Tuesday, May 31, 2011

I really love sunshine

Thank you all for your support and suggestions on my previous post. I haven't given up the food battle but I have decided that when it comes to Nathan eating I do NOT want it to be a battle. I will simply continue offering food to Nathan.

I guess the fact that my mood ebbs and flows frequently and often predictably is a good thing, it makes me normal. If I were happy, carefree, and optimistic all the time it would be awesome but it would be weird, not normal. But let me tell you, sunshine does wonders for my mood. It is so much easier to put a smile on my face when I wake up to sunshine. I love that I can wear my flip flops without my feet getting soaked by down-pouring rain.

Despite the obstacles I faced last week, my desperation over Nathan not eating and the culture results of MRSA and Pseudomonas, I am having a very good week thus far. We really enjoyed Memorial Day 2011. Nathan does not understand what Memorial Day means and I think he is still too young to even try to explain. But he did have a great time with some of his friends. The weather couldn't have been more perfect.

It was hot! But we found a nice shady spot on the lawn to play and keep cool.

Teagan Memorial Day

Nathan Memorial Day

Saturday, May 28, 2011

Desperation

I've pretty much tried it all when it comes to getting Nathan to eat solid food.  I wrote it off as him being a toddler, a picky eater, having a strong will, etc.  But bottom line is - he won't eat.  As soon as I say I've found a solution,{like nutritious cookies, fattening smoothies, high calorie yogurt, sneaky pancakes, coconut oil, avocado oil, withholding bottles, you name it I've probably tried it} it stops working.  I am jinxing myself it seems, although I don't really believe that stuff.

A scientist's work, I mean a mother's work is never done.  Even though he was eating up a storm, more like grazing, in Florida, he is back to eating nothing in New Jersey.  One day he slurps down a fattening, high calorie smoothie and the next day he won't touch it.  Today he has had nothing at all.  We've withheld his bottles of Pediasure with the hopes that he would get hungry and eat a pancake, which he normally, or sometimes, loves.

We are doing all the wrong things when it comes to feeding our picky eater. 

Bribery - eat this and we will give/let you do that. 

Forcing foods - you can't get up until you eat one bite of this, eat it!  The more we tell him to eat something, the more he refuses.

Offering one meal - we knew he would eat pancakes so that is what we mostly offered.  Now his menu only has one, or should I say less than one item on it since he won't even eat pancakes anymore.

Short order cook - he has had me whipping him up this or that on a whim just to refuse it after I had gone through all the work of making it.

Snacking/juice - I've basically eliminated juice/soda from his diet since it is just filling him up and satisfying hunger in between meals.  He doesn't need the extra sugar or caffeine.  What I do give him still is seltzer or very diluted juice.

TV/toys - distractions, I know, but it is difficult to eliminate these distractions when every square foot of the house is covered in toys.

Getting stressed - It's what I do best.  I try to manage my anxiety at the table because I know Nathan picks up on it instantly.  He knows my husband and I are desparate for him to eat.

I am about ready to give up.  Especially with his recent culture results of MRSA and pseudomonas, I have just had it.  I think I will just continue to give him Pediasure around the clock and since I know he loves juice so much, I am going to buy a juicer and give him his veggies that way.  Maybe I can someday add some pulverized meat as well.  Oh you see that, I've just come up with another solution that probably won't work, or may only work for a day.  {sigh}

Friday, May 27, 2011

MRSA and Pseudomonas

Happy Friday and Happy Memorial Day Weekend to us!! Isn't that just wonderful news (sarcasm) that Nathan cultured not only his usual Pseudomonas aeruginosa but also MRSA for the first time. So much for those IV antibiotics. He is going on one month inhaled tobramycin (TOBI) and 21 days oral Cipro. Oh, and also must begin probiotics in anticipation of what is to come. It also looks like we are just going to begin an every other month, 28 days on 28 days off, regime of TOBI.

So this is mostly for my own sanity, Nathan's current medication list:
Iron , 1 ml taken with vit. C
Creon 6, 1 capsule/3 g. fat
Vitamax, 2 ml daily
Xopenex, 2 puffs 2x-4x daily
Hypertonic Saline 7%, 2x daily, via neb
Pulmozyme, 1x daily, via neb
Zithromax, 6 ml M, W, F
Zrytex, 2.5 ml daily
Prevacid 15mg daily

TOBI 2x daily for 28 days, via neb
Cipro 2x daily for 21 days

Vest 30 minutes, 2x daily-3x daily

Wednesday, May 25, 2011

High calorie, high fat, high protein BERRY SMOOTHIE

Two days ago I made myself a low calorie, low fat berry smoothie using fat free Greek yogurt, skim milk, frozen blueberries, frozen strawberries, and honey. It was delicious. I asked if Nathan wanted to taste it and not only did he taste it but he sucked down half a cup through a straw.

So this had me thinking that it would be the perfect way to pack some fat (and a good amount of protein) into his diet still primarily consisting of liquid pediasure. While at the grocery store I bought some 10% milk fat Greek yogurt.  Greek yogurt has tons of fat and protein, if you buy the fattening kind I am talking 23 grams of fat per cup.  That's pretty incredible.  When combined in a blender with some of the other staples I keep in my fridge/freezer/cabinet (heavy cream, whole milk, frozen blueberries, frozen strawberries, honey) it makes a pretty rocking (and extremely fattening) smoothie.

high calorie smoothie - 01

I was so worried that once I packed the smoothie full of calories and fat Nathan would refuse it, but he didn't!  He helped me make the mess, I mean smoothie. (He seems to enjoy helping me make things, messes clearly don't bother me, the sponge soaked up the whole milk that didn't quite make it into the blender with the other ingredients).

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I've also noticed that the bigger the straw is, the more he ultimately eats.  If he is going to only take a few sips of something at least he will get more volume per sip.  Big straws are a great tool.  He sometimes even sucks his enzymes up these large straws but that is a work in progress.

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And two large straws/cups are even better than one, except when Nathan originally poured the second cup for me.  CFer's need the extra calories/fat, I do NOT!  Luckily though he took it away and drank from both.

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Sunday, May 22, 2011

She is almost walking

Most have already seen this on facebook, but here is a video my husband took at the CF clinic on Wednesday of Teagan walking assisted by a stool. I was in the room with Nathan and the doctor and Teagan and Jay were playing in the waiting room for the sake of everyone's sanity. It is really difficult for two energetic kids and two adults to be cramped up in the small room for a sometimes lengthy clinic visit.

So here she is at 8 and a half months old.

Saturday, May 21, 2011

New blog design

I'm working on tweaking a new blog design, you know because I get bored rather easily. The html, css, php, or whatever it is actually called is a bit more difficult to make changes to now that I have switched from Blogger to Wordpress.

I figured the best and easiest thing for me to do for now would be to find a free wordpress theme that I see potential in and customize it from there.

And since free time is basically a nonexistent word in my dictionary, it will be a work in progress. I can live with the way it looks for now.

If the sun decides to shine tomorrow and dry up the soggy ground I will have an engagement photo shoot and get this Tuesday I will be photographing twins about Teagan's age!!!!!!

Friday, May 20, 2011

CF Clinic | May 18, 2011

It was a routine visit but only his 2nd visit with his new center so I am still figuring everything out.  I am familiar to the route to Robert Wood Johnson Hospital because it is in New Brunswick and I graduated from Rutgers.  But there are a ton of other factors including trying to judge morning traffic on several of the known horrible highways (in terms of accidents and traffic).  The appointment was for 11 am and leaving the house at 9 am got us there just in the nick of time.  Next time I think we will leave 2.5 hours before our appointment.

We were supposed to stop at the lab located next to the parking deck for a quick chest xray before heading across the street for Nathan's appointment but that lab wouldn't cooperate with Nathan's insurance and we would have to make an appointment at the radiology lab located within the hospital itself.  This will be his first chest xray post hospital admission, not that I have possession of the pre hospital admission chest xray aside from a photo of it displayed on a computer screen on my cell phone.  .

Luckily the RT managed to make a same day appointment for the chest xray so we could get that done right after his clinic visit, saving us a long trip back at a later date.

The visit itself went well.  Nathan appears to suffer from allergies, red puffy/itchy eyes and an itchy nose.  Being that his records still have yet to be transferred, we decided to repeat Nathan's annual blood work along with a panel of allergy tests just so his new doctor would be up to date with whats going on.

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It was a lot of blood to be drawn from a little boy and the people at the lab who draw the blood, what do you call them phlebotomists, were more worried than I was.  I wasn't worried because sadly he is getting used to being pricked and prodded and during his last hospital admission he didn't even notice them taking his blood at one point.  I am getting pretty good at distracting him.

At the hospital he played Fruit Ninja on the hospital's iPad and he barely realized they poked him.  Luckily they have released Fruit Ninja for the android operating system because we do not have the money to be buying an iPad for the sole purpose of disctracting Nathan during blood draws.

The phlebotomist (that's a silly word) couldn't believe how he just sat there.  CF kids are pretty amazing people.  When she was finished, she gave him his choice of Clifford stickers and he said he wanted "all of them".  So that's exactly what he got.

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That, and a ton of jelly beans. And, wouldn't you know he was proud of his new "boo boo" located right below the scar of his old picc line boo boo.  He wouldn't let me remove the bandage until it fell off in the bath tub that evening.
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The only changes we are making to his medications since the supply of mucomyst is very limited at the moment is the addition of zyrtec once a day and starting xopenex instead of albuterol (once the insurance company gives their approval of course).

Thursday, May 19, 2011

Disney World with Special Needs

I've been pretty annoyed that I can't find my Disney PhotoPass from our second day at Magic Kingdom in Disney World.  After our week long trip to Fort Lauderdale, we hit up Magic Kingdom again courtesy of my father.  Even though I took an obscene amount of photos with my own camera, I did carry Disney's PhotoPass Card with the intention of getting a good photo of our family in front of Cinderella's Castle on Main Street.  I didn't trust a stranger with my camera and not many people know how to use my camera anyway.

I figured it was mother's day and the one thing I really wanted was a family photo in front of the castle.  And now, I can't find my PhotoPass card anywhere!!!

It's has been making me really sad so I googled "lost disney world photo pass" and I found a page with a form that you can provide all the details including visit date, age and gender of guests, locations photos were taken, characters in the photos, description of the guests attire/appearance/clothing, and you can even upload an image from that day to help them locate your missing photos.  I hope they find our Disney photos.

The other thing I wanted to mention that I would never have known about until a more experienced CF mom shared her knowledge with me is that Disney World is very good at making accomodation for people/children with special needs.  Accessing the services avaiilable for special needs guests is really not difficult but you need to be prepared before taking your Disney vacation.  Again, another CF mom gave me this information.

Before vacation I requested a letter from Nathan's pulmonologist stating his (Cystic Fibrosis) diagnosis.  The letter was quite simple, it stated his age, that he had a life threatening chronic illness, a description of the illness and the bodily systems affected.

We only went to Magic Kingdom so I don't know where you go in the other parks to obtain special services geared towards guests with disabilities.  But after entering Magic Kingdom you take your letter to City Hall which is on the left as you walk toward Main Street USA.  Walk up to the desk and tell them your child has a chronic illness and show them the letter.  They will then provide a special pass that will shorten or eliminate wait time at all four of the Disney Parks.

Since we also had a stroller we requested another tag for the stroller that would allow us to use it as a wheelchair and bring it on the lines with us.  Nathan did not sit in the stroller the entire time but being so hot in Florida, dehydration was a huge concern.  The stroller was a necessity.  The special pass also lets you enter the rides through an alternative entrance, just flash the card to the cast member at the ride entrance and they are super helpful.

Of course I would rather wait in every single long line if it meant I didn't have to deal with Cystic Fibrosis but since that cannot be changed I may as well make sure Nathan got the most out of his Disney World experience.

Wednesday, May 18, 2011

Swimming in the rain

There is nothing quite like making the most of a rainy day. Coming home from sunny Florida and greeted with what seems to be a two week long forecast of rain, thunderstorms, and flooding in New Jersey is nothing to lift the spirits. Nathan has way too much energy and I myself am beginning to get cabin fever.

Nathan is the master of unlocking and opening pretty much any door in our house including our glass sliding door. He has yet to master the wooden gate on our deck. I am very happy that my father in law installed the latch facing out and not to mention it is even difficult for me to open the latch because the gate is putting pressure on it.

baby pool - 0001

So this little master mind basically lets himself in and out of the house onto the deck whenever he pleases. He sure is teaching his little sister all his tricks while she is at a young age.

He has been dying to go swimming ever since learning to swim (while wearing his Spongebob swimmies) in Florida.  Unfortunately, I don't think he will ever find a pool quite as warm as his Aunt Gloria and Uncle Ray's pool.  But he knows how to make the most of what he has even if it means swimming in a cold rain water filled baby pool or running through and splashing in puddles.

At Nathan's request Teagan even got in on the fun.

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And a few things to accompany the photos:

Nathan rarely wears pants around the house. I do put them on him but they never seem to stay on for three reasons. One, he loves to take them off. Two, they seem to fall right off his skinny little waist. And three, we often forget to put them back on after diaper changes.

Both kids have been wearing disposable diapers for about a month.  I've been overwhelmed with life and laundry and needed a break.  But now that I have had a break it is time return the favor and give our wallets and the landfill a break from using the disposables.  Will be back to cloth shortly.

Teagan doesn't match and almost never does. I wasn't and still am not known for my sense of fashion (I will never live down the time(s) I wore red cowboy boots with my sweatpants tucked in as a little girl). Fashion/matching is just not the highest on my list of priorities. If it's important I will usually just consult one of my very fashionable friends.

Teagan has food on her face. She pretty much hates eating baby food purees and gives me a hard time by avoiding the spoon (although she does love Greek yogurt). Oops, I forgot to clean her face, must've been distracted by Nathan filling a sand bucket with rain water on the deck and bringing it back in the house and dumping it on the wood floor.

Teagan also loves standing up and squatting back down repeatedly and makes some pretty memorable facial expressions while doing so. I've seen some expressions resembling Tarzan and others resembling Elvis. I just love them all.

I also have some CF updates and an exciting fundraiser coming up but I will save the for tomorrow. We left the house at 9 am for Nathan's routine clinic visit today and did not get home until 5 pm. I am a little exhausted.

baby pool - 007

Sunday, May 15, 2011

Coming home

Why does coming home from vacation have to be so difficult? When we first returned, I was thrilled to be home. Happy to be "home" and no longer on a plain, bus, monorail, or packed like sardines in a car with suitcases.

Our cats were happy to see us even though they were well cared for by our parents.

Stuck in the moment of finally being home, the mess didn't even bother me. I almost felt like saying or maybe I even did say, "I love our home, even with the mess."

I was extremely happy that my father in law took care of the dirty dishes in the sink for two reasons. 1: I can only imagine how bad that would've smelled, and 2: still being without hot water, I couldn't bear hand washing dishes with colder than cold water.

But I quickly began to realize how difficult coming home from vacation actually was. Shortly after arriving home it was time to do Nathan's evening treatments and I had no clue where I had packed his neb cups or half of his medications and supplies.

Then I woke up and realized I forgot to hold our mail at the post office, needed to refill all of Nathan's prescriptions ASAP, still needed to pay bills including our mortgage, and had the entire water heater issue to deal with. Not to mention the fridge full of nothing but moldy leftovers and the dirty sheets on all of our beds that I should've changed before going on vacation in the first place.

I am very happy to say we now have hot water again, thanks to our families for helping.

Slowly things are returning to normal and I look forward to that but until then I may still be in somewhat of a funk. Coming home from Florida sunshine to New Jersey thunderstorms is quite an adjustment.

Friday, May 13, 2011

Thursday, May 12, 2011

Look! {flashback photo}

Look, It's a Nathan flashback photo. While Jay was fixing his mother's laptop computer he came across this photo of Nathan pumpkin picking back in October of 2009.  He was 14 months old.

Pumpkin Picking-46 copy

Is it just me or does this expression look vaguely familiar?  I swear if Teagan doesn't look exactly like a mini replica of Nathan here, minus the shaggy hippy hair.

Tuesday, May 10, 2011

Home sweet home

Our flight from Orlando landed a few hours ago and our family is finally back at home. It is so nice and somewhat strange to be back home after our two week vacation to Florida.

I haven't been online very much during the past week because I've been super busy making memories with my family. It felt great to relax and show my kids, Nathan especially, a good time. I will share a few more photos as soon as we get back into the swing of things.

If all goes as planned, we should be getting a replacement water heater this week, yay hot water!

But first I need to pay some bills and get photo cds to clients. I never made it to the post office as I had originally intended to during vacation.

Time to snap my brain out of vacation mode and into the photo taking and money making mode...and perhaps the phone call returning, prescription refilling and doctor appointment making mode while I am at it.

Thursday, May 5, 2011

Can you guess what we did today?

fort lauderdale beach

Only one more day left in Fort Lauderdale, enjoying every last minute.

Monday, May 2, 2011

Chef Mickey's | Meeting Donald Duck

Before we left Orlando/Clermont for Fort Lauderdale we had one last thing planned for Nathan, breakfast with Donald Duck at Chef Mickey's. The excitement was building throughout the morning as we did his morning treatments. Even Grover was getting super excited.

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On line for Chef Mickey's, we had a small surprise for Nathan...

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...a Donald Duck to keep his Grover company! I was happy that the prices on stuffed animals in Disney World were comparable to the prices in The Disney Store back home.

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Here is part of the gang with Chef Mickey himself.

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Jay's parents even came to breakfast with us.

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Mickey Mouse waffles are amazing!  I think we might need to get one of these Mickey Mouse waffle irons back home.

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This is Nathan's first encounter with Donald Duck. I think he was so excited that he started showing off and shoving pancakes in his mouth.

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Thanks for the autograph, Donald.

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I am pretty sure Teagan was in love with Goofy.

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...and Pluto.

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Minnie Mouse was a flirt! I caught Minnie giving Nathan a kiss!

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I absolutely love Nathan's expression when he met Mickey.

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