Happy Heart

I had my echocardiogram and my infant pulmonary function test (IPFT) on Tuesday. They had to sedate me with chloral hydrate. It was an orange tasting medication I took orally. I had to get up at 5am and had to stay awake until my test at 9am. Grandma Carol went with Mom and me so she could keep me up while Mom drove us to Ann Arbor. I was sedated for about 2 hours for both tests. The small VSD that was present in my heart earlier has now closed! That was great news to hear. My cardiologist said he would not need to see me for any follow up appointments so that was good to hear. He did say he noticed I have a slight abnormality in the flow of my heart. It is called an Azygous which is a continuation of my IVC (inferior vena cava) to my right SVC (superior vena cava). This does not have any effect on my health. It is just information doctors would need to know if I ever required a heart catherization. My IPFT came out pretty well too. You can see me getting the test above. I had to have my head down like that so my airway would be as open as possible. My 25-75 Flows were at 106%. This is where they test the smaller airway function. My FVC (Forced Vital Capacity) was at 73%. They did notice I have mild restriction which could be caused by my smaller size compared to the "average" child my age without CF. I go see Dr. Nasr June 8th and she will explain more of the test to my Mom. The nurse said my results were good and there is nothing to worry about. I was a bit loopy after my test. I went to lunch with Mom and Grandma Carol and I was being silly dancing to the music at the restaurant. I passed out on the way home and slept most of the afternoon.

I start back on TOBI today. It adds another 40 minutes of breathing treatments to my day. It seems to be helping my lungs, so I will try and tolerate it.

I can walk when I try, but I tend to crawl most of the time. I love using my walker. Mom and Dad took it away from me for a few days, but I just crawled instead.

I am about 29 3/4 inches tall and about 21 pounds. I will try anything to eat. I like toffuti cheese and sausage patties. I have a sausage patty for breakfast every morning. I usually have some banana's or veggies with my sausage in the morning. I have tried tuna pasta salad and liked that. I also tried peanut butter for the first time the other day. I liked that a lot. Mom was nervous to have me try it because of my milk allergy. She had the EpiPen ready just in case. I did fine though, thankfully! It just gives me another delicious way to get in some fat and calories.

We had a nice Memorial Day Sunday at Aunt Olivia and Uncle Mehul's. I got to play with my buddy Nicholas. He had a cool ball pit, full of balls. I had fun throwing them out all over. Nick told me it was not nice. I thought it was cool so I continued to chuck them. It was great to see all of Mom and Dads friends that were there.

Sunny Smiles,

Ben

Great Strides 2009

We had the Cystic Fibrosis Great Strides walk yesterday. The rain stopped a few hours before the walk. I stayed at home with Dad while Mom went to the walk. So many family and friends showed up to support me and my fight! My parents and I are so touched by each and everyone of you who have donated and walked to show your support. We definitely feel the love. It makes us hopeful that with this great support, from wonderful people like you ,we will find a cure.

I am doing very well. I am no longer on IV fluids. My blood results have been great without having the extra hydration. I am keeping myself well all on my own! Not being hooked up to a pump at night is great. I am up to 30.5 calories per ounce for my Elecare formula. Since I have a milk allergy I will probably be on the Elecare for quite a while. I can't have any milk products or products with milk proteins (casein, whey) in them. That is a lot of stuff. I am a mad man with my walker. I run with it and plow through anything in my way. I can stand on my own for a few seconds and then I plop down on my bum. I think that is a fun game to play...stand up, plop down, stand up, plop down. I am finally getting to sleep about 8-9 hours without having to wake up to be changed or eat. Mom loves that she can finally sleep for longer periods of time too. I am not on TOBI this month so that is a nice bonus as well. I don't have to be restricted as much during the day. At my age I like that. I hate when Mom and Dad make me sit still for my treatments. I am a very good boy for all the stuff I do have to do.

I also got my first haircut. Mom cut off my curl and saved it. Dad took the hair trimmer and tried to even up the sides. I liked the buzzing of the trimmer. I am really getting to be such a big boy.

Happy Spring!

Ben