Energizer and Adorableness

Wednesday night my friend Annia and I went to the Columbus CF Foundation's annual meeting.  They gave a chapter report, a national report, and a medical report, then gave some awards.  The medical report was by far the most interesting part for me.  I learned a lot about recent advances and came away with some questions for Monkey's doctors and a renewed sense of hope that this disease will be cured soon.  The average life expectancy jumped from 36 to 41, which Dr, McCoy said is the biggest single year increase she has seen in her career. I was also surprised to see my name listed in the program as someone who raised over $1000 for the Great Strides walk last year (I raised close to $5000).  Go me!!

The meeting ran really long and had some boring moments for me, so was probably extra boring for Annia.  We had Baby Brother with us, so that was an added challenge.  Annia is awesome to have come with me to this meeting, since my husband had to stay home with Monkey (people with CF are not supposed to attend indoor CF Foundation events because they can make each other sick).  Annia has been great support to me at other times also, such as going with me to Monkey's Pulmonary Function Test appointment and even going in to his CT with him because I was pregnant and couldn't go in the room.  It's amazing to have the support of friends like her.  If you know her, tell her how awesome she is next time you see her.

I left the meeting more motivated then ever to raise awareness and money for CF, which was perfect, because our next stop was to the Alumni Club bar, where we were going to talk to one of the owners (a friend of Annia's) about having a fundraiser for our Great Strides team.

I was overwhelmed by his openness to the idea and willingness to do whatever I envision to make it successful.  He also agreed to do a pin up campaign in the bar during the weeks leading up to the event.  This is where customers donate a few bucks, then get to write their name on a pin up to hang in the bar.  I think a bar is a brilliant place for a pin up campaign, because drunk people will give a lot of money!! ;)  So, I have some planning to do, and will be having another meeting with him soon to nail down a date and the details of the event.  Hoping to get some bands to play and items donated for a silent auction.  Donations taken at the door.  Maybe a special signature drink that a portion of the cost can be donated to the cause.  Will hopefully have our team t shirts finished and ready to sell, or at least a design to show and take pre-orders.  I'm open to suggestions and/or help from anyone who wants to get involved, leave a comment here or contact me through facebook, or email, or in person if you know me in real life.

I'm just feeling really energized, excited, and positive about this right now, which is a good way to feel and a good time to make things happen.

And since I have no picture to go with this post, I'll just leave you with some adorableness.

 

Support and Fundraising

Shortly after Monkey was diagnosed, I found out about a fund raising event for the Cincinnati chapter of the CF Foundation that was coming up.  It was a Halloween 5K called Run Like Hell.  It was at night, through a cemetery, and people came in costume.  I was looking forward to beginning my association with the CF Foundation, and this sounded like a fun event, so I started a team in Monkey's name and set a fund raising goal of $500.

I remember my sister telling me I should set my goal higher, that people would surprise me.  I reluctantly raised my goal to $1000.  I posted a link to my fund raising page on facebook, and watched in amazement over the next few days as the donations began rolling in.  I was surprised not only by who was donating, but by the amount people were donating.  Of course I got donations from family, close friends, even business associates of my dad's.  This didn't surprise me.  But I got donations from high school friends I hadn't spoken to in 15 years, people I babysat for when I was a teenager, even friends of family members and other friends that I had never met.  And these donations ranged from several hundred dollars, to 5 dollars.  The donations of 5 dollars were the most touching to me.  It said to me that these people had little to spare, but wanted to spend their hard earned money to show me their support.  I was moved to tears so many times in those weeks as I reached and raised my goal over and over again!

I ended up raising over $5000 for that event.  I raised so much so quickly, in fact, that the CF Foundation employee in charge of Run Like Hell called me personally and wanted to meet me and Monkey.  She couldn't believe how quickly I was raising money and wanted to talk about the foundation and what they could do for us.  This started a great relationship with the team at the Cincinnati chapter CFF that lasted the entire time we lived in the area.  But I guess details of that relationship (which I really miss since we moved to Columbus) is a topic for another post.

I decided I wanted to come up with a theme costume for our team.  I wanted something that we could dress Monkey as the center of, and have other team members dress as supporting cast.  I came up with the idea to dress Monkey as Yoda, and the rest of our team would be Jedi.  We had a small team for this first event, just my husband and I, my parents, and our good friend Zack who has supported us in many ways as we have raised funds for different CFF events.  My dad's cousin also joined us for the event.  I knew I really had the support of my parents when they agreed to dress as Jedi and be seen in public.

 

our team

                                                             My tiny Yoda

The event was so much fun!  It was fantastic people watching and seeing all the creative costumes people came up with.  Monkey was 3 months old, and was ooh-ed and aww-ed over all evening.  Our tiny Yoda and the rest of the team were photographed many times, and we enjoyed mingling with the crowd as we walked the 5K at the very back of the pack (the police actually took down the street barricades and told us to walk on the sidewalk towards the end because we took so long to finish).  It felt amazing to know we had the support of so many people, and that we were helping raise money that would go towards research to someday cure CF.  This event sparked a passion in me to do everything I can to raise money and awareness, and this passion has become a huge part of my life and who I am.  I know in my heart that these efforts will be rewarded with the chance to see my little boy grow up to become an incredible man.

CF yo-yo

The winter is the absolute worst!  Just as soon as we get Monkey healthy and get his weight back up, he gets sick again.  I feel like he spends more time sick than healthy in the winter. 

We very quickly went from super happy "yay he gained weight and got rid of the cough", to "crap, he's sick again."  In literally, like, 24 hours!  His clinic visit was Wednesday, everyone was thrilled with how great he was doing.  Thursday night he had a fever of 102.  We stayed home Friday, Saturday the fever was gone, but he still was not quite himself, meaning he actually sat still for more than 30 seconds at a time.  Sunday he seemed pretty much back to his usual self, bouncing off the walls and just a little extra whiny and quick to fits and tears when things weren't going his way.  So back to school we went today.

Around lunch his teachers told me he was very calm and quiet today.  Not a good sign!  If you know my Monkey, you know for him to be calm and quiet, he must not be feeling well.  Tonight he barely ate dinner and by bedtime, was running a low grade fever.  His nose is running like a broken faucet, it's turning from clear to a lovely shade of neon green, and his eyes are red and glassy.  At this point we can just keep hoping it won't go to his lungs, but it seems unlikely that hope will be fulfilled.

So, I will go to bed tonight, praying he wakes up in the morning fever-free so I can go to work.  Wish us luck as we continue to bounce up and down on the CF yo-yo.

Now

I've been trying to decide what direction to take this blog now that I have given the basic info.  Do I keep going chronologically and write about all the things that stand out from the first 2 years, or do I skip to how things are going now and start blogging real time events.  I decided I will do both.  Now that everyone has the background of our story, I will begin writing about events as they happen, and also sprinkle in some entries about important things that happened the first 2 years of Monkey's life regarding his CF.

Today Monkey had a clinic visit.  We had been to clinic 3 weeks ago, and that visit had not gone well.  He had had a cough for several weeks at that point and even with extra treatments and antibiotics it seemed to be getting worse.  He had also gotten taller, but lost weight, which put him in the red zone.  These were both very concerning to our team.  They did a viral culture (a horribly unpleasant nasal swab) to find out what was causing the awful cough.  We also got orders from his dietician to basically let him eat whatever he wanted, whenever he wanted to get his weight back up. I was afraid we were on the path to another hospital admission, which will be very difficult this year seeing that we have a 4 month old baby that is solely breastfeeding.

His culture came back positive for RSV, which sounds bad, but is actually a good thing for us, because it means a.) we know what is going on, b.)it is not bacterial.  After about another week, his cough was much better, and then gone altogether.  We continued to try to get his weight up by letting him eat what he wanted instead of insisting he eat what we put in front of him or go hungry.  And before anyone freaks out on me, by whatever he wants, I do not mean he ate cookies and candy for three weeks.  We really try to limit his sugar intake and he has never had much of a sweet tooth.  What that means is, if he didn't want to eat what we made for dinner, he could have cheerios, or yogurt, or a banana, or whatever else he requested.  It also meant that when we were out at a restaurant with my inlaws over Christmas, we let him eat 3 buttery yeast rolls and then barely touch the meal we ordered him. 

Well, all this apparently worked because he gained a whole kilo (2.2 lbs) in those three weeks between clinic visits!  His team was ecstatic with his progress, as were my husband and I.  Since allowing him to eat what he wants still means he is eating nutritious things (for the most part), it was decided that we should stay the course for now.  So this means I will continue to pack his lunchbox everyday with plenty of options for him to choose from  if he does not like what is being served for lunch or snack at school.  It also means we will continue to feed him whenever he says he's hungry, and give him (pretty much) whatever he says he wants.  It may cause some dirty looks from people who do not understand his special needs,  but we can learn to ignore them.

So, our clinic visit today went very well except for one small issue.  When the nurse practitioner took out the swab to get his throat culture (done at every visit to test for bacterial growth), he must have remembered the super unpleasant nasal swab they did last time, and he totally freaked and could not be calmed down.  He got himself so worked up that when the nurse stuck the swab in his mouth, he puked ALL OVER (and, of course, he was sitting on my lap).  The nurse said that had never happened to her before (leave it to my Monkey to be the first) and we all felt horrible for him.  So we decided to skip the culture this time, and I got to leave in a stylish new outfit!

Next clinic visit: 5 weeks!

Treatment

Our first visit to the CF Clinic was an educational visit.  My parents came with us, and we learned about Cystic Fibrosis, and what it would mean  for Monkey and our family.  We found out that Monkey's 2 mutations are fairly uncommon, and the combination of the two was very rare, therefore they did not have a lot to go on as far as what to expect.  We  were very encouraged to discover that Monkey is pancreas sufficient, which means that his pancreas functions normally, unlike most people with CF.  He would not have to take the tens of enzyme pills a day in order to absorb the nutrients in the food he eats that most people with CF have to take.  This was a huge relief.  They do not know for sure that his pancreas will continue to function throughout his life, but they believe that it will.

So, keeping Monkey healthy was going to be mainly about keeping his lungs healthy.  We learned about the different medications he will take and about airway clearance.  They taught us how to do Chest Physiotherapy (CPT).  This is a way of giving percussions, or pounding, on specific spots around his chest, back, and sides to loosen the mucus in his lungs in order for him to be able to cough it out.  This is done with a small rubber percussor.  There are 12 different locations on his body that need to be percussed for 2 minutes each.  This is done 2-4 times a day.  I used to joke that I had to beat my baby everyday per doctor's orders.  In all reality, giving CPT was incredibly difficult and emotionally draining.  Monkey was 4 weeks old when we started giving him these treatments.  He would scream and cry the entire time.  He was so tiny and vulnerable, and it broke my heart to have to continue to pound on him as he screamed.  Every bit of me wanted to pick him up and comfort him , but I knew that to keep him healthy, I had to finish the treatment.

 These are Monkey's percussors.  The small pink one was his first, and when he got a little bigger, we got the cream one.

                                   This is Monkey having his CPT treatment when he was about 4  months old.

 Eventually, when he was 10 months old,  Monkey was big enough to fit into an airway clearance vest, which is attached to a machine and shakes vigorously in order to break up the mucus in his lungs.  This was much easier for everyone than doing the CPT by hand.  He was able to sit upright, and we could read books or play while he was getting his treatment, he was even able to move around a little bit.  This is how he gets his airway clearance treatments still.  When he turned 2, his settings on his machine were changed from 24 minutes to 30 minutes.  It was also set to shake a bit harder.  As he gets older, his settings will continue to change and shake harder to break up as much of that nasty mucus as possible.

      This is Monkey having a vest treatment at 10 months old.  This is one of the first few times he wore the vest.

In addition to the airway clearance, Monkey also takes 2 medications through a nebulizor.  Albuterol is taken before every airway clearance, and is a bronchiodialator, which helps to open things up so he can cough out the mucus easier.  This is a medication common to people with asthma and other respiratory illnesses.  He also takes Pulmozyme once a day.  This is a mucus thinner and is a medication specific to CF.  It helps to keep his mucus from getting overly thick and sticky.    He also takes Flovent through an inhaler twice a day.  This is another medication common for asthma, it is a corticosteroid.

In all, his medications and treatments take a little over an hour a day when he is healthy, and up to 2 and a half hours a day when he has a cold, cough, or any other respiratory illness.  People often tell me they don't know how I do it.  My response is always, I don't know either, but if it were your kid, you'd do it to.