May 16th CF clinic update

After a busy and eventful weekend, we headed to good ol' Children's Hospital for a Mason update! It is starting to feel like a normal routine for us. Really?! Going to Children's Hospital is "normal"? Ugg.

Mason's CF appointments can be a little nerve wracking, so Derek chooses to nibble on his iPhone.

I will start off by reporting that this is the best appointment yet again! From the moment they came in they said "oh look at that belly!" You see the CF clinic likes to see a little extra meat on their patients...because it is not easy to keep the weight on a CF kid!

"yeah for my chubbiness!!!"

Always practice good hygiene! Wash your kid, err, I mean hands upon entering the room!

So, onto the update. Mason weighs in at 19 pounds 6 ounces (35%), he is 27.5 inches tall (35%), and his head circumference is the in the 90%! I told them I knew he had a big head on the day he was born! Gonna be a smart boy! He has been gaining 1/2 ounce a day and that is right where he should be! But the drum roll please....his height for length is 70 %!!!!!!! Remember this is the number they want to see above 50% because this number correlates with lung function later in life!! Yahoo!!! Way to go Mason!!! Can't tell I am a little excited about that number can you!

Mason does flying cartwheels in joy over his numbers!

Floating like the butterflies that are supposed to keep me entertained while on the exam table but never do darn thing for me.

We were a little worried about what affect his recent cold had on him. They said something like this..."It may have resulted in lung damage but we have no way of knowing right now and it wouldn't change anything currently." hmm. Not gonna lie, didn't like hearing those words "lung damage" but it is all too a reality for Mason and us. They of course did a routine throat swab which we are expecting the results back hopefully on Monday. This is always the CF parent's left over anxiety from a CF visit..."will he be growing anything else besides 'normal flora'?" Fingers crossed that he is not!

In the food department, because this is usually half of the appointment, we talk about a lot. The dietitian would like to us to continue to be exploring more and more table food with him and as a goal...to be off of baby food completely by the next appointment on July 18th. Kinda scary endeavor, but we are going to try and work towards it! We talked further about feeding tubes as well. I had brought the question up "when does the feeding tube get placed onto the table of reality?" Feeding tubes are a very difficult conversation and decision but they are all to a reality for a lot of CF kids and Mason. This is why we work so hard to get those calories in him and are frustrated when he just won't eat or throws it all back up. You can't explain that to a 9 month old! So we keep on with the 200+ calorie bottles, adding oil and salt to all his food, and inspecting his poop for malabsorption because once the feeding tube goes in, it usually does not came back out.

"good work on a great appointment son!"

So what did we do to encourage Mason to keep up the good work? We went and bought a new PS3 or course! Ha! Quick funny little story about this one! Derek's PS3 took a poop so he has been borrowing a friends. He came across a little deal on a site called Slickdeals which stated some Target's were clearencing out some of the older models. And where was the nearest store with one on the shelf...Kohler, WI folks! So, at 6pm on Monday night we packed up Mason and drove 1 1/2 hours north!

See below for two more posts! That's right folks...3 posts in one day!

Great Strides 2011 Success!

THANK YOU! THANK YOU! THANK YOU!

We participated in our first Great Strides Walk to Cure Cystic Fibrosis on May 15th at the Milwaukee Zoo. The Cystic Fibrosis Foundation receives zilch in funding from the government so this is the CFF's largest national event to raise money to find a cure. We want to shout out a huge THANK YOU to everyone who walked and/or donated. It was an emotional day for us even if we didn't show it on our faces. We felt saddened that we must take part in something to raise awareness and funds to find a cure for out little man. However, we felt surrounded by love and support from the awesome people who braved the gail force winds and winter like temps. Our hope is that we don't have to walk in these for too many years and that Mason will be afforded a long and prosperous life.

Can you believe we were dressed like this on May 15th?!

It was a big crowd...next year we are gonna have Team Mason shirts too!

Thank you to my mom and Becky for making the 4 hour drive to walk with us!

Thanks to Jackie for pulling in the 3rd highest amount of donations!

Mason really is under there...promise!

Peek-a-boo! I see you!

Getting ready for the 2nd loop around the Zoo.

The cold weather couldn't keep Grandma and Grandpa away!

Part of our team kickin' some CF booty!

Wearing daddy-o's hat!

One last stop before heading home to warm up!

Thank you again to everyone who came and supported our family, The Cystic Fibrosis Foundation, and the 70,000 others out there who are fighting this battle. We are humbled at the amount of support we have gotten from everyone since his diagnosis. With this being our first year, we were not sure how much we were going to raise and again we were humbled at the amount. I am proud to report that as of today (May 21st) Team Mason has raised $3875. There are still some donations that have not made it into the system yet. We also have not heard the final number for the Milwaukee event yet, but I did hear that we surpassed the Milwaukee event goal of $275,000! So, again Thank You from the bottom of our hearts!

Check below for another new post!

Help around the house

Now that Mason is almost 9 months old we have decided that he is old enough to start helping around the house. :) Here are a few pictures of things he has been helping with!

Driving us to our appointments and work.

Making supper on the Grill.

getting ready to help with lawn work

fixing the squeaky noise under the couch

helping with laundry

oops... :)

He really gets into his chores

working on the electrical

Perhaps we are working him too hard :)

If your wondering how we compensate him...well right now he works for kisses. Won't be long before those kisses are considered "uncool" so we get them in while we can! :)

Hearty laughing...

CF Awareness Month: Medication and it's cost

So, how many pills a month do YOU take?

Mason now takes 403...and his life depends on every last one.

May is many things and now we are all too aware that May is also Cystic Fibrosis Awareness Month. So, I am going to try and post something everyday about CF and how it relates to Mason. Yes, I am 8 days late but, better late than never!

Mason needs medication and treatments for the rest of his life to help him stay as healthy as possible and to help him breathe easier and digest food. Something that hurts to realize is that Mason was the healthiest he ever would be on the day he was born. CF is a progressive disease from day 1. We currently spend about 1 hour and 15 min a day with treatments and meds. It will only increase from here.

Mason's list of meds and treatments are pretty short compared to the rest of the CF world. Hopefully we can keep this list as short as possible for as long as possible. The sad note is that it will get longer as his lungs become more and more unhealthy.

One day of fun for Mason

• manual CPT (chest physiotherapy) for 20min x2/day
• 5mg Prilosec 30 min before 1st feeding
• 3 Creon 6000 capsules before each feeding x4/day
• .75ml of Vitamax vitamins once a day
• Albuterol Inhaler 2puffs 2-3x/day
• 1/4 tsp of salt split up through the day
• additional formula to each bottle for extra calories (~200 calorie bottle)
• All food mixed with oil, salt, and fortified formula for extra calories and fat

He just has gotten over being sick for the 1st time with a cold. It took him 2 1/2 weeks to fight it off. So that meant more meds and treatments. We added an antibiotic twice a day (in hopes that the cold would not turn into something else in his lungs which could hospitalize him), nasal spray 3 times a day, one more CPT session during the middle of the day, and we started Albuterol inhaler 2-3 times a day. The albuterol was a blow because it was something the doc had wanted to hold off on for as long as possible. It is now something Mason will have for the rest of his life...The Rest Of His Life.

Here is Mason's first time "taking" albuterol...it hasn't gotten any easier. Thank goodness that it is just the inhaler for now because if did it with the nebulizer it would take 15 min.

The cold was an eye opener into how much this disease sucks your time and energy. It felt like that is all we did all day with trying to make sure he ate every 4 hours. I had actually read that CF is one of the most time consuming diseases out there in respects to time spent EACH DAY on treatments and medications. There are are some people who spend 4 hours a day attached to some sort of machine or another, taking in meds just so they can live. Can you imagine being stuck to a machine for 4 hours a day just to breathe? Sadly, Mason will.

Some people have asked the cost of this disease...well there is a reason that I always mention that more than half of CFer's are on Medicaid...it's too expensive even with a good health care insurance if you have one.

Here is a list of just the prescription meds at cost that Mason is on now:

• Prilosec = $28/month
• Creon 6000 capsules = $453/month
• Vitamax vitamins = $35/for 3 months supply
• Albuterol Inhaler 2puffs 2-3x/day = $45/month
• Fortified Formula 1.45lb container (the big one)= $21.09 every 4 days

This isn't including the $18,000 (yes you read that right) vest/machine we will need to get for him around age one and the $4,600 a month (again you read that right) medication he will most likely need in the near future. I won't even go into what his healthcare bills are at this point, but will just say he has hit his $3000 deductible for the year at the end of March. Just another of many reasons we want to see CF stand for Cure Found!

Feel free to help us with that goal by clicking on the "Great Strides" button on the top of the page and place a pledge as we walk this coming May 15th to help find a cure! It is tax deductible and 90 cents of every dollar go towards research. Cystic Fibrosis gets NO money from the government, so all the great work being done is done solely on donations. Mason thanks you!

Oh Balls...

Here comes crazy toward the car....crazy good deal shopper that is!

What? This isn't a giant ball washer?

hmmm, not too sure about this awesome ball pit mom and dad found for me...

Oh my, I am not happy about this...

Trying to hide my excitement over all these balls!

Boy oh Boy this is the best $3 mom and dad have spent!

Good Night from the cutest 3 toothed boy of the house!

May is Cystic Fibrosis Awareness Month!

I am going to try my hardest to do this. Every day I am going to post another topic regarding CF and Mason. I am two day behind already. So, here is goes...

Day 1: The Diagnosis

This story starts even before Mason was conceived. Derek and I had gone through infertility testing/procedures. They had realized that we had not been tested for Cystic Fibrsois, one of many disease they test for. Looking back on the situation, I just want to slap the nurse. It was very glazed over, and it was made to sound that if we were not of Jewish descent we really had nothing to worry about (they have the highest CF rates) and took my blood. There was never anything discussed of how they test and what would happen if positive. Then we got the call that I was a carrier (I only have one mutation and you need two to have CF) and Derek had to be tested as well. We were told that if it came back positive we would need to talk to a genetic counselor, "but we really shouldn't worry because it is so rare." Could slap the nurse again. I of course got real nervous waiting for those results because r. Google had such horrific stories of what the Cystic Fibrosis is. Then we got the call that Derek was not a carrier. Phew! no need to worry about that anymore...or so we thought.

Mason was born on 8.26.10 at 3:27pm. He weighed in at 7 pounds 4ounces and 20 1/2 inches long. We had waited so long for a little one that we felt such a rush of emotion. He was our healthy little baby. All we asked for was a healthy little baby. Healthy. They came in the next day and pricked his heel to take some blood for "some required state test for some rare disease's we shouldn't worry about." or so we thought.

Looking back there are some things that really stick out that should have been signs but remember we were told there was no reason to worry. Mason had to sleep in the nursery both nights to be watched because he kept spitting up/vomiting "junk." at that time it was thought that maybe he just didn't squeeze all the amniotic fluid out of his lungs on the way out. He was even suctioned a few times in the nursery. Sign number two was his lack of weight gain. He of course had lost a little as all babies do by the time they leave the hospital, but he was not gaining it back like he should. He had weekly weight checks for the next three weeks.

Then Sept 15, I took Mason to another check up, Dr. Shallue got all serious and said that Mason needs to have a "Sweat Test" because that newborn screening came back indicative of Cystic Fibrosis. I had been so flippant with it. "oh, do we need to? We know I am a carrier but Derek is not." Well, thank goodness we had to because it is protical. So, I set the sweat test for Sept 20th and went on our merry way.

On September 20th, on the way in to Children's I called our family doctor to get an appointment because I thought he may have pink eye. So after he endured the Sweat Test we would have the results (which only could have been negative) by the time we got the family doc at 3:30pm. What happened next will forever be etched into my memory.

Mason did indeed have pink eye. Dr. Shallue seemed to try to keep her composure, I really was slightly oblivious to this. But then I asked "did you get the results back from Children's?" She looked down, then looked up at me, put her hand on my arm as I hold Mason and said "It's positive ,Sara." I lost it. "What?" "How?" "Derek is not a carrier?" All I could think of was what I had read online and it was ALL bad...he was only going to live into his 20's. Dr. Shalllue was so very comforting and going over the results (which could not be botched). As I was bawling and shaking she was trying to dry her eyes as well. This is why I love her. He bedside manner is incredible. She sat with me for another 30 mins. She explained that she had spoke directly to the supervisor at Children's Cystic Fibrosis clinic and we had an appointment tomorrow at 2pm.

I felt like my world was crashing down and no one else had any idea what was happening. I pulled myself together and hurried out to the car quick to avoid locking eyes with anyone. put Mason in to the car and sat and called Derek. How do i deliver the worst news so far to Derek. I called "The test came back and it's positive for CF" is all I could sputter out at first. All I could do from then on was cry. He says that he was confused and in denial because all along we were told that it was impossible for him to have it. So again, Derek was the strong one and helped me pull myself together. Then I called my mom on the way home and asked her to pray for Mason...If we pray hard enough they would realize that the results were someone else right

The next day, I ran out of tricks to stop myself from crying. It was September 21st of all days. The day my dad and sister died on. My mom had come down to the appointment, and the ride was the quietest 35 min in a car ever. By the time we got the CF clinic I was trying to keep it together but was a visible mess. They ushered us back into an exam room. Mason got weighed and measured and we waited ...for whatever they they had to come in and tell us. That's when we met Mary Ellen. Can I say I love her. I believe her title is CF Clinical Nurse Specialist, but she is like another family member now. She was so kind in her words of which much I do not recall because all I could do was sit there in disbelief and sadness. Derek sat silent and looked royally pissed. Later on he told me that he was mad because of how they came in to the room...he felt like they were imposing a death sentence on Mason and still thought the diagnosis was wrong. We both dealt with this news in our own ways, obviously. We were there for 3 hours and honestly could not remember 50% 0f the appointment. To top it off on the way home on a rainy night we got into a little fender bender, but everyone was okay and no damage or injuries occurred.