Daddy Day Care

Mom got back last night from her long needed weekend away. She went camping in Wisconsin with her friends and went to the Dave Matthews Band concert. While she was away it was just me and Dad. Dad took me to run errands. We went to Costco and the grocery store. I played with my soccer ball while Dad watered the lawn. We worked on stacking blocks and I was able to stack 10! I got into all of my parents old CD's and thought it was cool. I had a great time at Daddy Day Care.

Our camera has been broken for a few weeks now and we finally got our new one in the mail this past weekend too. Dad took quite a few photos of me and a few videos.

I have learned to bark like a dog...more of a deep growl. Whenever I see a dog, I bark. We have a lot of dogs that walk by our house everyday so I get a lot of practice.

I love Elmo and I can say his name. I am working on Big Bird and the other Sesame Street gang. I can point out most of the characters in the Sesame Street books I have. I love to read and I especially like to turn the pages of the book.

July has been a great month. I do not have any scheduled doctor appointments! I start back on TOBI Thursday. Other than that things have been quiet and I like that. This summer was long overdue after last year's yucky summer.

Life is good. ~Ben

Summer Fun!

I am really enjoying my summer. I had a clean throat culture, so if I get one more clean culture in September I will go off of TOBI. It is possible down the road I could have to go back on it, but my parents and I are loving this great news for now. I just ended my 28 days of TOBI, so I am free for 28 days. This free time is being well spent at the pool and outside. I love going to the pool and swimming. I cling onto Mom like a little monkey when I first get in, but I start to warm up to it. I love all the kids at the pool too. I always walk up to the bigger kids to play with. I am officially a walker and have been for about 4 weeks. I can stoop down to pick up my toys. I pop right back up and keep going. I never sit still. I make it very hard for my parents to do percussion on me. Making me sit on their lap for 20 minutes is not on my agenda. I have more important things to concur. Summer is grand.

~Ben

No More Broviac!

On June 4th I had my broviac removed! I was not fond of going in for surgery, but it is finally great that I can be a free naked baby. I can be crazy in my baths now and splash as much as I want. I can go shirtless just in time for the summer heat! One less thing for Mom and Dad to worry about too.

My days now consist of 5 breathing treatments a day for about a total of 1 1/2 hours. I also get percussion 20 minutes twice a day. I am on the go so it is hard to keep me still for my percussion. I get mad, but it gets done. I got to see Dr. Nasr on June 8th. My appointment went well. I weighed in at 21 pounds 3 ounces. I was almost 30 inches long. I was such a good boy I even wore my face mask while I waited to be called in for my exam. The receptionist gave me some Sesame Street stickers and I thought that was pretty cool. I can say some words now too. My favorites are cat, cracker, and eye. I am just learning about my belly button since the broviac was removed. I think it is cool to put my finger in it.

Mom just bought me a few new foods to try from the health food store. She bought me a coconut milk ice cream and I am not sure about it because it is cold. Mom thinks it is even better than regular ice cream. I also tried falafel today and I liked that.

My Bama Beth came to visit me yesterday. It was nice to see her. She sat in the car with me, so Mom could run into the stores quickly and get what she needed.

I think I am going to head to the community pool this weekend to go swimming for the first time!

Splashes,
Ben

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

Check me out!

I am walking all over the house with the assistance of my walker. I get really excited and scream when I am on the go.

I had a great time in Atlanta visiting my Great Uncle Norm, Jerry, Ms. Jenny and her kids. I also got to hang out with my cousins, Josh and Maddie. Maddie was a big helper. My Aunt Nicole got me a cool Elmo Easter basket filled with all sorts of goodies. It even had a little blow up Bozo the clown. My hair is kind of like Bozo's hence the gift. I went to the Atlanta Zoo and was more interested in the people than the animals. It was a very packed day, so kids and adults were everywhere. I did very well on the car ride there and back. I watched a few Elmo DVDs and listened to my Curious George soundtrack. I even did my TOBI breathing treatments in the car.

The best part of the trip for Mom and Dad was when I woke up Easter morning. After I ate, I was laying in between Mom and Dad and I fell back asleep until 9:00 a.m.! That was the first time I have ever fallen asleep with them in their bed. I am so used to sleeping in my own bed I always think it is time to play whenever I am in their room.

I am getting outside for nice long walks whenever the sun is shinning. The past few days I have been saying, "Rain, rain, go away, come again some other day."

~Ben

Few Week Summary

Well it has been a while since I last wrote. I am no longer on TPN! I still get sodium chloride bags every night for hydration. We are slowly weaning down on the volume infused as long as my labs come back with good numbers. Mom draws my blood every Monday and now we also have to draw it every Thursday to check my ionized calcium levels and phosphorus. I have to start a new medication for my vitamin deficiency. It is called Rocaltrol. We have to make sure these levels stay within normal range to prevent bad side effects. I am starting to eat a lot more big people food. I love fish and bologna. I had spaghetti and pasta sauce the other day and liked that a lot too. I am going to take my first trip with my parents for Easter. We are driving down to Atlanta to see my uncle Norm. Thankfully my Dad has a van so we can haul all my stuff...including my IV pole and medication cooler! Who knew a boy my size would need to pack so much stuff.

Go STATE!

Ben