Monday, October 31, 2011

vest makeover

About time for a new "treatment photo".  I think he looks so cute and grown up when he is doing his breathing treatments. He is pretty compliant, only putting up a fight when I disrupt him from playtime.  I sometimes have to fight to get the vest clipped on him but once it is clipped and connected to the vest he usually stops fighting it.

Nebulizer and Vest-2

Now that we are on a month break from Tobi, which adds an extra half hour onto our twice a day treatments, I just tell him not to worry that we are doing the "short treatments" today, only one nebulizer.  He seems to understand this now.

And somebody must have found some of his Mario stickers because his Vest got a makeover this morning.
Nebulizer and Vest-3

I put the 5 stickers above the display, the ones that are perfectly straight.  That's one of my traits - perfectionism, sometimes an advantage and sometimes a flaw.  I am getting better at relaxing when it comes to all things unperfect.  Actually I am learning to LOVE the imperfect - worn wood, chipping paint, crayon on the walls, used items.

One a side note, I don't usually look at the vest's internal "clock" but today I did just for giggles and was shocked to see it reading 622.8  hours. So in a little over a year and a half, since February 2010, Nathan has sat attached to this machine for over 600 hours.


Sunday, October 30, 2011

trees down

They are everywhere.

They all look the same. Beautiful, tall, mature trees sagging from the weight of the heavy October snow from yesterday. Branches cracked and laying all around the base of the tree. It makes me extremely sad to see so many years of growth just lying there on the ground, broken.

Saturday, October 29, 2011

October Snow

Today it snowed. It snowed a lot and is still snowing.

October Snowstorm in NJ 2011-1

A beautiful Autumn day with colored leaves, I mean snow covered leaves. I am pretty sure it is supposed to snow only after the leaves have been shed from all the tree branches but that is not the case this fine day in October.  So what else to do beside get our snow gear on, I mean find snow gear that fits us and put it on.

October Snowstorm in NJ 2011-2

Teagan wore Nathans snow pants from 2 years ago, a pink jacket, and an adorable used pair of snow boots I found on eBay for $10. I am proud of that purchase. I am happy to see that Nathan fits in his hand me down jacket and snow pants from last year, thanks again Kim! I did pick up a brand new pair of snow boots for him to wear on sale at The Children's Place the other day...phew, just in time!

This photo below reminds me of A Christmas Story. I can't get up!  Actually I had so many layers on Teagan that when I was trying to stuff her into her coat all I could hear in my head was, I can't put my arms down!

October Snowstorm in NJ 2011-3

Nathan threw and ate snowballs. He was just dying to hit my camera lens with a snow ball. I played a good defense.

October Snowstorm in NJ 2011-4

If you asked Nathan what he ate today he would probably say "snow balls". That's what he told my dad when we Skyped him in Spain.

October Snowstorm in NJ 2011-5

Teagan couldn't really get her balance and was getting upset. But she loved watching the snow, "Whas at?" (what's that)

October Snowstorm in NJ 2011-6

October Snowstorm in NJ 2011-7

I squeezed Nathan's hands into his mittens from either last year or the year before. They weren't even snow mittens. I need to get him a pair that will fit his hands asap, before the next snow storm which hopefully won't be anytime soon.

October Snowstorm in NJ 2011-8



October Snowstorm in NJ 2011-11

October Snowstorm in NJ 2011-9

October Snowstorm in NJ 2011-10


Jay thought it would be fun to make an igloo instead of a snowman. I enjoyed watching.

October Snowstorm in NJ 2011-12

So did Nathan.

October Snowstorm in NJ 2011-13

October Snowstorm in NJ 2011-14

Teagan was happy to sit on top of the igloo.

October Snowstorm in NJ 2011-15

This is a lot of snow for an October in New Jersey!

October Snowstorm in NJ 2011-16

And a lot of photos of an October Snow.

October Snowstorm in NJ 2011-17

Nathan had so much fun this year. He really didn't even want to come inside. This is going to be such a great winter, I can't wait to take him sledding.

October Snowstorm in NJ 2011-18

And although we've been having brown outs all day, we have yet to lose power. Nathan is just finishing up his nebulizer treatments now and I am hoping to at least finish that before the power does go out. So many trees have been breaking and falling all day. The trees were not ready for a snow storm. The cracking of the trees sounds like a thunder and lightening storm. Hooray for the last tobi treatment of the month.

We aren't sure if he will be continuing his 28 day on 28 day off cycle of inhaled tobramycin because his clinic said the research indicates not treating the Pseudomonas when it is not cultured. This last sputum culture revealed MRSA but not Pseudomonas which is probably only because he was currently on tobi.


Thursday, October 27, 2011

missing two eyes

I've been really missing my glasses, my other two eyes.  Ever since Nathan broke them, the leaves on the trees just blur together.  I miss the sharpness of the world around me. Struggling to read packages in the store, wasting time walking in circles trying to find the right aisle just trying to get what I need.  I am by all means far from blind but the little blur has an impact on the everyday stuff.  I believe my prescription is somewhere in the less than minus 1 decimals, like - .5 or something along those lines,  but it makes a difference.

So I finally caved and scheduled an appointment to check my eyes, get an updated prescription and a new set of frames and lenses.  My appointment is next Wednesday.  I could have probably gotten a sooner appointment at Walmart Vision Center but they were rude to me on the phone and put me on hold for over 10 minutes so I hung up and decided they do not deserve my business.

So I am patiently awaiting  my Wednesday appointment at which time I will take whatever frames they can give me on the spot.  Honestly I could care less what I look like I just want to see crisp lines again.

Big Ugly Glasses


And deep fried oreos, enough said.  This was my first taste and let me tell you I need some more deep fried oreos in my life like yesterday.  Teagan loved them too.  Don't judge by the look on her face, they were hot out of the oil.

Wednesday, October 26, 2011

wednesday photo dump

photo dump October 26

Photo dump idea from Kelle Hampton.

Sunday, October 23, 2011

A New Dress for Teagan

My 4 day sewing project, completed in short spurts October 14th-17th, was a new corduroy dress for Teagan.

Teagan Wonderland Dress 01

In all honesty, the dress took about 4 hours from cutting the fabric to sewing on the buttons, but the ability to do anything for a continuous 4 hours gets thrown right out the window once children enter the picture.  I am okay with this.  In fact, I've noticed that splitting the work over a couple days produces a really nice end result with less  mistakes (and seam ripping).

Teagan Wonderland Dress 02

Here is the work, in progress.

Wonderland Dress in Progress

I love the corduroy fabric that I found on sale for $2/yard. I also love the contrast of the ribbon I used to hem the sleeves and the skirt.

Teagan Wonderland Dress 03

And I really love the fabric covered buttons.  My mother in law had the non covered button components and I found an almost perfect match in my scrap pile of fabric.  I was going to use the ribbon but it wouldn't secure.  Anyone know where to get the button parts to make fabric covered buttons?  I don't even know what they are called, fabric covered buttons perhaps?  I need more!!

Teagan Wonderland Dress 04

The pleats, oh my goodness, they are too adorable, but what a pain in the arse.  Not really a pain, just tedious.

And can you tell Teagan's hair is getting longer, and developing a cute little flip at the bottom?

Teagan Wonderland Dress 05

Autumn!  My favorite time of the year.  So many favorites all around me: my beautiful family, the smell of pumpkin candles, pumpkin lattes, worn red wagons, mums!  Recognize that wagon?  We finally got it unburied in our garage!

Lil red wagon-2-2

Oh, and in case you are wondering, although I don't usually use patterns, I did for this dress.  It is the Little Wonderland Dress by Australian company, Make It Perfect. I plan to make many more in all different fabrics/ribbons/buttons.  The options are limitless and each fabric will give it such a different look.  This particular pattern is 0-5 years and I think I made a size 2.  This dress will fit her for quite some time.

Thursday, October 20, 2011


I am both mentally and physically exhausted.  I don't think any amount of sleep at this point would be enough.

Last night I went up to bed at 7:45 pm, while Jay finished up Nathan's treatments.  Usually I hang out downstairs and doze off on the love seat sofa while watching TV with Jay, but the show on wasn't interesting enough to be worthy of falling asleep to.  I heard all about what I missed (on Investigation Discovery) today from my husband anyway, he gives really good extremely detailed recaps.

I woke up this morning at 7:15 am, actually Jay woke me up as he was on his way out of the door for work.  Apparently both kids were already awake.  Teagan, who joins us in our fairly high off the ground king sized bed in the middle of the night when she wakes up to nurse, managed to climb out of our bed to join her brother in the hallway.  They were both stairs calling down to the foyer through the balcony.  Good thing Jay was still home because I was dead to the world.  Both Nathan and Teagan can climb up and down the stairs by themselves and Nathan knows how to unlock and open both the front door and the back sliding door.  I don't even want to imagine what could have happened to them if I didn't wake up.

Teagan had a doctor's appointment for her second flu shot at 11 am about 20 minutes from our house.  My father in law came to watch Nathan, who really did not want to go to the doctor with me.  I can't blame him.  I was struggling to stay awake the entire drive and at one point almost turned back.  I was stuck in traffic because of the mowers cutting the grass and weeds along the side of the road and had one eye opened.  At one point both my eyes closed for a split second, longer than a blink, and when I opened them I swerved off to the shoulder and quickly corrected the steering wheel.  I was so mad at myself for endangering myself and others.

I grabbed a lollipop at the doctor's office and picked up some drive through fast food to keep me awake on the way home.

When I came home my entire body melted into the carpet.  I called my mother in law and told her I didn't think I'd be able to attend the CF Fall Fling.  I was extremely disappointed because I was asked to photograph the event and I hate to agree to something only to disappoint.  I am still annoyed that I didn't go but I could just imagine getting into a car accident on the way there because I can't keep my eyes open.

My father in law was kind enough to stay and let me take a nap.  I slept for 3 straight hours after sleeping nearly 12 hours the night before.  When I woke up I still felt exhausted and irritable but came downstairs to my father and father in law both playing with my kids.   I am SO extremely grateful for amazing family.

And now at 8:40 pm I try again to recover energy by a good night's sleep.  I can't take another day like today especially when I have clients waiting on me.


Wednesday, October 19, 2011

wednesday photo dump

october 19 photo dump

Photo dump idea from Kelle Hampton.

Friday, October 14, 2011

At the YMCA

Nathan just wasn't himself today. Aside from waking up at 6 am, which is perfectly normal Nathan behavior, he seemed lethargic.

I took him to the YMCA and after my workout, I came back into the Child Watch room to see him sitting in a child sized arm chair quietly reading a book to himself.


It was precious so I had to sneak a quick picture with my iPod before he spotted me.

But even though it was adorable, it just wasn't Nathan. Even the women in charge of the Child Watch said he seemed so quiet today.


When he saw me in the room he asked me to come read with him. As I got closer I noticed a pile of books he had picked out to read. Each book was very Nathan, so I knew he was browsing the YMCA Child Watch bookshelves. That's Peter Pan in his hands and he handed me Berenstain Bears, another one of his favorites.


I asked him to read to me and he did...
They were sword fighting (flip page) and the boat jumped up into the air (flip page) and it brought the peoples home.

There you have it, Peter Pan in a nutshell.



He fell asleep during morning vest and neb treatments and had many outbursts during the day. I am hoping he is just needing to catch up on some sleep. Especially since we still have no clue what is causing these random rashes to appear and disappear.

The rash on his face in this photo was from yesterday. He was running around at the time, it seemed to get worse as he got warm and sweaty.


See Teagan's hand in that picture? She saw me and grandma trying to hold Nathan still and wanted to help. Love those little chubbers. There is something about chubby little baby fingers, I could just eat them with a spoon.

Thursday, October 13, 2011

Stream of consciousness

I made and ate the best pancakes in the world this morning. One of my children shared my thoughts on the pancakes and the other gagged in disgust, you wouldn't believe which one was which.

I can almost see my kitchen counter, this is very exciting. It is so easy to build piles of papers, cameras, lenses, books, small Lego pieces, and other things I try to keep out of my kids hands. Found some unpaid bills in those piles, not as exciting as being able to see a clean counter top.

I'm trying to create a clean space where I can start sewing some clothing for Teagan. I have a few patterns, some ideas in my head, and alot of inspiration on my pinterest boards. I can't wait to see what kind of scraps I have in my fabric bins.

Nathan had a great visit to his CF clinic yesterday. He gained over a pound and grew an inch. For the first time I found out his BMI which is 16.5 abd near the 75th percentile. The CFF guidelines for BMI are to have at least 50%. He doesn't eat much but I guess he is meeting his nutritional needs somehow. Lungs clear, pulse ox 100%, unexplainable rash, but overall a great visit and continuing all the same medications, antibiotics, and treatments.

Nathan asked me to take a picture of his stuffed animals all sitting on the back of the sofa, watching TV as he was getting ready to do treatments this morning. He asked for the picture but wouldn't you know I still couldn't get him to look at the camera.


Other than that, I have an appointment with my favorite hair stylist today. Also going to finish up with a sweet little, almost one year old, boy's photos before this weekend's session and next weekend's mini sessions.

Wednesday, October 12, 2011

Clinic Today

This photo was taken last week when we visited Tillman's Ravine with my brother Frankie who was visiting from Colorado. Nathan had fun pointing out all the mushrooms and pretending to step on them but ever so gently not crushing them.


He has been coughing alot more recently and yesterday developed a hive like rash reminiscent of the rash he got while in Virginia a few years ago.

But we are going to the hospital for his routine CF visit today so I figured I would just wait and talk to the doctor today.

Teagan will be staying with Grandpa Bill today.  My precious little leg clinger.


Sunday, October 9, 2011

It's called no brakes

This weekend I worked on my brakes with my father in law, who happens to be a really handy guy and an excellent mechanic. But don't get excited, he is not willing to work on any other cars.

We knew the brakes needed to be replaced soon but we didn't know they needed to be replaced like yesterday.  See photo below.


I am holding two brake pads from the front passenger side. The brake pad on top is brand new and the one on the bottom is the one we removed. There was absolutely zero pad left. With the car jacked up into the air, my father in law told me to put it into drive and step on the brake pedal. I did just that, pressed the pedal to the floor and the wheel just kept spinning, meaning that depressing the brake pedal wasn't doing a darn thing.

Not good!

Especially considering the rear driver side brakes didn't have any pads left either. Eek.

And I leave you with a photo of martian looking mechanic grandpa, who Nathan compares to Handy Manny.  If something breaks in the house Nathan knows it is not daddy but Gappa who will fix it.  Not that Jay can't fix it, just that Gappa gets it done a little quicker.


Friday, October 7, 2011

Slim Pickings

Slim pickings on the Cortland apples, that is.

This photograph of Teagan, which I absolutely adore, was taken at the apple orchard the other day.


I consider an afternoon at the apple orchard in Warwick, NY to be the perfect Autumn afternoon.  Being there reminded me of apple picking last year and how it marked the beginning of a terrible season for Nathan's health, a stretch of colds and infections that culminated in the Spring with his first hospital admission for IV antibiotics.

Here's to hoping and praying for a better Winter than last year.


Teagan, like always, bit right in. She got a few, not so sweet, apples, but nonetheless she was in awe of these magnificent fruit bearing trees.



Nathan also reacquainted himself with his first favorite fruit of all time, a nibble here and a nibble there.


He never really finished an entire apple but he took bite from many.


Once we collected a few apples in the bag, I put a blanket out so the kids and I could sit down and eat an apple while Grandpa and Uncle Frank looked for more Cortland apples to fill the bag. We were told that the Cortland apples make for really good apple pies but there were slim pickings.

Nathan had his apple eating routine down to a science. 1. Choose an apple from the bag. 2. Take maximum of 3-4 bites randomly placed on all sides of the apple. 3. Hand the apple to someone, saying "Take that". OR 4. Place the apples in a pile next to you on the blanket. 5. Repeat until bag is empty.


Take that, mama.


And since Nathan emptied the partially filled bag, this meant alot of tree climbing for Uncle Frankie.





Next up on my Autumn 2011 Bucket List, pumpkin picking and baking apple pies.