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

A Day to Celebrate!

Mom just called Dr. Brown's office to get my lab results and everything is in normal range! This is the first time I have been born that all my labs have been right on! Here are the main ones we had concerns with.

PTHI (parathyroid hormone) Results: 47 Normal Range: 10-65

Vitamin D Results: 46 Normal Range: 25-80

Vitamin A Results: 279 Normal Range: 113-647

Vitamin E Results: 7.5 Normal Range: 3.8-18.4

Creatinine Results: 0.3 Normal Range: 0.10-0.60

On June 4th my PTHI was 89 and my vitamin D was 24. My PTHI was too high and my vitamin D was too low. We want to make sure I keep my vitamin levels in normal range, especially vitamin D so I can prevent early onset osteoporoisis which can happen with CF.

I think the beautiful sun helped me with my vitamin D levels. I was a baby vampire living in the hospital last year and never saw the sunlight. Vitamin D is a fat soluble vitamin. It is one that people with CF have a hard time absorbing and on top of that so do people with short gut. I am sure my supplements help, but I have been taking them since I was in the hospital last year. Mom puts me outside without sunscreen for about 15 minutes and then we apply it. If it is late afternoon I don't put any on. It was just on T.V. the other day that people in the U.S. are the most deficient in vitamin D. We apply so much SPF and never let ourselves absorb the healing sun rays.

I am defying the odds and wowing my parents and doctors.

I am the man! Ben

A+

I had two doctor appointments at U of M yesterday. First, I met with Nephrology. They were happy with my progress. My last creatinine level was .2 and that is within normal range. They requested I have a renal ultrasound done to check my kidney size. They have no real concerns, but just want to make sure everything looks good. I then met with Dr. Brown. The entire intestinal rehabilitation team was impressed with my progress. I weighed in at 22 pounds 2 ounces. I was 31 inches long. My height was in the 25th percentile for my age and my weight was about the 10th percentile for my age. I gained an average of 8 grams a day since my last visit. They wanted me to gain between 4-10 grams a day. I was on the high side of their requirement!

I also had to have blood drawn for some labs. I was not a very happy boy when they had to do that. I screamed and cried the whole time. Mom had to hold me down on the table while the phelbotomist found a good vein. She did a good job and got me on the first poke.

Mom and Dad have some videos they want to post of me, but they won't download because the size is too big. They are trying to find a way to compress the files. The picture on my blog post today is my uncle Adam and me at the doctor office yesterday. He helped Mom while we spent the afternoon at the hospital.

Mom and Dad are finally going on their second date since I have come into this world. They are going to dinner and a movie tomorrow. Grandma Carol and Papa Phil are going to watch me. This date is long overdue.

Smiles, Ben

Daddy Day Care

Mom got back last night from her long needed weekend away. She went camping in Wisconsin with her friends and went to the Dave Matthews Band concert. While she was away it was just me and Dad. Dad took me to run errands. We went to Costco and the grocery store. I played with my soccer ball while Dad watered the lawn. We worked on stacking blocks and I was able to stack 10! I got into all of my parents old CD's and thought it was cool. I had a great time at Daddy Day Care.

Our camera has been broken for a few weeks now and we finally got our new one in the mail this past weekend too. Dad took quite a few photos of me and a few videos.

I have learned to bark like a dog...more of a deep growl. Whenever I see a dog, I bark. We have a lot of dogs that walk by our house everyday so I get a lot of practice.

I love Elmo and I can say his name. I am working on Big Bird and the other Sesame Street gang. I can point out most of the characters in the Sesame Street books I have. I love to read and I especially like to turn the pages of the book.

July has been a great month. I do not have any scheduled doctor appointments! I start back on TOBI Thursday. Other than that things have been quiet and I like that. This summer was long overdue after last year's yucky summer.

Life is good. ~Ben

Summer Fun!

I am really enjoying my summer. I had a clean throat culture, so if I get one more clean culture in September I will go off of TOBI. It is possible down the road I could have to go back on it, but my parents and I are loving this great news for now. I just ended my 28 days of TOBI, so I am free for 28 days. This free time is being well spent at the pool and outside. I love going to the pool and swimming. I cling onto Mom like a little monkey when I first get in, but I start to warm up to it. I love all the kids at the pool too. I always walk up to the bigger kids to play with. I am officially a walker and have been for about 4 weeks. I can stoop down to pick up my toys. I pop right back up and keep going. I never sit still. I make it very hard for my parents to do percussion on me. Making me sit on their lap for 20 minutes is not on my agenda. I have more important things to concur. Summer is grand.

~Ben

No More Broviac!

On June 4th I had my broviac removed! I was not fond of going in for surgery, but it is finally great that I can be a free naked baby. I can be crazy in my baths now and splash as much as I want. I can go shirtless just in time for the summer heat! One less thing for Mom and Dad to worry about too.

My days now consist of 5 breathing treatments a day for about a total of 1 1/2 hours. I also get percussion 20 minutes twice a day. I am on the go so it is hard to keep me still for my percussion. I get mad, but it gets done. I got to see Dr. Nasr on June 8th. My appointment went well. I weighed in at 21 pounds 3 ounces. I was almost 30 inches long. I was such a good boy I even wore my face mask while I waited to be called in for my exam. The receptionist gave me some Sesame Street stickers and I thought that was pretty cool. I can say some words now too. My favorites are cat, cracker, and eye. I am just learning about my belly button since the broviac was removed. I think it is cool to put my finger in it.

Mom just bought me a few new foods to try from the health food store. She bought me a coconut milk ice cream and I am not sure about it because it is cold. Mom thinks it is even better than regular ice cream. I also tried falafel today and I liked that.

My Bama Beth came to visit me yesterday. It was nice to see her. She sat in the car with me, so Mom could run into the stores quickly and get what she needed.

I think I am going to head to the community pool this weekend to go swimming for the first time!

Splashes,
Ben

Happy Heart

I had my echocardiogram and my infant pulmonary function test (IPFT) on Tuesday. They had to sedate me with chloral hydrate. It was an orange tasting medication I took orally. I had to get up at 5am and had to stay awake until my test at 9am. Grandma Carol went with Mom and me so she could keep me up while Mom drove us to Ann Arbor. I was sedated for about 2 hours for both tests. The small VSD that was present in my heart earlier has now closed! That was great news to hear. My cardiologist said he would not need to see me for any follow up appointments so that was good to hear. He did say he noticed I have a slight abnormality in the flow of my heart. It is called an Azygous which is a continuation of my IVC (inferior vena cava) to my right SVC (superior vena cava). This does not have any effect on my health. It is just information doctors would need to know if I ever required a heart catherization. My IPFT came out pretty well too. You can see me getting the test above. I had to have my head down like that so my airway would be as open as possible. My 25-75 Flows were at 106%. This is where they test the smaller airway function. My FVC (Forced Vital Capacity) was at 73%. They did notice I have mild restriction which could be caused by my smaller size compared to the "average" child my age without CF. I go see Dr. Nasr June 8th and she will explain more of the test to my Mom. The nurse said my results were good and there is nothing to worry about. I was a bit loopy after my test. I went to lunch with Mom and Grandma Carol and I was being silly dancing to the music at the restaurant. I passed out on the way home and slept most of the afternoon.

I start back on TOBI today. It adds another 40 minutes of breathing treatments to my day. It seems to be helping my lungs, so I will try and tolerate it.

I can walk when I try, but I tend to crawl most of the time. I love using my walker. Mom and Dad took it away from me for a few days, but I just crawled instead.

I am about 29 3/4 inches tall and about 21 pounds. I will try anything to eat. I like toffuti cheese and sausage patties. I have a sausage patty for breakfast every morning. I usually have some banana's or veggies with my sausage in the morning. I have tried tuna pasta salad and liked that. I also tried peanut butter for the first time the other day. I liked that a lot. Mom was nervous to have me try it because of my milk allergy. She had the EpiPen ready just in case. I did fine though, thankfully! It just gives me another delicious way to get in some fat and calories.

We had a nice Memorial Day Sunday at Aunt Olivia and Uncle Mehul's. I got to play with my buddy Nicholas. He had a cool ball pit, full of balls. I had fun throwing them out all over. Nick told me it was not nice. I thought it was cool so I continued to chuck them. It was great to see all of Mom and Dads friends that were there.

Sunny Smiles,

Ben

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

Liquid Meat

Well my surgery that I last posted about was cancelled. I was very happy about that. When Dr. Brown talked it over with Dr. Tittlebaum they decided to wait until I grow more before they put my broviac in further. The line is out a bit, but they felt it was in far enough for now. My echo will be on hold for now as well. They diluted my TPN solution, so the sugar concentration wouldn't scar my veins. I am still getting the same amount of calories from it, but more volume due to the dilution. Hopefully I will be off of TPN soon and that way we could schedule the surgery for removal! I am not growing as rapidly as I was, but I am still gaining. We had to switch to my Dad's insurance and the home nurse we had is not in our new network. Mom is now drawing my blood every Monday and she takes it to the lab at Beaumont. Thankfully she can draw my blood from my line and doesn't need to poke me! One benefit we get from the broviac. I started to eat pureed meats in hopes that would help me get more calories in. Mom mixes olive oil in with it. I really like the meats and so do my cats. They come and cry while Mom feeds me. I get a kick out of it. Mom and Dad tell me my stool smells of garbage now...very rotten garbage. I also got to try freeze dried apple bits and I like those. The only thing is with my short gut...I don't have much travel time for the apples to digest, so they come out whole. I also am trying a new enzyme, Creon 5, because my bum has a horrible rash we thought we would try and see if it makes any difference. Those little enzymes make my skin burn and bleed. Back to trying 50 different creams...from scripts to over the counter. My vitamin D levels were low again so we increased my ergocalciferol from .125ml to .25ml. My vitamin A and E levels were on the low end of the normal range so we have increased my AquaADEK vitamins from 1ml to 2ml's. I am also decreasing my Zantac and adding in omeprazole. These antacids help keep the acid in my stomach low so the enzymes can do their job. I finally off of TOBI for 28 days...that adds about one hour of free time to my days. I like that! We got a call today from Dr. Nasr and my throat culture from last week is showing that I still have PA...maybe the form of bacteria I have is resistant to the TOBI. I have a bit of a cough again too. The culture is not done growing, so Mom will call Dr. Nasr towards the end of the week and we will come up with a plan of action then. Please pray that my ugly PA bugs go away!

Ahhhhh....da da,

Ben

Bundle of new "firsts"

Well I have experienced quite a bit these last few weeks. I got a bunch of gifts from that goofy guy I saw at the mall. I guess he isn't so scary after all. Mom and Dad made me dress up in a few outfits for Christmas like I was in a photo shoot.

I had my first power outage from Sunday morning until Tuesday afternoon. Dad had to go buy a generator because we had to keep all of my medications cold in my med fridge. I also had to be able to do my breathing treatments so we needed electricity to power my compressor. We have to sterilize my nebulizers after each use so we used these Medela micro steam bags in the microwave and had one lamp hooked up for light at night. I didn't know much of a difference, but Mom and Dad said this is how people used to live (minus our bit of power from the generator). Thankfully we had our gas fireplace to keep us warm. I loved seeing all of the candles and flashlights. We even made shadows puppets on the wall.

I was up late for my first New Years Eve to watch the ball drop. I was eating my ba ba while I watched TV and then Mom planted a big smooch on my cheek at midnight. I was whisked right back to bed after the festivities.

Well it is now 2009 and I have a lot more "firsts" look forward to. I will be turning one this year. I can't wait to actually be outside this spring and summer.

I also have some appointments this next week at U of M that I am not looking forward to. I have surgery scheduled on Jan 6th to have my broviac inserted back in to the original spot. It has come out over time. I probably haven't helped it since I like to grab at it any chance I get. Plus I have grown and with my chest cavity expanding that may have pushed it out a bit too. When I am in the recovery room from that surgery they will be performing an echo cardiogram on me. I had a visit with my cardiologist on Dec 22nd and they could still hear the heart murmur that I had when I was born. I have a small Ventricular Septal Defect (VSD) which is basically a hole in my heart. The echo will let the doctors know how big the hole actually is. The pictures will determine if I need surgery or if it will heal over time. I also have my monthly checkup with Dr. Nasr on Jan 7th. I think I have been behaving so she should be happy.

Wishing you a healthy, happy new year!

Ben