Thursday, June 30, 2011

He got hired! We will have an income!!

Our prayers have been answered. Thank you to all of our friends and to the supportive members of our family for all of the encouragement and prayers. We are both ecstatic that we will once again have an income to help pay our bills. Jay begins the new job on Tuesday, so we are going to celebrate big time this July 4th.

I always worry more than I should. My insurance concerns were unjustified because Nathan and Teagan are going to retain the same health insurance coverage through NJ Family Care. Jay is going to have health insurance for himself. I am the only one that will be without health insurance coverage. We had the options to elect coverage for Jay alone, Jay plus the kids, or Jay plus me and the kids. Unfortunately the second two options wouldn't leave us with enough money to pay our bills so that is why I am going to pass for now.

Not a smart decision, I know. But at least we are one more person closer to our entire family being covered! These are all steps in the right direction.

Some people have been telling me I have been disclosing too much information on my blog. I disagree. Although this blog is called Nathan's Fight, it is MY personal blog detailing all the aspects of having a member of our family living with a chronic disease. I am not giving salary amounts (although you wouldn't be impressed) or insurance premiums or copays but sharing the ups and the downs of trying to be able to provide for all of our needs financially, physically, and emotionally.

Now I have to go price some new tires since the commuting will be commencing shortly.

Tuesday, June 28, 2011

Meeting Brobee and Muno - Lakewood, NJ

We piled in the car with our favorite Yo Gabba Gabba books

yo gabba gabba - 004

singing "Find a Friend" and "Party in my Tummy" with our plush Muno and Brobee

yo gabba gabba - 005

determined not to nap at all during the long 2 hour drive ahead

yo gabba gabba - 003

 

Monday, June 27, 2011

...and the week begins

We had a nice weekend.

Nathan finished his 28 days of TOBI Saturday evening and we are pretty happy about that since it adds an hour of playtime back to our day.

He finished his 21 days of Cipro last week.  I am keeping him on the probiotics because his poo still hasn't returned to normal.  We are adjusting enzymes up and down at every "meal" hoping that we can fine tune his output.    I'm trying to talk about poo in the best possible way but when it comes to CF poo.  Those with CF or CF kids now exactly what I am talking about. I'm getting better at describing it, especially at clinic, I think my most widely used way of describing his poo is the consistency of "whipped refried beans" and that's a good poo!  I'm not even going to being to describe his antibiotic or oops! I didn't give him enough enzyme poo's.

Moving on...we really enjoyed meeting Muno and Brobee yesterday.  Aside from the fact that we had to drive a little over 2 hours each way to meet them, it was an awesome experience.  Since we told Nathan where we were going, he was really excited.  We knew as soon as Teagan saw the characters she would also be excited.

I knew the meet and greet was at a baseball stadium in South Jersey (Lakewood, NJ).  I did not know that it was during a baseball game.  We had to pay for admission to the game but I was actually happy because we traveled pretty far just to take a photo with Muno and Brobee.  So at least we had something else to do down there rather than driving straight home.

I'm not going to upload any photos this moment because I have to do Nathan's treatments still.  But I am looking forward to hopefully enjoying a fairly quiet week and will post those Muno and Brobee photos as soon as I can.

We are still waiting to hear back from that job.  I am really hoping that the good news comes this week.  See that, I am forcing myself to be optimistic.

Sunday, June 26, 2011

Visiting Radek {and Jamie}!

So if you guessed that we visited Dudley, you would be correct.  If you guessed Radek, you would also be correct.

a special visit - 01

Dudley has an adorable little mug. He also has an obsession with tennis balls. I should have realized it as soon as I was greeted at the car by Dudley and a tennis ball dropped at my feet. I threw it, my mistake. Kinda like that movie Spanglish, whatever you do, never throw the ball.  In the house I repeatedly found the tennis ball wedged under my legs on the sofa and this face staring at me.

Nathan could not come with me because he has Cystic Fibrosis and so does Radek. The CF community is well aware that CF kids do not play together because of cross contamination. But my community of family and friends may not know this fact. It is unfortunate because Nathan and Radek would have had a blast together, but it is what it is.

a special visit - 03

Teagan was fascinated with soon to be big brother to CF baby sister Peyton.  Teagan and Radek were calling back and forth {more like screeching like pterodactyl dinosaurs} while Radek was supposed to be napping upstairs.  He was imitating her and Jamie and I watched his end of the conversation on the video baby monitor.

a special visit - 02

I had just as much fun hanging out with another CF mom who knows exactly what I experience on a daily basis.  Just like I brought Nathan home from the hospital to complete his IV infusions not too long ago, 8 month pregnant Jamie is currently overwhelmed with around the clock IVs.  Two year old Radek was just as cooperative as Nathan was.  These CF kids are just amazing.  Here Radek is getting his PICC line flushed by mother Jamie.

a special visit - 04

It is funny, in a sad ironic sort of way, that Jamie told me she thought of becoming a nurse prior to having children.  And that is exactly what she is.  We are nurses to our own children, the best nurse one could be.

Saturday, June 25, 2011

if jay gets a job, how can we mooch off the system?

First of all, let me say that the title of this post is not something that I would ever say or even write on my own accord.  The post the above statement is referencing was one that I published last week,  "Possible new job for my husband, health insurance implication".  I am not for confrontation, especially not in person because I can often speak without thinking.  That is why I am writing my feelings here, without mentioning names because who the hell cares.

The statement above is something that smacked me in the face when I turned on a family member's computer and opened up facebook.  I think this statement hurts more because it was thought out and written by a close family member.  I didn't hack anyone's facebook, the person was still logged in when I booted the computer.  Oops, must've checked the "keep me logged in" button by accident.  I am sure this is hurtful to my husband as well.

So since this is MY personal blog, I can say whatever I want.

Don't make accusations against our family or our decisions unless you have lived a day in our shoes.  Don't criticize us unless you have to deal with a chronic, terminal, life threatening illness.  Most importantly, remember that Cystic Fibrosis is genetic, you are family, you may be a carrier of a mutation, GOD FORBID you EVER have to deal with the pain I experience, cry the tears that I cry, think the thoughts that I think, fear losing your very own child before it is his time.

So, now to clarify...I have no desire to mooch off the system.  I would love very much to have Jay's potential new job have insurance that is good enough to cover Nathan's MANY medical expenses.  Do you know how much his recent one week of hospitalization billed us?  Over $50,000.  Do you know how much his prescriptions cost per month?

APPROXIMATE PRESCRIPTION EXPENSE PER MONTH (using Cystic Fibrosis Services Pharmacy and Drugstore.com as references)

Xopenex - $60

Prevacid - $190

Zantac - $340

Creon $560

Hypertonic Saline - $70

Pulmozyme - $2,300

Pediasure - $220

Vitamax- $25

Zyrtec -$40

Iron - $12

Zithromax - $240

When he is on antibiotics, you can add:

TOBI - $5,000

Cipro - $160 or

Bactrim - $30

Then you can add on the as needed stuff:

Bactroban: $95

Nystatin: $15

Miralax: $20

So that's $4,000 to $9,000 in expenses per month on prescriptions alone.  Could you afford to pay that out of pocket?  Would you rather skip the medications altogether and watch your child slowly die rather than accept help from "the system"?  Heaven forbid your child were to be admitted to the hospital for one to two weeks at the bill of $50,000 to $100,000?

Were you ever in the hospital?  Oh wait, I know the answer to that?  Did you have insurance?  Did you accept help from "the system" for your medical bills?  Ever collect unemployment?  Before you make such bold statements about others maybe you should think of all that is really going on.

Jay's previous job paid him only enough to scrape by, not even enough to pay our mortgage before we had it modified.  They offered an insurance package but he would have lost too much of his take home pay to afford our expenses.

I am not ashamed to get help from the system.  Jay has been out of work for some time now and has not collected unemployment, perhaps he should have.

Now I look forward to Jay hopefully getting this new job that may barely pay our bills and hopefully offers good health coverage for Nathan.  For me, I could care less.

And I will continue to hussle for my family, schedule photo sessions that will take more of my time away from my children and husband in order to help pay our bills.

 

 

Can you guess who we visited yesterday?

a special visit - 01

A little hint, only Teagan came with me.

Tuesday, June 21, 2011

Possible new job for my husband, health insurance implications

Who has to worry about how a new job will impact your child's health care coverage?  Just another reason why I have so much anxiety.

Jay had a job interview today which he thought went well.  Unfortunately it is not a network administrator position so he wont be making what he is worth but if gets hired it will help pay our bills.  I am concerned about the health insurance situation.

The job comes with health benefits, rock on, but I have to get more information about coverage, copays, prescription, etc.  Right now the kids are covered through New Jersey health insurance and as much as I complain, the coverage is pretty fabulous.

With the New Jersey Family Care insurance, we make have to argue and get prior authorization on everything but in the end we, meaning me and the nurses, get the insurance company to pay up.

So please keep my family in your thoughts and prayers.  Pray that Jay not only gets  the job but also that the health insurance coverage will be as good or better than the coverage Nathan currently has.

Monday, June 20, 2011

Healthy Crepes

For Father's Day, I made crepes.

crepes - 04

I've made them before with a more complicated and not so healthy recipe and wanted to change that.

Sunday, June 19, 2011

Father's Day {morning} in our house

To kick off the day on the right foot Jay received his fruit punch Spark in bed and then took his shower.

While he was showering, Nathan found the homemade orange juice ice pops in the freezer and decided to get one for himself, and one for Teagan of course.

fathers day - 03

fathers day - 02

fathers day - 01

When I begin to wonder what the sticky mess all over my house is from, please remind me of the orange juice ice pops.

Then I made some healthy crepes while the kids and their daddy watched Yo Gabba Gabba. Nathan's former favorite show and Teagan's current favorite.

fathers day - 04

I hear they were delicious and I completely agree.

fathers day - 05

Shall I share my healthy crepe recipe in an upcoming post?

Then while I cleaned up and Teagan made a mess in her high chair, Jay colored...with Nathan.

fathers day - 06

And we did a Father's Day activity, which I didn't photograph but it was messy and had something to do with hands and feet.

Friday, June 17, 2011

ProBugs

Seriously, one of the best things I ever found.  I was looking for something somewhat fattening (5 grams of fat, 130 calories) for Nathan while shopping at Target and happened upon this Organic Whole Milk Kefir for kids.  The monster characters on the package peaked Nathan's interest and that is a good thing these days.

There is some sort of sippy spout so it is spill resistant.  He could hold it and drink it right out of the package, no spoon, no straw, barely any mess...unless of course you should happen to find it in the hands of a 9 month old.

Although Teagan did a pretty good job slurping up her Kefir too!

ProBugs Kefir

I'm not too worried about my kids making messes though.

Wednesday, June 15, 2011

We like to pick fruit

Whether it be apples, oranges, or strawberries, we like to pick fruit.

strawberry picking 2011 -_

We like to wipe our fingers on our shirts

strawberry picking 2011 -_-4

and pick our fruit right from the source.

strawberry picking 2011 -_-6

We like frolicking around

strawberry picking 2011 -_-3

and even falling down.

strawberry picking 2011 -_-2

We like sharing strawberries

strawberry picking 2011 -_-5

with some of our best friends.

strawberry picking 2011 -_-7

We like to sneak strawberries right from the basket

strawberry picking 2011 -_-9

and shove them into our mouths whole.

strawberry picking 2011 -_-10

We like to pick fruit.

strawberry picking 2011 -_-13

Teagan loves being close to her brother.

strawberry picking 2011 -_-12

I love watching him share.

strawberry picking 2011 -_-11

We like to pick fruit.

strawberry picking 2011 -_-15

and rhubarb too.

strawberry picking 2011 -_-14

which actually makes a very nice sword.

Monday, June 13, 2011

Feeling disconnected

My laptop is currently out of commission and I am now realizing how much of a convenience a laptop is. I am behind on "work" because all of my data from my laptop is backed up on an external hard drive and my desktop computer is located in the basement. So here I sit typing, surrounded by four concrete walls, a concrete floor, and air conditioning ducts over my head. Not exactly the place where I would feel comfortable letting two children play while I edit photos. And it has proved to be more difficult than I had imagined to orchestrate a schedule where I could work and Jay could watch the kids upstairs.

I am behind, very behind on finishing photos for clients. Needless to say blogging has taken a back seat to photo editing, and photo editing has taken a back seat to the life that goes on above my current seat in the basement. Back from an afternoon of picking strawberries and "swords" or stalks of rhubarb, the kids are content, for now.

But now I am down here, for as much time as Teagan will allow, and must accomplish something. I have a photo disc all ready to be mailed out but I can't figure out how to get the darn LightScribe label to burn.

Wednesday, June 8, 2011

This is how I find time to make dinner

I'm not superwoman, in order to make dinner I need to occupy my 6th appendage. I bet you only thought humans had 5 appendages but not me, I have 6 appendages. I've got one head, two legs, two arms (though I wish I had a few more arms), and one Teagan.

while cooking dinner-2

I do fairly well with the first 5 appendages, it is the last one that can become problematic while trying to prepare a meal. So I must find a way to occupy her without her attached to my hip. MultiGrain Cheerios in a bowl on the floor, all over the floor, works pretty well.

while cooking dinner-3

I could care less how much of a mess she makes while I make dinner. Cheerios are pretty safe, especially when she is playing with them right near my feet. The fork, on the other hand, is questionable. I'm not sure where she found that but I can probably make an educated guess and say Nathan pulled some forks out to use as his sword, you know for Peter Pan/Captain Hook sword fighting purposes.

while cooking dinner-4

while cooking dinner-5

Yep, that is pretty much a classic "Teagan face" right there.

while cooking dinner-6

So that is how I find the time to make dinner with two hands, minus the dangerous fork which was promptly confiscated. If the "make a mess on the floor" tactic doesn't work, I usually just stick her in the high chair with the food. This way I know she won't disappear from the kitchen.

Tuesday, June 7, 2011

Would you?

If your local pharmacy were only 1.3 miles away from your house, would you drive 8.5 miles for a 24 hour pharmacy with a drive through and online account access and prescription management?  I would and I am.  I don't know why I haven't switched years ago.

This is incredible.

No more saving receipts for prescriptions because I can view prescription history online.

No more searching for and keeping track of prescription numbers and entering them, and verifying them, one by one on my cell phone because I can now just check a few boxes and click "refill".

No more arranging a time to make a pharmacy run in order to avoid getting the kids in and out of their carseats because now I can drive through and pick up the prescriptions any time of the day or night.

I would normally use a mail order pharmacy and have his prescriptions delivered straight to our doorstep however several of his prescriptions require reconstitution and have a short shelf life.

Oh and let me just update Nathan's medication list because yet another new prescription was added today. Nathan is now going to take Zantac morning and afternoon in addition to the Prevacid before bed.

I really can lose my mind trying to keep track of all his medications and treatments.  I feel so bad for the parents whose children have medication lists much longer.

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
Zantac, twice daily

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

Vest 30 minutes, 2x daily-3x daily

Monday, June 6, 2011

Flashback | 9 month old Nathan

ridgewood memorial day 5k

ridgewood memorial day 5k-2

The above photos were taken at the Ridgewood, NJ Memorial Day 5k and 10k two years ago.

 

Savory Quinoa With Black Beans and Corn

Our family is beginning to love quinoa.  It is an excellent alternative to rice and is full of amino acids and protein.  It is a sprouted seed so it looks a little funny but it is fluffy and tastes great.
The quinoa seed is high in protein, calcium and iron, a relatively good source of vitamin E and several of the B vitamins.  It contains an almost perfect balance of all eight essential amino acids needed for tissue development in humans...The protein in quinoa is considered to be a complete protein due to the presence of all 8 essential amino acids...about 1/2-cup will provide a child's protein needs for one day.  Quinoa from the Andes by Karen Railey



Savory Quinoa With Black Beans and Corn

quinoa and beans

Ingredients

1 cup quinoa

2 cans  black beans

1 can corn

fresh cilantro

cumin

cayenne pepper

salt and pepper

1 onion

3 cloves garlic

coconut oil

 

Directions

Saute chopped onions in a spoonful of coconut oil (or whatever oil you prefer).  Add 3 gloves of minced garlic.

Add about a cup of quinoa (keen-wa) and 2 cups of chicken or vegetable broth, one teaspoon of cumin, 3/4 teaspoon cayenne pepper, and salt and pepper.

Cover, bring to a boil, reduce temperature, and let cook for about 20 minutes until broth is mostly absorbed.  Add one can of corn, two cans of black beans, and a handful of chopped cilantro and heat until warm.

It is so delicious that my husband had seconds, and then thirds!  What a flavorful and healthy combination.

Sunday, June 5, 2011

Mostly a yeast infection

I've been busy, trying to keep up with life, you know just managing.

Nathan developed a nasty yeast infection mostly on his groin from the Cipro.  I wasn't sure if it was just a diaper rash but after frequently cleaning the skin, letting his skin air dry without a diaper, and applying all sorts of diaper creams and ointments, I knew it must be something more severe.  Along with the diarrhea he got from beginning the antiobiotic I had a gut feeling that it must be candida (yeast).  There were large red patches of skin on both thighs that were beginning to break open in spots.  I also noticed small red dots appearing on the skin inside his diaper.

Initially I purchased some over the counter products, Lotrimin and miconazole, with the intention of rotating back and forth every diaper change but then another CF mom recommended Nystatin.  So instead of opening and using over $10 worth of over the counter creams and sprays, I decided to call the nurse and have her prescribe the Nystatin.

Although it seemed to be painful when I first applied the cream, I am glad I saw nearly 100% improvement overnight.  And since I don't want to deal with another overgrowth of yeast during the remaining two weeks of Cipro I switched Nathan from the Culturelle that he refused to swallow to a chewable acidophilus probiotic.  He now loves taking his "afidofis".

Other than being Nathan's full time pharmacist, I've been just trying to make time for my photography business so that I can get my clients their photos in a timely fashion.  I've been trying to set a two week limit per client.  I had a really fun engagement session today but first must finish and mail the photos from my twin photo session and wedding.

I don't think I ever mentioned it, but I began a 24 day challenge a week ago and it is going very well.  I think I am finishing day 7 today and have lost almost 6 pounds.  Jay is joining me for his 2nd round.  He has also lost over 5 additional pounds.  The herbal cleanse is not recommended while breastfeeding but I made my own personal decision, after doing some research on the herbal ingredients, and it seemed like certain herbs could either increase or reduce lactation or milk supply.  Again, it was a personal decision.  Teagan seems to be satisfied with my supply and I am happy knowing that I am eating healthy, losing weight, all while nourishing my baby girl.

Friday, June 3, 2011

nine

Yesterday Teagan turned nine months old.


Today she made a visit to the pediatrician.


 


She weighed in at


18 pounds, 7 ounces (42%)


Teagan 9 months


And was measured to be


29 1/4 inches tall (92%)


Teagan 9 months-2


She is still standing all by herself and walking assisted.


Last week she took one step without assistance but that was it.


Soon enough I'll have two children running around the house.


But for now I will enjoy my nine month old baby girl.


 


I just realized I never posted her 8 month photos but here is a look back to month seven.


Actually, you can see all of her monthly calender photos, with the exception of month eight which I will have to upload later, here.

Wednesday, June 1, 2011

Chicken Meatball Recipe

Here is a recipe for chicken meatballs that I made for my kids today. I figured since Teagan has very limited interest in pureed foods, I may as well try to make her some healthy finger foods and mashed foods. Of course in the process of infusing the house with delicious mouth watering aromas, I am hoping Nathan might try some of the solid foods eventually.

Chicken Meatballs

chicken meatballs 2-2

Ingredients

1 apple

1-2 chicken breasts (boneless and skinless), I used 1 large chicken breast cut into chunks

1/2 onion, I used a sweet onion but any onion should do

parsley, about a palm full

bread crumbs, I used a little less than a cup of Italian bread crumbs because they were in my pantry.  I may try whole wheat next time

a splash of low sodium chicken broth (maybe 1 Tbsp.), if Nathan becomes interested I will use full sodium to since we supplement him with salt for CF

whole wheat flour

coconut oil

Directions

Peel the apple and grate, discarding the core.  Squeeze of press out the remaining moisture.  I used a paper towel and pressed down, ringing out the towel a few times.  I picked up the apple gratings, wrapped in a paper towel, and gave it one final squeeze over the sink.

Then I rinsed the chicken breast and cut it into several large chunks.  The chicken breast I used was rather large otherwise I probably would have used two.

Chop the onion and parsley.

In a food processor, pulse the chicken, apple, onion, parsley, bread crumbs, and a splash of chicken broth until it is combined and there are no large chunks.  If you have a small food processor you may have to do a few batches.

Once it is combined, you can roll your meatballs.  My mixture made 19 small chicken meatballs, a good size for a child.  Then coat them with whole wheat flour.

chicken meatballs-2

While you are doing this, preheat the oil in the pan over medium heat.  I love coconut oil and cook almost everything in my cast iron skillet but you can use any oil and pan.

Cook the chicken meatballs until golden brown and cooked all the way through.  They are small so it only took about 6 minutes for me.  Of course you should probably cut one open to make sure.

Depending on the size of your child, you can serve whole, cut into pieces, or mashed.

Teagan much prefers to feed herself so I cut them into chunks so she could easily grab them.

chicken meatballs 3-2

Do you think she enjoyed them? I know I sure did.

chicken meatballs 4-2

Wordless Wednesday | Baby's First Converse

Teagan converse 3-2

Teagan converse 2-2

Teagan converse-2

Teagan converse 4-2