Thursday, April 30, 2009

Swamp Thing

Nathan's lungs, that is. Dark and swampy with mucous and bacteria.

Do you remember how Nathan was treated with inhaled antibiotic the entire month of February because he cultured positive for pseudomonas aeruginosa during his January visit?

Do you also remember how I had to cancel his April appointment because of health insurance fiasco? Well it was during that appointment that he was supposed to be re cultured to determine if the treatment was effective at eradicating the bacteria in his lungs.

You may have noticed that the frequency of Nathan's coughing has increased during the month of April . I have noticed this. This coughing has been accompanied by vomiting at least twice a week. The progression is usually cough. gulp. cough. big gulp. gag. brace for impact. vomit.

My first thoughts. Seasonal allergies? Post nasal drip?

Today I received a phone call from the nurse, most likely because I canceled last month's appointment. She wanted to see how Nathan has been doing recently. I mentioned the above and she suggested that I try a saline nasal spray to clear his nasal passages, if he would allow it. Ha! That might happen. I mean I will give it a try, but can you tell I am not that optimistic?

I also mentioned how the insurance would become effective May 1st and that I would make an appointment as soon as I obtained the referral. Yes, I now have to deal with referrals. Ugh.

A short while later she called back to let me know Nathan's specialist was concerned about his cough and the duration of it primarily because he was not cultured since he was previously treated with antibiotics.

In short, if I do not obtain the referral and see his specialist next week he will prescribe another month of TOBI (antibiotic).

I will not get my hopes up. I am just going to assume that I will be spending an additional 60 minutes each day (30 minutes in the morning and 30 minutes in the evening) administering TOBI in Nathan's nebulizer.

I hate TOBI with a passion and I also love TOBI. I hate it because it drains the life out of me trying to fit these treatments into my already jam packed schedule but I love it because it is so darn effective at what it does.

Wednesday, April 29, 2009

Splish Splash

This little boy sure does keep me busy.

We began our morning by watching Your Baby Can Read DVD's. Nathan now likes to learn to read while standing with the assistance of the Tupperware containers. My makeshift way of attempting to keep him away from the stereo components. Currently successful. For how long? Not sure.

Please excuse the mess sometimes referred to as our home. Like I said. This little boy sure does keep me busy. And yes, I am aware that I have become really lazy by letting the little peanut lounge around the house in nothing but a t shirt and a diaper.

A short while later after making a mess getting into things that he shouldn't be playing, I decided to get started on his treatments. All ready to go, I hit repeat play on his favorite Baby Einstein DVD Baby Einstein Baby Neptune, which his Great Aunt Gloria sent him all the way from Florida. The reason I emphasize "repeat" is because it is the crucial step that I will come to regret shortly.

Nathan was completely passed out the perfect little angel for the duration of both his nebulizer and chest percussion (CPT) treatments.
45 minutes later he was still snoring and drooling on my lap.
45 minutes later I was still the only one watching Baby Neptune. Over and over. With no means of turning off or lowering volume. Wake a sleeping baby? Never! So I sat and watched Baby Neptune and waited. Watched some more Baby Neptune and waited some more.

And he awakes! I quickly jump at the opportunity to turn of the DVD.
9:30 am. This little boy sure does keep me busy.

Then to occupy more time, we went for a swim in the big tub.

By noon, Nathan I was ready for a nap. This endeavor is way too much for me to type tonight. I have little energy at the moment, Nathan is full of energy, and I would like to spend what little energy I have remaining with my husband. Stay tuned for Part 2.

Nathan's Fight
Our team goal percentage raised to date 80%
Team fund-raising goal: $1,500.00
Money raised to date: $1,200.00

The walk is May 3rd.
There is still time to donate.
There is still time to reach our goal.
Thank you for contributing.
Help make CF stand for Cure Found!!

Tuesday, April 28, 2009

It's a Jeep thing...

For all you few doubters out there, the combination of a windy Jeep and sweat can create a faux hawk. See evidence below and please excuse blurry, grainy, overexposed cell phone picture.

Oink Oink Flu & CF Son

The flu in general can be manifested much worse in individuals with Cystic Fibrosis and with the the recent panic over the swine flu outbreak, I thought I would look into how it could impact Nathan, my CF son.

Swine influenza (Oink Oink Flu) is a respiratory disease of pigs caused by the influenza (type A) virus. While humans do not normally get the Swine Flu, infections can occur and are occurring. Similar to the seasonal flu that we are all quite familiar with, swine flu may cause a worsening of chronic medical conditions such as Cystic Fibrosis.

The symptoms of swine flu are similar to the symptoms of the seasonal flu (fever, chills, coughing, aching, fatigue, etc).

The swine flu virus is considered highly contagious and spreads just like the seasonal flu virus. It spreads through direct contact when an infected person coughs, sneezes, touches a surface that others then use.

Basically, the swine flu is of equal concern to me as the seasonal flu. Infection could be devastating to Nathan's current health condition.

Whereas the seasonal flu viruses typically infects individuals seasonally (from the fall through the winter), the swine flu is being spread now! I will not be letting my guard down any time soon so do not feel offended if I choose not to be around you with my CF son if you are possibly at risk (coughing, sneezing, etc).

Click here to see the swine flu on Google Maps.

Monday, April 27, 2009

Brush, brush, brush your teeth!

As told by Nathan:

Yes, I know my face is dirty
but I can make dirty look adorable.

Yes, I also know that this is dada's toothbrush
but it matches my outfit so now it's mine.

Sunday, April 26, 2009

Happy 8 Months, Nathan!!

Our little fishy turned 8 months old yesterday. I took him swimming for the first time. Nathan put the smiles and giggles on hold until he was able to examine the situation thoroughly. This is as serious as he gets.

Here he is wondering what the heck this whole swimming thing is all about. "Why is everyone taking my bath with me?"

Here he is helping out in the garden. He decided that one particular flower did not belong and ripped it out by the roots.

"Hmm, this similar to dirt? Can I eat this too??"

Mainstreet 5K Festival

Here is a photo recap of Sparta's Mainstreet 5K Festival and Business Expo which occurred yesterday. The event was held to benefit the Juvenile Diabetes Research Foundation.

Here our team is getting ready for the race. I am attaching the time chip to my shoelaces.

Mama and Dada getting our little big 8 month old situated for the race.

...and we are off!

...the end in sight!

Check the time. I finished 36:48. Not a wonderful personal time but considering the circumstances I am thrilled. Not to make excuses BUT the jogging stroller really gives your shoulders a fantastic workout AND the second water checkpoint was off the road. This meant I had to go off-roading with the jogging stroller, apply the brake, and then grab my water. Unlike the first water checkpoint where I did not even have to slow down to grab the water.

More of the clan approaching the finish line.

Relaxing in the new Fieldhouse. Jay did not hang around for the remainder of the events because he had prior obligations.

Nathan's very own gigantic stuffed animal. Can you see the excitement?

Each time the mascot from the Sussex Skyhawks would walk away Nathan would want to follow. Here is the second time he came back.

Do you think Jay should get a mascot costume to dress up in for Nathan?

Yes, this 8 month old drinks from a regular water bottle.

Absolutely exhausted from the 5K and Ihop.

Friday, April 24, 2009

"Nebulizer Made Simple" by Lil' Mama

Seriously, Lil' Mama make Nathan's nebulizer treatment look like a piece of cake.

Now I know it may appear that I am not being 100% truthful when it comes to Nathan's behavior during his treatments but that is because I am only able to take the pictures when he is practically comatose calm. He normally screams, flails his arms/legs, backhands me, and chews the silicon mask acts up.

neb made simple

Thursday, April 23, 2009

there is still time

GREAT STRIDES for Cystic Fibrosis

I would like to thank everyone who has already contributed to the GREAT STRIDES campaign for CF. As a team, we have raised 70% of our goal ($1,500).

Remember, the GREAT STRIDES walk for CF at Bradley Beach is less than two weeks away on May 3rd. There is still time to join our team and walk with us or you can make a contribution .

If you do not want to donate online with a credit card you can also write a check payable to "Cystic Fibrosis Foundation" with a memo that includes "Bradley Beach" and "Team Nathan's Fight". You can mail your check to the following address:
Cystic Fibrosis Foundation
Greater New Jersey Chapter
2 University Plaza
Suite 312
Hackensack, NJ 07601
Any amount you can contribute to CF Research would be appreciated. Help make CF stand for Cure Found!!

Nathan's CF T-Shirt

I placed the order for the t-shirts yesterday and they should be completed by the end of next week. I did order several extra shirts so if you are still interested please contact me for more information regarding sizes remaining.

Wednesday, April 22, 2009

Wordless Wednesday: can't fight it

i feel good

This morning might be the best one I have had in some time now.

Yesterday I ran the entire length of the 5K that I will be running on Saturday. It was the first time in over a year that I have attempted to run the 3.5 miles. So now I know I can still do it, I will not collapse during the race.

Now the only other variable for Saturday's race will be the jogging stroller, which I have only ran a mile and a half with. Believe it or not it makes running much more difficult. I never thought running would work my arms and shoulders this much. If anyone needs to focus on these areas I would highly recommend getting a jogging stroller and running with a baby or a couple of sacks of flour.

Another reason why I feel like I am in good spirits this morning is the amount of sleep I got last night. Yes, Nathan ate at 10 pm last night and woke up at 5:30 am. Some much needed relief from his waking up at 12 midnight and 3:00 am to eat. He has been annoyed with the bottle recently and has not been eating very well so today I will be making him some more baby food to spoon feed (sneaking in the extra calories here and there so his weight does not level off).

I was extremely frustrated yesterday trying to get Nathan to eat. He needs to be constantly eating a lot of calories because of his Cystic Fibrosis. He also needs to take enzymes every time he eats (normally one enzyme every 3 ounces). When he eat only a half an ounce at a time and I keep giving him enzymes, problems arise. His digestive tract could become irritated by consuming more enzymes than there is a need for.

Ultimately I have been giving Nathan an enzyme every 20 minutes in an attempt to get him to eat a minuscule amount, not knowing what is better and what is worse. Do I feed him little bits all day long with many enzymes possibly irritating his digestive tract? Or do I let him not eat, which is what he wants to do, with the risk of him not gaining weight, losing weight, or slowing the development of his organs (lungs, pancreas)? Choices.

Anyway back to feeling good. I will be meeting some co-workers for lunch today. Very excited to get out of the house with Nathan and see some friends.

Tuesday, April 21, 2009

scrapblog revisited

My friend, Jessica M., created a scrapblog of Nathan for us back in September when he was 2 weeks old.

I absolutely loved it when I first saw it and I love it even more now. It is amazing how much he has grown in 8 months. For those of you who have not seen this yet, Enjoy!.

I love my friends and I love my lil fella.

Now if I could only figure out how to save this on my computer and record it on DVD for Nathan. Hmm.

Monday, April 20, 2009

Remember when...

...the nebulizer treatments could be done while Nathan slept peacefully in his swing?

Here he is at 2 months

at 3 months

and at 4 months

and here on my lap at 2 months

Should I post another picture now at 8 months? I think I would need an additional 6 arms. 2 to hold the nebulizer, 3 to hold Nathan in place, 2 to operate the camera, and 1 to operate the DVD.

UPDATE: Here he is participating at 7 months. Just found this picture on my cell phone. He is actually using the silicon mask as a teether.

Sunday, April 19, 2009

Sword of the Spirit

So I bet you remember when I wrote this post. The one where Jay and I decided to read the Bible in one year. It was working. The keyword in that sentence is was. Our original plan worked for about one week.

We had a really good system where I would read the passages aloud while Jay held Nathan's nebulizer in the evening. Then we got one day behind and could not seem to catch up. This led to discouragement which in turn led to failure. The Book got placed aside and we gave up, focusing instead on surviving the exhaustion of completing Nathan's CF treatments.

Now that the weather has been nicer and most the germs have gone into hibernation (or so we think) Jay and I have been taking Nathan to church again. And we made it on time, for the second week in a row! Yes, I know, it is amazing. Today the pastor spoke right to us, focusing on Hebrews 4:12:

For the word of God is living and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart. Hebrews 4:12

Basically the word of God penetrates to the deepest place in our lives and assesses what is there. It is the food for our soul. It is able to feed us, sustain us, and give us eternal life. What is written can will enter a our heart and change what is there whether change is desired or not. The Bible is not entirely about creating warm fuzzies inside. In fact, the Bible will often convict and create cold pricklies.

Now I would like to amend the original plan, the plan to read the entire Bible in one year. Instead, I will begin reading as much as I can every evening during Nathan's nebulizer treatment. And if Nathan is having a screaming fit, a fit of "get this silicon mask away from my face" and a fit of "stop pounding my chest, sides, and back" (like he often does), then I will not read at all. I will not try to catch up the following day. I will just continue where I left off and read only as much as I can.

I am not perfect and I cannot make things perfect around me. Normally I like to have a plan, a plan that would ideally be followed precisely. Now that life has become much more complicated I must learn to be flexible. Ultimately, it is NP and CF* that determine what happens each day of my life.

*Nathan Parker and Cystic Fibrosis

Saturday, April 18, 2009

Crawling Critter Craves Climbing Chairs Stairs

Today was yet another day of firsts!

First time grabbing a clump of dirt and shoving it into mouth.

First time eating said dirt...and seemingly enjoying it.

First time climbing up the stairs on own.

Now we are in for it...Trouble!

Friday, April 17, 2009

It's a beautiful day...Don't let it get away!

What a beautiful day...and two days in a row!! Therefore I am in a fabulous mood. I am sure others can attest to the fact that the weather has the ability to determine mood as well.

It seems like every good day is followed by at least two lousy days, doesn't it? Judging by next weeks weather forecast we will be paying drastically for this good weather. 4 days of showers! How will I ever survive?

So we had to take advantage of this nice weather while it was here and there was no way that Nathan and I could have spent this day indoors. Indoors? No way!! It would be a sin. So instead we went to visit Dingman's Falls. It was his first time experiencing flowing water of this magnitude. He showed his delight and approval by grunting the entire time.

Thursday, April 16, 2009

"G is for Gerber Puffs"

that's good enough for Nathan, who apparently really enjoys his Puffs these days. So much that he prefers to shove them into his mouth by the handful. Needless to say some make it and some do not.

Does Nathan remind anyone else of a particular furry, blue monster?

Last call for CF T-Shirt

UPDATE: Orders can still be placed until Monday because I am still adjusting a few things with the screen printer.

Last chance to support Nathan and purchase the 2009 Nathan's Fight CF T-Shirt.

I am submitting the order tomorrow providing that the screen printer is not on spring break this week. If they are, I will submit on Monday.

I may order a few extra. It depends on how close the final count is to the next price category. Does that make sense? Anyway, thank you to everyone for supporting Nathan, his mother he is really excited about getting the Vest in the future.

Tuesday, April 14, 2009

Pill Popping Peanut

Yes, you read that correctly, Nathan Parker is our Pill Popping Peanut.

Nathan takes pills (enzymes) to help him gain weight. Even though he consumes more than enough calories he still has trouble gaining weight because of how Cystic Fibrosis affects his pancreas. The pancreas, which normally produces digestive enzymes, cannot deliver the enzymes that are needed to break down the protein and fat in food.

Since the proteins and fats are not digested, they are not getting absorbed into his body. Instead, these are being passed through Nathan's digestive system creating more frequent bowel movements. OK, poop, there I said it. And stinky, greasy poop too!

This is the reason why Nathan takes enzymes with his meals. The capsules contain the enzymes produces by the pancreas (lipase - for fat, protease - for protein, amylase - for carbohydrates).

The number of enzymes he takes depends on two factors:

  1. How much he eats. The more he eats the more enzymes he must take.
  2. How long he takes to eat. One enzyme capsule is only effective for twenty minutes.
I also must pay close attention to his poop. If it is extremely smelly and greasy then I know he probably did not take enough enzymes.

Eventually he will learn to swallow the capsules whole. But for now I open the capsules and pour the contents onto an acidic food, such as applesauce. After he eats I must check to make sure that there are no enzymes hiding in his mouth because they could irritate the oral mucosa (cause sores in his mouth).

Monday, April 13, 2009

Nathan's Very First Easter Portraits

Here they are!

At 7 months and 1 week old, Nathan was a big ole ham in front of the camera. He was showing off his sitting skills, his standing skills, and his big toothy grin. He even tried to show off by jamming a giant Easter egg into his mouth but Yuck! I am sure every baby has had these props in their mouth.