I cultured pseudomonas aeruginosa (PA) in my last throat culture. I had two clean ones and this third one would have given me a break from TOBI, but I started back on TOBI again today. I will continue to do the TOBI 28 days on and 28 days off until I get three clean cultures in a row. I get throat cultures every three months. So that is about another 9 months or so from now. Since it is not an exact science I might have never really gotten rid of the PA since I can not produce sputum for the doctors yet. They just make me gag when they swab my throat.
My kidney ultrasound came back normal so that was good. Nephrology will continue to follow about every 6 months just to make sure things stay normal.
I am getting so big Mom is starting to sell my little baby things. It makes her sad, but we have to make room for all my big boy stuff. We are trying to simplify life around here by purging the things.
I also saw my pediatrician last week and got the rest of my vaccines. Dr. Manistow said I am all set until I go to school. Mom said she doesn't even want to think about that yet. Way too soon for those thoughts.
Love, Big Ben
Wednesday, September 16, 2009
Friday, September 4, 2009
18 Months
I will be 18 months old on September 10th! I can't believe all I have endured in this short amount of time. I am doing very well and had another great check-up with Dr. Nasr on September 3rd. I weighed in at 22lbs 5oz and was 31 3/4 inches tall. This put my weight in the 9th percentile and my height about the 20-25th percentile. They did a throat culture and if this one is negative for bacteria I will not have to do TOBI. I had a kidney ultrasound too. I haven't received the results yet, but I think they will be good. The ultrasound tech gave me a little DVD player with a Dragon Tales DVD to watch. I laid on my belly and pushed all the buttons while she examined my kidneys. I was such a good boy that Mom bought me a little Elmo at the hospital gift shop. I am a real big Elmo fan. I think I am going to be Elmo for Halloween.
I am developing pretty fast. I am running around and climbing on the furniture. I still love to throw balls and I can kick them well too. I love to read books or should I say turn the pages :0 I love to go to the grocery store and point to all the foods I know and love to eat. I saw Pop Tarts and raisins while at Target today. I made Mom open me a little box of raisins. I have this loud screeching noise I do that sometimes allows me to get my way. I am a real pickle.
I also went up north to Leland to stay at Honor's aunts cottage on Little Traverse Lake. It was just for a few days, but I had fun. I liked walking on the docks and looking at all the yachts. I made motor boat noises as we walked. It was a fun place to discover.
I am getting ready for football season. Go green! Go white!
Love, Ben
I am developing pretty fast. I am running around and climbing on the furniture. I still love to throw balls and I can kick them well too. I love to read books or should I say turn the pages :0 I love to go to the grocery store and point to all the foods I know and love to eat. I saw Pop Tarts and raisins while at Target today. I made Mom open me a little box of raisins. I have this loud screeching noise I do that sometimes allows me to get my way. I am a real pickle.
I also went up north to Leland to stay at Honor's aunts cottage on Little Traverse Lake. It was just for a few days, but I had fun. I liked walking on the docks and looking at all the yachts. I made motor boat noises as we walked. It was a fun place to discover.
I am getting ready for football season. Go green! Go white!
Love, Ben
Friday, August 7, 2009
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
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
Thursday, August 6, 2009
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.
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
Tuesday, July 21, 2009
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
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
Monday, June 29, 2009
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
Friday, June 12, 2009
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
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
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