Friday, April 30, 2010

Experiencing Ikea (our day in videos)

Ever get that feeling that you just have to get out of this house? Well I basically get that feeling everyday but today Jay was home from work and decided that he needed to get out. So we quickly decided it was time to introduce Nathan to Ikea. We haven't been to Ikea since last Spring and it is always fun to walk around and get ideas.

Nathan skipped through the showrooms, actually it is more like galloping but he repeats "skip" the entire time so we call it skipping. He was having a blast climbing on all the beds and chairs and touching everything and then we got to Children's Ikea where there was a slide!



We spent about 15 minutes with Nathan climbing up and sliding down and then when we tried to coax him to go to the next section he turned around and went right back to the slide. Finally Jay had to pick him up and carry him to the next section kicking and screaming. But then Nathan found the ducks.



Actually, there were alot of different stuffed animals but Nathan was only interested in the ducks that were sitting in this weird shoe shaped car. You can see his obsession by watching the video clip above if you haven't done so already. Notice how the odd one out, the bunny in a carrot car, really confused him but all the ducks went straight into the pink crib? He was cracking us up. Then after about 15 minutes here Jay carried Nathan, kicking and screaming, to the next section where there was a toy kitchen.



This helped him forget about the ducks. He was immediately drawn to the tiny pots and pans and was cooking on the stove top, which illuminates red at the touch of a button! At the end of the video you can hear him repeat "hot" but then place his hand right on the imaginary burner. Thank goodness he is very good at home with things that are really hot. He also washed the pots and his hands while saying "wash". Still not quite sure when he picked up that word.

I really wanted to get him the kitchen but with a price tag of $100 I decided to settle on the set of pots and pans for $10. He seems to really enjoy them at home even without the kitchen, my ears on the other hand are not too fond of them.

But then it was time for Jay to carry him, kicking and screaming throughout the remainder of the store, Ikea's Marketplace. Actually we strapped him into the stroller and breezed through the lower level while he was screaming and saying "all done!" and "alright!".

After checking out we stopped to get a quick snack and you will never guess who decided to eat. When given the choice between pizza and ice cream, Nathan responded pee-cee. He does know how to say pizza but I understood what he was getting at. Not only did he want and eat most of the pizza but he also demanded my ice cream cone.





What a fun day, we all enjoyed our impromptu trip to Ikea.

Thursday, April 29, 2010

23 weeks pregnant

Technically 23 weeks and 1 day pregnant but I took this belly photograph yesterday.

23 week belly

I am still feeling pretty comfortable in the in between stage of pregnancy, no longer nauseous and vomiting and not yet incredibly enormous. I started out "overweight" with this pregnancy which is a far cry from my first pregnancy where I started out "underweight". This makes me laugh a little. I just need to be more careful about what and how much I eat this time around.

The recommended weight gain is between 15 and 25 pounds and so far I've gained 13. I am trying to eat more protein and less garbage so hopefully I can slow down the weight gain in the last 17 weeks.

I've been scouring our local library for books and videos to prepare for a different type of childbirth this time around. Not that I regret my decision for a medicated childbirth with Nathan but I've been reading about how epidurals and other medications can really affect the unborn and newborn baby. I love free books and videos! My friend even loaned me a few books.

This is what I have been reading over the past week:





And this DVD (Ricki Lake's The Business of Being Born) was highly recommended by a friend from high school (also borrowed from library for free):



Now all I have to do is get my husband to read the books (at least one of them) and watch the video with me.

Previous baby belly photos:
12 week baby belly
16 week baby belly
21 week baby belly
22 week baby belly

Being 23 weeks pregnant can be difficult at times, to learn more about it, please visit PregnancyCorner.com.

Wednesday, April 28, 2010

Finally FOR SALE: Nathan's 2010 CF T-shirt

Great news! Since I did not change the design on the front of the t-shirt since last year, the screen printer does not have to charge me screen set up fees for the front! Last year the t-shirts were $20 per shirt and I was overwhelmed by the fantastic response. This year I managed to trim the costs a little and reduce the price per shirt to $15 a shirt.

Here are the nitty gritty details. The shirts will be the same style as last year - Hanes 50 50 mix of cotton/polyester in a fabulous orange which is super comfortable and doesn't wrinkle as easy as the 100% cotton. Youth and adult sizes are available. Size and payment options appear at the bottom of this post.

Again the cost is $15 per shirt and ALL profits (approximately $4 per shirt) will benefit the Cystic Fibrosis Foundation (CFF). Nearly 90 cents of every dollar raised helps CFF research new drugs, treatments, and potential cures. In 2010 alone the CFF has achieved the following research milestones:

1. VX-809 which treats the basic CF defect shows encouraging results in Phase 2 trials.

2. There are more than 30 potential therapies in the CFF development pipeline.

3. FDA approves
Cayston, an inhaled antibiotic to treat Pseudomonas aeruginosa.

All this in 2010! What will 2011 bring?

Would you like to purchase a shirt to help CFF find a cure for Nathan and all his CF friends? I would like to place the order ASAP so I need your help in getting me sizes immediately. Once I place the order it is likely to take 2 weeks to process and ship to me. If I cannot get this all done in time for the walk on May 16th at Van Saun Park in Paramus, I will still be donating all profits from the shirt sale to the CFF. You can also make your own donation to the Cystic Fibrosis Foundation here without purchasing a shirt.

If you would like to pay securely online with a credit card, please select your size(s) below and click "Add to Cart" to check out with paypal. If you would like your shirt(s) shipped ($3 extra for first shirt, $1 for each additional shirt) make sure you provide a shipping address. Otherwise, if you are local to me in Northwest NJ, we can make arrangements for pick up.





ADULT SIZES









YOUTH SIZES










If paying online and using paypal makes you uncomfortable, please email me at nathansfight at gmail dot com with your desired size(s) and we can arrange an alternate payment method.

Two new additions...

...to Nathan's current treatment regimen - Prevacid and Miralax.

The Prevacid (15 mg) he will take every night before bed for at least the next 90 days for reflux. He has been waking up crying and swallowing extremely hard. His doctor wants to see if this is reflux related.

Today we began giving Nathan a prescription version of Miralax to get things moving. Usually Nathan experiences the opposite problem, loose stools, but other than this afternoon he has not had a bowel movement since Sunday. Luckily he drank the entire dose all at once with 4 ounces of juice.

Nathan's Current Medications and Treatments

Last updated: 3/27/2010
Age: 20 months
Gene Types: Delta F508 (∆F508) and 711+1G→T

Albuterol: 2 times a day, every 4 hours as needed
Hypertonic Saline: 2 times a day
Vest: 30 minutes 2 times a day
TOBI: 2 times a day (28 days on, 28 days off), currently off
Bactrim: currently off
Cipro: currently off
Creon 6: 4 capsules per 8 ounce bottle, 2-3 per meal
ADEK: 2 ml once a day
Ferinsol:
Prevacid: 15 mg before bed for reflux
Miralax: 8.5 grams with 4 ounces of juice once a day
Salt: 1/4 tsp. once a day

Weight: 26.7 lbs (50th %)
Height: 34.4 inches(90th %)

Tuesday, April 27, 2010

CF clinic this morning

You know what that means, alot of All done's and Bye bye's that will begin the moment we arrive. I've got a lot of questions and praying for a good sputum culture. Nathan has been culturing pseudomonas aeruginosa (PA) on and off since he was only a couple of months old.

Not to be grim but CF parents tend to worry about PA a lot because it is difficult to completely eradicate and because the respiratory failure associated with PA is the ultimate cause of death in many CFer's. This is why many doctors take a very aggressive approach at eradicating PA early in life. I can only pray that the many rounds of antibiotics (TOBI, Cipro, Bactrim) have worked thus far.

Monday, April 26, 2010

Finding cloth diapers that fit

Right when I thought my cloth diaper stash was sufficient for our daily needs...

cloth diaper stash

...Nathan began to outgrow them.

He is only 26-27 pounds so he should technically still be fine in a size 4 disposable diaper but now needs a size 6 disposable diaper because of his stature. He is over 33 inches tall and the rise on almost all of our existing cloth (and disposable) diapers is too short.

Don't get me wrong, I love all of our diapers (GroBaby, BumGenius, Rumparooz, etc.) but I had to begin searching for larger diapers to fit Nathan. Nathan is not yet ready for potty training and training pants, and neither am I.

Here you can see the difference in rise (the distance between the top of the front and the top of the rear of the diaper) between the diapers we have been using to the diapers we just purchased.

cd compare rise

Based on the advice of other cloth diaperers, I decided to try out Happy Heiny's. The best part...he still has room to grow in them, not to mention the adorable colors and patterns they come in.

Even daddy approves.

cd jay

Saturday, April 24, 2010

Unfair napping habits

After we transitioned Nathan from crib to toddler bed nap time disappeared.

Sometimes, if we are lucky, he will fall asleep during treatments. And sometimes, if we are even luckier, he will stay asleep on my lap after treatments. If we try to take his Vest off or move him he will 99% of the time wake up. I've learned from experience to utilize the bathroom, eat, and drink before treatments just in case I am trapped for an extended period of time.

It would be better for him to stay awake during treatments because he could actually cough and actively clear his airways but in the same token he really needs sleep. He is so overtired from not napping consistently.

Here I am with Nathan napping during treatments on one of those lucky days.

mama and nathan tx2

But do you know what is really unfair? Every time we have my in laws watch Nathan, he naps! Not only short naps, naps that last hours! He has been known to curl up on the sofa or chair with his soft blanky and fall asleep watching one of his shows. He has also been known to fall asleep on either grandma or grandpa's belly. This is what I call very unfair napping.

Wednesday, April 21, 2010

22 weeks pregnant

Last Tuesday we had our 21 week ultrasound. I was scheduled for a level 2 anatomy scan because of possibility of the baby being born with Cystic Fibrosis.



Not only was I measuring properly for 21 weeks gestation but everything looked normal and we found out the gender. This was a new experience for us as we did not find out the gender with our first pregnancy. My husband and I were both expecting the technician to tell us we were having a boy and were shocked when she said "It's a GIRL!". At this point I couldn't stop giggling like a little school girl. I don't know how she continued to take all the measurements and screen shots she need.



On the way home from the ultrasound I stopped at the mall with my mother in law just to pick up a few items, all on sale of course. As always she found better sales than I did. The next day I went on a small online shopping spree for a few newborn necessities since people rarely buy size newborn as gifts.

This week I had a prenatal checkup and again everything looked and sounded good. I talked to my midwife about some of my delivery concerns. I am contemplating having a natural water birth but have concerns. We do not know if our baby girl with have CF and will most likely not be finding out unless one of our next ultrasounds reveals echogenic bowel*. What would happen if I delivered as planned and the baby was born with muconeum ileus**? No doubt the baby would be transferred to a nearby medical center for surgery. You better believe that if this happens I will not be staying at the hospital where I delivered. So many unknowns. It may seem that I am not scared but the truth is - I am.

* echogenic bowel - increased brightness of the fetal bowel noted on second trimester ultrasound

** muconeum ileus - an obstruction in the lower part of the small intestine caused by very thick meconium (material that collects in the GI tract of the fetus)

And a 22 week baby belly photo.

22 weeks baby belly

Previous baby belly photos:
12 week baby belly
16 week baby belly
21 week baby belly

Being 22 weeks pregnant can be difficult at times, to learn more about it, please visit PregnancyCorner.com.

Tuesday, April 20, 2010

A Way of Life

The other day my husband and I saw Nathan pick up one of the hoses to his Vest and start playing with it, all the while with a huge smile on his face.

CF has become a way of life.

vest hose

vest hose-2

Of course I always feel bad that I have to subject Nathan to airway treatments a minimum of twice a day but I realized to him this is normal. It is nice to see that he currently accepts his normal.

Some mornings while he is busy playing with his matchbox cars or getting his morning dose of Sesame Street, he will notice me assembling his nebulizer and Vest and matter of factly look at me and say "No". But nevertheless, these tasks are all part of CF and are now our way of life.

Sunday, April 18, 2010

CF Conference Findings Part 1...Mucous and Airway Clearance

This is Part 1 of what I learned while attending the Cystic Fibrosis Learning Center's Continuum of Care Conference.

Normal mucous vs. CF mucous


Everyone has mucous lining their airways. Normal mucous is thin and is essential to a healthy airway. In CF airways, this mucous is thick and sticky. The presence of bacteria calls for white blood cells to fight infection but eventually the white blood cells die. So along with different bacteria and fungi in the airways, CFers also have the waste products of dead white blood cells (DNA). This just thickens the mucous even more.

Nebulized Medications used to aid in Airway Clearance

Bronchodilators such as Albuterol or Xopenex help open the airways that move air to or from the lungs.

Mucolytics loosen the mucous. Hypertonic Saline hydrates the airways and mobilizes mucous. Pulmozyme breaks down the leftover DNA from dead white blood cells. This helps CFers cough out the thick secretions.

The difference between Hypertonic Saline and Pulmozyme and how they can work together.

Before the CF Conference I was under the impression that Hypertonic Saline and Pulmozyme had the same basic function, to thin the mucous, but learned that both function quite differently. Often used in conjunction, the two drugs have amazing results and have proven to raise PFT's (pulmonary function test) and reduce the occurrence of infection.

Here are two photos I borrowed from Pulmozyme's website for Health Care Professionals, edited to make sense to me and you of course.

normal mucus transport

CF mucus transport

Airway Loosening vs. Airway CLEARance

If you have an CF infant or toddler like me, you are probably doing your clinic's recommended nebulized medications and airway clearance techniques (ACTs) but your child may or may not be expectorating or coughing out any mucous. Yes, bronchodilators used in conjunction with mucolytics and different ACTs (the Vest in our case) do an amazing job at loosening the mucous but the main goal is to clear the mucous out of the lungs.

Ways to get rid of the mucous

The main goal of Airways Clearance is to CLEAR the lungs of the thick, sticky, bacteria ridden mucous. In an ideal world, a CFer would perform all the recommended treatments and then cough the mucous up and out of the lungs. Sometimes I hear Nathan cough up mucous and then swallow really hard. It would be better for him to cough the mucous out than to swallow the empty calories creating the feeling of fullness and possibly introducing unnecessary bacteria to another system of the body. But nevertheless it is better to have to mucous out of the lungs!

So we've been working on ways to get Nathan coughing. My recommendation is to get your baby or toddler laughing. Do whatever you have to do to get the air moving...tickling works as does making a fool of yourself, acting like a gorilla or Grover, making strange noises, etc.

I've also noticed that kids are sponges and copy everything adults do so why not cough yourself and hope your little copy cat does the same, it works for us. Just last night we asked Nathan to cough, shockingly he complied. Of course it was followed by the "good boy" reinforcement letting him know that this is an action we approve of.

Ways to introduce your baby/toddler to Airway CLEARance:

1. BLOWING - Teach your child to blow bubbles (not eat them), windmills, into straws. All are great introductions to huffing (a controlled breathing technique/gentle cough which ultimately releases the trapped air from the smaller airways).

2. BOUNCING/JUMPING - Trampolines are not only a great way to get the air moving and cause coughing but good for getting that albuterol related energy out. Bounce your baby on your knee or bounce with your baby/toddler on an exercise ball.



Websites I recommend visiting:

The Cystic Fibrosis Learning Center set up the Continuum of Care Conference which targeted healthcare professionals from CF care centers and family members/caregivers of patients with CF. If it were not for the generous donations that made it possible for the ladder audience to attend free of charge my husband and I would not have been able to attend. So a huge thank you to the donors!

Pulmozyme's Cystic Fibrosis Community is "a place for people of all ages to connect and learn about life with cystic fibrosis. There are [age appropriate] stories, games, links, tips, and much more."

There will be many more websites to come, these are only a few for now. I don't want to overwhelm anyone.

Thursday, April 15, 2010

Nathan's 2010 CF T-Shirt

Here is Nathan's 2010 CF T-shirt design.

The front is the same as last year but I switched up the back. I was thinking orange as the shirt color but until I get the quotes back from the screen printer I won't have an exact color or price. I am hoping the price will be much lower this year while at the same time leaving a little room to make a nice donation to the Cystic Fibrosis Foundation. I am also going to get several different quotes to compare so I will keep you all updated.

Hopefully I can begin taking pre orders as early as next week!

And remember to come walk with us on May 16th at Van Saun Park in Paramus. You can also make your own donation to the Cystic Fibrosis Foundation here.

total shirt

Wednesday, April 14, 2010

Wordless Wednesday - 21 weeks

21 week belly

Previous baby belly photos:
12 week baby belly
16 week baby belly

Being 21 weeks pregnant can be difficult at times, to learn more about it, please visit PregnancyCorner.com.

For more Wordless Wednesday visit 5 Minutes for Mom.

Tuesday, April 13, 2010

It's a ...

DSC04219

Pink or Blue

Today is the day.

Gender ultrasound day.

Pink or blue day.

Snakes and snails and puppy dog tails day.

Or maybe a sugar and spice and everything nice day.

A little brother for Nathan to have as a best bud.

Or perhaps a little sister for him to love and adore.

Someone to rough around with, hopefully share his cars with.

Or the addition of ruffles, polka dots, ribbons and bows.

Either way all three of us will be tickled pink, or blue.

Bottom line is: Our newest babe is yet another gift from God. We pray for healthy above all.

In a few short hours we will be taking our first peek at Baby #2. I am terribly excited.

Monday, April 12, 2010

Oops!...He did it again

He did it once...He did it again.

Nesquick Mess Part 2a

I am really going to have to learn my lesson and keep the Strawberry Nesquick under lock and key.

Nesquick Mess Part 2b

Sunday, April 11, 2010

Waking up

Most mornings we wake up like this:

waking up

But some mornings, including today, we wake up like this:

waking up2

I am completely convinced that Nathan inherited my horrible seasonal allergies. He kept waking up crying. My husband, who is the one on nighttime binky finding and replacing duty, said Nathan was swallowing hard and making gurgling sounds through his nasal passages. After he woke up the second time I had Jay bring Nathan into our bed and gave him an antihistamine. Finally he fell asleep and seemed comfortable for the rest of the night. I am going to call the clinic first thing Monday morning to see if I should add Zyrtec to our daily medicine regime.

Friday, April 9, 2010

Highlights

I am exhausted this evening and it's not from chasing after Nathan for once. Jay's parents took him for the afternoon and I got a nice break. I originally thought I would do a little cleaning then take a bath and a long nap. The afternoon however did not go as I had planned primarily because of two reasons. I am pregnant and it is Spring.

What does being pregnant and springtime have in common you may ask. The answer is simple, the urge to CLEAN!

So I packed our sole vehicle with a load of cardboard to bring to the recycling center. We have curbside recycling pickup but I could not stand to let the cardboard pile up for one more day let alone a couple of weeks in our garage.

I also picked up a magicJack to connect to our internet use as a land line via VOIP (Voice Over IP). We have never had a home phone because of the added expense but since we are both either going over or close to going over our cellular minutes we needed an alternative. The magicJack seems like the perfect solution. The actual device costs only $39.95 and includes an entire year of service. Each additional year costs $19.95. A lot better than paying for our cellular overages.

When I returned home I decided to tackle my closet, something that has been neglected for over two years. Sad to say but the majority of the clothing in my closet is itty bitty and no longer fits. I was hanging onto my wardrobe for when I would eventually lose the baby weight but now most of my clothing is no longer age or mommy appropriate. Not that I am going to start dressing all mommy-ish, if that's even a style but I didn't think I needed to be wearing extremely revealing shirts or humor tees. I am pretty sure I am done with that phase.

When I finished (I still haven't really "finished" and don't think I will ever be completely "finished") I called Jay in to take a look and he seemed impressed until the heap of clothes on his side of the bed still heaping. Then he looked disappointed that I hadn't taken care of his mess. I would have but I was thirsty, hungry, and exhausted. Not to mention, our little Tornado Nathan was on his way back home and I needed a reserve of energy to get me through the evening. But rest assured I will be back in our closet and our bedroom, his clothes heap will be gotten to, and I just may force Jay to sort through his clothing as well. It is so invigorating!

So these were the highlights of my Friday. Hope you all have a wonderful weekend! I think I may attempt making sweet potato fries tomorrow, one of my cravings.

Thursday, April 8, 2010

A bucket of...

Very good guesses on this post but nobody guessed correctly.

daberry1

Sand was the closest guess but I have yet to come across a pink beach.

One good observation was the evidence on his face but if you look closely it is not brown so no chocolate.

A little evidence on his face. A little more evidence on the playroom floor.

daberry2

And a lot more evidence on the kitchen floor.

daberry3

And there you have it, an empty container of Strawberry Nesquik, a Strawberry Nesquik covered spoon, a tossed aside binky, many small finger and foot prints, and a favorite matchbox car.

There is no doubt in my mind who caused this mess. Ahh, but I love that boy!

Any guesses?

What do you think Nathan has inside his bucket?

daberry1

Wednesday, April 7, 2010

Grover

I prepared Nathan's basket the day after Easter. I know how incredibly lazy of me but he got an Elmo shaped basket from grandma and grandpa on Easter Sunday and I figured why not celebrate the resurrection of Jesus for two days.

Before my father came over with his girlfriend for our Easter dinner I arranged all the goodies in Nathan's basket and left it on an end table. It wasn't until after dinner that Nathan spied his basket. Actually, until he spied Grover in his basket.
Easter basket

He didn't pay much attention to anything else in his basket until the day after the day after Easter.

Easter Grover-7Easter Grover-6

Can you tell how excited he was to find his very own Grover?

Easter Grover-8

Monday, April 5, 2010

The lengths I go to preserve a nap

Naps are a precious commodity these days. Ever since the transition from crib to toddler bed Nathan's afternoon nap time has become a thing of the past. This is why I will go to great lengths to keep Nathan sleeping if he does happen to fall asleep.

Like the occasion last week when I had come home from shopping. Nathan had fallen asleep less than twenty minutes from home. As per my friend's suggestion, my 19 week pregnant self carried his entire car seat into the house with him in it hoping he would stay asleep and he did! He slept for a total of 45 minutes and it was awesome.

nap in carseat

Sometimes he will fall asleep during treatments but each time I try to remove his Vest and carry him to his bed he wakes right up. Yesterday he fell asleep during treatments and I left him on my lap with his Vest on and he continued to sleep for an additional hour and a half, two hours total!! I was starving and had to use the bathroom real bad but again, totally worth it!

Saturday, April 3, 2010

Hop to it!

Nathan and I have just returned from a family friend's house. He is zonked and so am I. We met at the church to have the food blessed and then returned for a nice Easter meal. Everything was delicious. Of course, Nathan would not eat any of it besides the grapes. The closest he got was dipping a matchbox car into the veggie dip.

We still have yet to dye our Easter eggs. Judging by our current level of exhaustion, this may have to wait until tomorrow morning. But we did visit the Easter Bunny at a less crowded mall yesterday as per my friend's suggestion. Nathan was thrilled to see the Bunny. He wanted to skip directly to the front of the line and when it was his turn he waved both of his arms in excitement.

easter bunny 20101

He played with the Easter Bunny's eggs but was not as thrilled to pose for any photographs.

easter bunny 20102

easter bunny 20103

Hope everyone has a blessed Easter! Now time to hop into our pajamas and relax after a busy day spent enjoying the holiday and gorgeous weather with friends.

Friday, April 2, 2010

Here comes the sun

Perfect weather for cruising in Boppa Bill's 'Vette.

nathan boppas vette3

Doesn't it look like he knows what he's doing?

The weather is supposed to be gorgeous the next few days and we plan to enjoy every single ray of sunshine. Unfortunately I kept putting off our visit to the Easter Bunny and now I am forced to brave the mall on Good Friday. If Nathan has to wait in a long line I am certain we will have an unhappy photo for 2010 but I guess every kid has to have one or two of those "screaming photos" with Santa or the Bunny.

Thursday, April 1, 2010

Gender Ultrasound

Guess what! I finally managed to convince my husband to let me schedule an elective gender ultrasound. Actually he told me it was foolish to pay for an elective ultrasound when we already have a routine ultrasound scheduled in less than two weeks. This is very true but I am still having a difficult time waiting. So I put in a quick call to his mommy dearest to have her convince him that the fifty dollars dollars is totally worth it. She then put in a quick call to her son and Voila! he suddenly agreed. I have learned that my mother in law is better at convincing when it comes to Jay.

So do we now know the gender? Nope. I called the ultrasound facility several times and even left messages. Apparently answering the phone and returning messages are not important in the operation of this ultrasound facility. If I had transportation I could drive down there and try to schedule an ultrasound in person but the closer we get to my routine ultrasound the more foolish it seems to pay for an elective ultrasound.