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

Doctors Doctors Everywhere

I had two doctors appointments this week, back to back. Wednesday I went to see Dr. Brown. I amazed the intestinal team once again. I averaged a 6 gram a day weight gain from my last appointment. They were very pleased with that. They wanted me to gain between 4-10 grams a day. I weighed in at 23lbs 8oz. Scales definitely vary because today at my pediatrician I weighed in at 23lbs 12oz. One ounce up from my last peds visit a few weeks ago. I had to have my blood drawn yesterday too. They ordered a CBC, PTHI, PT7, 25hd, ical, mag and phos, TIBC, and ferritin. Lots of stuff I know. I suggest you google it if you want to know more :) No changes were made to my medications. The team told Mom and me to keep doing what we are doing because whatever it is, it is working. Who would have thought that me, little yellow Ethiopian baby, would be where I am today. I never realized how sick I looked until I look back at my pictures. Wow, I was a "golden" boy...lol

I put comparison photos above just in case you don't remember what I used to look like.

I headed to the pediatrician today to get my Synagis injection. This will help protect me from getting RSV. I have to get this shot once a month until the spring. I was such a big boy I wore my face mask to both appointments. Mom said this would help prevent me from catching the other kids cooties! I had to be restrained by Mom's arms while Dr. Shah examined me. I squirmed and screamed so much there were broken blood vessels on the side of my face. I know this routine all too well. I hate when anyone in a lab coat or scrubs comes near me. Mom always reassures me they are there to help me. I say whatever crazy lady, they piss me off.

Time for my nap.

Ben

Boogies and Boo Boos

Well I finally got my H1N1 vaccine today. The awesome nurse at my peds office saved me a single dose vaccine and called Mom to tell her they had it waiting for me. My nurse loves me because she was also my nurse at Beaumont and she remembers how sick I used to be and can't believe I have come so far. I went right in this afternoon with my mask on and got that nasty poke in my thigh. Mom goes later today to get her vaccine. Her doctor finally got the injectable vaccine too. Most places around here had the live nasal vaccine, but we can not get it because of my CF.

I had to go into the peds office this past Friday because I woke up from my nap and vomited and had a temperature of 101.4. The night before I did not sleep well at all. I woke up every few hours crying. I didn't have a temperature then, but it kicked in the next day. I also had a runny nose, but Mom thought maybe I was getting a few more teeth in. They did the nasal swab to test for H1N1 but it came back negative. The test only has a 60%-80% accuracy rate, but they still wrote me a script for TAMIFLU. My pediatrician did not want to take any chances on having whatever virus I had invade my lungs full force and cause me more issues. Mom and Dad were bummed that I got sick, but they have kept me from getting any colds and infections since I was born so that is pretty good. I am doing much better these last few days. Loud and crazy like usual.

I milked being sick and was nice and cozy on the couch. Dad even held my water so I could sip it.

My cat Cali slept in my chair while I was sick. Mom took a picture so she could show me. Naughty Cali in my big boy chair. I told her it doesn't say Cali on the chair it says Benjamin!

Boogies, boo boo's and no no's too,

Ben

Trick or Treat Elmo!

I had a fabulous time on Halloween. I really enjoyed being dressed up as Elmo. I started out my night at my Grandma Carol and Papa Phil's. I thought it was really cool when Grandma gave me a bag of chips. I went out with Mom on our street. I liked most of the trick-or-treating, but I got scared at a few kids in masks. I cried and was not very happy about those frightening kids. I liked my Pez candy the best.

Goodnight and you monsters stay out of sight! And if someone can tell my Mom how to rotate the videos on the blog that would be cool.

Ben