PFT Results

My PFT results did not really change from my last one I had almost a year ago. They still noted some mild restriction and bronchodilator responsiveness. For the infant PFT they figure a FEV .5 not a FEV 1 and that was 82%. My total lung capacity was 73%. This was up 2% from my last test.

The chloral hydrate really had some side effects this time around. I vomited when I was forced to wake up before going home. The nurse had to do all her vital checks and make sure I could drink something. I was not fond of this wake up process and cried. Mom said I was equivalent to hanging out with a drunk, determined 2 year old when we got home. I could not stand well and kept falling down. I was determined to play with my cars. I did not want to sit on the couch. After falling a few times Mom moved me up to my room so I could be cushioned by the carpet. Eventually she tried to put me to bed and I just cried. Me crying is not a normal occurrence because I love to go to bed. Mom climbed into my crib in hopes this would get me to sleep. I thought it was so fun I jumped on her like a horse and kept laughing and falling back to hit my head on my crib rails. Finally, she left my tired, silly self to go to sleep. I had been up since 4am. I slept for the PFT that was about 1 hour and I slept for maybe 20-30 minutes on the way home. I was so exhausted and loopy by the time I finally took a nap.

The doctor is not going to change my medication routine. I will just continue my daily list as usual. I am not a big fan of doing the vest lately, but Mom makes me compliant. I get to watch anything I chose. I am a big fan of watching Thomas the Train these days. I am pretty sure I have seen all the episodes On Demand about 25 times.

I love going for bike rides with Mom. I ride in the bike trailer on the back and just play with my cars and eat snacks.

Yesterday I had my last seasonal dose of Synagis to protect me against RSV. Two pokes, one in each thigh. I have two more doctors appointments coming up. The short gut doctor in May and Dr. Nasr in the beginning of June. Once those appointments are over I am looking forward to an appointment free summer of fun!

The CF great Strides walk is less than a month away! Please sign up to walk and donate what you can to help me in my fight against CF. We are losing precious lives to CF daily and there is no better time than now to find a cure. You can donate by clicking on the Great Strides link on the right hand side of my blog.

Please send positive thoughts and prayers to 7 year old Conner and his family. Conner is a CF Warrior who is at war with his CF. You can read about Conner on his blog: http://www.notsobrightandshiny.blogspot.com

Together we can fight CF!

Ben

Swallowing my enzymes like an adult!

Well I am now swallowing my 5 Creon 6 enzymes like a super big boy. No more sprinkling of the beads on the applesauce. This will help Mom and Dad while we are on the go...a few less things to pack. No more spoons and jars of applesauce. I am still amazing those parents of mine every day.

April 13th I will have my second Pulmonary Function Test (PFT). It will be just like the first one I had. Wish me luck!

I am obsessed with trains lately. We live a block from the train tracks so I hear them go by all day. Daily, I ask Mom and Dad, with my hands up in question, "choo"?

Choo Choo,

Ben

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