Well Hello There!
So, this is post that I have thought long and hard about. It is a post that I had wished I never had to write about, but as life goes you gotta roll with the punches. As many of you know, at just 3 weeks of age (on 9.20/21.10), Mason was diagnosis with a genetic disease called Cystic Fibrosis. It is an inherited, life long, chronic disease that affects his ability to digest and absorb food and eventually his ability to breathe. In order to have CF you need two mutated genes to be passed on. So far we only know one of the mutations and are still waiting (for over a month now) to find out the second gene. In the simplified of terms, the gene mutation messes up the salt flow in and out of his cells, which results in the mucus lining to become thicker than normal. This thicker then normal mucus plugs up the duct coming from the Pancreas. This doesn't allow the enzymes important for digestion to be released and he therefore does not absorb enough nutrients. This thick mucus also plugs up his respiratory system. This mucus is a great host for bacteria to get stuck in and cause him to be much more prone to infections. Even just the common cold can hospitalize him if it isn't caught soon enough. Click HERE for more info on Cystic Fibrosis.
So, after we found out this news, we were directed to the Cystic Fibrosis clinic here at Children's Hospital in Wauwatosa. We are so thankful to be living so close to such a highly rated clinic in this field. We have gone to 3 appointments already, each lasting about 3 hours because we meet with about 4-5 different professionals while we are there. There is so much information exchanged during this time that truthfully the 3 hours goes pretty quickly, but I leave exhausted. Mason has a medical team that will now follow him for the rest of his life. We will be going to appointments once a month until he is 1 year old then every 3 months after that.
This is the Cystic Fibrosis clinic we have been going to at Children's for the past month.
So what does this all mean for our little man? His stool test which basically shows how blocked his pancreas is already came back at 66 and normal is over 200. We are told that his number will never get better it can only get worse. So this means the enzymes are not totally being released into his system. This means he needs to take enzymes every time he eats. We are also now to start giving him at least one bottle of breast milk a day and add formula to it so that he gets increased calories. At his last appointment on Monday, he had gained 11 onces in two weeks, which is good, but they want to see a higher number. The more weight he packs on the better it will be for him. He currently takes a special vitamin mix that is created only for CF patients. Finally we are starting him on Prevacid (and antacid) to help with his acid reflux. As he gets older he will be on a high fat/calorie/salt diet.
Here is a one month supply (for now) of the enzyme capsules (we open them to get the sprinkles) he must take now and for the rest of his life.
These are the opened enzymes that he must take every single time he eats. We have to use baby applesauce as a vehicle to get him to take them. I would have never thought I would be giving my baby boy "food" at 6 weeks old. He currently takes 1 1/2 capsules (we open them to get the sprinkles) with every feeding. After he takes them he needs to finish eating in 45 min or we have to give him more enzymes and then proceed.
As for the respiratory issues...well we thankfully have not had any issues with this yet and hope not to for a very long time. The doctor stated that in the spring they will teach us some therapies that we will have to do on daily basis ti loosen up the mucus in his lungs to hopefully keep him healthy and free of infection. These will involved "clapping" up to 12 areas on his upper body.
We have been told to be very careful this cold and flu season, not only because he is a baby, but also due to his CF. There is to be a lot of hand washing and disinfecting from here on out. We are to limit his exposure to anyone with cold/flu symptoms. Smoke is a very big thing to stay away from, so much so that we are not to burn candles in the house except every now and then. We are told that he will live a relatively normal life. Go to school and play sports (exercise is actually encouraging because it builds lung strength and loosens the mucus). Although his life expectancy is not as long as ours, the Cystic Fibrosis Foundation is working on treatments toward a cure every single day. So, it is a great thing that we know now so that we have a head start, so to speak, on keeping him healthy for the future. So, Mason has a diagnosis of CF, but this does not define who he is or what he can grow up to be. CF is just a part of him, part of his daily routine. He has the chance to be who and what he wants to be and we plan on encouraging whatever he wants to do (within reason of course :) ) So on to pictures of our little man, because he is what lights up our life!
Now for the fun stuff...LOTS and LOTS of pictures...
Hanging out with mom during the day
Loving on dad
He is an equal opportunity lover
This is Mason's political platform on how he feels about joining the workforce in about 16 years!
Mason posing with a super duper nice gift basket from Kim...as you can see his is thrilled!
I finally opened up the Moby Wrap
...and Mason love's it...falls asleep almost instantly...therefore mama loves it too!
Grandma Kathy was so excited to feed Mason for the 1st time that she had to go out and buy a bottle...only because mom forgot to pack one! oops!
Mason was sooo out at this point, he was laying higher and then all of a sudden he just scooted himself down into this position...thought it was kinda funny!
don't worry I moved his hand so he could breathe a little better!
Grandpa Dave feeding Mason for the 1st time!
This what happens when Derek gets a hold of the camera after 3 coca cola's!
Packer Sunday!
(with Sara's very first Packer shirt!)
I guess the game got too boring to watch...
I took Mason to see Dr. Shallue for his two month checkup on Wed Oct 20th! I can't believe he is almost two months already! Before I know it, I will be saying I can't believe my baby is 18 and off to college!...okay back on topic...It was interesting to see how much of a difference two days and a different scale/location can make on his stats. He weighed in at 10lbs 3oz (placing him in the 23%), his length is 22.75 inches (placing him in the 54%), and his head circumference was 39.6cm (placing him in the 53%).
Overall, Dr. Shallue said he looked good with no real worries. I think that has partly to do with the fact we are going to the Cystic Fibrosis Clinic frequently. She did however, confirm his pink eye has returned and we will just continue with the eye drops from before. His head is in "perfect shape" and motor skills good. We will be doing weekly weight checks until we go back to the CF clinic on Nov 15th. We also discussed using a separate entrance when we do come in since it is cold and flu season. Dr. Offices are filled with sick people and we want to decrease his exposure as much as we can since he can become very ill from just the cold. The office is going to allow me to call when I arrive to the appointment and greet us at a separate entrance and take us right into a room so that we can avoid all the germs. I was so happy to hear that they are going to be so accommodating because it was something the CF clinic was requesting. 
After all that talk, it was time for his immunization shots! I was slightly worried about it, but they went well. He got three shots in the legs and one immunization by mouth. He was a trooper! He only cried and got red in the face for about 30 seconds and went back to sucking on the pacifier!
His badge of honor for taking those shots like a champ...two snoopy band-aids (the other one in on his other leg)!
We have recently discovered Mason's new love...The Ceiling Fan! Here he is gazing up at it from our bed. He can sit for quite some time and just stare up at it. It so fun to see the amazement in his eyes as he is starting to take more and more of his environment in. I just sit and wonder what is going on in that little brain of his.
Happy early Halloween!
Stay tuned for fun videos...i have to have Derek help me load them because he is the video guru!
