Saturday, February 27, 2010

I wonder

playing3

Sometimes I wonder what is running through this little boys head. With Yo Gabba Gabba playing ad nauseum in the background most of the day, he finds finds and collects all his Gabba characters with the exception of Brobee because he is currently missing in action.

I really enjoy watching from a distance and observing Nathan at work when nobody is around and just wonder what he is thinking. His barn, also known as the parking garage for his matchbox cars or a house for his Gabba characters. I have also observed him hiding his treasures in the barn, most recently a metal ball he found.

playing2

Notice how he lined the matchbox cars perfectly and parked them all in the same direction. The things he does, oh how they make me smile.

playing4

Friday, February 26, 2010

We are still expecting...

...6 more inches of snow!!! Maybe we should clear the snow off our patio table before it collapses.

snow feb 2010

Thursday, February 25, 2010

A Snowstorm Saga

One winter morning a very tired pregnant lady and her family woke up to the sight of snow covered streets. Both mama and son were excited and relieved that the man of the house did not have to travel to work in the snowstorm. It was instantly deemed a lazy morning.

blizzard2

Nathan spent a few moments lounging on his beanbag chair with some good reading material before he realized that he wanted to subject his loving parents to hours upon hours of "gabba". Wouldn't it be really sad if mama and "Jay" could recite the words to several Yo Gabba Gabba episopes and have the songs stuck in their heads all day long? Wouldn't it be even sadder if Nathan calls to his daddy by his first name because he hears his mama doing it? Although it is still quite cute.

lounging2

Tired pregnant mama soon became cranky pregnant mama when the snowstorm was detaining her within the house and preventing her from getting some orange juice to fill her craving. If she didn't get her orange juice soon someone just may have had to lose his head.

Her dear husband decided to brave the roads on a journey to obtain orange juice in order to satisfy pregnancy cravings.

oj2

Of course what man goes to the supermarket and doesn't come home with a few extras.

cheese whiz2

The man of the house survived the snowstorm and his wife now sits eating the Cheez Whiz and crackers, that she made fun of her husband for purchasing. All is quiet as the little man naps on this very snowy afternoon.

Wednesday, February 24, 2010

Wordless Wednesday - Accomplice

An almost Wordless Wednesday.

Nathan, soaking up some vitamin D and showing off his gut.
belly

Being Briar's accomplice by digging through the recycling bin.
recycling

Just what Briar wanted, a plastic water bottle!
partners

Tuesday, February 23, 2010

Cayston: New Inhaled Antiobiotic for Cystic Fibrosis

Click here to read the entire article: CF Foundation Plays Important Role in Bringing New Inhaled Antibiotic Cayston to Patients

Isn't it so exciting? Cayston is now approved by the United States FDA to treat lung infections in Cystic Fibrosis patients. Our donations to the CF Foundation are helping!!!

This is such an important development for many reasons. Since lungs infections are the leading cause of death in CF, this new inhaled antibiotic is an alternative for those patients who develop resistance to the current antibiotics. It is not the the current antibiotics are useless but I would rather have an arsenal of antibiotics to use against the nasty bacteria that can reside in Nathan's lungs. I don't believe there have been any trials under the age of 7 so Nathan may not be able to utilize the drug immediately but it is very exciting nonetheless.
"Cayston is the first CF drug to advance — from beginning to end — through the Cystic Fibrosis Foundation’s Therapeutics Development Program, which is designed to speed the creation of new CF therapies."
This drug is helping to fight infections associated with CF but the CF Foundation is also using our donations to research the underlying cause of CF. Please donate ($1, $5, $50...whatever you can) to Team Nathan to help find a cure for this disease.



Monday, February 22, 2010

Megan's Musical Meal

Also known as Aunt Mae Mae's Vegetarian Chili.

megs veg chili

Ingredients

Morningstar Farms Recipe Crumbles
1 can black beans
1 can kidney beans
1 can diced tomatoes with jalepenos
1 package chili seasoning (McCormicks)
1 can great northern beans
1 can vegetarian baked beans
2 tablespoons hot sauce
Drain the beans with the exception of the baked beans and throw it all together. Heat on medium heat until it starts to boil, stirring occasionally so as to not let it burn. Serve with shredded cheese, sour cream, corn bread, or whatever you enjoy with your chili.

Sunday, February 21, 2010

Coming home today

Our weekend getaway has pretty much come and gone but we definitely enjoyed our time in Virginia. I have some photographs but will wait until we are back in New Jersey to put them up since I am tired. I've been staying up way later than I am used to and it is beginning to take its toll on me. We are leaving soon, after treatments. Needless to say I am not looking forward to the ride home.

Some of the windy Virginia roads wreaked havoc on my stomach last night but that is an entire story of its own. I don't think I will rehash that story right now but I am pretty sure you can imagine how it ended.

I would stay an extra day since I am so tired but Nathan is out of his medications and that is another long story.

Thursday morning, while packing for this trip to Virginia, I realized Jay never warned me we were almost out of Nathan's medications. Being that we were leaving for Virginia in a few hours and our pharmacy never keeps Nathan's medications in stock even though we fill them on a monthly basis, there was no way I could get a refill in time. This morning we are completely out of hypertonic saline but we may be able to get a few puffs of albuterol.

I called the clinic before we left and had them call the prescriptions into the pharmacy down here but apparently Nathan's New Jersey insurance will not cover prescriptions out of state. I was not prepared to pay over a hundred dollars for medications that should only cost ten dollars. I made Jay transfer the prescription back to our local pharmacy so hopefully we don't have to skip too many treatments.

So we are coming home today. We are bringing our little hive covered son back to NJ and maybe his pediatrician will decide to answer the on call phone. Just another eventful weekend for me, I am not too surprised at the events that have transpired. I had a great time regardless and can't wait to come back for another visit.

Friday, February 19, 2010

Chili, Treatments, Wrestling, Hives (not a cure for wrestling related skin conditions)

This post is a mish mash of sorts and as I referred to in parenthesis above I am not going to tell you how to use chili as a treatment for wrestling related hives.

Hives

First of all, Nathan has unexplainable hives. He had them since Wednesday and I have not an inkling where they came from. No new detergents. No new foods. I am stumped. He better not be developing an allergy to butter!

hives

He hasn't complained at all but I am annoyed and worried because I would like to know where they came from. I am really worried that they may begin to affect his breathing. His pediatrician, when we were in Thursday morning for his Synagis shot (RSV), said keep giving him Benadryl for 4 days. If that doesn't do the trick then he will prescribe an oral steroid.

So that is exactly what we have been doing. Hive...Benadryl...more hives...more Benadryl.

We made the drive down to Lexington, VA yesterday to spend the weekend with Jay's brother and sister in law. The drive was much more tolerable this time with the addition of the portable DVD player. Literally a lifesaver.

Treatments

With mommy and daddy tired from the 7 hour drive, Aunt Megan offered to lend a hand at treatments.

aunt megan neb and vest

She was a pro! And now I think I will take her up on the offer of taking care of Nathan for a week in August when I am ready to pop.

Chili

Isn't she the bestest? She also had a huge pot of her vegetarian chili waiting for us when we arrived last night. Unfortunately, I can't eat at night and expect it to stay down so I had my serving today for lunch.

megs veg chili

This is seriously my favorite chili and it may or may not be the reason I drove 7 hours to Virginia. I am going to try and get the recipe out of her so I can share. Delicious!

Wrestling

And tonight we will be watching the VMI wrestling team match up against Chattanooga. It's the last match of the regular season so it should be fun.

Wednesday, February 17, 2010

Not getting my hopes up.

You know how the mortgage company has been ringing my phone at the most inconvenient times, like 8:30 in the evening or smack in the middle of the Superbowl? Well we've been trying to call them too also at the wrong times, like on President's Day.

I know better than to get my hopes up, but Jay called again today and it seems like we may have an answer in two weeks. Apparently they have to "run a check on us", I don't know what that means but that is what my husband told me and they should be able to finalize a trial within two weeks. But still, I am not getting my hopes up. It would be nice to get some good news though.

Tuesday, February 16, 2010

Playing in the snow

Today I had the wonderful idea to take Nathan outside to play in the snow. And although he never really played, he did initially stand in the snow and look cute so I could snap this photo.

Snow-7a

Beautiful, right? I actually took a series of ten photos that all came out perfectly white. I wish I had been paying attention to the thumbnail preview because I would have realized they were all overexposed and I would have changed my settings immediately. Believe me, they were cute photos and I am slightly bummed.

Nathan did shuffle through the snow for a few minutes taking the tiniest steps I had ever seen. I am happy to have captured a small video clip of this. After putting my video camera back in my pocket and switching back to my camera I realized the white photo blunder.

At this point Nathan had pulled his mittens off and decided he was done with the snow. But first I wanted a chance to redeem myself. Unfortunately a meltdown ensued.

Snow-16

Now, as Nathan naps, I sit here chowing down on a pint of Ben & Jerry's Phish Food a little bummed that there is only one spoonful left. It would be so nice if it would replenish itself while I take a nap.

Monday, February 15, 2010

Synergy between Staphylococcus aureus and Pseudomonas aeruginosa

If you would like to read my original post about pseudomonas aeruginosa, click here. After receiving several questions regarding the treatment of Nathan's staph, I thought I would revisit the topic.

I am borrowing the following from the post I wrote July 8, 2009 to explain why Dr. A may not be treating the Staph at this moment, not to say that it won't be treated ever.

Why not treat the Staphylococcus aureus?
Dr. A treated the Staphylococcus aureus last time with oral Bactrim because Nathan was visibly ill, vomiting, coughing, etc. Since his lungs sounded healthy at his clinic visit and he appears healthy, he will remain untreated for now.

Synergy between Staphylococcus aureus and Pseudomonas aeruginosa?
There have been studies that have concluded the presence of Staphylococcus aureus decreases the rate of infection by Pseudomonas aeruginosa. Nathan's pediatric nurse K also explained this to me on the phone yesterday.


Just Staph

I've been playing phone tag with Dr. A regarding Nathan's sputum culture results. Today I called and spoke with a nurse who told me he only cultured staph this time so there is nothing to be worried about.

But I do still need to talk to Dr. A because he did express a concern of the possibility that the pseudomonas aeruginosa has already colonized in Nathan's lungs. I am not quite sure what comes next until I speak with Dr. A directly because I remember him speaking of bronchoscopies, starting Nathan on a permanent month on/month off TOBI regimen, or IV antibiotics. For now I will be satisfied with the good news of no pseudomonas.

Sunday, February 14, 2010

Love

Valentine's Day! It's all about love. We haven't done anything crazy today, in fact it has been a day like any other. Jay asked me what I wanted to do. I could have asked for anything but I kept it pretty simple. I told Jay that the perfect Valentine's Day would include him getting things done around the house, like hanging Nathan "big brother" photograph.

It also included a Dexter marathon. Like a friend said on Facebook, nothing says I Love You like a serial killer. I then discovered that Dexter (Michael C. Hall) is undergoing treatment for Hodgkin's lymphoma, a cancer of the lymphatic system. I was pretty shocked and extremely sad but apparently he is in remission.

Continuing on the topic of love, there is Eva. I am willing to bet most of the CF community is well aware of Eva's current condition but I wanted to share for my friends because this is something that has deeply impacted me. Eva has Cystic Fibrosis and has just announced that she will be dying in the next few days. In the end, all that really matters is love isn't it? Even after hearing the news that her life will soon be ended, Eva heart is filled with nothing but love.

She was also the subject of a documentary entitled 65_RedRoses that premiered in Canada's Vancouver Film Festival. If you would like to watch her goodbye on her blog, click here. It is a heart wrenching farewell. I have yet to finish the video. What an inspiration Eva's life has been and continues to be.

You can also watch Eva's expression of love here:


Also read "Beautiful final words of young New Westminster woman".

Saturday, February 13, 2010

Do you love it?

I DO!

Carla from Masto Mama Designs created my lovely new design and I couldn't love it any more. There are still a few things that may be changing of the course of the next several days but I love it now, I really do.

Thursday, February 11, 2010

Alphabitty Moments: The Letter "O"

This carnival was created by MamaBear from 4 the Love of Family as a way to record the little things kids do.

I am aware I skipped "N". Don't worry I will eventually think of something and complete that page. But in an effort to do the "letter of the week" I am publishing "O" today. "O is for Ocean". This photograph was taken this past August just before Nathan's first birthday in Myrtle Beach, SC.

Jay and I really enjoyed introducing Nathan to the ocean and the beach. I can't wait to go back to the ocean with my two guys.

Alphabitty O

To see my previous Alphabitty Moments posts, click here.

Cell phone to the rescue!

I've always relied on my school planner to remind me of appointments and other important events. Apparently now cell phones and smart phones are taking the place of paper calendars and appointment books.

The phone I am currently using is the LG Env2. I have had this phone since before Nathan was born and it came in quite handy during and after his birth when my husband was sending out mass text messages to notify friends and family. It is a great messaging phone.

I have made use of the calendar on the phone to keep track of certain appointments, but I still find myself showing up to appointments at the wrong time or on the wrong day. This is most likely because I neglect to enter appointment times - it takes more time to program a time into the phone so I usually just skip that step hoping my memory will save me.

I have definitely developed a mommy brain since having Nathan. I used to be so sharp, I still remember everything from before Nathan's birth - including my husband's social security number. Now ask me Nathan's social security number and I am stumped. At least I can still remember his name and birth day.

Usually if I want to remember something important, I send myself a text message or save a text message in draft format (like the grocery list) so I can easily update as I think of things to add. I can also send text messages to my friends when I am late, to confirm a meeting place , or tweet interesting to me tidbits throughout the day. And let me tell you the memory card filled with songs and videos is the perfect diversion for a fussy baby or toddler. In fact Nathan is the cause of much of the wear and tear on my LG Env2. In order to charge the battery I need to place a bunch of bananas on top of the charger to keep a constant pressure. He has also left evidence of teething all over my screen to the point where I can barely read the incoming messages and calls.

Of course I would love to get a smart phone through Verizon but cannot afford the data plan at the moment. I have been eligible for an upgrade for a few months but have been holding off trying to get the most out of my current phone before letting Nathan destroy a new phone. These phones seem to be built to self destruct. And with a new baby on the way, forget about it.

Again, I have been eligible for an upgrade for a few months and had my eye on the LG Env3 since it was the newer version of the phone I currently have. But guess what? As of sometime in January Verizon has made it mandatory to have a data plan with all smart phones and most multimedia phones including many of the popular messaging phones. This really stinks. Now my Env2 better not bite the dust because I will have to revert back to a crummy simple phone that will not meet my needs. Someone dropped the ball on that one and there is an uproar in my household as a result.

Verizon and JuiceBoxJungle sponsored me to write this post, and they asked me to talk about the ways my smart phone affects my life as a parent.

Wednesday, February 10, 2010

12 weeks pregnant (updated with photo)

Today, I am 12 weeks pregnant.

Baby Belly 12 weeks-5-2
I've learned just how dirty our bathroom mirror is.

I gave myself wicked razor burn which I will take any pregnant day over heart burn.

I am still nauseous every single evening but have high hopes that the fog of nausea will be lifted any day or week now. I've been eating waffles, eggs on toast, bagels with cream cheese, and peanut butter and jelly. These items are agreeable for me so long as they are eating before 4:30 pm. Milk is acceptable when combined with chocolate syrup or strawberry Quick-Mix, but preferably chocolate syrup.

I love my bed. I look forward to taking my socks of and laying on my flannel sheets every evening between 8:30 and 9:30 pm. Most nights I wake up sweating from those very flannel sheets I adore. The bladder is extra full when I am asleep but I have been refusing to get up in the middle of the night. Waking up is hard to do, I try to postpone this act until between 7:30 and 8:30 am.

I have yet to "pop" a baby belly, but my pouch is definitely getting pushed up. While I was pregnant with Nathan I really noticed a change in my belly at 16 weeks and after comparing my belly now to those photos, I am seeing some similarities. I am thinking it is about time to start taking belly photos.

In my spare time I am in the process of designing the official 2010 Team Nathan t-shirt as a fundraiser for the Great Strides Walk which will take place May 16th. Mark your calendars and join our team or donate by clicking here.

Being 12 weeks pregnant can be difficult at times, to learn more about it, please visit PregnancyCorner.com

Tuesday, February 9, 2010

I've decided...

...that Nathan needs another haircut.

nathan needs a haircut

His hair is not yet in his eyes but he most definitely has a tail growing in the back. I love this boy's innocence. You can see how he is ever so innocently not wreaking havoc of our living room {and stereo components} with a tripod. But I digress, I must get working on that haircut.

Also it is my brother Mark's birthday today. He just moved home from Colorado with his wife, Erika, and I am hoping to see them sooner rather than later. Happy Birthday Brother!

Monday, February 8, 2010

A little bit of this, a little bit of that.

Nathan's Vest treatments are still going great! I am slowly tweaking the settings until I get him to where he should be. We are up to 23 minutes with 30 as our goal. We will probably get there by this weekend. While I adjust the length I have also been adjusting the pressure and frequency. The vibrations are beginning to make my tummy itch. I fear I won't be able to tolerate him on my lap if I increase the frequency any more. And boy do I hope the new baby is enjoying all this shaking.

Nathan did not eat well today. I hope this isn't an indication of days to come. I want that big appetite back so I can continue to push the calories.

Other than that, I am really excited that Carla is redesigning my blog. It is looking great! But in order for her to finish it, I need to send her some new photographs. It's on my to-do list.

Update: I didn't realize until this morning that my post title was almost identical to Cindy's. She must have crept in and influenced me on a subconscious level. You can read her update about Reilly and her husband's CF screening here.

Sunday, February 7, 2010

We've got our Vest and we know how to use it!

Nathan's Vest arrived via FedEx while we were at Camp Iliff, climbing until all our energy was drained. I had planned to return home and have Nathan take a nice long afternoon nap.



He was so exhausted that he literally passed out in the car and remained in a sleepy slumber state as he was transferred from car to crib. I had spoken with the trainer from Hill-Rom earlier in the day who had requested I call her when we received the Vest. I called her and she wanted to come right away.

In less than an hour she arrived and wanted me to wake Nathan up so she could make sure the Vest fit properly. Nathan did not want to wake up and he wanted nothing to do with this new machine so he screamed until we put him back in his crib.

That evening we tried again. I consider this his 1st treatment with the Vest. He screamed for about 5 minutes but I am so used to him screaming 20 straight minutes through manual CPT so it didn't bother me much. I paused the treatment twice so I could give Nathan his two puffs of albuterol and then had Jay set up the nebulizer for the hypertonic saline. I had emailed back and forth to Jen that afternoon since her son Gavin had also just gotten his Vest and she told me her RT's advice - Don't make it an option. So we pushed onward and made it through 20 minutes of the Vest but I did use M&M's as bribery. He must have eaten an entire bag. Every time he would finish one M&M he would demand another "emma".

The following morning we skipped the M&M's and saved them as a last resort. Jay's parents were over and we all made a huge deal of the treatments dancing and singing to Yo Gabba Gabba. I have videos of this session but some of the moments may be embarrassing for the adults. I will dub these clips to music at a later date. He didn't cry once for session #2. Yippee! But he did get some M&M's afterward as a reward.

That evening was session #3, very uneventful. It seemed like their should've been more to it. I may have been caught saying "I love treatments!"

Today we finished session #4. Nathan is tolerating the new treatment very well and we are learning how to balance the nebulized medications at the same time. Here is a video from this treatment session. Sorry, it includes a booger scene.

Friday, February 5, 2010

We Climbed

Today, we climbed.

Nathan climbed and I followed two stories high.

Nathan Camp Iliff

And then we both slid down a two story high purple swirly slide. It was scarier than I thought it would be, but now he naps. Slowly but surely I am learning how to tire this boy out.

And while he is napping, I am waiting for a lady from Hill Rom to arrive at our house and train me on Nathan's brand spanking new Vest, which has arrived and is sitting in the box in our foyer.

Thursday, February 4, 2010

Diary of a Pregnant Mom

Today I am 11 weeks and 1 day pregnant. I stopped taking my prenatal vitamins weeks ago when they started coming back up. I started taking all my pills again this afternoon with lunch, the last meal of the day that I can happily enjoy. No problems so far.

Nathan seemed to really enjoy the free Kindermusik class we attended this morning. He even managed to make an escape in the bookstore while I was selecting a book for him. I chose Runaway Bunny. They have a 15 week session of Kindermusik classes beginning tomorrow but I can't justify the cost at the moment.

Since he decided not to nap this afternoon I brought him down and turned on some Yo Gabba Gabba and captured an adorably cute video of him dancing in his diaper. I am sure he is going to love the fact that I posted this video one day, but that's my right as a mom, right? Enjoy!



And while I was uploading the diaper dance video, FedEx came. I was so excited expecting the delivery man to be bringing Nathan's new vest to our front door. I even waited near the door. But then I opened the door to accept the package and noticed it was computer stuff my husband ordered. Tomorrow should definitely be the day!

Just Breathe

Not to get all mushy gushy on you, but I never really thought anything of this song until my husband said it made him cry. I am talking about Just Breathe by Pearl Jam. Now every single time this song comes on the radio I look back at Nathan and all his innocence sitting in his car seat and I get all worked up.

As far as I know this is a love song but everything about it from the title to the lyrics gets me thinking about Nathan and how precious his life is. Just Breathe. Yes, right now he is breathing well, his lungs are working for him, but I know it will not always be easy for him to breathe. We spend hours each day maintaining his lungs.

And I hear him upstairs not napping, playing in his crib and I hope that a cure will be found for CF in his lifetime. I don't want to say goodbye to that lil guy anytime soon. I don't think I will listen to the radio in the car anymore. Don't worry I am fine now, got that off my chest and am going to cherish every second I have with my energetic boy.

Wednesday, February 3, 2010

A bad session of treatments

This is what Nathan's face looks like after a bad session of treatments. Blotchy and red, my poor baby. He screamed and coughed and cried for about 30 minutes straight. Sometimes he just has a bad day and I guess today is one of them.

bad trx

Vest Update: After several nights of receiving but not answering calls from long distant numbers I decided to pick up and good thing I did because it was a representative from Hill Rom. They wanted to verify some of Nathan's medical information, our shipping information, and wanted to confirm that I understood my responsibilities (in terms of cost). Basically, they will bill the insurance company and if denied they would apply for an appeal. If the appeal gets denied then I can either ship the Vest back at no cost to us (NO WAY!) or apply for either a partial or full payment assistance program. I just said I understood and I will worry about that if and when the time comes. Vest should arrive on our doorstep via FedEx either tomorrow or Friday after which I will need to schedule someone to come train us.

Tuesday, February 2, 2010

I am not a web designer

I am not a web designer in any sense however I do enjoy fiddling around and have been busy, busy, busy trying to help two of my friends create a decent web page for their party planning business.

They helped me out during the darkest hours of planning Nathan's first birthday. I am sure everyone has been there before. You know, the place you eventually find yourself when planning a big party. I was overwhelmed with all the details and they helped me stay calm and helped me focus on what needed to get done and when.

So for that reason why wouldn't I want to help them out with something I am kinda good at. Not to mention they are friends and I would do pretty much anything for friends.

You can check out the website for Party Dreamzs by clicking the button below. Remember, it is still under construction.

Photobucket

Monday, February 1, 2010

Alphabitty Moments: The Letters "L" & "M"

Behind as always, but that's ok with me. I do things as I feel inspired and as I have time. Anyway a carnival created by MamaBear from 4 the Love of Family as a way to record the little things kids do.

So for the Letter "L" I chose Lexington, VA. The historic town where Jay's brother and sister in law live. This is our favorite spot for a "mini vacation". In fact, I think it is about time for another mini getaway! I will have to make arrangements. Nathan loves these visits, minus the long car ride.

Alphabitty L

For the Letter "M" ... Matchbox Cars. Nathan loves playing with his cars. It all started with a race car from a cereal box that I had been saving since I found out we were expecting. Then we got a white ambulance as a surprise extra inside another toy from a garage sale. Then I picked up the Jeep and the orange Chevy at the supermarket. The accumulation as cars continues pretty much on a daily basis. He plays with his cars all by himself at his table or with his daddy. Above all, he loves to use his barn as a parking garage.

Alphabitty M