Friday, July 31, 2009

not included (UPDATE)

UPDATE: The home medical supply company delivered the compressor. The compressor was an entirely different brand and model than the one we use. This upset me but I am sure a compressor is a compressor. The gentleman came into my house to show me how to use it with the wrong nebulizer cups that he also delivered, that I also paid money out of pocket for. He did not understand why this was a problem. When I asked about being able to boil them for sterilization he had no idea. I then explained that I needed the Pari LC Plus for the Tobi (antibiotic). He was clueless on both accounts, again. I am going to call Pari right now. I will try regain my composure first.

Another UPDATE to the UPDATE (9:08 am):
Just
very calmly got off the phone with a Pari representative. (Thank you @CFResearch) The machine is still under warranty. I have a return authorization number and will mail the compressor to them today, if I can locate my only set of car keys. They will examine the compressor and replace the machine if it is a manufacturers defect. Please God let there be a defect! The warranty will be void if the compressor has been dropped. Please God, I don't think it has been dropped but please let there be no evidence of such!

Thursday, July 30, 2009

not included

The following is is my end of the conversation.

What, you say the motor burnt out on Nathan's compressor and we can't use his nebulizer anymore?


Phew, you can have the medical supply company deliver a new one!

Wait what's that, my insurance doesn't cover durable medical equipment?

I will have to pay COD?

Of course I still want a new compressor delivered, today!

Yes, I understand I need to pay the entire cost!

Ugh. It seems like it is always one thing after another.


Wednesday, July 29, 2009

keeping busy for a reason

I am sure many could relate to my present state of mind. I feel that I am always living the fine line between ok and not ok, between hope and despair, between happy and sad. My way to prevent the emotions from surfacing is keeping busy.

I keep busy, sometimes too busy, busy to the point of physical exhaustion, for the purpose of enjoying myself and my friends and avoiding the emotions that are related to our new life. Sometimes these darn stinking emotions surface when I least expect them or want them to.

The reason...

Submitting my resignation almost two weeks ago has just given me one more thing to worry about. How will we pay our bills? Don't answer that. Since March, I have been calling my mortgage company inquiring about the Obama Administration's Making Home Affordable Program. Not the refinance program but the loan modification program. A refinance would not do us any good since our mortgage is 100% of my husband's salary.

Anyway, the communications I have had with the mortgage company have gotten us nowhere. That is, until my husband called. It seems like the common responses are...call back in a couple of weeks, in a few weeks you should get a call, it takes up to 12 weeks for your case to be, etc. So now my husband calls them a couple of times a week and gets reference numbers. Apparently we are beginning to get on their nerves. In a couple of weeks, we should get a call with a resolution which should be in effect immediately but until then my husband will keep calling.

Another reason...

I want to throw an amazing first birthday party for Nathan for two reasons. For Nathan, he will only turn one once. For me, this has been one heck of a year for me emotionally, mentally, and physically. How can I justify throwing a huge party when I am worried about paying our mortgage? I can't but for the above reasons, the party will happen. My friend, Breanne, finally helped me secure a venue. Now that I have an address for the invitation I can send them to press. After they have been proofread of course. I already purchased Nathan's birthday present, which I found online for nearly half the price I would have paid in the store. Total savings on his brand new tricycle $90.

Yet another reason...

I searched and searched and searched to find the above gift on sale, to save $90 yet still give my son a fabulous gift for his birthday only to have to shell out $110 the very next day to bring my cat to the vet, again. Baxter is already on a prescription veterinary diet which I can't afford and requires these increasingly more frequent surprise veterinary visits for tests and medications which I also can't afford.

And want an example of a mini meltdown?

Sunday I went to see one of my dear friends from high school get married. My husband and I entered the church as the entire bridal party was lined up near the front door of the beautiful catholic church.

Cristina and Eric Wedding-29-2

I saw two of my friends and immediately felt a lump in my throat. I was on the verge of tears the entire ceremony, it was beautiful. Then after the ceremony I stood outside waiting for the bridal party to exit the church. I had not even congratulated the newlyweds yet.

cristina and eric-1

When my husband noticed my eyes welling up and asked me what was wrong, I lost it. The tears started flowing and I knew I had to leave before I made a scene at such a beautiful occasion. I had not seen or spent time with these girls in a very long time and I would not be able to attend the reception.

CF sucks. Money sucks. Emotions sometimes suck too.

But this little boy...
nathan stairs-1
...will always rule!

Ok, time to continue being busy. You know, birthday invitations, birthday planning, laundry, cleaning, not worrying, not being emotional.

Have a blessed day and pray for Stellan while you are at it. Life could be better but it also could be worse.

Tuesday, July 28, 2009

sugar and spice and everything nice

This week's Blog Hop theme is "Favorite Kid Photos". Since I have way too many favorites, I will choose a few from the month of July.

Since most of my favorites kid photos are of Nathan and his little buddies, I figured I would post two of my favorite little girl photos, for a change. So here you have it, sugar and spice and everything nice.

Cary Family-76

Olmec Party-3-2




MckLinky Blog Hop

Monday, July 27, 2009

aCASEYofCF: TIME TO GET ON SCHEDULE!!!

aCASEYofCF: TIME TO GET ON SCHEDULE!!!

As you can read by the time stamp on this post, I am awake. And I shouldn't be. Thanks to a wonderful tweet from @CaseyJones_Cool as I sit wide awake in the middle of the night, I have some wonderful ideas to implement in the future since keeping track of all the CF stuff is enough to keep me awake at 2 am...3 am...4 am... Oh boy, I am going to be tired tomorrow.

No frills to this post, go check out the link! Great ideas!

Sunday, July 26, 2009

time to party

It seems like it's the time of the year when everyone is having parties, barbecues, and weddings. Yesterday was yet another example and although it was a company party, it appeared to be all about the babes.

Here are a few of the cutie pies to feast your eyes upon. I am sure you will recognize Nathan. The other children (and puppy dog) belong to my husband's coworkers. The older kids (not shown here) were running around and doing crafts all afternoon.

Nathan loved the miniature juice box after he realized how to drink from the straw.




The trampoline was also a big hit, hopefully Nathan didn't forever leaves his imprint on the handle.
Olmec Party-6-2

Olmec Party-33-2

Meet Luna, an 18 week old black lab puppy. Or was she 19 weeks old?
Olmec Party-18-2

The boys loved her!
Olmec Party-7-2

Olmec Party-8-2

And I loved this little girl! Isn't she just the cutest?
Olmec Party-3-2

All the children and some of the adults, myself included {grin}, really enjoyed the blow up jumpy castle. I think I may have to check into renting one of these for Nathan's 1st birthday party. Doubt I will be able to afford it but I will try!
Olmec Party-27-2

I am off to see one of my dear friends from high school get married this afternoon so you know what that means, I have less than two hours to try on every single dress in my closet to see which one I still fit in. I hope there is at least one!

UPDATE: How could I forget to mention that a certain little boy was exactly 11 months old yesterday and in all of the above photos. Happy belated 11 month birthday, to my dearest Nathan.

Saturday, July 25, 2009

twenty-four seven

No, I am not referring to twenty-four hours a day, seven days a week.

I am referring to yesterday, my birthday, July 24th, 7/24.

I had a rough start to my birthday. In the wee hours of the morning, Nathan decided that he did not want to sleep. In retrospect, I think his wet swim diaper induced diaper rash was bothering him. When I heard him crying, I walked down the hall and grabbed him out of his crib. I figured that I would just bring him back into our bed for the evening.

Bad idea.

He spent a portion of the night perpendicular to my husband and I, kicking off of my husband and headbutting me. He spent another portion of the evening hammer legging my husband in the throat. Basically, he would lift his leg straight into the air and drop it down on my husband's throat and shoulder. Jay attempted to hold Nathan's leg down but that just resulted in a hammering action of the other leg.

And I am certain you are wondering what Nathan had in store for me. Well, he was picking apart my eyelids and trying to scrape my eyeballs with his fingernails.

This all lasted for about three hours until I demanded that Nathan be returned to sleep in his own crib. He slept soundly from this point onward and so did I. I actually woke up to my coffee in bed! What a fabulous way to wake up on my birthday.

I came downstairs and was determined to slow down my morning routine and enjoy my day.

I decided not to deal with this...(although I must admit I could not handle the mess anymore and cleaned the dishes a bit later)

dishes on birthday

but to watch a Mark Schultz A Night of Stories and Songs Live Concert on DVD instead. I've never felt so many different emotions at one time.

After the morning usuals (treatments, naps, photo editing, etc), I met up with my friend Breanne and her son Ayden. She treated me to a chicken baguette from Krave, one of my absolute favorite places to eat.

I was then treated by another friend to an hour and a half massage at Bella Boutique. Just what the doctor ordered after an extremely stressful year. Relaxing does not even begin to describe the way I felt. I made a great connection with the massage therapist and noticed that we shared many similarities in our lives. I have said it before and I will say it again, good people still exist!

Other than Nathan and Cystic Fibrosis, I talked about my love for the organization Now I Lay Me Down To Sleep and my secret desire to become a NILMDTS photographer.

I also shared some of the stories of my bloggie friends who have such simple yet seemingly unattainable needs. Take my little friend Phoenix for example. Phoenix is just a little bit older than Nathan and also has Cystic Fibrosis. His family desperately needs a garage to protect his little lungs from the cold Kansas winters so they can get him from the house to the car without the frigid cold air stunning his lungs. When Phoenix qualified for The Vest however, a costly medical airway clearance device used for CF, the goal of building a garage got pushed even farther away. Sometimes I absolutely do not understand God's plan, but I know God will take care of Phoenix.

Sorry about that small tangent. I will get back to my birthday now. After the massage I ate dinner with my father and friend at The Chatterbox Drive-In Restaurant. I could have chosen to eat anywhere but I was craving sweet potato fries and The Chatterbox serves the best in my area.

Then it was back to my house for some champagne and ice cream cake.

Father daughter

I think the gentleman in the bakery department of the supermarket was cake decoratingly challenged. What do you think?

crazy cake2

Being that it was my birthday and I could not take photographs of myself, these are the results. Memories are still memories and I love them, blurry cake pictures and all.

26 Bday Collage

And my little cake monster. Adorable memories but what a mess!
26 Bday Cake Monster Collage

Thank you for sharing my special day with me!


Thursday, July 23, 2009

uh oh

My father stopped by my house yesterday and surprised me with not only one but two swimsuits for my birthday which is tomorrow, July 24th. I can now enjoy swimming with my son who absolutely adores the water! I was beginning to feel like I was missing out on all the fun and memories for the sole reason that I did not fit into my old swimsuit anymore.

He picked up a total of four swimsuits, two sizes in each design just to be safe. And get this! They actually fit and look cute!

During this surprise visit, Nathan overheard his Grandpa say "uh oh" and immediately and clearly began repeating. Jay and I were able to coax Nathan into "uh oh'ing" again during tub time.

Please be forewarned that you will hear me saying "uh oh" a million times. If you may find that annoying, do not hit play. {smile} For everyone else, there are two really clear "uh oh's" in the beginning and the rest is a lot of adorable babbling of the "oh's"




from the bottom of my heart

thank you!

I wanted to express my gratitude for all the support that my bloggie friends left me on my last post.

Tricia, thank you for your prayers. I look forward to the unanticipated rewards that God has for our family.

Angela, thank you for your prayers and virtual hugs. I know that your family is struggling, like us. I talk about Pheonix all the time and was just telling my father how much I appreciate your support and that I wish I could come and build a garage for you guys.

Jen, thank you for the referral. I will definitely be looking into that. I need all the help I can get, even if it is only a dollar here and there. I am also looking into photography, graphic designing, quilting, and other odd jobs here and there.

Holly K, thank you for your thoughts, prayers, and encouragement. I have already seen generosity at work and am surprised more and more each day. Regardless of what some people say good people still exist!

Lacey, thank you for sharing your story. I pray that one day you will be able to see the heart babies and your friends while Jaxson is having fun at home.

Erin, thank you for the prayers. It was a difficult decision and still is. However, I am beginning to feel less stressed after finally having made a decision. It was inevitable and I am happy that there is a resolution.

Carla, even though the diseases are different I am finding more and more similarities between our families each day. I appreciate yours prayers and will continue to pray for you, Tim, Gavin, and Chelsea. I may as well pray for Yogi as well! I need to prepare for the day when God asks us to give up things, which He already has (cable, health insurance, etc). It is so difficult to hand over the steering wheel.

Erica, thank you for sharing a very similar story. It is always nice to have people who share similar struggles. I may be asking for advice from time to time. Staying home is not as easy as people like to think. Well staying home might be easier, but not staying home with child. {smile}

Lucy, you are absolutely right, nothing worth doing IS easy. Thank you for your story and words of encouragement. I am so happy to hear that you were able to share Jeffrey's brief life with him. I recently learned that my husband's cousin's cousin has a daughter with SMA.

Queen Mumma, thank you for sharing you similar circumstances. I appreciate your support and advice.

Elyse, I wish there was an instant fix as well but prayers will work too!

Jenney, welcome home. I was thinking of possibly starting my own day care at home but it is still just a thought. While you were away I started growing Moringa trees and wish I could send you one. Although I do not know how to send a live plant in the mail.

Lil Chris' Mom
, thank you. I sent you two emails this morning.

Michelle, thank you for the prayers, your blog is always a source of support for me.


Tuesday, July 21, 2009

breaking news

Before I go ahead and break some very important news, I am going to provide a little background information.

I graduated a semester early from Rutgers University in January of 2006 with a bachelor's degree in English. That spring, I took the Praxis exams (tests required to become a certified teacher) for elementary education and middle school science. Why not English? My original goal was to take a pre-medical course load in college (loads of science classes) so that I could apply to medical or dental school. I decided to major in English so I could add a little more variety to my daily course load.

After I graduated college I decided that I would rather go into teaching. That is when I started an alternate route teaching program to become certified. One of the requirements to become certified through the alternate route teaching program was to teach for an entire year with a provisional license. I was frantically calling schools to inquire about openings, applying, and interviewing for jobs. On July 24th, my birthday, in 2006 my father had come across the classifieds in a newspaper that one of his patients had brought into the office. My father does not normally receive the newspaper nor does he read it, especially the classifieds, but this day he did.

This is what appeared when he opened the classifieds section staring him right in the face.

jobposting jul24 2006

He immediately called me. This job was meant for me. Ten minute commute, in my area of concentration. I sent my paperwork immediately, went in for an interview, bit all of my nails off, and after a lot of ups and downs, I got the job!

I survived my first year thanks to my wonderful "mentor", fellow science teacher, and now very close friend, Kelly. I established very close relationship with several of my fellow teachers and thought I had found my "home" for the next thirty years. The students were wonderful and I loved almost every single minute of my job.

The maternity leave position ended in December of 2006 and I was rehired full time January 2007. My husband and I bought and moved into our townhouse and were married July 7th, 2007. I returned for my second year of teaching with my official certificate and discovered that I was pregnant a few short months later, December 15th, 2007.

I had a little time before I had to announce the pregnancy but had already discussed maternity leave plans with my husband. Being that my due date was August 22nd, 2008, I ultimately decided that I would take my maternity leave from September 1st through December 15th, 2008. At that point I would return to work and would enroll Nathan in day care.

After we found out that Nathan had Cystic Fibrosis, we very quickly learned how much work would be required to keep him healthy. After a few weeks of airway clearance treatments, medications, digestive enzymes, and being careful to avoid germs we knew that we needed to revise my original maternity leave plan. I submitted a request to extend my maternity leave for the remainder of the school year.

With the new school year approaching we needed to either find a place that would watch Nathan and administer his medications and treatments or we needed to revise my maternity leave again. My husband makes only enough money to pay our mortgage leaving most of our bills to the mercy of our quickly dwindling savings account.

We made all attempts to lower our existing bills. I terminated my COBRA coverage, saving us nearly a thousand dollars a month yet leaving my husband and I uninsured. Nathan is now covered under New Jersey's Family Care Health Insurance for a much smaller premium. I canceled our satellite television service, changed our cell phone plans, and lowered our car insurance coverage. I have been contacting our mortgage company since March about a loan modification but have had little luck until my husband contacted them a few weeks ago. Now they are apparently taking us seriously, escalating our case, and should be contacting us within the week. I hope.

I have thought long and hard about returning to teaching in September. Again, I loved my job. I thought of returning to work for my own sanity. At stay at home mother could very easily lose her mind. I would have had to possibly sacrifice my son's health however, a decision that I could not live with. A large portion of my salary would have undoubtedly gone toward his care. I may have even needed to pay someone to administer his treatments during the day and may have exposed him to unnecessary illnesses.

The decision has been finalized. Last Thursday I mailed my letter of resignation to my employer. It is a decision that was not taken lightly. It is a decision that I continue to struggle with. It is bittersweet and I still am not sure how to break the news to my fellow teachers who are now some of my closest friends. If you are reading this now, know that I am on the verge of tears.

When I went to the post office on Thursday, I sat in the car with Nathan for about ten minutes before I worked up the courage to drop the letter. When I finally did, I wanted to break apart the mailbox to take it back. It is done. The job is already posted. I know that it was the right decision for our family, for Nathan, but it is a extremely difficult decision nonetheless. Please, please, please, please pray for our family as we continue an extremely difficult financial journey. If we cannot modify our mortgage we will undoubtedly have to move.

Monday, July 20, 2009

refueling

At times we all need to refuel.

For my husband refueling entails taking a snooze.

baptism nap

I am still not quite sure how he managed to fall asleep at 2:15 in the afternoon at a party for Nathan's little buddy, Ayden. Several of us were a tad envious of my husband's ability to refuel in the midst all of the action.

I refueled this weekend as well. I did not lay on the sofa and catch up on sleep. Like that would ever happen anyway. I did not clean my house. I did not obsessively take photographs all weekend with my camera in hand.

I did refuel though. I spent both Saturday and Sunday with friends. One day and impromptu barbecue sans baby and the next day a fabulous baptism party for the little boy below.

Kittatiny Park Ayden-4

I forced myself to relax and to remove the lens cover only for shots like the one of my husband snoozing with all the guys hanging out a few feet behind him.

And I couldn't resist the one below of the bonfire, which was fueled and refueled many times throughout the evening.

baptism bonfire

Friday, July 17, 2009

Houston, we have a problem

Ever since this happened

beanbag

to The Ultimate Combo, treatments have been a nightmare.

I am working hard at getting The Ultimate Combo back into commision. The cover of the beanbag is washed and I am almost finished cleaning up the beans.

And yes, to Gavin's mommy over at the Groettum Family, I am still finding some of those darn beans in the strangest places, like in the phone port of the laptop.

IMG_3094

Alas, I think I have discovered the temporary solution to The Ultimate Combo dilemma. Let's pray that this works in the mean time.

no ultimate combo

Thursday, July 16, 2009

miracle tree update

It is now day 24 of my attempt to grow a moringa tree in the non-tropical northwest New Jersey. If you are wondering what the heck a moringa tree is, click here.

Here they are in all their glory on day 24.

moringa day24

It has come to my realization that each one of my 22 moringa seedlings is, in fact, a tree. What on earth am I going to do with 22 trees that cannot be planted outside because of my non-tropical and non-subtropical climate? Looks like I will be purchasing 22 large pots.

And a random aside to wrap things up, that's alot of McCafe's, don't you think? I snatched them from my father in laws garage. He uses them for the same purpose.

Tuesday, July 14, 2009

sick boy

I've got a sick boy on my hands

Nathan has been extremely irratable the past few days and I can only speculate why. Let the speculation begin.

I am half expecting a tooth (or two or three or four) to break through at any moment since he is gnawing at everything from my toes to the beans that should have been inside the bean bag and not all over the living room floor.

beanbag

And for your information The Bean Bag Incident occurred this morning. I will leave it at that and continue speculating.

Nathan has been showing the following symptoms:
1. Irritability. This word can barely describe the extent of his crankiness. Maybe I should write Irritability.
2. Coughing. Self explanatory.
3. Hoarse voice. That is hoarse noises not words.
4. Clumsiness. Tripping, falling, losing balance, etc resulting in bumps, bruises, bouts of screaming and crying, and most recently blood. See evidence below.

This evening moments before daddy arrived home, Nathan face planted on the deck and split his lip open.

fat lip-1-2

This was the first time that I have ever seen blood dripping from my son not by the work of a needle.

My fat lipped little sick boy looks exhausted with his red and puffy eyes. He refuses to rest and prefers verbalizing his discomfort for all to hear, ad infinitum.

fat lip-1

I have been driving him around in the car to comfort and quiet him, trying to preserve what is remaining of his hoarse little voice and my insanity.

But you know how Nathan is, always has a little smile left in him fat lip and all.

fat lip-1-3 copy



Monday, July 13, 2009

Not Me! Monday


Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

During the day I enjoy taking Nathan outside to play on the deck for the sole purpose of absorbing fresh air and vitamin D. I do not have the ulterior motive of containing him in a space other than the playroom. I also do not thoroughly enjoying taking a few deep breaths while sitting on a patio chair and admiring a previous project of mine and Grandpa Bill's.

Deck gate

Nathan often climbs right into his swimming pool while wearing his diaper and clothing. After he takes the plunge I always remove said articles. If his diaper had been dirty I most certainly would have taken him inside to clean him up before allowing him to continue playing. I would not and did not reach for the hose to do the job for me. Who would hose off their son's bottom? Not me!
And to wrap things up since I have not had a very busy weekend, I would not promote the temporary tattooing of toddlers. It is entirely too early to be applying temporary tattoos to our 10.5 month old.

I most certainly would not encourage tattoos by applying one to my husband's neck.

CFPapa tattoo

Nor would I encourage tattoos by choosing a pink skull and crossbones for myself.

CFMama tattoo

And never ever would I have applied a tribal lizard tattoo to Nathan's forearm. Even if I did give in and tattoo my tot, I would never approve of an additional tattoo of a snake wrapped around a sword. None of this ever happened, Not me!

Nathan tattoo

And for the record. Nathan was not photographed riding the pink scooter above or the pink car below. Something like that would most likely be photoshopped and not real. You know since only girls like pink things.

Block party-42-1

He was not completely obsessed with this car at the block party on Saturday.

Block party-60-1



Saturday, July 11, 2009

sharing sips

Yesterday we met up with our friends at the local state park for a picnic. Nathan was super excited to see his little buddy Ayden again.

Since we have last seen Ayden, he has completely mastered the art of sitting on his own and has developed one adorable personality. Nathan was showing off his sippy cup skills to Ayden who appeared incredibly interested. If sharing means caring then Nathan sure does care for his friend.

sippy cup collage

On multiple occasions Nathan has attempted to shove his bottle, sippy cup, spoon, fork, and anything else that he would normally shove into his own mouth into my mouth. My sweet sharing son, please spare me the dirt, grass, tree bark, and cat toys.