Big Foot!

Happy St. Patrick's Day!

Since my last post I had my 2nd Birthday on March 10th! I had a great time on my birthday. Mom and Dad took me to Steak and Shake for my birthday dinner. I got two steak shooters with frisco sauce and some fries. I downed those two little burgers and loved every bite. Dad and I ate at my picnic table I got from Grandma Carol and Papa Phil. I celebrated my birthday on March 13th with the family. I got a lot of gifts and had a great time with my cousins Josh, Maddie and Sara. I got a police car for one of my gifts and I sure do love it. Mom made me Elmo cupcakes and they were very good.

Today the luck of the Irish was on my side. I had my 3 month check up with Dr. Nasr and it went very well. I weighed in at 25lbs 7oz! I was 34 1/2 inches long! I was up 2 pounds since my last check up with Dr. Nasr in December, but if you remember I had lost a pound in December because I was sick. So basically, I gained 3 pounds in 3 months. My height is around the 50th percentile and my weight is climbing closer to the 25th percentile. Those spoonfuls of coconut oil and large bowls of coconut ice cream, I eat daily, must be working! Mom says this is a great day to have a Guinness or two in celebration of our hard work!

We made a few changes to my medications. I am now going to take a Creon 6 along with my Creon 24 before each meal and snack. I also get to use an albuterol inhaler (I have to use a spacer so I get the medication) instead of nebulizing it. This with save on some breathing treatment time. Dr. Nasr also increased my Hypertonic Saline to twice daily.

I got a new wagon and I love it. I think it is a car and when Mom takes me on walks I say "Wee". When I got back from Ann Arbor today we went for a walk around the block. Now I need a nap so I can get some much needed rest. I was not happy when Mom woke me up at 7:30 this morning. I like to sleep until 8am!

He Shoots, He Scores

Great Results!

Last week I had a bunch of blood work done and some urine labs as well. We went to Beaumont to get the labs done. Mom called the three doctors to get my lab requisitions sent to the house in order to save us a trip to Ann Arbor. The allergist, nephrologist and GI doctors all sent the paper work to the house. Since I seem to have a bunch of medical supplies in my neatly organized large cabinet Mom was able to put a U-bag on me before we went up to the hospital for the labwork. They were able to get all of the blood they needed. Of course I screamed bloody murder and broke quite a few blood vessels in my face like always. Unfortunately I did not have enough urine for all the tests so we waited around the hospital for a bit while I drank my favorite drink of choice, water. After about 45 minutes Mom said it was time to go and we would come back later to drop off the rest of the urine for the tests.

A few days later the nephrologist called to tell us that I had 'beautiful' lab results and they were very happy with all of my numbers. everything was within normal range. My creatinine was .3 and my BUN was 14. My vitamin D level was 47 for quite a while and Mom switched me from the vitamin D2 to D3 in hopes I would absorb it better. Well this time my vitamin D level was 67! All of my iron saturation studies and levels were great as well. Mom and Dad were so ecstatic to hear this wonderful news!

Almost two years and my body has done some amazing healing. It took a lot of patience and hard work, but look at me now.

In one month I will be two years old! I am so excited for this year and can't wait to experience my life even more. I am getting so big and already testing my parents.

When Mom asks me if I want to start my treatments I say "No" or I go up to my booster seat and say "Eat". I know they like me to eat, so that seems to prolong me from having to get strapped in my percussion vest and start my breathing treatments.

I am into "cahs" lately and I love to line them up and race them across the floor. I some how get Mom and Dad to buy me another Hot Wheels or Matchbox car each time we make a trip to Target. I am also into trains as well. I like to call them "choos".

I still go to be really well and love to get in my crib. It is still my safe cozy place. Mom tries to get me to snuggle with her in her bed, but I want nothing to do with it.

As far as food goes I am still a wonderful eater. My favorite food these days are raisins. I like to call those "me's". Mom is surprised I haven't turned into a big raisin I eat so many. I also like the vanilla Oreo's, but I only eat the center and leave the rest on my plate.

~Ben

Mr. Cool

It's a New Year

I felt like a nomad around the holidays. From one house to another, I wasn't quite sure about the abundance of traveling, but I seemed to have a good time.

I actually had a visit to the pediatricians office on Christmas Eve morning because I had a bit of a temperature. My throat was red and irritated. They just said I was fighting a cold and to take Tylenol and drink plenty of fluids. This "cold" progressed into a nasty wet cough after a few days. I seemed to be my silly self, but I did look a bit run down. Since I had cultured positive for pseudomonas aeruginosa again Dec 9th Mom and Dad thought maybe my body was trying to fight that nasty bug that has decided to dwell in my lungs. One big concern with the pediatrician appointment was my weight loss. I lost almost a pound in about a month. One pound for me is a big deal. I was still eating well so it seemed something was causing me to burn the massive amount of calories I eat in a day. I probably eat as many calories as Mom does (or Mom should) which is about 1,200. It is usually a sign that when people with CF lose weight quickly they quite possibly have something going on like an infection.

Mom called Dr. Nasr's office and they decided to put me on Cipro suspension for 21 days. After a few days Mom and Dad could tell it was working. I didn't look as run down and the cough has gotten better. I still have a cough, but it is less frequent. I start the nebulized Tobi on Jan 6th, so hopefully that will team up with the Cipro and keep anything from rearing its ugly head.

That's my yucky medical update now on to the good stuff...

I loved all of my gifts on Christmas. I got a bunch of Elmo stuff. I got a Sesame Street Live Elmo, Hokey Pokey Elmo and a small soft furry Elmo I love to sleep with. I had a blast with all of the family and got to stay up way past my bedtime.

I was crazy with my cousins and ran around non-stop.

I even got to see my "grandparents" from Brazil.

Uncle Adam sent me a gift all the way from Hawaii.

If you ask me what Santa says I can say "Ho Ho Ho".

Anytime something falls or someone drops something I say "Oh No" or "Ow".

I am going to rule this 2010 and show 'em all who's boss!

Cheers to packing on the ounces in 2010!

Love,

Benny :)

Percussion Vest and Santa Claus

Things have been busy in my world. I just saw Dr. Nasr on December 9th. I weighed 23 lbs 11 oz and was 33 inches long. I had a throat culture done, but I won't get my results until sometime this coming week. I also got my second dose of the H1N1 vaccine. Of course I hated those two procedures, but I didn't scream for long. Mom asked Dr. Nasr about me getting a vest again and she finally agreed to it! After my appointment I went down to the pulmonary lab to get fitted for my percussion vest. I fit in the smallest vest available. I am getting the percussion machine made by SmartVest. It will arrive this coming Tuesday. We have to have a respiratory therapist come out to the house to teach us all about the machine. Mom and Dad have already went on the website to learn about it, but it will be nice to have one on one training. The vest should give me a bit more free time in my day. I can wear it while I do my albuterol, hypertonic saline and pulmozyme. I will have to stop the percussion vest when I nebulize TOBI. Mom and Dad always had to wait until they had finished administering those nebulized treatments so they could have their hands free in order to do my chest percussion. Mom has said if she had eight arms like an octopus she could have done both my percussion and breathing treatments simultaneously. I also finished up my 28 days of TOBI on December 8th. I get about 45-50 minutes of free time, each day, to play and be my silly self. I will start my 28 day cycle again on January 6th. I am partially restraint free for the holidays!


Mom went to San Francisco to visit her friends December 3rd-6th. Mom was finally using her ticket she had from last year when I had went back into the hospital around Labor Day. Mom and Dad were both supposed to go out to San Fran for the MSU vs. Cal game last August. Sadly Dad had already flown out there and had to fly back home the next day because I was sick.


While Mom was gone Grandma Carol and Papa Phil watched me during the day on Thursday and Friday. It was great they were able to watch me because Dad had to work. If they hadn't been available it could have been like the movie Home Alone. Ahhhhh! I had a nice time with them. I said, "Hi Mama" for the first time on the phone when Mom called. Dad took me every morning to get a hash brown from McDonald's. I had a great time with Dad and a nice break away from Mom. We both missed each other a lot. I think she was more excited to see me because she woke me up when she arrived home.


I went to visit Santa Claus. I still was not a big fan of the man this year. I would not sit on his lap, but the silly looking man still appeared in my pictures.


Merry Christmas!


~Ben