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

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

Crawling Man

Well I haven't posted in a while and a lot has happened, so I will try to give you all a quick re-cap of the last month. I am about 18 1/2 pounds and 28 1/2 inches. I am getting big and can't believe I will be 11 months tomorrow. I had a few trips to the ER last weekend. On Friday the 30th I had an appointment with Dr. Nasr and that went well. Later that night when mom was getting ready to change my broviac dressing she noticed I had a small tear in the outer opening of my broviac. She called the on-call peds GI doc and they said it would be best to take me in to have it checked out because of the risk of infection. We knew the line was obviously weak because of the outer tear so we did not want it to open all the way. We got the the ER at about 8pm on Friday and then we had to be there until 4am. The peds surgeon on call was in a major surgery so we had to wait for him. It took them about 10 minutes to "repair" my line. Sunday night came along and Mom was getting ready to head out to some friends for the super bowl when Dad yelled for her help. I was crawling around on the floor and my line had come apart and I had blood all over. It would spew even faster out of my line because I was crying. Mom quickly washed her hands and tied a knot in my line. This stopped the blood flow. We quickly packed up to make another trip back to the ER. This time Mom talked to the peds GI on call and told them she and Dad wanted the darn thing out. Mom and Dad couldn't help but think...what if my line had come apart while I was sleeping and I bled to death. The risks are outweighing the benefits at this point in the game. Well because it was Sunday they would not take it out because it requires surgery to remove (not considered urgent) and Dr. Brown feels I still need it (more on that later). They did another "repair" and this time it seemed better. I am a mobile man and this makes it all the more riskier since I spend a lot of time on my belly. Also I am hooked up to my IV machine for 16 hours so Mom has to follow me around holding onto the machine and bag of fluid. She said this is silly and something needs to change.

My creatinine levels in my blood were high, so that can mean I am dehydrated. This is why Dr. Brown feels I still need fluids. We are not sure why all of a sudden I have there elevated levels. Because of this Mom draws my blood on Monday along with taking a sample of my urine to the lab. This allows them to do comparative ratios and keep an eye on my levels. The levels that they look at could affect my kidneys if they are high so that is why they don't want to take a risks and want me pumped full of IV fluids. I drink my formula, but the doctors said I must need extra right now because of my conditions. I see Dr. Brown this Wednesday, so hopefully Mom can discuss things further and we can come to a compromise on my care.

I saw an allergist on Monday Feb 2nd. I have had a few reactions to milk products to include butter and yogurt. I vomited on the yogurt and broke out in rashes around my face from both. Right now I have to stay away from products containing milk...that rules out a lot of things. I can't even have Goldfish crackers! I am still too young to get a reliable allergy test. The doctor said we can get blood now to run a few tests, but there are high chances for false negatives. We can do the needle tests when I am bigger. There is also the possibility that I could grow out of it which would be great. Dr. McMorris was who I saw and I really liked him. Mom had asked him if I could have more severe allergies to food because of my short gut since we don't have any history of food allergies in the family. He said it is probably more likely due to my stomach acids being altered from the Zantac and Zegrid I am on. There are always the goods and bads to all medical intervention. I have been on Zantac basically since birth. They put in in my TPN from the time I was born. I am still on it to help make my stomach neutral so the pancreatic enzymes can work better.

I also met with a Nephrologist (kidney doctor) on Friday Feb 6th. They agreed at this point that I needed more fluids based on my lad work. Mom was hoping they might have had something else to add to the reasons why or more of an explanation, but she didn't get what she wanted.

After my five visits to U of M this past week it was nice to take a break from that Maize and Blue place for a weekend. I have a peds well checkup tomorrow to get my Synagis vaccine and then off to Dr. Browns for full day at U of M again. I have yet to not spend over 4 hours there for one appointment. Pack your lunch and put on your crazy hat for that place.

Well life is good overall. I can't wait to see this white stuff melt and the green grow. Mom says the spring is a beautiful time of year and she is ready to put me in a jogging a stroller so we can both get out of hibernation.

Ben