A Day to Celebrate!

Mom just called Dr. Brown's office to get my lab results and everything is in normal range! This is the first time I have been born that all my labs have been right on! Here are the main ones we had concerns with.

PTHI (parathyroid hormone) Results: 47 Normal Range: 10-65

Vitamin D Results: 46 Normal Range: 25-80

Vitamin A Results: 279 Normal Range: 113-647

Vitamin E Results: 7.5 Normal Range: 3.8-18.4

Creatinine Results: 0.3 Normal Range: 0.10-0.60

On June 4th my PTHI was 89 and my vitamin D was 24. My PTHI was too high and my vitamin D was too low. We want to make sure I keep my vitamin levels in normal range, especially vitamin D so I can prevent early onset osteoporoisis which can happen with CF.

I think the beautiful sun helped me with my vitamin D levels. I was a baby vampire living in the hospital last year and never saw the sunlight. Vitamin D is a fat soluble vitamin. It is one that people with CF have a hard time absorbing and on top of that so do people with short gut. I am sure my supplements help, but I have been taking them since I was in the hospital last year. Mom puts me outside without sunscreen for about 15 minutes and then we apply it. If it is late afternoon I don't put any on. It was just on T.V. the other day that people in the U.S. are the most deficient in vitamin D. We apply so much SPF and never let ourselves absorb the healing sun rays.

I am defying the odds and wowing my parents and doctors.

I am the man! Ben

A+

I had two doctor appointments at U of M yesterday. First, I met with Nephrology. They were happy with my progress. My last creatinine level was .2 and that is within normal range. They requested I have a renal ultrasound done to check my kidney size. They have no real concerns, but just want to make sure everything looks good. I then met with Dr. Brown. The entire intestinal rehabilitation team was impressed with my progress. I weighed in at 22 pounds 2 ounces. I was 31 inches long. My height was in the 25th percentile for my age and my weight was about the 10th percentile for my age. I gained an average of 8 grams a day since my last visit. They wanted me to gain between 4-10 grams a day. I was on the high side of their requirement!

I also had to have blood drawn for some labs. I was not a very happy boy when they had to do that. I screamed and cried the whole time. Mom had to hold me down on the table while the phelbotomist found a good vein. She did a good job and got me on the first poke.

Mom and Dad have some videos they want to post of me, but they won't download because the size is too big. They are trying to find a way to compress the files. The picture on my blog post today is my uncle Adam and me at the doctor office yesterday. He helped Mom while we spent the afternoon at the hospital.

Mom and Dad are finally going on their second date since I have come into this world. They are going to dinner and a movie tomorrow. Grandma Carol and Papa Phil are going to watch me. This date is long overdue.

Smiles, Ben

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