Happy St. Patty's Day!

I went for a nice long walk today! We walked to Rite Aid to pick up my scripts and to the bank to deposit my birthday money. My pharmacist couldn't believe how big I am. I wore my cool new shades and ate animals crackers while Mom pushed me in my stroller. I love being outside. It is a beautiful day!

~Ben

My 1st Birthday!

Well I celebrated my first birthday on March 10! It was a bittersweet day because we had a funeral for my great grandma Madeline on the same day. I will miss you great grandma. I thought it was really cool when all the people at the funeral luncheon sang me happy birthday! I was all smiles...big cheese. I didn't like my cupcake...I threw most of it on the floor. It was a dairy free chocolate cupcake and I even gagged on it. Mom is going to try a new recipe for my little celebration with the whole family on Sunday. This time she is going to try vanilla with "butter" cream frosting. The chocolate cupcakes were from a box. I don't really like sweet foods anyhow. I love my liquid meats and my favorite veggie is peas. I am like an old man when it comes to taste. I love savory, salty foods...I need the extra sodium though so that is good. I could use the extra calories from the sweets though!

Mom and Dad didn't have their camera while we were out on my birthday so we don't have little video to share, but there were a couple of pictures from my grandmas camera. Mom and Dad told me they will get a video of me on Sunday.

The first year of my life has been one crazy ride, but I am doing very well now. I am getting my top two teeth and standing up all over the furniture. I think I will be walking soon. I am still a very good boy when I get put down for naps and bed time. I love to stand in my crib and play with my IV pump. I have to be careful though because I tend to wrap myself up in my tubing...kind of scares Mom and Dad. I also have a CD alarm clock that blinks 12:00 and I love to look at it. Just like Tom Hanks had a volleyball named Wilson I have an alarm clock named Sony.

Well I have to get back to my nap...I had to get three shots (Synagis (2) and Prevnar) yesterday and my teeth are killing me!

Life is good~

Ben

Grandpa gums

I can't believe I will be one year old next Tuesday! It has been one heck of a year and I am happy to celebrate on a healthy path. I am down to two days of TPN a week. Hopefully by my next appointment with Dr. Brown (March 18th) I will be able to go off of it. I am still being hydrated with sodium chloride bags the other five days I am not on TPN. I am getting 25 calories per ounce of formula so we went up a calorie per ounce...slowly increasing. I love water so I drink about 6 ounces of water a day to help keep me hydrated and keep my kidney levels down. The more I drink the sooner I will be off of this darn IV hydration. Mom puts two diapers on me at night and a vinyl training pant. I still pee through that sometimes! Too many fluids if you ask me.

Today Mom and I did the TOBI dance! Today was our last day of 28 days on so now we have a break for 28 days before I am back on it. Yee-haw! That saves us about 45 minutes a day. I now only have to do three different breathing treatments a day compared to five. I like that.

I am getting my top two teeth. The other day my gums were bleeding and a piece was hanging off where those ouchy teeth were cutting through.

I love to eat big people food too. I have had chicken, hot dogs, McDonald's hash browns, ground beef, sweet potato fries, hummus, eggs, and sausage. I know some of those foods are not very good for you, but they are high in calories for me. I still eat my veggies and fruit to stay healthy. No dairy products or foods with milk proteins such as hey and casein. That eliminates a lot of fattening junk. There are many ways to substitute and improvise though.

I saw Dr. Nasr yesterday. I weighed in at 19 pounds 8 ounces! I am hoping I will be 20 pounds by my first birthday. They were very happy with my progress. Now that I am going to be one I will be on an every three month appointment schedule with her. My next appointment is scheduled for June.

I can pull myself up and I am getting the itch to walk. I have a walker and I like to try and use that to assist me in walking around the living room.

I think I am going to have my big boy car seats put in the car this weekend. I get to face forward soon too. I am excited for that.

I am off for a walk in my stroller! ~Ben