Birthday suggestion

People have been asking us what they can get Ethan for his b-day. There isn't much for us to suggest b/c he doesn't really need anything. I just did however think of one thing, he has a college fund set up. Donations to his fund would help him in the future. I started this account when he came home from the hospital. He's already got more than I ever had growing up. So money for his college fund would be a good gift. I will put a "Donate" link in his side bar for anyone who would like to make a donation to his college fund.

Oh what a day yesterday was. Ethan was in some kind of a funky mood. One minute he would be completely content then all of a sudden he would screech at the top of his lungs in a temper tantrum then after a few mins that would pass & he would be all happy again. It didn't matter what he was doing or if he was already getting his way. I can't say that it was a bad day all together but at the end of the day I was done with the screeching. It was so shrill that it left the ears ringing. He was such a busy boy yesterday. So many things to play with so few hours in the day.

Today is going to be just as busy. A friend of Matt's is holding a b-day party for her daughter & Matt wants to go. Me I don't care either way. Right now Ethan is crawling all over me & watching his daddy mow the lawn from the front window. He loves to watch his daddy. He is all about his daddy at this time. When Matt is at work Ethan is all over the house saying "dadada" like he is looking for dadada. I have to keep reminding him that dadada is at work & will be home soon.

So far it is looking like Ethan will pretty much be able to stay on a fairly normal diet. In the last 2 days he has only taken in 20g - 30g of protein. We don't eat meats every day so neither does he. I think his next test will come back normal (well normal for Ethan) since he is not eating a ton of protein like he was for the last test that came back so high.  I think he is eating a normal amount of protein for a child his size & age. Somedays he can be very picky & will essentially turn his nose up at anything we try to give him & other days he eats everything we give him. We can't force him to eat more than he wants so if he doesn't take in the 50g a day then he doesn't. I'm not going to throw a fit over it. Since his levels were so high at the last test we are keeping an eye on his sleep patterns, & muscle tone. If he were to start sleeping more than he normally does and/or start to show signs of stiff muscles then it is a sign that his levels have been too high for too long & something would have to be done to get them down before damage is done. So far there is nothing noticeable so we aren't concerned at this time.

I still have to find some time to get out & shop for him. Obviously I don't want him to see what he's getting for his b-day. I should be able to get out this weekend as long as Matt doesn't get paged into work. We're getting him a little pool & stuffed Grover. It looks like we are expecting just about everyone at his party as no one has called to tell us they are not coming. Somehow though we have a feeling that there are a lot of people who aren't coming that just didn't bother to let us know. They'll just be missing out on a great time. We'll be going out this week to get the food for his party. We wanted to wait to the very last minute when we had a better idea of how many people we are cooking for.

Looking Back

I can't believe that in 4 days Ethan is going to be 1! I look back at our life before he was born & realize just how much he has changed it. All for the better of course. Before Ethan we were going out almost every weekend. Now we are happier to just stay home & be with him. We once had money now we don't. LOL. Not totally true we just would rather spend our money on him than on movies, games, ect. Ethan has made our lives feel more complete. He keeps us on our toes. He's on the move from the time he gets up in the morning to the time he goes to bed at night. We can't watch any of our favorite shows until he goes to bed. We spend each evening chasing him around the living room getting him out of the things he's not supposed to be getting into. His favorite no-no is the floor lamp. He likes to use it as support for standing. He also tries to pull the plug out of the outlet. There is not much time to relax until he's in bed for the night. Even though it sounds bad it's not. He is just fun to watch. Now that weather is starting to get warmer we can take walks after dinner. The last few evenings have been a bit rainy or chilly for him to be out. 

I look at Ethan now & it's so hard to believe that he is the same little 3 pounder that entered into this world a year ago. He has come a long way since his birth. There was concern in the beginning that he would be a few months behind but he showed the same determination he showed in the NICU & he caught up fairly quickly. Ethan may have had a bit of a rough start in life but it sure hasn't had any effect on him. He has gone from this little tiny red being to a beautiful little man. He's a very determined stubborn little man. He didn't stand a chance both of us are pretty stubborn. It's a good trait to have. He's very independent as well. He'll let us know if he wants us to play with him or if he wants to play on his own. He's very clear in what he wants.

Ethan is getting better at being able to stand on his own without any assistance. When he stands on his own he claps for himself. He knows he's doing something good. He took 2 steps last night on his own. He's figuring out his center of gravity. Not much longer & he will be running everywhere. 

It's been the most amazing journey watching him grow. I never thought that I could love anyone or anything as much as I love Ethan. Ethan's birth has brought so much happiness into our life. We both love him so much. It's amazing how much a baby can change the way you look a things.

Important - Please read carefully

This is important information regarding Ethan's Hyperpe. As you read this please read it carefully.

We got the results back today from Ethan's blood work. His level went up to 8.65. He took in 2500g of phe per day. This is much more from the 1600 he took in the last time. His Tyrosene levels were normal at 104. We are going to have to change how we are feeding him. We have already stopped giving Ethan the powdered milk with each meal which is 300g less. What we are being told to do is Ethan can only have 50g of protein per day at this time. Each gram of protein that he takes in has 45g of phe in it. By taking in only 50g of protein he will only be taking in 2250g of phe in a day. We need to keep track of how much protein is in each thing that Ethan eats. In order to measure how much grams he is getting when we give him chicken, potatoes, ect things that don't come with the diet label on them we will need a gram scale to measure it all out. Matt & I will be getting one in the next few days. We will be creating a chart to help us calculate out how many grams of protein are in the liquids that he drinks. To give an example if we give him 7oz of pure formula that is 3.8g of protein. For every 5oz of his formula that he drinks he is getting 2.1g of protein. If he is getting regular cows milk we know that there is 8g of protein per every 240ml of milk. 8oz of cows milk is 8g of protein. 1 egg is 6g of protein. We have to watch labels now. Some fruits have 0g protein & those are ok for him. Ethan will be tested again in 3 weeks to see where his levels are at with the new diet. Deb will also be sending us a booklet that has protein counts for things that don't come with a diet label.

Here's what all this means. Ethan CANNOT have anything that we don't know about. If we are eating at some ones house we need to know how much protein is in the fruit, milk, ect before he eats it. For things like meats, potatoes, vegetables we will need our gram scale to determine that.

It needs to be understood that this diet has to be followed exactly. A prolonged amount of time with levels this high could lead to brain damage, or mental retardation. As his levels were only this high for no longer than 20 days there is no great concern there. 

My busy little man

Busy, busy, busy Ethan is. He is conatantly on the move. From 9 in the morning to 9 at night he is in perpetual motion. It doesn't matter how tired he is he will continue to play, crawl, & get into things. I always wait for the moment that he will just fall down asleep in the middle of his busy play schedule but it never happens. I always put him down for a nap at the same time everyday. Whether he sleeps or not is up to him. Most of the time he will throw everything out of his crib first then play with the toys on the bars. I listen to him on the baby monitor & it always takes at least an hour for him to settle down. 

Now that he has started to say dada he says it all the time. In the morning when I go into his room while I'm picking out his clothes for the day he stands in his crib "babble babble babble dadadada babble babble dadadada. It's likes he's asking "Where is dada? When will he be home?" I always tell him dada's at work he'll be home soon enough. Right now he's a daddy's boy. He's all about his daddy.

Just to make mention of this again I had brought up in an earlier post a few suggestions for Ethan's birthday. He could use 18M clothes for the fall, little books (something he can't totally destroy), any kind of push toy to help him with his walking, toys to use outside. We are getting him a baby pool so he can cool off this summer.  There is no theme to his party. I'm keeping it very simple. 

We have not gotten the results of his labs yet on his hyperphe. We don't expect to hear anything until at least Thurs. It won't be surprising if the results are on the high side. We gave him more protein than he would normally get in a meal. He was getting the powdered milk with each meal & we had started mixing milk in with his formula. My goal is to have him off formula by his birthday. He is already at half & half. I think he's ready to move on to 3/4 milk 1/4 formula which I will be starting tomorrow.

He finally clapped

We both got to witness Ethan clapping for the first time today! We were sitting in the backyard playing in the grass when he just started to imitate Matt. We managed to catch a little bit of it on the camera. It's really cute. Now anytime we clap he follows suit. He was also standing all on his own too. I finally got to see him take an unassisted step yesterday. It's more like a half step but it's still a step.

Here is the video of Ethan clapping:

I missed it!

Last night Matt was in the dining room with Ethan & Ethan was cruising around holding onto a plastic bin. All of a sudden Ethan let go of the bin & was standing on his own. Next thing Matt knows Ethan took his first unassisted step! I was in the living room so I missed it. I missed Ethan's first unassisted step! Matt was so happy that for a change he didn't miss a first. I have been trying to get him to do it again but he gives me this look that says "Fat chance mom. You missed it the first time." LOL. He likes to do things when we don't ask him to do it. I'll just have to wait for him to do it again. I knew it wouldn't be much longer before he tried to walk unassisted.