Sunday, July 31, 2011

Foyer Makeover

Something as simple as a half priced chandelier found on the top rack at Lowe's makes a big difference in a room, or a foyer in this case. Here is our old builder's special chandelier. Not bad, pretty dusty...oops.

foyer before

I am very grateful that my husband is not afraid of very tall ladders because I could only make it half way up.  Nathan too but that's because I stopped him from going any higher.

foyer makeover

We probably should have started a lot sooner because we were running out of daylight and we couldn't exactly turn on the chandelier.  The new chandelier, which was on clearance when I found it, was very heavy.  I tried to hold it from the balcony while Jay wired it but I couldn't hold it any longer.

foyer makeover 02

We used the energy efficient light bulbs so although there are 6 of them, it is like we only have 1-2 running, and it is much brighter because our old chandelier only had 3 (energy efficient) bulbs.

foyer after

Saturday, July 30, 2011

Peyton's Car Seat Makeover

Here is how Radek's infant car seat looked before.

carseat bbefore

This photo is not his actual car seat since I forgot to take a before photo, this one was from a listing on ebay.

And here is Peyton's new car seat.

peyton carseat makeover - 01

Complete with girly satin ruffle, of course.

peyton carseat makeover - 02

Please continue to pray for Peyton and her family. She is still in the NICU and was just introduced to enzymes.  She is now eating 20 cc's but needs to eat 35 cc's before she can begin breastfeeding and 50 cc's before she can go home.  Hopefully the enzymes will help her gain some weight and feel better.

Friday, July 29, 2011

My 28th {Surprise} Birthday Party

The hubby lacked in the preparation department for mother's day this year but he more than made up for it on my birthday.  After completing my hour and a half scavenger hunt for my birthday present (post to come) I thought I would just sit around, relax, and play with my new iPod touch all day.  That is as soon as Jay finished doing whatever he wanted to do to it.

Then out of nowhere my husband says to me, "if you want to do any cleaning now would be the time because there are going to be alot of people showing up soon".  After initially wanting to slap him for suggesting that I clean on my birthday, I was like "wait, back up, people, coming, here, alot of people??!".

It was a fantastic birthday.  And I really want to go watch Dexter with that sweet husband of mine now so I am just going to post a few photos from the after surprise birthday party.  I have the scavenger hunt photos on my cell phone still.

Teagan with Grandma.

christina birthday - 02

Hurry up with the food, Grandma!

christina birthday - 01

Nathan's friend, Charlotte. He wants to bring her to Disney World (along with Ayden, of course). I don't think Ayden will object.

christina birthday - 03

And Teagan asleep on Gappa's belly. Never fail, works every time!!! Seriously may call him on some of those "bad nights".

christina birthday - 06

Nathan's big friend, Hannah. He loves her, she is so goofy yet so mature. Basically, a lot of fun to be around.

christina birthday - 04

Nathan wanted Hannah to help us blow out the candles too. I can use all the help I can get. Yummy, triple chocolate cake.

christina birthday - 05

Just too adorable, Charlotte.

christina birthday - 07

christina birthday - 12

She is actually quite elusive. I think that's why I like to photograph her, I like the challenge.

christina birthday - 10

And then some bubbles with Gappa Frank.

christina birthday - 13

and of course some slippery wipe-outs too!

christina birthday - 14

Thursday, July 28, 2011

Maintenance Medications

Nathan is still culturing pseudomonas and MRSA.  I almost expected this, you know how you can trick yourself into not being disappointed if you already expect and anticipate the bad news.  I guess you can call it pessimistic thinking but I personally would rather expect sputum cultures filled to the brim with nasty bacteria all the time so if perhaps the cultures comes back clean I can be pleasantly surprised.

The good news is that Nathan looks and appears to be feeling ok.  Also he has gained over 2 pounds since the previous clinic visit.

The somewhat stinky news is that he is going back on Tobi, this time he is starting an indefinite cycle of 28 days on and 28 days off.  This medication is a blessing but also a minor inconvenience for an active boy.  With 30 minutes treatments twice a day, that's one extra hour that he has to sit still.  But I will look on the bright side, it will be treating the pseudomonas and it means an extra hour of snuggling and Super Mario.

He is still going to stay on the azithromycin, 3 times a week, for the pseudomonas, and is beginning Bactrim twice daily, for the MRSA, indefinitely.  Indefinitely meaning there is no end in sight for any of the 3 antibiotics (Tobi, Zithromax, Bactrim) until his doctor changes the plan.

I am very thankful for GTasks, without which I would never remember to give Nathan all of his daily medications and supplements.

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
Zithromax, 6 ml M, W, F
Bactrim, twice daily
Zrytex, 2.5 ml daily
Prevacid 15mg daily

TOBI 2x daily for 28 days on 28 days off, via neb

Vest 30 minutes, 2x daily-3x daily

Laptop

Fedex tried to deliver my repaired laptop yesterday but I wasn't home to accept the delivery.  I can't wait to have it back!

I have so much work to do and even though I thought I could get the work done in our dungeon office, I can't.  So excited to have my laptop back again!

Sidenote, if you read this very boring post can you please try to leave a quick comment.  Some readers have been emailing me that they are unable to comment and I would like to try to fix the problem.  If you are unable to comment can you please let me know either @cfmama on twitter, email nathansfight (at) gmail (dot) com, or on my facebook page.

Monday, July 25, 2011

Little Lifesavers

My laptop is my lifesaver.  It has become apparent to me that without my laptop it is impossible to keep up with everything that is going on.  I have pictures to upload, clients photos to finish, gifts to order, bills to pay, all of which are much simpler to do on a laptop than on a smartphone or on a desktop computer down in my basement.  I am currently down here in the dungeon with both kids, one in the pack and play and the other hopefully not exploring anything too dangerous, while I try to get something done real quick for a client.

My laptop is back in the hands of Dell for the second time.  It needs a new motherboard under warranty and the first time it came back to us with only a video cable changed.  I don't know what I will do if the Dell techs send it back unfixed for the second time.

Hopefully my husband will get home while I am working on the photos and I will get a few minutes to upload the photos from my birthday yesterday.  My husband planned an entire day of fun for me including a lengthy birthday present scavenger hunt and a surprise party.  I can't wait to share those photos with you all!

But first, since my time down here may be limited, I must tend to business first.  My children can go from happy to not so happy in seconds flat.  I guess that is a trait of all kids but I must scoot!

Friday, July 22, 2011

Babies are flexible

How can she be comfortable sleeping in this position?

teagan asleep 01

Teagan has been sleeping horribly lately.

teagan asleep 02

Take my word for it.

teagan asleep 03

Wednesday, July 20, 2011

Holy Kilo! (Clinic Day)

We spent the majority of the day at Nathan's pulmonologist and CF clinic. I was hoping to get a last minute appointment with a gastroenterologist to see if there was a medical explanation for his lack of desire to eat. Unfortunately that did not happen today.

The good news is that Nathan gained a whole kilogram since his last clinic visit. That's 2.2 pounds!!!

Initially, I was disappointed. Don't get me wrong, I was and am ecstatic about the weight gain. Nathan's weight gain is directly proportional to the effort I put into trying to fulfill his caloric and nutritional requirements.

The reason I was disappointed was because I had been calling the nurse weekly, sometimes more, in despair. I didn't think my anxiety would be taken seriously given the tremendous weight gain. He gained weight because we try hard and wear ourselves out every single day.

Luckily that was not the case. The team was also ecstatic but knew the problem needed to be addressed before I lost my sanity.

Basically, I am going to have Nathan undergo a full evaluation, behavioral, speech (even though he speaks nonstop), feeding for potential sensory and texture issues. I'll try anything.

As for his lungs, they sounded great. Will be waiting for the results of sputum culture to see what's up. Last time he cultured pseudomonas and MRSA.

And me, I am celebrating a small victory with a bowl of poptella (popcorn + nutella) and a foot on the mend, beginning to feel much better.

Tuesday, July 19, 2011

Peyton on My Mind

Ever since my friend Jamie's daughter was born last week, 5 weeks early, I haven't been able to get her and her family off my mind.

It hurts me deeply to know what they are going through right now. Peyton was born with meconium ileus, transferred to a hospital away from her mother to undergo surgery, had nearly half of her small intestine removed and a colostomy bag temporarily placed, and has another surgery down the road to repair the intestine.

Jamie, you are an incredibly strong woman and mother. I hate that you are going through this. I hate that Shane was not permitted to see the birth of his daughter, I hate that you have been put in the position of being forced to split your time between two children.

It reminds me of when Nathan was admitted to the hospital but NOWHERE near as severe. I remember being tortured inside that I couldn't just keep Teagan in the hospital and keep my two babies together. I couldn't leave Teagan because she wouldn't and still won't take a bottle. So I had to drive back and forth every day to switch with Jay. Every single night that I left Nathan and drove home with Teagan, I sobbed hysterically in the car.

I woke up early every day to rush out the door and get back to the hospital and it wore me out very quickly. I was exhausted and stressed but I had one advantage over you, Jamie, I was not recovering from a cesarean section. I don't know if you will read this Jamie, but please remember, take care of yourself, the last thing you need right now is to hemorrhage. Radek needs you to be healthy just as much if not more than precious little Peyton does.

I have been working hard on finishing Peyton's car seat cover. I am hoping she will need it in the very near future.  Teagan had a very irritable, mostly sleepless day, which held me back but did not stop me from making a little progress on the cover.

Peyton car seat cover2

Monday, July 18, 2011

Ouch, my foot hurts

I hate complaining and I really do have a high pain tolerance, take this for instance, however my foot is killing me, really some of the worst pain I have ever endured, and it seems I've been complaining non stop for the past week.

Ever since I ran that 10k last weekend in Central Park, Boomer's Cystic Fibrosis Run to Breathe, I've been hobbling around in pain.  And yes, I know I really should have gone to a doctor by now, but I'm kinda just hoping I will wake up one morning and everything will be better.

boomer run to breathe

So in anticipation of being on my feet for over 10 hours to photograph a wedding on Saturday, I purchased these highly fashionable walking shoes.

new balance walking sneakers

They are wide, comfortable, and very supportive.  Without these shoes I doubt I would have made it past the wedding ceremony.  Well it was the shoes and 600 mg of advil.

And now I am wearing an orthotic boot I borrowed from a friend.  Only problem is the two and a half size difference between my foot and hers.  So my foot may eventually start feeling better but I may end up with a broken toe since it is hanging over the edge.

I think I will give my foot another week or so to start feeling better and then I will have to suck it up and make an appointment with a specialist.  Originally I thought it was peroneal tendinitis because of where the pain is localized but I can't really rule out a stress fracture at this point.

Friday, July 15, 2011

Laughter

Mama laughing, baby laughing, life is good.

Butternut Squash Soup

Butternut squash is one of my favorite things to eat, especially in the Autumn.  Even though it is currently the middle of the summer, the air conditioning is blasting, and I figured it was a good enough time as any to make some butternut squash soup.  I knew Teagan would enjoy it and Nathan would probably enjoy it as well if he would only taste it.

Using the Beaba BabyCook, that I bought used on Craigslist, I steamed equal amounts of butternut squash, chopped onions, and carrots.  I am pretty sure I filled it to the 3rd line with water.  I would have added other ingredients like apples and leeks if I had them on hand.

beaba butternut squash soup - 01

Once they were done steaming, I emptied some but not all of the water, added a little coconut oil, and pureed it until smooth.  At this point I added some salt, pepper, nutmeg, and Greek yogurt to make it creamy.  I suppose you could use heavy cream, milk, or cream cheese instead but I prefer using something high in protein.

beaba butternut squash soup - 02

Teagan and I shared a warm bowl immediately with extra nutmeg sprinkled right on top. But she also enjoyed the leftovers mixed in with wagon wheel pastas and Parmesan cheese.

beaba butternut squash soup - 03

Thursday, July 14, 2011

ten months

Before I forget, here are Teagan's ten month photos. Forgetting is so easy to do nowadays, especially with Jay working out of the house again, and me hobbling around with peroneal tendinitis from Boomer's CF Run to Breathe 10k.

teagan 10 months calendar - 002

teagan 10 months calendar - 004-2

teagan 10 months calendar - 004

teagan 10 months calendar - 003

teagan 10 months calendar - 001

She still only has 8 teeth, 4 on the top and 4 on the bottom.  I am beginning to suspect another tooth will be poking through her gums soon enough, judging by the lack of good sleep and excessive irritability lately.

Here are the rest of Teagan's monthly baby photos.

Teagan, 10+ months

She is still ten months old, almost halfway to being eleven months old.

I forgot to post her ten month photo on the calendar, and did not realize it until it was pointed out to me.  I'll have to upload them.

She loves climbing into this chair all by herself, rocking, standing, sitting backwards, doing all sorts of crazy daredevil things.

Teagan rocking

We got the bright idea to put it in the non rocking position.  It only makes it a little safer.

I often find her lounging backwards.  That's hard to visualize but it is adorable.   I'm going to have to sneak a picture at some point.

OH! and she started saying "Uh Oh" this morning.  I love it.

Right now we are watching Oswald on Nick Jr. and I just caught her peeking around to see my face, and smiling, trying to catch my attention.  Time to go!

Wednesday, July 13, 2011

Bronchoscopy: Worth the Risk?

[caption id="" align="alignright" width="229" caption="Photo Credit: Yale Medical Group"][/caption]

The topic of performing an investigative bronchoscopy on Nathan has been brought up on numerous occasions at Nathan's former clinic. Although I understood the basics of a bronchoscopy, a scope is inserted so you can visualize the inside of the airways, it was still a procedure that I was not completely comfortable with. Not only is it an invasive procedure with the risk of complications but if is just performed for no other reason than to take a look around it almost seems unnecessary.

 

Since having a child with a chronic illness requires working closely with a specialist, in our case a pulmonologist you try to trust the judgment of the doctor. I am learning that you also need to communicate and question everything and fight for what you believe is the best path for your child.

Nathan's new pulmonoloigst has yet to suggest a bronchoscopy. I am open to the procedure if there is reason to believe something is wrong down there in his lungs. But I am not okay with putting Nathan under anesthesia for the sole purpose of identifying the pseudomonas that is surely in his lungs. My friend, mother of 2 children with CF, also frequently reminded me that the procedure could also introduce new bacteria into the lungs, you know since bacteria such as pseudomonas commonly grows on every surface.

Well, wouldn't you know that a trial was performed that showed exactly what she suspected and warned me of.  Read, Lung Checks No Help for CF Babies.
Invasive monitoring for lung colonization in infants with cystic fibrosis doesn't improve their outcomes...[bronchoscopies] didn't reduce Pseudomonas aeruginosa infection or structural lung injury by age 5 any more than reliance on clinical signs and throat swabs alone.

Good to know!  I think I will stick to observing my son in his normal daily activities, watching how he is behaving, listening to how he is coughing and breathing, and relying on the results of his coughed up sputum cultures.

Tuesday, July 12, 2011

I am boycotting crayons

I am boycotting crayones for no reason in particular except for the fact that I looked down while cleaning the dishes only to see my 10 month old coloring back and forth with a blue crayon all over our light colored kitchen tiles.

Teagan crayon - 01

Quiet, content, happy as could be to see what she created.

Teagan crayon - 02

The look of surprise as she was caught in the act.

Teagan crayon - 03

No remorse, pure bliss, crayon bits on chin and all. Thank God crayons are non toxic and somewhat easy to scrub off tiled floor. But as she proceeded to color the kitchen cabinets, I decided it was time to hide the crayons. So now we are on a short term break from crayons.

Monday, July 11, 2011

Friday, July 8, 2011

Boomer's Cystic Fibrosis Run to Breath

Here is the route through Central Park for tomorrow's 10k (6.2 miles). This will be my first 10k. I am nervous but looking forward to running with my husband in support of Nathan and everyone else living with Cystic Fibrosis and in memory of those who have once lived with Cystic Fibrosis. Jerry Cahill, on a waiting list for a double lung transplant at age 55, will be running the 10k with an oxygen tank on his back. Now, that's my inspiration!

boomers cystic fibrosis run to breathe10k map

Please keep us in your thoughts and prayers, as we will be driving into New York City at 5:30 am to register and pick up our race numbers.  Also keep Teagan in your thoughts and prayers, as she will be waking up at home with her grandparents.  I am sure she will nurse before we leave but she will have to enjoy some of Gappa Bill's pancakes and then wash it down with some milk when I return home!

Goodnight everyone!  Finishing up Nathan's treatments and getting as much sleep as I can.

Thank you to everyone who donated and helped us reach our fundraising goal!  If you have not donated, it is never too late.

 

Thursday, July 7, 2011

Child proof, not Teagan proof

Teagan has been fixated on trying to open the kitchen cabinets despite the cabinet locks.

child proof - 02

Specifically, she has been focusing her attention on the 3 most dangerous cabinets in our kitchen.  The cabinet next to the fridge contains the less frequently accessed prescription medications.  The daily prescriptions have been moved to the upper cabinets for my convenience.  The cabinets under the kitchen sink contain cleaning products galore.

child proof - 03

She has been watching my every move and observing how I open these cabinets while she cannot.

child proof - 01

Even though there are 9 lower cabinets in our kitchen, she spends her time banging these 3 kitchen cabinet doors open and closed as far as they will go.

child proof - 04

She also peers and reaches her arm inside the cabinets as far as it will go.

child proof - 05

See that empty prescription bottle on the floor, that was a decoy, Teagan was not fooled.

child proof - 06

And she is not happy with these child proof locks.

child proof - 07

Until of course she managed to get a toothbrush in her hands.

child proof - 08

Oh how quickly baby tears can turn into shear joy.

child proof - 09

One minute she is in the middle of a screaming temper tantrum, and the next she is staring off into the corners of the kitchen so happy with her new treasure.

child proof - 10

I am sorry Teagan that you never got to experience the freedom of unlocked kitchen cabinets.  You can thank your big brother for a completely child proofed house.

Nathan even helped to install the baby gates and safety locks.