One Step Forward, One Step Back

We are having to make some big changes in Ethan's diet. His last levels came back at 8.6 which is pretty high. So obviously we have to get those levels down. The Dr had him at 43g of protein a day (the one step forwad) but with these levels he has him back down to 35g of protein (the one step back) and we are to get Ethan tested again before Christmas. If you pay attention to labels 35g of protein is not very much and it really limits what we can give Ethan and how much of things we can give him. For instance 1oz of turkey has 8g of protein (an ounce is not very much) so turkey is something he can't have. Another example is 1oz of cooked ham had about 4g of protein so we have to watch his intake of ham. Meats tend to be the big culprits of high protein so we need to measure how much meat he eats at a time and we need to know how much protein is in 1oz of meat to measure out how much he can have. Now potatoes have less protein, 1 cup has 3g and since he won't eat a full cup potatoes is something that he can have. How they are prepared makes a difference too. When cheese is added that brings up the protein count and so on. Confusing? Now you know how we feel LOL. So what have we done to make changes to his diet? For starters he is not drinking cows milk very often as it has 1g of protein per 1 ounce of milk. Instead he is drinking Almond milk and Coconut milk which has 1g of protein per 8 ounces of milk. It also has all the vitamins and calcium that you find in cows milk (a little more actually) so he is getting all the right nutrients there. We also give him more vegetables (carrots, green beans, squash) at dinner time in place of a full serving of meat or pasta. Vegetables do not have much protein in them if they have any protein it's less than a gram per serving. Fruit has no protein so he can have as much fruit or juice as he wants. When it comes to desserts many don't have much protein either but any desserts (pies, cookies, ect) that are baked with aspartame, splenda, or any other fake sugar he can not have. The fake sugars make the phenylalanine in his blood rise and then we get a false reading on his tests. So that also means no diet pop as well. With all this info it means that we have to write down everything he eats or drinks and how much of it he had.

So why am I explaining all this when most people are scratching their heads going "Duh what?" (lol)? Because with all the holidays coming up and all the gatherings people might feel tempted to give Ethan a bite of whatever they have on their plate or a little sip of their drink. I am more concerned with Thanksgiving than Christmas right now as we will be testing Ethan not long after Thanksgiving. So I am asking people not to just give Ethan a bite of something because he asked we need to be asked first and we need to know how much so we can write it down (it's preferable if we measure everything out since we know how much protein per ounce is in foods). It's really important that everyone knows this. We were told that if his levels were to stay that high for a prolonged amount of time it could lead to brain damage. The Dr wants to keep his levels under 6 which is considered the safe zone.

We are at fault for Ethan's levels being so high because we no longer had to keep a journal of what he ate & how much. We did not think that he was actually coming anywhere near 40g of protein based off of what he was eating but we were underestimating how much protein was in certain meats. So now we are being very diligent to make sure he is not going over his protein limit.

OK with that said let's move onto something a little less serious. Today Ethan went on a scavenger hunt in the closet with me. I opened the closet door in the living room to put something away and I was greeted with a very nasty smell. So after breakfast I decided to look for the source of the smell (for all I knew it could have been something in a jacket pocket). I pulled out the vacuum, the diaper bag, a tv tray, and a bookbag. Then I went to start pulling shoes out of the rack when I found the source of the smell. Do you want to know what it was? I'll keep you in suspense for a moment just because I can LOL. It was a dead mouse. Yep you read that right, a dead mouse. It was just sitting there in the shoe rack (it's wire), nothing was touching it so it wasn't stuck or crushed. This must have been the mouse that Peek-a-boo was chasing the other night (we saw it go under the entertainment center). So I donned rubber gloves and picked up the mouse. I had Ethan corralled in the dining room so he was out of the way. He helped me pull things out of the closet but once I found the mouse I immediately held him back. I did however hold it up for him to see (I don't think he's ever seen a mouse before). And of course I took a couple pictures with my phone because what fun is a scavenger hunt for something stinky unless you get a picture of the stinky object to gross out other people. You can see the pictures on my facebook page if you're interested (although I doubt anyone wants to see a dead mouse LOL). I think Ethan was a bit disappointed our scavenger hunt didn't last longer (I'm glad I found it quickly instead of having to drag everything out of the closet). Maybe I will set up a little scavenger hunt this week for him to do in the house he might find that fun.

For everyone who bought a March of Dimes band Thank You we raised $23 to give to the march of Dimes. I do have one extra one if anyone is interested in buying it for $5 and that will be donated to the March of Dimes as well. Let me know.