Merry Christmas

I wish we could've sent a card and letter to everyone. Unfortunately, we ran out of time and cards.....we thought 160 would be enough. Merry Christmas!!

Christmas 2008
Dear Friends & Family,

We wanted to thank everyone for the incredible support you have given us throughout the past year. Thank you for always asking about Ben. Thank you for the food, hospital visits, e-mails, cards, phone calls, donations, gifts and everything else.

We cannot begin to express what a roller coaster this year was. It was filled with many highs and an unfortunate amount of lows. We’ve questioned many things along the way….our doctors, our strength, our faith. One thing that was never in doubt was the amazing network of family and friends that we have. The outpouring of love has been overwhelming.

Ben is the strongest person we have ever met. He has endured more in his first 9 months than we have dealt with in our lifetime. Throughout it all, he does it with a smile. His attitude is amazing despite the constant annoyances we put him through. He has taught us patience, compassion, empathy and several other things that were lacking. Isn’t it amazing that we’ve learned so much from someone who can’t talk? We are better people because of Ben. He is our hero.
As you can see in the photo Ben is doing great. He is steadily gaining weight and is over 16 lbs. He can stand with support and is cutting his first two teeth.

A dying man, Jim Valvano, gave an amazing speech about 15 years ago. I always loved the portion below. It was something I aspired to do but never really seemed to reach until Ben’s arrival. Ben has given us something special.

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.”

We only wish we could fully express to all of you how much your support and donations mean to us. As Ben fights everyday, it’s people like you that will help make the fight that much shorter. Every day brings us closer to a cure.

You can donate to the Cystic Fibrosis Foundation to make CF stand for Cure Found. Your donations are tax deductible. Ninety cents of every dollar goes directly to research. You can sign up to walk and/or make your donation through the link on Ben’s Blog (website address below). Any amount is greatly appreciated, nothing is too small.

We wish you and your loved ones a Merry Christmas and a Healthy New Year!
With Love, Chris and Kati

Peas with sugar on top

I have been a busy boy. I am now a whopping 16lbs 10oz! I finally hit the 5th percentile for my weight! I am 27 1/2 inches in length. That puts me in the 25th percentile for height. I love eating my sweet potatoes, peas, and carrots. I get butter and brown sugar on top. Who wouldn't like that? I ate my veggies by themselves for the first few times and I still really liked them. Dad says for all of the times I have been "starved" I would probably eat hay.

I am cutting my first two teeth. One is through and the other is cutting through my gums right now. It does not feel very good. I can also stand up with support. I can sit on my own, but I don't really have an interest in crawling at this time.

Mom got a yucky call from the doctors last week. I had a cough so they did a throat culture and I have cultured pseudomonas aeruginosa (PA) (again) and klebsiella oxytoca. It is very important we eradicate the PA because if I were to colonize it that can affect my lung function and cause damage. I have to go back on the inhaled TOBI. I am on it for 28 days and off for 28 days for at least the next year. It takes about 25 minutes, twice a day for this treatment. Mom and Dad have to do a lot of entertaining while I get my treatment.

I am vitamin D deficient. That is common for most people with CF and can be common for people with short gut. Dr. Brown started me on a vitamin D supplement.

I am still on TPN 4 days a week. I have an appointment on December 23rd with Dr. Brown. Hopefully they will be very impressed with my weight gain and they will make the decision to take me off of TPN soon. I no longer get NG feeds at night. No more tube in my nose! Mom gets up with me during the week nights to feed me a few times. Dad helps on the weekends so Mom can get a bit more sleep.

I got to visit with Santa...I am not quite sure about that silly man.

I am a very happy guy. I go to bed so well...I have never fought it. I get excited to get in my crib and snuggle up with my bear blanket. I even play and chat in the morning and let Mom and Dad sleep in a bit.

Happy Holidays,

Ben

Bouncing Boy

I am a very happy boy. I love to eat my cereal. I am now on the vanilla flavored Elecare formula. When mom mixes my makes my rice cereal with the vanilla formula and extra virgin organic coconut oil it smells and tastes like cake batter. I get excited when I watch Mom mixing it all up. Mom hopes this doesn't deter me from eating my veggies when I get to try those. I am starting to move around in my crib. Mom has to call the doctors tomorrow and ask what the next step is for the NG feeds. Since I have a tube running from the feeding bag into my crib and it attaches to the tube on my face. Mom and Dad worry I could roll over and wrap the tube around my neck. We took out the NG last night. We started doing night feeds by bottle last night. Mom got up at midnight, 3:00am, and Dad took the 6:00am feed. We have to make sure I get the night feeds because they add a lot of extra calories to help me grow. If I gain weight this way this should prevent me from having to get a G-tube. Keep your fingers crossed that this will work. I love the activity center my Great Grandma Pawloski bought for me. You can see me in it on video. Mom went to see her friend Laura in Chicago last weekend. Dad and I had a fun weekend together. Mom and Dad also had their first date night, just the two of them, since I have been home. They went to see a movie and had dinner on Friday. Grandma Carol watched me.



Bounces,

Ben

Mr. Independent

I finally got to try rice cereal for the first time. I was so big I even held my own spoon. I am up to 23 k/cal formula. My TPN has gone down to 4 days a week. Soon we will add brown sugar and butter to my cereal, but Dr. Brown said one thing at a time. We want to add things slowly in case it causes any gut issues. I need extra calories because of my CF, so we always have to find creative (yummy) ways to keep me packing on the pounds. I am doing well and weigh 14 pounds. I have been a bit crabby lately and I like Mom and Dad to stand up with me. I know when they sit down and I let them know I do not like it. I think I might be teething and that is making me finicky. I saw snow for the first time today. I woke up and watched it fall through my bedroom window. I thought it was pretty neat.

High Five,

Ben

Happy Owl-Ween

Well I was an owl for Halloween! I went to the Hedricks Halloween Party and hung out with my buddy Nick. Dad was Magnum PI and Mom was a Leprechaun. I went to two of my neighbors to trick or treat. I just showed them how cute my costume was since I can't eat candy yet. I am growing so big! I was 13 pounds 7 ounces on Wednesday this past week. I will get weighed tomorrow to see how many ounces I have gained. I can now hold my own bottle and I can clap my hands and give high fives. My vocabulary is expanding to a few syllables now too. I can sit up on my own, but only for short periods. I love to watch my cats. I am very curious about them. Mom and Dad said they are so proud of my accomplishments in these past few weeks.

Da Da Da

Ben

3 pounds in a month

I went to see Dr. Brown yesterday and I weighed 12lbs 1oz! The intestinal rehabilitation team was very impressed with my coolness. I have been doing very well and growing like a champ. I have filled out a lot and I don't look like a white Ethiopian anymore. I am still on TPN and tube feeds at night. I will be on both of those for a while since it seems to be working. I am getting excited for Halloween. I have 6 costumes to pick from. Mom bought out all of the stores and we are not sure what I am going to be yet. Mom mentioned something about taking pictures of me in all of them so when I am older we will remember my first Halloween.

Life is good :)

Ben

Muscles

I weighed 11lbs 4oz yesterday when the home nurse came to draw my blood. I am getting so big! I can now wear my 3-6 month clothes. I only have a little over a week to finish my three antibiotics. This is my first week I don't have any doctor appointments. I go see Dr. Brown next week. Each visit we have been lowering the calories I receive from the TPN. I sleep throughout the night now too. It helps that I am being feed through my NG tube all night. I now get 38 cc's per hour and tomorrow we will go up to 40 cc's per hour. I get about 100 cc's in my bottle 6 times a day. My hair and eyelashes have really started to grow. I am getting little curly wings on the side of my noggin. I finally got professional pictures done last week. Mom has to go pick them up this week. Dad came to the appointment. We had some family photos taken by Mr. Robert Bruce. He did my Mom and Dad's wedding. I did really well at my photo shoot.

Ben

Old Man

Today is Dad's birthday! He is 33! He is getting old and I am getting big. I weigh 10lbs 8oz. I am actually getting a slight double chin. Mom and Dad are happy to see fat deposits. I am growing well at home. I pulled out my NG tube again last night. I am getting to be a sassy boy sometimes. I go see Dr. Nasr and Dr. Brown this Wednesday. I will continue to have weekly follow up appointments while I am on TPN and tube feeds.

Smiles, Ben

Thanks to the Jack Robb Golf League

This is long overdue but I wanted to thank everyone from my Dad's golf league, especially Joe King, my Great Uncle Tom and Aunt Diane Hudson. They held a 50/50 raffle every week and surprised my Dad with nearly $1500 at the end of the year!! From what I've heard they're pretty bad golfers but they must be great people. I can't tell you how thankful we are to have such wonderful friends and family.

Thanks again,
Ben

Home=Gain

Well I have been home eight days now. I have a home nurse visit me twice a week to take my blood for lab work. She weighs me too. She weighed me the day I came home and I was 9lbs. Four days later she weighed me on the same scale and I was 9lbs 15oz! The day of discharge Mom had a feeling the doctors weren't going to let me go home because I had not gained any consistent weight. Well thankfully Dr. Nasr was on duty that day. She came in on rounds and told us that the intestinal failure team (positive name huh?) wanted me to stay for 5 more days. Dr. Nasr knows Mom all too well and said she told the team that we were going to go home because she didn't want Mom to have a nervous breakdown. Mom was also going to tell them I needed more calories if I was going to gain. The team of doctors had also discussed that in the morning and I went up to 22 k/cal formula. I have hit a plateau for the past few days and have not gained very much. I go up by two cc's in my NG feeds tonight so hopefully that helps a bit. Hopefully I don't have to be on TPN much longer. My labs came back and my liver enzymes have been climbing at a quick rate. I have to go to U of M tomorrow to have an ultrasound done. I was at U of M today for a physical therapy evaluation. They said I am a little behind, but that is expected since I have spent about 4 months of my 6 months of life in the hospital. Plus I am underweight and when I catch up I should be just fine. The CF and intestinal doctors both see me on Wednesday. They will probably be adjusting my calorie intake because I am a bigger boy since they saw me a week ago. A whole pound bigger! Mom and Dad want to thank everyone again for the cards and gifts they still receive in the mail, the meals, the great messages I get on the blog and the thoughtful phone calls. These kind gestures constantly remind us of the great people and support we have pushing us through this tough tough journey life has tossed us.

Kicks and kisses,

Ben

More Meds

Well my throat culture came back and I have cultured Pseudomonas aeruginosa (PA). I will have to take Cipro and Tobramycin (TOBI) to help eradicate it. The TOBI has to be inhaled through the nebulizer twice a day and the Cipro I take twice a day orally. I have to be on these for 1 month. Mom and Dad were sad to get this news today. Thankfully these two antibiotics can be administered at home. The Cipro can cause loose stools so they will wait another day before increasing my feeds. If I begin to get loose stools this should help them in deciding if it is the antibiotics or the increase in food volume that is causing loose stools. Tomorrow Mom and Dad get to practice putting the NG tube down my nose into my stomach. I am not very excited about this. Once it is in it can stay in for 30 days...that is if I don't pull it out which I like to do.

Drool and Bubbles,
Ben

Planning for Home

Well we are working on my feeding plans right now and trying to find the right mix for me to be discharged on. The doctors told me I am going home on a mix of TPN, NG feeds, and oral feeds. They expect me to be hooked up to the TPN for about 16 hours a day. In my NG I am currently getting 24 cc's per hour of formula while I sleep. While I am awake I get to eat 72 cc's every 3 hours. Thankfully my TPN and formula pumps are somewhat small so I don't have to be stuck inside all day. Mom and Dad have a lot of training ahead of them in order to facilitate giving me the TPN and NG feeds at home. We have to be very careful when mixing and administering my TPN because there is a high risk for infection with Broviacs. The doctors have said no matter how cautious we are infection is eventually inevitable. HomeMed will be delivering a lot of supplies to my house for my at home nutrition. I have to have my own fridge for my TPN supplies. I will be taking over the house with my medical supplies. I am just happy I get to eat. I would like more because I give Mom a hard time after I suck down my 72 cc's. I always wonder where the rest of my food is.

~Ben

September 8th

Everybody wish my Mom a Happy Birthday. She's getting old so make her feel better.

:)

Misbehaving

Well I decided I did not want Mom to go on her trip to San Francisco. When Miss Tera came to baby sit me Thursday morning I had an unusual stool and Mom thought there might be blood present. She took my diaper to the pediatrician and it came up positive for blood in my stool. Mom and Miss Tera drove me straight to U of M Hospital to the ER. I had an NG tube put down my nose to help relieve some of the gas in my intestines. The x-rays didn't show much. They took my blood and did a bunch of tests and nothing came back positive for anything. Mom mentioned C-diff to the doctors and they said I wasn't presenting the "typical" symptoms. It is a simple test where they collect my stool and put it in a vial and send it to the lab for testing. Well after making me NPO (no feeds) for 6 days and putting me into surgery for a Broviac (google it) the doctors still did not have any idea of what was causing my bloody stools. GI recommended that they test me for C-diff and when I finally had a poop yesterday they collected my stool and send it to be tested for C-diff. Well today the test came back positive. Mom and Dad were very upset that we could have tested for this the first day I was admitted to the hospital. I have gone 6 days with out eating and I have lost 1 whole pound! I was almost 10 pounds when I was admitted and now I am about 8 lbs 14 oz. It has been a torturous 6 days for me and it has made mom cry. I love to eat and the TPN I am on is not taking the hunger away. Due to my history of NEC they began treating me Thursday night with the 3 antibiotics I was on before. Right now there is some inconsistency with the 3 teams that are treating me. Mom will discuss things further with them tomorrow and voice her opinion some more. I think there are too many cooks in the kitchen right now and Mom may request to just be in contact with my primary team, Dr. Nasr.

Where is the milk man?

~Ben

Great Appointment!

I went to see Dr. Nasr and Dr. Lumeng at U of M yesterday for my monthly checkup. It was a very busy office. They were seeing 45 patients yesterday and 14 of whom had CF. My weight was 9.03 lbs. My dietitian was very happy with my weight gain. She told mom she knew the Elecare formula was what I really needed more of and was glad Mom had made the transition. She said with all of the trauma and massive bowel resection I had that the elemental formula was best for me. Mom and Dad know this is a God send when it comes to me gaining weight. Thankfully after the many discussions with insurance it seems my formula is being covered. It is $55 a can! I will be going through about 12 cans a month. Who said babies were cheap :) It has to be sent to the house from a medical supplier since you can't buy it off the shelf at the grocery store. They did another throat culture since I seemed to be coughing a little bit more. Hopefully it will come back with just normal oral flora. I was referred to physical therapy to help me work on my strength. Since I have some weight catching up to do this will just help to make sure I am on track with my physical development. After my long morning and afternoon trek to U of M, I went to the Detroit Zoo last night. I met my buddies, Jake, Nick, Ryan and Josh there. I slept through most of the excursion. It was a nice cool night for a stroll.

Life is good.

Ben

Chatty Cathy

I am such a talkative boy. I sometimes would rather talk than eat my bottle. I have been getting more formula feeds because I seem to put on the weight faster. I was 8 lbs 8 oz. last night! I slept for eight hours last night! The only bad thing about that was when I was weighed this morning I was 7 lbs 15 oz, after dad changed my extremely full diaper. Mom and Dad may need to wake me up in the middle of the night to feed me once. My weight is so sensitive. Mom is currently starting to wean herself from breast pumping. She is trying to do it twice a day since I have started to eat more formula. We have a deep freezer full, so we should have enough breast milk to last me at least 3 more months. Mom is sad about making this transition, but knows we have to do what works best at this point. I will still get some breast milk everyday, so hopefully the immunities will help keep me healthy as I grow bigger. I got to meet my Great Uncle Gord and Aunt Claire. They had their baby shower last Sunday. My Cousin Emma held me too. She even took one of my pacifiers for herself. I didn't mind though. I love to suck on my two middle fingers more. I was over stimulated that day with all of the new faces.


Love, Ben

Bump in the road

I scared my parents last Tuesday. I projectile vomited a few times and Mom didn't know what to do. She decided to take me to the Beaumont ER. They ran a few x-rays and it looked as if I had a partial obstruction in my intestines. There is an area of dilated loop and a visible adhesion. This has probably been there for a while. It seems as if food is slow to move through this area. It is just going to take a while for my body to really heal and smooth out the kinks. I wasn't able to eat for over 24 hours and that was just torture for Mom. She tried to comfort me all night, but I was a hungry boy. I had 7 IV's started until they finally got one in my head to work. That did not make me, Mom or Dad very happy. Mom and Dad were bummed they even decided to take me, but they didn't want to chance anything. Luckily I was discharged the next afternoon. I am back to eating like a champ and trying to gain the 5 ounces I lost in the hospital. I will be weighed tonight to see where I am. My labs came back and all of my numbers are trending in the right direction! My direct bili went from 5.4 to 4.3. My hemoglobin went up to 11.4 from 9.2. My body is finally starting to repair itself! My throat culture came back with normal oral flora so that was great news too. Hopefully the early intervention and preventative treatments for my CF will keep me very healthy and strong.

Smiles, Ben

Poopy Pantalones

I have been pooping too much (average 9 poops a day) so the doctors increased my enzymes to 2 capsules before each feed. Dr. Nasr is in China on vacation so I met with Dr. Lumeng yesterday. I only weighed 7 lbs. 11 oz. at my checkup yesterday. That means on average I have only gained about 11 grams a day since my last visit. I should be gaining about 25-30 grams a day. Hope my dietitian changed 2 of my 7 feeds to all Elecare formula. We will try this for a while in hopes I gain weight at a good rate. If I don't we may possibly have to go on all Elecare for a while. The doctors want me to gain a good amount of weight especially before the winter so I am healthy in order to fight off infections. I am getting about 183 kilocalories/kg per day and the average baby gets about 108 kilocalories/kg per day. I am definitely getting adequate amounts of calories, but with my short gut (malabsorption) and the CF (malabsorption) I am having a hard time holding on to my feeds and absorbing them. My Zantac was changed to Prilosec. Dr. Lumeng said he sees more success with the Prilosec for controlling the acid. This helps with correctly digesting the enzymes. I had blood drawn to check my bilirubin levels and my hemoglobin. I should have the results in the next few days. I also had a throat culture done to make sure I haven't colonized any bacteria. The results for that will be in next week. They will do a throat culture every three months. I am four months now! I love stroller rides. Mom took me on one a few days ago and it didn't last very long because I pooped through my clothes and on my stroller.

Love, Ben

Sleeping in my crib

I slept in my crib for the first time the past two nights. I do so well sleeping in my big boy bed. I sleep for about 5 hours at a time. I wasn't gaining for the past few days so Mom called Dr. Nasr. The dietitian changed my formulation to 1 1/2 teaspoons of Elecare added to my breast milk. I was a hungry boy so I was getting 110 cc's of breast milk and with the increase in liquid and not with an increase in my formula I was only getting 23 k/cal breast milk instead of 24 k/cal. Mom and Dad are now tracking my poops because I seem to be pooping too much again. The doctors don't want me to poop over 6 times a day and I have been. They may need to adjust the enzymes too. I was laughing up a storm this morning. I love to tell stories and I have so much to say.

Giggles, Ben

Growing Growing

I am now 7 lbs 7 oz. My appointment with Dr. Nasr went well. I will go see her in another month to make sure I am behaving. Mom and Dad bought a scale for home so they could check my weight every few days. I have been out and about. I went for a walk with my buddy Jake and Aunt Kate. I went to my Aunt Tera's engagement party. I got to visit my cousins, Josh and Maddie, at their house. I love car rides. Mom took me through the car wash yesterday.

Coos and Smiles, Ben

So Big

I weigh 7 lbs 2 oz! I finally passed the 7 lb mark! My potion is working. I am so happy to be at home. I sleep very well about 4-5 hours at a time during the night. I have caught Cali in my bed a few more times...since I haven't slept in it yet :o I sleep in Mom and Dads room in my bassinet. I have slept with Mom on the couch a few times.

Love, Ben

Home!

I am at home! I am so happy to be at home with Mom and Dad and my two pesky cats. Cali was caught sleeping in my crib! I was downstairs sleeping in my pack n play. I know she wouldn't have hopped in there if had been in there sleeping. I did really well for my first night home. I only woke up to eat a few times. I am getting so big. I weighed 6lbs 14oz when I left the hospital yesterday. I am almost 7lbs! I will get weighed at the pediatricians office on Monday. I go back to see Dr. Nasr on Thursday for a follow up appointment. I think I may go for a walk tonight. It is great to be a free man.

Smiles and Giggles, Ben

6/17/08

The doctors are still trying to work on the right potion to try and get me to gain weight. I am getting 3 oz. of breast milk about every 3 hours. They have increased my enzymes to 1 1/2 capsules before each feed. I am getting 1/2 teaspoon of elecare formula added to my breast milk to add more calories. If I start to gain weight this way I will get to go home soon. I weigh 3.070 KG (6 lbs 12 oz) and I have been the same weight for the past three days. I also get the fat soluble vitamins ADEK and Iron added to my milk. I am on zantac for acid reflux. My labs came back and everything looks good. My direct bili has lowered from 5.8 to 5.4 so the phenobarbital I am taking is helping keep it down a bit. I am doing well with my breathing treatments and my chest percussion's.

Smiles, Ben

6/12/08

I had to move to a shared room a few days ago. They needed to isolate someone so I had to move. I am doing pretty well. I am up to 80 cc's every three hours just 10 cc's shy of 3 oz. I started enzymes yesterday. I get one full caspsule before every feed. Hopes are the enzymes will help me gain weight. I had a busy day yesterday and I had my circumsicion and a sweat test. I should get my results from the sweat test today. I also got my genetic test back and they found the second mutation. We already knew I had the DF508 and the other mutation is IVS7+1G>A. This is a rare mutation. I could possibly be the only person in the world with this mutation. It is unknown if I will have a milder case of CF or more severe. We are pretty sure I am pancreatic insufficient since I was born with the meconium ileus. Just to check they are doing a fecal elastase study on my poop. Being pancreatic insufficient means my pancreas doesn't produce as many of the enzymes I need to digest my food. I need an extra boost with the enzyme capsules.

Love, Ben

Food is good!

My upper GI came back and it presented no issues! This was great news and the doctor's started my feeding plan on June 4th. I am up to 45 cc's of breast milk right now! My feeds are increased by 5 cc's every other feed with a goal of 80 cc's, almost 3 oz. They are slowly lowering my TPN as my feeds increase. I had lost a bit of weight last night and I was at 6lbs 9 oz. The doctors said they expect that while they are adjusting my feeds for the next few days. Once I am on full feeds I should be gaining more. They said if I don't they will have to make adjustments. One possibility is adding human milk fortifier which would add 4 k/cals to my breast milk. That doesn't sound like much, but for babies it is a decent amount of added calories. Because of my digestive issues they want to first see if I can just gain weight on full feeds because adding things to my diet could have negative affects on me. Overall I am a happy little man in my new digs!

Smiles, Ben

My new digs

I have my own room at the hospital. I even have a TV, the first TV I have ever had at the hospital. Mom said she can finally have a taste of what is going on in the world. I watched Ellen with her yesterday. Mom cried the first night she had to leave me in that room because the doors to my room have to remain closed to prevent infections (there are all sorts of children on 5 west with upper respiratory bugs). She asked the nurses how they were going to hear me cry and they said they could put a baby monitor in my room and put the receiver outside in the hallway. I am glad she asked because I hate to be without my pacifier for too long. Dr. Nasr comes to see me almost everyday and I sure do like her. I have an upper GI scheduled for today. I will drink some barium and they will do various x-rays to see how my intestines are doing. I am off of antibiotics as of yesterday so that is good. Once the doctors get the results from the GI study they will start to increase my feeds if everything is looking good. They are going to go very slow with my feeds this time. Dr. Nasr said I better behave :)

~Ben

5/30/08

I got to start feeds yesterday. I get 5 cc's every 3 hours of full strength breast milk. I will finish my antibiotics on Monday. I am still on the full amount of TPN and the breast milk is added calories. I am supposed to move to the Pediatric ICU today. Mom and Dad were very upset the other night because the baby next to me tested positive for MRSA and that made them very uneasy. Mom talked to the doctors and told them about her concerns and the baby was eventually moved last night. I need to try and stay as healthy as possible while I am trying to grow.

~Ben

5/27/08

I am still on TPN for my nutrition. I have 6 days left of antibiotics and then hopefully they will start to slowly feed me. Mom gives me a little bit of breast milk each time she pumps and I like that. I have a suction tube in my nose that goes into my stomach still so I don't digest the 1cc she gives me. I do like the taste though. Tomorrow they will draw blood to send to the Mayo Clinic for my full genetic screen. This test should find the other CF gene. Mom met Cameron today. She said he is a cute little boy and he has a lot of energy. When a cure is found I hope to meet Cameron too.

~Ben

5/24/08

I have settled in at the U of M NICU. It is physically quite the change from Beaumont. Mom and Dad say we went from the Four Seasons to Motel 6. I have babies about 3 feet from each side of me. There are about 14 babies crammed in this small room. I have a big boy bed. Mom said she may climb in it and take a nap with me...lol. The doctors and nurses have been great though. I finally got to meet Dr. Nasr. I am still not eating and I am on full TPN. They will try and start feeds in the next 10-14 days. I am still on my antibiotics to treat the Necrotizing Enterocolitis (NEC). I also got another PICC Line in my arm and I have a suction tube back in my nose to help keep the air out of my stomach. Dr. Nasr ordered me to start my Albuterol inhalants today. I will get them twice a day. She said my lungs sound good, but this is all preventative treatment. Dr. Nasr said my biggest problem right now is gaining weight and I have to put meat on my bones. The harder it is for me to gain the more susceptible it makes my immune system.

Love, Ben

5/20/08

Sunday night I projectile vomited and Mom new something wasn't right. She called the nurse over and told her she was scared. I seemed very lethargic too. The doctors stopped my feeds and put me back on TPN. I had x-rays done right away and they thought there was free air present in my abdomen again. They decided there was air in my bowel wall again and not inside my abdomen. Both situations are not good, but if it were in my abdomen they would have had to performed emergency surgery again. They believe I have an area in my intestine where bacteria grows and produces gas that somehow moves into my intestinal wall where it should not be. Like a pond that is stagnant and grows bacteria. I am on three antibiotics and I have an IV in my head again. They will just monitor me and try to clear the infection. Mom and Dad are sick to their stomachs. It is hard for them to see me like this again. I can not eat and that upsets me and my parents. They feel helpless. I might be moved to U of M sometime this week.

Ben

5/18/08

I have been put on a predigested formula, Nutramigen, to hopefully try and help me gain weight. I get to breast feed a few times a day in between feedings to give me some extra calories. Mom was sad we had to try this, but it was better than putting me on TPN. TPN would be a quick fix and it only has negative effects on my liver. My bilirubin is 4.4, the highest it has been. The doctors want to get my stool, feedings, and bicarb normal before they start treating my bili. I am still having some loose liquid stools and now that I am getting this formula I have vomited three times. I don't burp as well now that I have started this formula. The doctors are doing an ultrasound tomorrow on my stomach to rule out vomiting caused from Pyloric Stenosis. This is the enlargement of the valve connecting the stomach and small intestine. Mom and Dad hope this is not the case because I would need another surgery. I will be 11 weeks old tomorrow.

~Ben

Change in Plans

The doctors do not want to send me home because my stools are loose and basically absorbing into my diaper and I am not gaining weight. My bicarb levels came back at 14 which is low. The doctors are concerned with dehydration. We have stopped the enzymes and I am just eating breast milk. The doctors have lowered my food intake a bit because there could be a concern that I am "dumping". I will be closely monitored the next few days and if my stools do not change and I do not gain we will have to look at other ways of adding calories. My mom told the doctors she does not want me back on TPN and that is the last option.

~Ben

5/14/08

I am now eating as much as I want about every three hours. I had two bottles of breast milk yesterday that each had 120 cc's (4 oz.)! I was hungry in the morning. I also get to breast feed so mom feeds me during the day. I am now getting my enzymes before each meal. Back to eating applesauce. The doctors have talked about me going home tomorrow! I can't wait to finally go for a stroller ride.

Love, Ben

5/12/08

I am currently on 38 cc's of breast milk every two hours. I am off of TPN since last night. Now I am just trying to talk the doctors into giving me more food. The little 3lb 9 oz. girl next to me gets more per feed than me! The doctors are doing rounds as we speak so hopefully they will be over soon. I am now in the big shared pod again. They had to move me yesterday because a 31 week old baby needed my room. This is hopefully a sign I should be going home again soon.

Later, Ben

5/10/08

I am already eating 30 cc's (one ounce) of full strength breast milk every two hours. That means I get a total of 12 ounces per day. I am still on TPN and I am currently getting 18 cc's per hour through my IV. The doctors have been giving me more than I ever had because I had only been losing weight. I gained about an ounce a day when I was home. The day of surgery I was 6 pounds 8 oz. After surgery and days at the hospital I was down to 5 pounds 15 oz. I am now 6 pounds 5 oz. I am doing very well with my feeds. I will eventually go back on my enzymes once I get to full feeds. I hope to be out enjoying the sunshine soon.

Mom, Dad, and I want to thank everyone for their support at the CF walk yesterday. We are overwhelmed by the love and support all of you have shown us. Mom was happy to see so many friends and family there yesterday. It makes Mom tear up. If we can continue this each an every year we will only get closer and closer to finding a cure.

Smiles, Ben

5/7/08

I get to eat today! I will get half strength breast milk (breast milk diluted with sterilized water). The doctors still haven't decided on an amount, but they will be on rounds soon and they will have made a decision. Yesterday they said 1/2 ounce to a full ounce for the first feed. I get to start off with a bottle and bypass the yucky gavage tube. I am no longer on antibiotics. My blood cultures for sepsis have come back negative so that was great news. If my feedings go well hopefully I will be going home in the next two or three weeks.

Love, Ben

5/5/08

I no longer have the tube going into my mouth down into my stomach. I am only hooked to the monitor and I have an IV for my TPN. I am losing weight so hopefully they will start feeding me soon. The doctors said 7-10 days since surgery. Tomorrow will be 7 days. I am a very angry boy since I can not eat. My pacifier only satisfies me for so long. It is all about patience and waiting for now.

Ben

5/2/08

After a few bouts of projectile vomitting and the pediatrician checking my stool for blood I was rushed to the ER on Tuesday. I had x-rays done and air was found in my bowel walls. This required me to have emergency surgery. The air being present signalled to the doctors that I probably had a perforation. They could not find one. It could have been so small or already healed over. He smoothed out some intestinal kinks and cut open a part to sew it in order to make that portion of my bowel wider. I made it out of surgery. I was taken off the ventilator yesterday. I am still on Fentanyl for pain. Infection was present in my intestines, so I am on three antibiotics for about two weeks. There is major concern for sepsis in the blood, but so far my cultures have come back negative. Mom finally got to hold me last night. It helped to calm me a bit. I have not been sleeping much. I am very mad I can not eat. I am back on TPN for nutrition, but I want some real food. I have more tubes connected to me now than I ever did. I have the suction tube back in my mouth to keep all fluids from entering my intestines. This allows them to rest and heal. Mom and Dad are very sad to see me go through this again. The doctors said these types of things can just happen because the amount of intestine I have remaining is floppy.

Ben

$&#@!!!!!

Back at the hospital. Ben just underwent surgery again on his small intestine. We'll keep everyone posted.

Chris and Kati

Home Run!

It is official! I am going home today! I am so excited to see the world. Mom and Dad are so ecstatic to put me in my car seat for that first ride home. They are ready to give up the studio apartment at Beaumont. We want to thank all of the great nurses and doctors that have watched over me the past 6 1/2 weeks. They have really done an outstanding job caring for me. Mom said she is nervous because now it will just be her and Dad taking care of me. Her full time "nannies" won't be around at night. Mom said it is a bittersweet moment because this has been our life for the past month and a half, but she is ok with saying goodbye to it. Dad, Mom, and I want to thank all of our family, friends, and new people that have walked into our lives for their awesome support. We are so grateful to have you all in our lives.

I will be going to U of M May 1st for my first meeting with Dr. Nasr.

It's a beautiful day, Ben

Home on the Horizion

The gavage tube and PICC Line have been removed! I am only hooked up to the heart monitor that all babies in the NICU are connected to for safety reasons. All of my feedings have been changed to bottle and breast. It is looking like I may be home by the weekend if my feeds continue to go well. Mom and Dad were so ecstatic to hear this. My bilirubin count is high, so I had to have an ultrasound done yesterday. The doctors said my liver size looks normal, but they were not able to see everything they needed to see. They may do another test, but haven't decided on the next step. I am on Phenobarbital to help lower my bili count. I am also on an iron supplement because my iron is low.

I can't wait to breathe fresh air for the first time and go on my first car ride.

Smiles, Ben

4/21/08

My feeds have gone up to 57 cc's. The feedings have changed from continuous to bolus feeds. A syringe is connected to the tube in my nose and it is held above my head. With the force of gravity it goes into my stomach. Hopefully in the next few days they will just be bottle feeding me the breast milk. I am ready to have the tube removed from my nose. The nurses said the bolus and bottle feeds both take about the same time for me to eat. This doesn't make much sense to Mom (or the nurses), so Mom asked the doctors about it. They said they want to make sure I am not "dumping" my milk before going to bottle. They said if I tolerate this well we should be going to bottle very soon. I got to breast feed again and did very well. We monitor my intake by weighing me on a precise scale before and after I breast feed. I have a really bad diaper rash from the enzymes. My bottom skin was actually bleeding. The nurses have made a mix of desitin and this pink calamine like powder that they coat on my skin. It seems to be helping a bit.

Mom, Dad, and I had a nice surprise visit from Cameron's mom, Ms. Debi, today. Cameron is my new friend that has CF too. They were very pleased to have met Ms. Debi. She has provided a lot of good advice and support.

Love, Ben

4/18/08

Today my feedings were increased to 55 cc's for one hour and then two hours off. I am getting fed 8 times a day for a total of 440 cc's or 14.6 ounces. I even got to breastfeed at 5:30pm today in combination with breast milk from a bottle. I did not get fed through my gavage tube at this feeding at all. I should be able to continue doing this for one feeding a day and eventually more if I am tolerating it well. Mom and I also did more Kangaroo Care today. It helps soothe my upset tummy. Mom asked the doctors about walking me today too. They said she could bring in my stroller and walk me down the hall. After my 5:30pm feeding Mom and Dad both held me without being connected to my monitor and they walked me around my pod. I had a great day!

Smiles, Ben

4/17/08

I started my Ultrase enzymes on April 15th. I have been taking them like a champ. I get the little enzyme beads in a tiny bit of applesauce. Mom puts them on a spoon or on her gloved finger. I then get to wash them down with 10 cc's of breast milk. I get these 30 minutes before each feeding. Mom calls it my dessert before dinner. I am now getting 48 cc's of breast milk over 1 hour then 1 1/2 hours of no feedings. The 10cc's I get with my applesauce comes out of that amount. My overall volume for the day decreased from 456cc's to 432cc's. This is is the only way to get more volume in a smaller amount of time without over loading my belly. The goal is to get me on larger volumes with longer breaks in between my meals, just like most people eat. I started getting my fat soluble vitamins (A,D,E,K) yesterday. I get them once a day. These are put in my gavage tube while eating. The color is a bright orange and it changes the color of my pee to orange.

Mom and Dad gave me a bath last night and I pee'd on them twice. Once while getting weighed and then again after I was all dressed and clean. I am just preparing them for when I go home.

Love, Ben

4/14/08

The doctors are condensing my feedings. I am getting 38cc's of breast milk (a little over an ounce) every other hour. I get a total of 15.2 ounces a day. I have lost weight the past three days. I now weigh 5 pounds 14 ounces. The doctors are deciding on the next course of action. My enzymes were supposed to be started today. They are in the pharmacy, but I have not received them yet. They will have to give them to me in tiny bit of applesauce. A one month old eating a bit of solid food!

I had a nice warm bath today and loved it! When I had my bath I was on my food break. I wasn't hooked up to the food pump and I had the monitor stickers off. Mom actually got to hold me with no tubes! We walked around after my warm bath and I was wrapped in a heated towel. It was very nice. She told me about being outside since I have never been. The sun was shining nice and bright today. I can't wait to feel the nice breezes and go for walks in my stroller.

Mom, Dad, and I are thrilled to see the donations climbing in support of a cure!

Love, Ben

4/11/08

I am officially off of TPN! If I continue to tolerate my feeds I will not have to go back on it. I am up to 19 cc's of breast milk per hour. Tomorrow they will start to condense my feedings. I may be given 60 cc's over 2 1/2 hours. Then I wouldn't get fed for half an hour. I will start getting enzymes in my breast milk on Monday. These enzymes will help me break down the fats, proteins, and carbohydrates in my food. Most people with CF need these enzymes to help them digest their food. Mucus inhibits the pancreas natural production of the enzymes.

Love, Ben

4/10/08

I just woke up a half hour ago. I slept through most of the night. Mom just called to check on me and I am being rocked by the nurse. The nurse calls me her cuddle bug. I was weighed last night and I am now 6 pounds! My breast milk went up to 15.6 cc's per hour. I am still on continuous drip through the tube in my nose. My TPN is down to 3.3 cc's per hour. I am not sure I like it in my new pod. I don't have my own room anymore and it sure is loud in here. The little preemie girl next to me makes her monitor beep all the time. Yesterday my mom came back from lunch with my Great Grandpa and Grandma Robke and I was crying. I had pulled the tube out of my nose. It was hard for Mom and my great grandparents to watch the nurse put it back in. His first try did not work. He had the tube in, but it had folded inside. I think my nasal passage and throat got pretty scratched up. I was crying like my mom had never heard before. Mom was very upset and told the nurse to add some ointment onto the tube like she has seen them do before. He did and it slide in much easier. I also got some sugar water to help calm me down.

I am hoping for an increase in my feeds again today. I'll keep you posted.

Love, Ben

4/8/08

I am four weeks and one day old today. My feedings went up to 14.6 cc's per hour. I now weigh 5lbs 15oz. Almost to the 6 pound mark! I am going to be moved from my very own room to a big hostel type room with other babies tonight. This means I am doing better, so they feel I am ok to moving to the big pod. Hopefully one step closer to making my way out of here. The doctors said I should be completely off of TPN in the next 3-4 days if I can tolerate my increases in breast milk throughout the week.

Mom and Dad gave me a bath last night and I loved it. No sponge bath this time. I actually got to sit in the warm water and relax. I just had to leave my PICC line arm out of the water, but the nurse held it for me.

Love, Ben

4/6/08

I am up to 12 cc's of breast milk per hour today! I am now weigh a whopping 5lbs 13 oz! My TPN is down to 6.6 cc's per hour. Last night I was allowed to do a non-nutritive feed with my mom (she pumps and then I can try and feed). I latched on like a pro. I root all the time, so the nurses said I wouldn't have a problem. The nurses love me. My dad walked in the room yesterday and they were holding me and taking pictures of me with the Polaroid camera. I am a ladies man.

~Ben

4/5/08

Yesterday my mom finally got to give me a bath! My mom massaged oil into my scalp with my baby brush to help with my cradle cap. I loved my massage. Once I was done with my bath my mom massaged lotion into my feet. I was very relaxed after that. She told me she pays a lot to have that kind of treatment for herself. After my bath, I took a snooze from 1pm-3pm, with my mom. I am up to 11 cc's of breast milk. It is still on continuous drip into my stomach from the tube in my nose. In the next few weeks they should try and start volume feeding. I am up to 5lbs 12oz. My second genetic test came back and they have still not found my second mutation. The test looked for 97 mutations. There are over 1,500 mutations. When I get to U of M they will do additional genetic tests to find my other mutation.

Love, Ben

4/3/08

My feeds have increased to 9 cc's per hour. I am getting more breast milk than TPN. I have not spit up in over a day and I am continuing to poop. I toot pretty loud too. Things are progressing very well.

My Great Strides Team is doing an amazing job. Everyone's generosity towards finding a cure is overwhelming. Keep up the good work.

Goodnight, Ben

4/2/08

Yesterday the doctors increased my feeds to 6 cc's per hour. I now weigh 5lbs 8 ounces. One ounce above my birth weight! My mom was able to change three of my poopy diapers yesterday! I usually spit up a bit when I am trying to poop. The doctors said that can be attributed to the meconium ileus I was born with. My body is just trying to figure out how to work.

Mom and Dad got in touch with Dr. Nasr from U of M and they want to be involved with my treatment now. Mom and Dad have requested that my current doctors coordinate my current care with the CF center at U of M. They would begin certain treatments for my CF now.

Thank you to all who have contributed to the Cystic Fibrosis Foundation and who have joined my Great Strides Team! My parents are touched by every one's support. Your generosity brings us closer to a cure.

Love, Ben

3/31/08

I now weigh 5lbs 6 oz! I am almost back to my birth weight! I vomited early this morning while pooping at the same time. Then I vomited one more time after that, so the doctors stopped my feeds. They ordered an x-ray and everything came back okay. They began continuous feeds again at 10:00 am rounds this morning. I have kept the breast milk down for the day. I am getting 4cc's every hour. They have lowered my TPN because I am getting more breast milk. I pulled the gavage tube out of my nose this afternoon (tube that pushes the breast milk from my nose into my stomach). My mom had to leave the room while they put it back in. She hates to hear me scream while they insert it. I took a nap with my mom this afternoon. I love to snuggle.

My mom, dad, and I want to thank everyone again for your thoughts, prayers, and support. I am growing more each day and getting stronger.

Love, Ben

3/29/08

Happy Saturday. So far I have been able to keep my feedings down. This morning the Doctors even increased them to 2cc per hour. Almost 2 oz per day!!


My parents created a Great Strides CF team for me. If you would like to join Ben's Buddies please follow the directions in the column to the right. My Mom and Dad are doing the Downtown Detroit Riverwalk site and would love for you to join them. Hopefully I will be able to join them too. If you plan on doing the walk select 'JOIN MY TEAM'. As the date approaches we will have a spot for everyone to meet. Also, my Dad is not smart. He screwed up and set my personal goal to $0 and can't figure out how to change it.

Finally, I had a big stinky brown poop at around noon ;)

3/28/08

Yesterday I pooped out the green mucus the nurses had been aspirating from my stomach. It looks as if my intestines might be moving in the right direction. The nurses talked about throwing a pizza party in my honor. Mom and Dad were so excited when they changed my diaper. The doctors may start feedings again today. My Uncle Adam came to visit me all the way from Hawaii yesterday. He showed up in flip flops and shorts. Really silly since we got snow.

Mom and Dad will be here in a bit to see me. I will update everyone later on my day.

Love, Ben

3/27/08

Yesterday they stopped my feedings because the nurses were still pulling a good amount of yellow/green bile from my stomach. The doctors ordered another x-ray. I had a barium enema and I didn't even make a sound. I was so good for the Radiologist. I did pee on the table, but everyone thought it was funny. The barium moved and there seems to be no blockage. The doctors seem to think the bile is backing up into my stomach because my intestines are not fully healed yet. The small intestines move the food down by natural muscle contractions called peristalsis. The doctors think the lack of peristalsis is what is causing the back up. They did resume feedings last night through the tube in my nose. I am getting one cc every hour. The doctor's told Mom and Dad it is realistic that I will be in the hospital for another 6 weeks. This was difficult news, but they are trying to be positive and hope it happens much sooner.

Mom and Dad are in contact with Dr. Nasr from U of M. Cameron's mom Debi has e-mailed my Dad and put him in touch with Dr. Nasr. She is a well renowned doctor who treats CF. Mom and Dad want to make sure I start getting treated for my CF as soon as possible. My mom is on her way up to see me so she will get this mornings update.

Love, Ben

3/25/08

I got to eat today!!! I am being fed every six hours. A total of 5 cc's, half breast milk diluted with half sterilized water. Not much, but I sure do love the taste. My binky has been my only source of satisfaction, so I was very excited today. My mom fed me at noon and at 6:00pm today. I have been able to keep the breast milk down. If continue to digest it I will get pure breast milk tomorrow. I had the sweat chloride test done today and the results were a 62. Anything above a 60 means it tested positive for the Cystic Fibrosis. I also had a new IV put in today. This allowed the nurses to draw my blood for the second genetic screening that tests for 97 CF mutations. It should take about a week for the test results. This test should locate the second mutation. My hemoglobin was low this morning, so I also had to have a blood transfusion today.

My mom and I watched a movie this afternoon. I actually slept, but occasionally opened one eye to make sure she was still there. I love to have people around.

:) Ben

3/24/08

Not much new to report. Before my parents can get their screening the Geneticist wants me to undergo another test that will screen for up to 97 CF gene mutations. The original blood test only looked for 30. We're hoping this will detect the other CF causing gene along with the F508.

The Doctors stopped extracting the fluid from my stomach to see if can digest or absorb it on my own. If I can make it 24 hrs without vomiting they will resume attempts at feeding, if you can call it that.....1/10 of an ounce of a water & breast milk mixture every 3 hours.

Also, my Mom's 2 weeks are up so she'll be back on the roads. Watch out!!! She drives a black Saturn Vue and doesn't signal.

Love, Ben

3/22/08

From a medical standpoint, nothing exciting to report today. My Mom and Dad are meeting with a Geneticist on Monday to try and locate the 2 mutated genes that are responsible for my CF. This could help determine the severity and treatment of my disease. Down the road, it may also help my parents give me a brother or sister through in vitro fertilization. The state of Michigan blood test revealed 1 mutated Delta F508 gene. This is the most common mutation found in CF patients. The 2nd was not detected because the state only tests for the 20 - 30 most common of 1500+ possible mutations. This means I am heterozygous CF because I have 2 different mutated genes (each parent passed down a different mutated gene). Had both of my parents passed the same mutated gene I would be considered homozygous.

Thanks to CBSsportsline I was able to watch my first Spartan basketball game with my Dad......except my Dad got mad and started yelling at the computer and turned it off after Idong Ibok couldn't make a layup.

3/21/08

Unfortunately we got some more bad news. My Doctors received my blood test results from the state and it was positive for Cystic Fibrosis. Typically less than half of positive blood tests actually end up being CF. However, with my other symptoms the Doctors are almost certain that I am positive. They will do a sweat test on me when I can get to a weight of 5 lbs - probably next week. My mom and dad are trying to stay positive but also realistic that this will probably confirm what the Doctors already assume. If you would like more information on the disease please go to http://www.cff.org/.



On a good note, my intestines are healing. The barium from yesterdays test has made its way out. Hopefully I'll be eating breast milk by the end of the weekend.

Love,
Ben

3/20/08

Today was a long, busy day. I had 35cc's of Barium injected through my nose this morning, so they could x-ray my abdomen and check on the progress. I have had a total of four x-rays today. My mom and dad should get an update tomorrow morning on the progress. My mom and Kate Witt hung out with me all day. I was pretty calm most of the day and just slept. I did vomit the green bile three times today. Mom gets sad when I do. My hemoglobin was low today so they are also keeping an eye on that. On a good note, I almost got the score of the Michigan State game right.