Friday, March 30, 2012

We figured it out

One problem almost solved.  Jay was not allowed to (legally as per NJ State Laws) opt out of his company provided health insurance after the fact unless switching to other coverage but I think we figured it out.  He is now, as of today, off his company's health insurance plan.  I can breathe.  We have been through so many ups and downs financially ever since Nathan was born and to be honest I am shocked we continue to overcome them.  At this point it has become tragically comical.  What next.

The state of the economy in the New Jersey and the entire United States is just not helping our situation one bit.  Ideally, given a good economy our recent past would have played out as such: Nathan is born and diagnosed with Cystic Fibrosis, I resign from teaching to care for him, we put our house on the market and it sells, we either break even  or we sell it for the amount we owe on our mortgage, we either purchase a much less expensive house with no monthly homeowner's association fee, we rent, or we temporarily move in with family.  It must be nice for some people living in certain countries who are not currently experience the economic turmoil that we are experiencing.  I am actually proud of how we have been coping with the many obstacles being placed in front of us, especially since we've been overcoming without financial handouts, which of course we would refuse as nice the gesture would be.

I am not saying we haven't had help, I am just saying we haven't accepted handouts.  Our family and friends have been extremely generous in helping us through these constant ups and downs.

I am very grateful...

...that my mother taught me to be a crafty individual, allowing me to sew clothing, quilts, cloth diapers, underpants, etc, saving us so much money.
...that my mother in law knows how to bargain shop and purchases 90% of the clothing my children wear.

...that our parents welcome us to share meals with them the majority of the week.

...that our kids enjoy hand me down toys and clothes just as much as brand new.

...that my father and my in laws watch our children so I can schedule photo shoots and get work done.

...that I have some very amazing friends who are very good listeners and have invited us to enjoy much needed time away from home.

I am very grateful for so much, sometimes I feel cursed but deep down I know I am blessed.  I am happy that we are continuing to figure things out.



Thursday, March 29, 2012

stream of consciousness

Today, I don't know where to start.  I feel like I have so much going on so a stream of consciousness post is the best way for me to attempt to express what's going on.

I still have no results from Nathan sputum culture.  I'm thinking of calling his CF clinic to check up on that.

Teagan had her 18 month well baby visit yesterday.  I completely forgot that there was supposed to be a 15 month well baby visit so she is even more behind on her shots than she already was.  She is even late on her 18 month visit.  I know I had to mention already that I hate well baby doctor's appointments, they give me anxiety especially when my well baby is smiling, pleasant, and happy leading up to the appointment which is what Teagan was before the appointment yesterday.  Then, after the appointment she morphed into a crankypants.  I don't blame her.  She was overdue on many vaccines being that we delayed them after she was born.  So yesterday she received 3 injections and aftwerward was crying to me "mamaaaaa booboooo!".  Talk about feeling terrible, putting my signature on the line.


Kids are now home from preschool, Nathan just finished with his treatments, Teagan crying of course.  I keep handing her Pringles and chocolate covered pretzels trying to occupy her attention and I have a feeling the few moments may not be worth it.  I have a pile of Pringle crumbs next to me and at my feet.  She is trying to shove her leftovers in my mouth and I'm desperately trying not to taste either of those highly addictive snacks.

I'm pretty sure Nathan just pooped in his underpants, which is the current thing to do.  Poop in underpants, dump poop into potty, act like it was the right thing to do.  Frustration.


Several weeks ago we were surprised by enormous deduction in Jay's paychecks due to health insurance and pension contributions and back pay.  Well we were yet again surprised by an increase in these deductions as well as a forewarning that it will increase even more come July.  He only elected health coverage when he began this job because it didn't detract from his pay.  Then Governer Christie signed the pension and healthcare reform bill over the summer and now we are faced with a horrible horrible dilemma.  Jay spoke with Human Resources yesterday about dropping his coverage and they said it was not possible.  Once you have health insurance, apparently you can't drop it per NJ State Laws unless you are transferring coverage to a different plan.  This is a huge problem.

Now the job hunting begins again because there is no way we can survive on his current reduced and future drastically reduced take home pay.

Realistically, we may not be able to continue to live here in New Jersey, which kinda stinks because I have been successfully growing my photography business through word of mouth.  I'm about as busy as I can be given 2-3 mornings of daycare/preschool.  I'm going to have to figure out on paper how much I would have to work to have the kids in full time day care several days a week and if it would be profitable for our family.  I've already given up nearly all socialization since being social and having friends seems to require spending alot of money.

I want to be able to continue to bring my kids to the YMCA classes and provide them with fun experiences.  As it is it looks like we may be doing alot less.  Forget about vacation, that word needs to be erased from our vocabulary.  Luckily we have family all over the country.


Time to tackle an evergrowing never diminishing to do list, and check Nathan's underwear, and get crying Teagan off the window sill and out of the curtains.  I still have yet to battle the state on the sales tax situation of the used mini van.



Wednesday, March 28, 2012

A happy family

I wuh you, you wuh me, we a ha-pee-ee

"I love you, you love me, we're a happy family"  - Just one of the many songs Teagan has learned from preschool.

photo dump 3-28-12

Off to the doctor for Teagan's "15 month well baby" appointment.  Whoops, I guess it is now going to be her 18 month, or close to 19 month well baby visit.  Poor unsuspecting happy girl is not going to be so happy in about an hour.

Thursday, March 22, 2012

CF clinic: the good and the not-so-good

Nathan had his routine checkup at cf clinic yesterday.

The good:

Nathan swallows his enzymes whole, 2 at a time.

Nathan is doing terrific with development. Potty training, speech, etc.

He continues on a relatively healthy streak. His cough is normal, lungs sound great.

He keeps up with other kids his age (preschool, YMCA sports classes, play dates) without tiring or wheezing.

Last sputum culture was normal flora only, a first in the history of Nathan. We will soon see what sort of bacteria is growing in there this time around.

The not-so-good:

Weight loss of 2 pounds. 35 pounds 3 months ago, down to 33 pounds.

I guess I'm really not so surprised since I mentioned he looked rather thin.

Nathan has a very poor appetite and is adamant against trying or even looking at yucky food.

In the 3 months since his last clinic appointment we used up all of our WIC accumulated pediasure. This happened a few weeks ago. I started purchasing whole milk again since this is his sole source of nutrition. We dose enzymes based on grams of fat so I usually focus on that when looking at labels. We naivly considered whole milk and pediasure to be considered equals when comparing fat because they both required 3 enzymes (creon 6). However they are not equals when comparing calories, since regular pediasure has approximately 100 additional calories per 8 ounces.

Of course, having some extra weight on my own body, I thoroughly understand that it's all about the calories.  My husband and I are very scientific and precise people so we loved our method of dosing enzymes - 6,000 units lipase to digest 3 grams of fat, but now we are going to have to adapt for total calories, paying more attention to calories from sources other than fat, like protein and more complex carbohydrates.  The simple sugars/carbs begin digestion in saliva and can also be digested in intestines.

So the switch from pediasure to whole milk combined with being highly active and enjoying more time outdoors could be part of the 2 pound weight loss.  Pediasure is more expensive than whole milk, so for now I'm back to adding heavy cream to his milk.  The doctor wrote a prescription for pediasure to see if we can get it covered by insurance as sole source of nutrition.  I'm going to be optimistic since Nathan was recently assigned a case manager who thought it would be a good idea to get an evaluation at a feeding and swallowing clinic before he becomes failure to thrive.  She seems to get how serious this is and I'm sure I can get her to fight for us.  I will be giving her a call today if I can remember.

Feeding/swallowing clinic and food/behavioral therapy is also on the list.  There is only so much my brain can handle at once.  I have a card for a clinic but they require out of pocket payment/ reimbursement from insurance company.  I need to find out if and how much I will be reimbursed for this expense.  In the meantime I think it is more important to keep a roof over our heads.



Wednesday, March 21, 2012

photo dump

On our way to Robert Wood Johnson Hospital for Nathan's CF clinic appointment.  I joked yesterday about how fitting rain would be today.  My prediction was right.  Happy Wednesday!

photo dump 3-21-12

Tuesday, March 20, 2012

Pot O' Gold at the End of the Rainbow

For St. Patrick's Day, I made rainbow treats for each kid including several pots of (Rolos) gold at both ends of our (Rainbow Twizzler) rainbows.  The more gold the better, in my opinion.  I've been holding off on posting these photos because we also made a rainbow for each of the grandparents and I keep forget to have the kids give them.

st pattys day 2012 - 01

Both Nathan and Teagan dug right into the gold.  Although Teagan didn't realize the gold wrapper on the Rolos are just for show.

st patricks day 2012 - 02

Rainbow Twizzlers don't taste like the original Twizzlers, just like the original Twizzlers taste nothing like the Pull & Peel Twizzlers, which just so happen to be my favorite.  But the Rainbow Twizzlers are a close second.

Nathan wanted to eat all the red Twizzlers, shocking I know.  And Teagan was partial to the purple Twizzlers, although just the word "purple" it could have been any color in her hand.

st pattys day 2012 - 03

Tomorrow we have a LONG day.  It is Nathan's routine check up at the CF clinic, an all day affair.  Getting used to the pre clinic anxiety but nevertheless still anxious.  Now that short season is here, I notice Nathan's scrawny little legs and arms and wish I could beef them up somehow.  Seriously he looks so fragile.  That's all for tonight.  Still having my ups and downs these past couple weeks.  But I'm keeping so busy I hardly have any time to worry.

My little lucky charms keep me going.

Sunday, March 18, 2012

Just loving

Spring is right around the corner, but I already consider it here. Regardless, we are just loving the sunshine, warmth, and longer days.

Dresses without tights, ruby red slippers glittering in the sunlight and a juice box in tow.

T grandmas house

So if you haven't heard much from me lately it's because we are enjoying the new found freedom of spring. And it looks like Nathan is looking forward to summer just as much as he is enjoying spring, in his underwear sans shorts. Potty training is going great!

N grandmas house

Sunday, March 11, 2012

Warming up

Just popping in real quick to let you all know that we are alive and well.

My mood has improved a little bit with constant effort and reminding myself to be patient with the kids. Too many nights have I gone to sleep with the feeling of regret as to how I responded to my children during the day.

With an extra hour of daylight and the temperature getting warmer, I've been trying to make it a point to take the kids to a park every single nice day. They have really been enjoying this. During our park excursions I've been trying to focus on play! Meaning minimal iPhone usage, minimal meaning a few photos for daddy or instagram. But being a weekend, daddy was able to join in on our park excursions.

Park excursion

I am beginning to look forward to our daily park excursions. There are many benefits including less time spent making a mess for me to clean inside the house and attempting to tire the kids out. Although it seems like I burn way more energy doing a lot less than they do.


I also feel very blessed with a busy week of photo shoots. This means I will probably be bringing the kids for an extra day or two of preschool so I don't get too behind on my photo editing. I still have a handful of photos from my last newborn shoot and then two complete mini sessions to work on from this weekend.

The engagement session was held in a library and just from glancing at the photos on my camera, I am in LOVE! ...and clearly, so is the couple.

Engagement shoot in library

I love engagement sessions before photographing a couple's wedding, it gives me a chance to get to know the bride and groom and see their chemistry. This particular couple has got chemistry and I can't wait for their wedding at the end of the month.


So it looks like I have another busy week ahead of me, a week full of park excursions, YMCA classes, preschool, photo editing, my husband's endoscopy, culminating with another sweet newborn boy on the schedule.

Thank you God for sunlight, warmer weather, friendship, and busy schedules! Sure does help in my efforts to improve my mood.

Friday, March 9, 2012

Round One

I mentioned in a previous post that Jay was scheduled for two procedures: a colonoscopy and an endoscopy.  He knows that I made this public knowledge and is ok with it.  Apparently people don't really like to talk about colonoscopies but since it is a procedure recommended for everyone over the age of 50 we don't see why the topic is so hush hush.  We talk about poop and changing diapers all day long anyway, what's the difference.

Jay said the prep work of cleansing the large intestine and starving himself for 36 hours (his procedure was in the afternoon) was more of an inconvenience than the actual colonoscopy which lasted no more than 20 minutes.  I didn't see him for about an hour and a half because they had to prep him for anesthesia and then wake him up.  Did you know they fill your intestines with a gas to inflate them for the scope?  Yep that gas must come out on its own after the procedure.  I'm chuckling about this. {grin}

The good news is that everything his large intestines was perfect.  No ulcer's. crohn's disease, polyps, etc.    I feel relieved.  Round one of testing looked good.  Next week he has an endoscopy because he is having many swallowing issues, and discomfort before, during, and after eating.

Tuesday, March 6, 2012

Lessons to be learned

I have no problem with toys being played with.

I have no problem with a few toys being left here and there.

I have no problem with the toy bins being used as toys and turned into "gates".

I do have a problem with the heap if toys that gets dumped on the floor in the process.

I am not angry, I am merely reacting.

Now they can enjoy those bins without the pesky toys slowing them down.

Lessons to learn

Monday, March 5, 2012

Tricking myself into happiness

I'm a firm believer in "when it rains, it pours". Currently I feel like softball size chunks of hail are being hurled at me from above.

Life goes on, and my daily responsibilities are my responsibilities rain or shine.

My entire being feels miserable, my body wants to shut down. I'd love to take a nice long winter nap and hopefully wake up to sunshine and a double rainbow.

There is nothing in particular to blame for the heaviness weighing me down, just a lot of little things on my mind, small yet significant worries.

So as I sit on the sofa exhausted earlier today, I felt my unhappiness in my frown. Frowning is exhausting. I may have a lot of worries, many on which don't plague the average person/family, but I do have plenty to smile about - like a husband who understands how I feel, who shares many of those feelings, and two currently healthy children, shelter - a house that we miraculously have been managing to stay in, among other things.

So while I may not want to, I'm going to try to trick myself into feeling happy. Forcing that awkward looking fake smile and perhaps looking at myself in the mirror while doing so which may in turn evoke some sincere laughter.

I'm sure I would look a lot prettier of those smiles were real but it's a good start I guess. Just enough to turn this current mood/situation around.

-- Please say a prayer for my husband who is having a colonoscopy this week and an endoscopy next week. That's two too many -oscopies for my comfort.

Sunday, March 4, 2012


Feeling regret tonight.

Feeling like we were too hard on Nathan last night, not fully understanding how he feels.

Sending him to bed hungry, without his evening bottle, because he wouldn't try peanut butter and fluff. Obviously pediasure sits well with him. He also had all of his Skylanders taken away temporarily for not listening to us.

This morning in an effort to regain some of his toys, he ate some pancakes and promptly vomited them plus a pile of mucus all over the kitchen table.

I wish we weren't so hard in him. Regret.

I wish I knew how he really feels inside his little body.

Back home with my family after a baby shower and a busy weekend. So happy to have them in my arms right next to my body.

Their bodies are warming my heart but I'm still overcome with feelings of guilt and regret.