his own against him. They are starting to become rough and tumble boys. Micah started to climb up the slide and go down it by himself (with someone there to catch him) this past weekend! (Ben didn't do that until this past year!) He loves to climb and play chase and peek a boo and "wrestle" aka roll around giggling. He is still pretty sensitive though. If he falls down or something happens he doesn't like he will scream your ear off for about a half hour. And he is still a huge momma's boy.
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