Mason's Journey: February 2011

Saturday, February 26

Thursday, February 24

Mason had another appointment today to see the Doc. This boy has already seen the inside of a doctors office 18 times since he left the hospital at 2 days old! Maybe we can get him an honorary Medical Degree! This time we saw Dr. Shallue, our family doctor, for his 6 month well baby visit. The report was pretty much the same as Monday's. I do leave feeling a little underwhelmed and feeling like I forgot to discuss something because these visits are a drop in the pond compared to the length of the CF appointments. Plus a lot of our questions were answered at the CF clinic.

A couple things that came out of today: 1. The poor boy did a great job getting poked 4 times for vaccines. He got the scheduled 6 month set plus the flu shot. He cried more when he got blood taken on Friday than these things. He got the flu shot you ask? Well since he is finally 6 months old and it is still cold and flu season and he is considered "high risk" due to the CF he got one and will get one every single year. 2. he weighed in at 16.6 pounds...I about had a heart attack because this is a whole pound less then Monday. Dr. Shallue felt that the scale was different but also he was quite the squirmier trying to move the scale himself. So I am sure that had something to do with it! Speaking of squirmy little man..I was trying to pay attention to the conversation, but all I could think of was, "man I wish another person was here to keep him occupied and from rolling to the floor." Proof that Derek is a great "Mason Watcher" at the CF appointments! We go back in 3 months for his 9 month Well Baby visit.

On the way home we got a treat for being such a brave boy...okay maybe mommy got herself one for making it through the week.

When we got home Mason had a delivery! Lucky boy, he seems to get a lot of mail for an almost 6 month old!

Mason is not drinking these yet, but we get them free once a month (for one year only) from the company who makes his enzyme medication...Since the case is normally $45 and I know we will be using them in the near future why not? They don't expire for another 1.5 years

So what is the little guy up to these days?

First off, Mason has a new hair style! Granted it has only been a few days since we started it but we love it! People kept saying he had a faux-hawk so we gave him a real one. All the long strands are on the top so it works perfectly! He will thank us later...yes, he will. Everyone at the doctor's appointment today was commenting on how cute he and his hair looks...see he already has a way with the ladies!

His momma was born in the 80's!

Mason is talking up a storm. He usually is doing the screeching demanding thing, but the last few days we have started to hear this...

This is what I over heard in his room yesterday while he should have been taking a nap...cracks me up...he was making himself laugh!

Momma and I were having a laughing session.

Mason has really taken notice of Mia lately. He will stop whatever he is doing if he sees her on the move and just stares at her. To my amazement she has taken some "friendly" petting from Mason well. Of course, I am near by to intercept any "friendly" snapping back at Mason...which has not yet occurred. Mia has a way of making her way next to me whenever she feels the need for some love. She will come find Mason and I and snuggle in between. She also likes to come jump on my lap when I am rocking him to sleep in the nursery. I can't say I mind...I love the snuggles with my two babies.

Oh.."hi, Kitty." let me pull your fur!

He is getting better at sitting. He is up to 10 seconds unassisted. We have been working hard on that. There has been a few falls backward that mom hasn't been able to catch so we have had a few Mason tears in mastering this task. But he still prefers to stand over anything else. I think he is having a love affair with his jumper-roo...He LOVES that thing! And we like it too since it provides him with exercise and it helps knock loose that yucky mucus in his lungs! I see a trampoline in his future!

Hmmm, how do I get the balls out of there?

Everything is in his mouth and has been for awhile. One thing in particular that I enjoy watching is him with is his nuk. You can put it out in front of him, he will take a gander at it and promptly place it in his mouth. He will then take it out, study it, and put it back in the correct way. I don't give it to him all that often unless we are doing his CPT, going to sleep, after his prilosec (otherwise his fingers go in before he getting those medication beads swallowed), or if he is crying hysterically in a store and want to same some embarrassment.

he keeps it close if he needs it

I guess the ear is a good place to store it too...the kid is a genius!

He is a rolling rolling rolling little boy. He no longer likes to explore just the blanket we put him on...he would roll across the full length of the living room if we let him. He used to be a left side preferred guy but now he is an equal opportunity roller.

He tuckered himself right out! Mia has been a little protective as of late.

Sometimes I forget that these bars are not imaginary.

If those feet are not moving they are crossed...so darn cute and comfy!

We haven't mastered the crawling thing yet. Mason can get the front up and ready and the starting to get that butt up in the air, but we just can't quite get them up at the same time. It will come and then Derek and Sara will be off to buy a gate for the stairs!

After the appointment on Monday when we discovered he is almost 18 pounds we moved him into size 3 diapers. As a side note...We have been buying size 3 diapers for some time now when we get really good deals on them...So I counted them up last weekend and realized that if Mason uses an average of 7 diapers a day we have enough to keep him covered until July 28th! That's 1069 diapers people! Like I said we got some really good deals on diapers.

I wear size 3 diapers now!...really I do...

I've got my head in the books already!

He put the book there himself...really he did!

Mason got to hang out with almost all of the Dinner Club since everyone was feeling good to watch the Packers get the big "Superbowl Win"

Yes, I do believe that Mason has taken over the house!...and we wouldn't have it any other way!

Wednesday, February 23

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.

Saturday, February 19

Mason's 6 Month Photoshoot

Last Wed, Derek took off work and all three of us spent the day together. We headed up To Hubertus to McManigal Photography to get some professional pics taken of Mason. I know what you are thinkin'...why did you just not take them yourself Sara? Simply put, I don't have the equipment (lighting, $3000 camera/lens, backdrops) that she has. Plus knowing me, I would take ALL day and have a very crabby baby on my hands and then spend far too much time putting them all through Photoshop. Amy did an awesome job...all while being 9 months pregnant! We are heading back to her in May to get 9 month pics! Enjoy!