Iowa City

Isaiah had another appointment in Iowa City today.

We really didn't find out a whole lot. These days we are thankful for the "no news is good news" appointments! They basically wanted to see him to monitor his growth and make sure he is a thriving little boy. Which praise God, he is! And "little" is hardly how I would describe him...he weighs 10 lbs 1 oz!

The doctor did tell us that they ran the test to rule out Tetrahydrobiopterin. This is a very rare disorder that sometimes presents itself as PKU initially, and can be very serious. So, we are thankful that it's just PKU.

We are still waiting to find out about the results of his DNA test. This will tell us more about the severity of his case of PKU. We spoke with the doctor and dietitian about where Isaiah is compared to other cases they've seen. They told us that he's actually probably taking a little bit less of the formula than most babies, but it's really too soon to tell.

If he continues to tolerate more Phe, then this will most likely mean that he has a less severe case. If this is true he will most likely be able to eat some normal grains! We are praying this is the case! He will still be unable to eat any meat, dairy, nuts, beans, etc. Basically the dietitian told us that he will be able to eat any fruits he wants - since they are so low in protein. A lot of vegetables - some we will have to monitor. And some grains - again we will monitor these. We will order the rest of his food from a special distributor that makes low protein food. They actually have a lot of options, like hamburgers (veggie burger), pizzas, and other kid friendly foods. Of course this is where the extraordinary cost comes in. Even so, Shane and I are dedicated to making it work and helping our little boy be everything he is meant to be!

So, we go back to Iowa City again in about a month. And at that time we will be meeting with his doctor about his thyroid too. Hopefully we will get another good report from all the doctors!

Thanks for everyone's continued support and concern. We are blessed with a lot of great friends and family!