Clinic Update

Mason had another appointment at the Cystic Fibrosis clinic on Monday. Overall, he looks great! It was funny to see each team member come in one by one and say "Oh, he is getting so big" or "Oh, look at those eyelashes." and so on. He is such a flirt with the ladies! Clinic visits are sure changing now that he is more active. I am not sure how anyone can go to those appointments without another person...with a kid who won't sit still, starts crying, etc and trying to listen, converse, and take notes with the medical team...I know I couldn't do it alone! Derek is the designated "Mason watcher" while I take care of the question and answers. We are a good team! Of course the 3.5 hour appointment went fast with all the coming and going and information exchange.

"look at me! I don't sit or stand still!"

He is currently weighing in at 17lb 8 oz which puts him in the 45%. He gained a whopping 3lbs 1oz since January 3rd! That's 24 grams a day and they were looking for 13-20 grams a day! Way to go Buddy! He is 26.5 inches tall putting him in the 52%. His height for length percentile is 52%!!!!! Notice my excitement with that number? This is the number that we want to be above 50% because there is a direct correlation between that number and lung function later in life...and research has shown with that number over 50% before age 2 =better lung function=longer/better quality life! Now just to keep it there...hopefully he will not be a trouble toddler eater!

Reading up on CF in his medical binder

(yes he has enough of a record already for a trusty organized binder)

Speaking of eating...We have been given the green light on starting food! How exciting for the little man...he gets to taste something new! I am not going to lie...this gives me anxiety for a couple of reasons. 1. We now have to think a little harder about how many Creon (enzymes) to give him with each "meal" based upon the fat/protein content. 2. we have to rely on his cues as to how much to feed him and when to stop but they need to be "scheduled" for the most part...leading into number 3. Hoping that he will be getting enough calories/fat/protein to sustain his current weight and not drop. Even with the anxiety of it all..I can't wait for the pictures we will get and the "fun" we will have cleaning up! Perhaps I can talk Derek into getting a dog now? We will be starting with Rice Cereal and adding a little applesauce to it if he doesn't care for it at first since he has been used to applesauce since he was 4 weeks. When he has that down in 2-3 weeks we can start that lovely pureed liquid that is supposed to resemble what we eat. Bananas and Sweet Potatoes to start since they are the highest in calories. And to add to the tastiness of those two items we will add salt and butter or oil to it to add calories and fat....see a pattern here? We are upping his daily salt intake to 1/4 tsp from 1/8 tsp due to his growing body. He is our salty boy! (don't believe me...give him a juicy kiss on the forehead and you'll be thirsty afterward!) We had our first "oh we need to buy something less healthy than we normally would" moment. We use the Smart Balance butter and now we need to buy regular butter for the little man! It's crazy to think that we are going to be feeding our baby boy a lot of fat, salt, and extra calories on purpose! Derek and I just hope we have the will power and figure out the cooking strategy quick before Mason has two parent's who resemble to blueberry girl in Willie Wonka! Best news of the food talk...we can knock the 5th bottle off the list. No more waking him to eat between 10pm and 11pm! The only other person more excited than Mason, is Derek (because he always took the late shift).

"hmm what should I be eating..."

Medically, Dr. Levy says Mason is doing good. She stated she feels he has a "cold"...not a cold in any sense as I would have diagnosed. But since he had stuffyness and a couple coughing fits in the morning only last week...he has a "cold". The back of his throat was red and he is still a little stuffy but NO coughing, runny nose, or fever to be seen...I guess this is a "cold" with CF...and guess who gave it to him? Ironically, as much as we try to safeguard him from others illness...his momma did! It was bound to happen...this way no one else has to feel bad about it I guess.

Going in today we thought we were going to be starting an Albuterol inhaler daily, but Dr. Levy wants to hold off a month and see how he does. We were happy to hear about that. We are all for giving him medication that he needs but would like to hold off as long as possible if all is well... knowing what he will need in the future. Can't wait for those Walgreens runs when I come home with 5 big bags of stuff (notice hint of sarcasm there). She also said something that was music to my ears..."I try to hold off on antibiotics as much as I can." You see, CF kids/adults will eventually be on at least one if not more daily inhaled antibiotics (and at times IV antibiotics requiring a hospital stay) for most of their entire life...a viscous cycle of over use of antibiotics from a non CF view (but it is actually needed with CF)...bugs becoming resistant...those super resistance bugs enjoying a stay in those oh so welcoming mucus filled CF lungs...thus the need for the antibiotics. Now just nervously waiting for the spuum results to come back in a week...here's to hoping for "normal flora" only!

This is the sheet that is used by the team for some communication. We are handed it at the end of the appointment...we are thankful that this thing is not all marked up because the more marks...the more things need to be done

After all the fun in the CF clinic, we headed down to the Outpt clinic (still have not left Children's yet) to get the little guy's blood drawn. Two vials, a few tears, some screaming, and a diaper change later we were out of there. They are retesting his liver enzymes which were elevated last time (double what they should be) and his Vitamin E levels (also double what they should be). As a side note the Deli at Children's has some fantastic food. Guess it's good thing I have always liked hospital food. I forsee many more meals there into the future...maybe I can get a punch card?

all pooped out from the appointment

We go back on March 28th for another appointment/check-up. Mason and I will visit Children's without daddy on March 10th for another Sweat Test. Seems silly to me that we NEED to do another one since we have the conformation of CF with the genetic testing, but it's the CFF protocol I guess. Not sure how I feel about this go around...hoping that it will not bring back those memories of the first one and finding out the same day...at least I will know the results this time and not have my world shattered all over again. On he otherhand...this time I will be trying to hold down a squirmy 6 month old while electricity flows through his body who doesn't understand why instead of a sleeping 3 week old...should be interesting to say the least.