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

Boy in a Pink Bow

Well a lot has happened in the past month. I stayed at my Aunt Nicole and Uncle Todd's house the weekend of September 25th. This was the first time Mom and Dad left me for more than a few hours. Mom typed up a 12 page care plan that listed every medication I am on and how to do each and every treatment. They had Michelle and Jake's wedding up at Michigan State University. I had a blast with my cousins all weekend. Cousin Maddie put a pink bow in my hair and Uncle Todd sent the picture to Mom and Dad. I definitely looked liked I was having a wonderful time. This was a long overdue and much needed break for all of us. Mom always asks me if I get tired of looking at her old lady face everyday.

Since everything went well for my two nights at Aunt Nicole and Uncle Todd's, Mom and Dad left me the next weekend with Grandma Carol and Papa Phil for one night. They went to the MSU vs. U of M tailgate. This was the first tailgate they have been to together since I was born.

I now love to tell my parents "No" all the time. I am a dare devil and flip over my chair and climb on it and then it flips down on the floor. I laugh when Mom tells me not to do it. I come very close to jamming my face into the floor when I flip down. I think it is fun!

I have been getting a lot of teeth in now. It took a while for me to get most of my teeth, but they are all coming in at once. While I was brushing my teeth last night there was blood all over my toothbrush. Ouch!

I love to color. I sit with Mom and color in my coloring book. I have drawn on the office closet and on the wall a bit too. I am a real stinker.

High Five, Ben

My Results

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

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