Mason's Journey: lots of updates...and Happy New Year!

So sorry that it has been awhile. I have been working more than full time for the past three weeks and momma was tired. Have lots to check up on. so here we go!

Happy New Year!

We spent our first New Year's with our little man at home. We normally get together with the Dinner Club, but thank god we didn't this year because about a 1/3 of them came down with the nasty flu while in the Dells that weekend. That would have made for one nervous Sara/Derek. So sadly this year we didn't even stay up to see the ball drop at midnight...oh how things have changed! I ended having to work until 6:30pm, picked up Matteo's for supper on the way home, and then watched movies and cuddled with the little man.

Notice the wet shirt?...Mason is a sloppy drinker! :)

We did a little reading of our favorite book...Mason decided that he wanted to hold on it and not mommy..such an independent little man already!

Then Mia wanted to join in!

January 3rd...

Well the start of a new insurance deductible...err...new year at the CF clinic is upon us. It was quite the long appointment this go round...4.5 hours. 1st off, the team feels he is doing great! He had his first of many to come x-ray's before our appointment in the morning. Let me tell you there were some tears from Mason and Mommy. I was very curious as to how it would all go down...well he got bean bagged and taped. I will spare you the taping his neck/head back part...that's when the tears started. We saw the results later in the office and happy to report they see no pockets of thick mucus anywhere! yahoo! In CF terms he has clear lungs and let's pray they stay that way for a long long time!

He was curious and content until the taping started

I thought I would share some pictures of what we do when we go to clinic appointments. 1st we find out how long Mason is on the measurement spot (not sure what they call it) Mason is now 25 inches long! I am not sure why, but it seems weird to think he is already over 2 feet tall. Sounds weird when you put it that way, right? He is in the 40-45%.

Then in that same area they put a pulse oximeter on his foot/toe to get his pulse and measure the amount of oxygen in his blood. He doesn't seem to mind this until they go to take it off...it's like a good and stuck band aid. The pulse ox is one way right now to know if his lungs are working well or not. When he turns 9 months he will undergo a PFT (pulmonary function test) that he will be given a sedative, placed in an incubator looking contraption, and hooked up to something that looks like a ventilator for a few hours. This will give a very good idea how well his lungs are functioning. Not looking forward to that...more on that when the time comes.

Then we move into the exam room. On a side note, Children's Hospital does it's best to make a hospital look fun with the bright colors and paintings on the ceilings. We get weighed on the scale in our birthday suit. It's very important to get an exact weight, because his weight is very closely monitored. ( i took the liberty to censor the pic) I'm sure he will thank me when he's older. He weighs in at 14lbs 7oz (we weighed him on the Wii on Sat. and he was 15.2 pounds with clothes on..not that the Wii is accurate) This puts him in the 30-35% for weight and we could not be happier! He has been as low at the 10% and was hovering around the 20%. Remember the goal is 50% or higher. We are on our way!

It was decided that since he is still spitting up a lot, that it was time to start a GERD medicine. So Mason now takes 5mg of Prilosec in the morning 30 min before his first bottle. This makes for an early morning! Has it been working? I am not entirely sure...perhaps some, but he is such a squirmier that i think part of the spit up is due to his activity after a bottle even though we try to keep him still for 30-40 min.

We were told that we should be doing CPT (chest physiotherapy) twice a day now. This is being done as a preventive measure (as much of CF care is). It helps knock loose the thick mucus in the lungs so that it can drain out and he can breathe better and hopefully less respiratory infections as he grows. They had the Respiratory Therapist come back in to show us again how to do it. That first night of actually doing it properly was tough. I think I cried as much as he did. The reality of CF all just came flooding back at that moment. That this is something we HAVE to do twice a day to fight for his life.

Mason was tuckered out from the 4 hour appointment too! We had a little fun with his percusser as he was sleeping... :)

So now we do this for 20-30 min twice a day. Mason doesn't seem to mind it.

He also had a throat/sputum culture taken as will always be the case. They always check to see if there are any other bacteria growing besides what would normally be there. Thankfully the results came back a few days later as "normal flora". It can nerve racking not knowing if we might have to start an antibiotic to eradicate a new bacteria. That is road we are in no rush to travel. They also decided to take a blood sample to check his vitamin levels and a host of other things. A week later we were told that everything came back normal except a few things: he has elevated liver enzymes and his Vitamin E levels were almost double what they should be. So we are dropping his vitamin dose a bit and retaking his blood at the next CF appointment (Feb 21). They didn't seem worried about the liver enzymes so I am trying to ignore what Google has to say on the subject. :)

Januaury 4th...

Mason had his first playdate! My friend Kim was in town from Cali watching her neice Adeline up in Port Washington. So, Mason and I took a day trip to visit. I think it went well. We might be in trouble though...Mason asked for her number before we left... :)

Looks like they enjoyed themselves

Kim got a little snuggle time in while he slept

January 5th..

I had made an appointment for Mason to see Dr. Shallue because we had been seeing some blood in his diapers. We were worried that it could be a milk allergy or something worse, but turns out it was a fissure (a tear) by his anus. He never seemed to be in pain from it, and it is all healed up now. Poor boy...he has seen the the inside of a doctor's office far to much in his young life...but we make the best of it!