Growing, Growing, Growing

Mason is doing really well these days. He continues to get stronger and stronger every day! He still is not a big fan of tummy time. His head and neck control are great so far despite not enjoying tummy time. He is getting 6 meals a day and sucks the bottle down so fast it's unbelievable...sometimes in 5-10min! I swear we are not starving him...quite the opposite..the more calories we can get down we do! He smiles, smiles, smiles all the time. It is amazing to watch him take in the world around him. You can just see that mind of his soaking it all in. We are showing/signing him about 5 "phrases" in sign language that we hope as he gets older will start to use so that we can communicate a few needs. I know it is a bit young for him, but we figure he will get used to seeing them and later start associating its meaning. His legs are getting stronger everyday as well. He demonstrates that really well when we try to burp him half way through a feeding. Those legs/body go stiff as a board in defiance and he can actually stand up (with support of course). Well onto the pictures because that is really why you come to visit the blog in the first place! :)

Passed out on Daddy...doesn't he look older than 11 weeks old here?

Fast asleep

Hanging out with daddy

I just had to do it...Derek doesn't like Dogs or Overall's...don't worry he spit up all over it so he must share Derek's thoughts on the subject.

We had another routine clinic appointment at Children's Hospital on Monday. Another 3 hours of information and exhaustion. Overall, Mason is doing well. But now we have more answers and a plan.

He is continuing to gain weight to the teams liking. He is on the lower side of the range per day but gaining in that as well. When we talk weight, of course we talk nutrition. Derek called me out to her when she asked if we were still fortifying the breast milk with 2 tsp of formula..."Yeah, Sara uses a big heaping scoop." Hey, i figure a few extra calories are not going to hurt him only help in this weight gain quest. She smiled and did not really seem to mind but promptly wrote something down in his chart. He is in the 20-25% for weight at 11pounds 8.2ounces. He is in the 25% for height at 22.5inches. Oddly enough, he did not grow anything since the last appointment. However, we did discuss that he was measured differently the last time which may have given skewed results. But overall the dietitian is pleased with what she sees. With that said, we are to increase his enzymes to 2 capsules a feeding. This is due to his increasing weight and his incredibly foul smelling poo. This can be a symptom of the malabsorption, thus the need for more enzymes. On top of that we will be giving him an 1/8tsp of salt a day to replace some the salt that he looses. Just like you and I he looses salt when he sweats but he looses it at much higher rate/concentration. This again is due to the CF mutation messing up the salt transfer in and out of his cells.

Getting his "appetizers" a.k.a enzymes. I think he is starting to put 2 and 2 together. If he doesn't get the bottle o' milk right after his enzymes he gets pretty fussy and fast!

After we see the nurse, dietitian, Pediatric pulmonary Fellow doctor, the Genetic Counsoler, the respiratory therapist, we finally get to see Dr. Levy. She is really starting to grown on us. At first, we really did not get the greatest first impression in regards to bedside manner. However, she is getting so much better, but that just might have to do with our increase in comfort with the whole process. She said his lungs continue to sound clear (thank the Lord) and overall is happy with his progress so far. She agreed that we can wait on the Prevacid since his symptoms have significantly decreased. (again, thank the Lord because INS will not cover it). She did want the Respiratory Therapist to come back in and show us how to do CPT (chest percussion therapy).

CPT basically is the pounding (yes I said pounding because that is what it feels like we are doing to him) on 14 different locations of the lungs with a percussor to loosen up the mucus in his lungs. In all, it will take about 28min (of actual percussing) to do. For now, we were shown just so that we get comfortable doing it as well as increase Mason's comfort level with it and in case he gets sick before spring when they were going to initially start it. We don't have to do it twice a day like we will most likely do starting in spring. To my surprise he did not seem to mind it one bit, even started smiling up at Derek while he was practicing.

So what is our "formal" plan. We continue to work on making sure he is getting good nutrition and gaining adequate weight/height. This is done by fortifying breast milk with formula, adding salt to his milk, giving him special vitamins, and always starting with enzymes before a meal. We be very cautious of germs/bacteria during the cold/flu season. We monitor for the slightest sign of infection. We start "practicing" CPT to find a comfort level (really comfort while being pounded on!?!). And the biggest part of the plan...to love our little guy and live life.

taking a snoozer

I almost fit in the AK Rocker...when I do i will play my games just like Daddy!

Our little Drool monster!

Well hello ladies!

Although I do not go back to work officially until Dec. 1st. I went in for 8 hours on Thursday Nov. 18 to help out. I must say I was not too sad to leave my little guy for a couple of reasons...1. i knew i wasn't starting back full time. 2. I knew he was in good hands with Auntie Kris. and 3. I was too busy during the day at work, keeping my mind off missing him. All that said, I sure was glad to come home and snuggle with my little guy. Kris said that he was a good baby for the day. I think she really enjoyed her snuggle time with him as well! Thanks Auntie Kris for saving the day!

Super Nanny Kris and Mason talking about their fun day together!

Mason's 1st full day babysitter...Thanks Auntie Kris!

Not only was Thursday the 1st time I left him for the day to go to work, He also got to meet his Uncle Dave for the first time too! Dave Jr. is up from North Carolina to go hunting with Grandpa Dave. Mason will get to meet the rest of the North Carolina family on Wed when they fly in! It was so cute when Dave had cousin Brett on the phone and Brett says "love you baby Mason." Just melts my heart!

"You kinda look like my Daddy..."

Meeting Uncle Dave for the 1st time

awww

Until next time!

We finally have results...

After 50 days from the moment we found out Mason had CF we finally have a direction. The direction in which we take will be made more clear on Monday the 15th of November when we meet with the CF team again. But the genetic counselor called yesterday to tell me that Mason's blood we sent out to California back on 9.21.10 finally came back with the second gene mutation. So the two mutations Mason has are 3659delC and S1251N. Never thought in a million years that I would be looking at two "words" with jumbled up numbers and letters would mean so much for our little guy. Basically what it comes down to is that he is classified as a "classic CF" patient. He does not have a severe form nor does he have a mild form...he's in the middle somewhere. The S1251N is a "very rare mutation" so they do not know much about how it will affect Mason over the years. The genetic counselor was able to tell me a little of what the plan will be but am more interested to hear it from the doctor first hand on Monday.

I would be lying if I said my heart didn't sink back to the place it landed when I first heard the news. I was starting to allow myself to think those thoughts that some had started to express that "maybe there is no second gene and that is why it is taking so long" to be true. I hate that I allowed myself to think that because it just brought everything back to this painful reality again. I know in time everything is going to just be routine..."our normal", and it is starting to, but right now it just seems so unfair and makes me angry and sad. It makes me angry that I constantly have to sanitize myself before holding/touching him, wondering if I cleaned my hands well enough. I hate that I cringe when someone I don't know, or even those we do know, come up and get "too close" or touch him, wondering what type of bugs they might pass onto him, and that those bugs might hospitalize him (even though they would do nothing to you or I). I hate that I have to worry and ask others if they are ill, have recently been ill, or if they smoke before even thinking about handing him over for them to hold. I worry that they are not telling me the truth. I hate that we already had to cancel plans because someone there "might be ill". I hate that this will happen so many more times in the future. I could go on and on with my list of worries. The list that people will, no doubt, tell me not to worry about, but they are not in our shoes. These shoes I wish no one had to fill. I know that these feelings will lessen as time goes by because it will become "our normal." But that is the exact reason why we must stay vigilant to keep our son safe so that he can have as much time on this earth as possible and healthy time on top of that. This is why we will have to remind others for years to come because people will forget or will just not understand our actions. I have joined some forums where I read the parents, grandparents, and people with CF echo these thoughts and that seems to help to know we are not alone in this fight. I know we are not alone. They echo thoughts of the life long worries imposed by this disease. They also bring hope. The hope for Mason to live life. For him to live a full life that will expose him to all the world has to offer...germs and all.

So, now that I have unloaded that little piece of my conscious, Mason is waking up from his slumber on my chest in the Moby Wrap. I look into those gorgeous baby blues and those worries fade away for a little while. How can they not? He is a handsome, smiling, loving, and sometimes stubborn boy who we would not trade for the world. He is ours.

a bunch of "first's"

Happy to report that we most likely have a day care provider set up for M,W,F and working on T,R. After Wed. I will know for sure. He just might already know someone at daycare too...Lauren! To be honest, up until this point I really didn't think it was going to be that hard to send him to a daycare. Then yesterday it kinda set in and made me a little sad and nervous. We had talked about me staying home longer with him, but realize that I have to go back to work. The nice thing about my current position is that I will still have days to be with him it will just be a fluctuating schedule. I have to say that I am more nervous than sad just because I am worried about his health (i.e. germs/cold/flu, etc) being in such close quarters to other small children during this winter. Then with me working in healthcare i wonder what am I bring home to him? CF clinic told me that i should just take my shoes off before i go in the house and change my clothes before i hold him. Just another thing about CF that I need to tell myself that I can't control everything he is exposed to.

So this picture is NOT very flattering of me but I thought I would post it anyway. This just shows how Mia tries her hardest to cuddle with me when I am holding Mason.

This weekend Mason took his very first "big" trip to Eau Claire. In doing so, he had his first sleep over and visit to Grandma Pam's house. The trip up took us about 5 or so hours, not really sure why. Packing on Friday really did not go as planned. Mason really isn't too keen on keeping up with my schedule. So we ended up leaving the house about 7:15pm then stopping outside of Madison to get supper and feed the little guy. His first "dining out" experience was at Subway! As you can see below he enjoyed his first meal there! As expected he slept for 99% of the trip and I enjoyed a few z's as well!

"eating out" at Subway!

On Saturday we (Mason, Mommy, and Grandma Pam) headed to Onalaska to celebrate the upcoming birth of Mason's future 3rd cousin. We had a good time. Great Grandma Grace couldn't get up fast enough to meet her newest family addition. Everyone kept commenting on his cuteness and mommy couldn't help but smile real big. He was a trooper and was very alert for the majority of the time. I must say that I was a bit nervous to see how it was going to go because I really didn't know if anyone was sick. Everything went very well though and everyone was great at sanitizing there hands before holding him.

mommy got a lot of breaks this weekend with Grandma around

LOVE LOVE LOVE this picture!

I think I love this picture almost as much! Do you think Great Grandma Grace is proud? :)

Holding Great Grandma Grace's Hand...so precious!

Four Generations! You have no idea how long I have wanted a picture like this! Just makes me sooooo happy!

Great Grandma Grace with two of her Great Grandson's!

(Derek and Mason)

Celebrating with my cousin Amanda at her baby shower! Can't wait until Jan. to find out if the baby will wear pink or blue!

Three Generations

After the shower we went over to Amanda's house to see it and the nursery. We ended up staying a bit longer then planned but we had a good time visiting with family. My Uncle/Godfather, Jeff, came over to meet Mason as well. Because we were there for so long, Mason got his very first bottle of full formula. He didn't even seem to notice! Unfortuantly, because we were looking at the 770 pictures that are on the camera...my battery died and forgot the charger...so these next 5 pictures are from Grandma Pam's camera that she was nice enough to send my way!

Mason is really starting to show us his personality...

Posing for Grandma's Camera

visiting grandma is rough work! :)

Hanging out with Grandma Pam and Elmo...

On Monday (11.8.10) Mason was a bit more needy, we will say. He did not want to be put down and really fought going to sleep even though it was pretty obvious he wanted to. So we got a lot of snuggle time in yesterday while the housework waited. Derek was a HUGE help when he got home and picked up the whole house! (It got a little messy from Friday's attempt to pack for the trip) He had actually told me to leave it during the day and to rest when Mason did and he would worry about it when he got home from work. He is such a great guy, not sure what we did to deserve him!

The Moby Wrap has been my friend...

just lounging on my happy place! :)

I give mommy and daddy some really BIG smiles on the changing table. She just needs to be really quick with the camera...Notice that I am holding onto my football rattle? I have started holding onto them for longer periods of time now.

Got home from up north to find some animal wanting to carve our rotting pumpkins!

Last but not least, I came around the corner this morning and saw this! Mia has been VERY needy since we got back from the weekend (which she always was before), but she has been wanting to cuddle a little more and more with Mason...under our watchful eye!

Trick-or-Treat

It's gonna be a long post this week, since I haven't blogged in 7 days. I took Mason in on Wed for his weekly weight check. He gained 3oz this week. He is up to 10 pounds 15 ounces. So if we look at the combined two weeks he gained roughly 6 ounces a week...just under what they want to see, but the CF clinic is not going to change anything at this point. Looks like we no longer have to start him on Prevacid (at this point). With the info i provided to them on his "symptoms" they decided to wait on it, especially after we discussed that the insurance company would not cover it due to his age. Just knowing what will be coming down the pike for him, I would really like to keep him on the least amount of medication we can. He really has started to get into a sleeping routine, by allowing us to get about 5 hours rest at night. Overall, Mason continues to make us smile all the time since he has started to smile quite a bit. He also is doing a lot of "talking" these days. I just can't wait for the giggle! enjoy all the pictures!

We like to get on the surf board everyday and do a little surfing on our tummy! Mason has some really good neck strength and control already.

"peace"

I am so darn cute!

We are all smiles these days! Just makes whatever you are thinking about disappear! Lately Mason gives us the biggest smiles while on his changing table.

Just hangin' out in the Jungle...

up close and personal

Telling us a very animated story about the game

Mommy tried to do an impromptu photo-shoot because this outfit was so darn cute...This was the best picture we got....maybe next time... He just needs to learn that when mommy wants to do a photo-shoot he's gotta be ready! :)

Mia wanting in on that action

Grandma Kathy feeding me my enzymes...they were so tasty they blew my pants right off!

My Halloween Costume. Mom and Dad didn't get me in my costume on Halloween. We were going to go trick-or-treating with some of the Dinner Club but we got home a little late and I was hungry.

My Halloween Baskets 2010

The morning we were meeting up the Dinner Club to go to a pumpkin patch and petting zoo (on Halloween), I had gotten up and taken a shower. Mason was a little fussy so Derek was singing Twinkle Twinkle Little Star to him (the song usually calms him down within seconds). As I was getting into the shower i could hear Derek's signing slowing down...When I got out of the shower this is what I found in the living room! Ha! Derek was fast asleep and Mason was awake...at least the singing put one of them to sleep!

Ella, Lauren, and Breaden at the Petting Zoo...Sophia hadn't arrived yet.

Helping Breaden through the chicken coup which he loved

.

The little family on Mason's 1st Hay Ride!

We found a Big Wheels! Bring back memories!

This is how excited throughout the entire Petting Zoo Mason was!

We could take home as many pumpkins as we wanted as it was the last day of their season...as you can see there was a lot left rotting, but a lot were gone.

Snap #1

Snap #2

Snap #3...time to go home

Since we were in the area for the Pumpkin Patch, we surprised Grandma and Grandpa.

"Trick or Treat"

Watching the race with Grandpa

It was time to go home and Grandma Kathy tried getting my hat on...i now look like the "drunkest pumpkin in the patch." :)

Love those cheeks

never guess what he is smiling up at...the ceiling fan!

Becoming Fast Friends!

Reading with Daddy! Mason has really started looking at the books while you read to him and if he gets bored with that he just looks up at you and smiles.