Saturday, January 30, 2010

Chronically Late

Being late makes me sick to my stomach. I used to always be right on time if not a little early but now I am chronically late, and there really isn't anything I can do about it.

I am supposed to be at a bridal shower an hour away in one hour, so it looks like I will be late once again. Jay is helping with Nathan's treatments today and it is not going so well. Nathan refuses to cooperate with Jay. Right now he is swinging a cat harness while Jay does his CPT pacing in front of the television. Yes, I have been known to take my cats outside on a leash.

At best we could be twenty minutes late but I can't risk ruining the bride's surprise. Not to mention Jay and Nathan are both in their pajamas. Sigh. Not to mention I still have yet to get a card and a gift. Sigh, again.

What has become of us? We have to be the worst friends ever. It seems like Nathan's treatments make us late for a lot of things so I hope our friends will understand. I would leave Jay and Nathan here but their is also something "for the guys". So I am going to go pick out some outfits for the boys and pack a diaper bag so we can avoid missing the entire affair altogether.

Friday, January 29, 2010

not napping

I am pretty sure Nathan is just not going to nap today. I don't know why I get this feeling but maybe it is all the noise coming from his bedroom at this moment. That's what I get for doing his treatments a half hour early. Normally he falls fast asleep when I start pounding on his chest (CPT) but not today. Instead, he enjoyed karate chopping me with his arms and grabbing the percussor cup (the tiny little device I use when doing his CPT). Good thing I try to keep a spare cup close by.

So I am going to leave you with a photo of Nathan chowing down on a slice of pizza. I love seeing him eat these high calorie foods.

pizza

Thursday, January 28, 2010

The Vest for Airway Clearance

Yesterday I announced the BIG NEWS that Nathan is getting his Vest. I assumed that everyone knew what the Vest was but just in case you don't know how big this is for us and for Nathan, I thought I would dedicate a post to it.

The Vest System would replace the need to perform manual chest percussion therapy (CPT) twice a day (and even more frequently when Nathan is sick). Of course, we can always opt to perform manual CPT because God willing we will always have hands. In the future, The Vest System will allow Nathan more personal freedom (something as simple as being able to sleep over a friend's house) and will reduce the amount of time he spends in the hospital each year.

To view a video of a child's explanation of the vest, click
here.

I really can't wait to capture a few of Nathan's own videos wearing his Vest, shaking, and making silly noises. It seems like it is a bit of a right of passage in the CF world, one of them at least.

Again, all excitement. I am hoping Nathan adjusts well to the Vest because it could be a scary thing.

Wednesday, January 27, 2010

Time to put my mind at rest...

...Nathan is finally getting his Vest!!

Can you tell how excited I am?

I feel like jumping up and down with joy. If I only had more energy.

Instead
I will tap away at the keyboard. Tap, tap, tap....Yippee! Hooray!

I signed away my life (aka. the consent form) without thinking twice and Nathan's Vest should arrive within a week or so, after which I will receive training. I don't know the logistics of how it is going to be paid for because it will undoubtedly be denied by Nathan's health insurance (no durable medical coverage). I may receive some nasty phone calls but I am not going to worry about any of that, until I need to. I may be able to work something out with the company who sells the Vest (I believe the Respiratory Therapist is ordering through Hill Rom). Again, I will worry about it when I need to, not right now. The good news is - once the Vest is ordered and delivered, they don't take it back!!!!

So if you haven't already realized, Nathan had a clinic appointment today. It went well, wouldn't you agree? He weighed a little over 25 1/2 pounds (jumped to the 50th percentile) and was 32 1/4 inches tall (between 50th and 75th percentile). He was scared of the scale, the stadiometer (I learned a new word = measures height), the stethoscope, and anyone wearing gloves or carrying long swabs to shove down his throat to collect sputum.

Not too much is changing with his enzymes, we may increase it from 3 1/2 to 4 with his bottles in order to reduce the number of poo diapers and may be switching from Creon 6 to Creon 12 in the near future. Nathan will begin taking an iron supplement to help raise his hemoglobin, but Dr. A and the nutritionist were very pleased with his weight gain. I'm not so sure I can take complete credit for this one being that I have been eating and watching others eat very little this past month. Boppa Bill kept the breakfasts coming for a few weeks so he gets partial credit.

Side note, I am 10 weeks pregnant today and the nausea may be beginning to subside. Fingers crossed here!!

Pseudomonas update - Nathan last cultured positive for pseudomonas putida so I wait with anticipation to receive the results of this sputum culture. Dr. A is worried that he is not culturing positive for pseudomonas aeruginosa because it has colonized in his lungs already. In this case, Dr. A will be deciding on whether to run a course of IV antibiotics in the hospital or begin a month on/month off TOBI regimen at home. He is still contemplating when he will perform a bronchoscopy and pulmonary function test. I know there is alot of controversy regarding bronchoscopies and I have already begun asking questions and doing research.

All in all it was a
good day.

Can I get a WOOT! for Nathan getting his Vest!!!!!

Nathan's Current Medications and Treatments

Last updated: 1/27/2010
Age: 17 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
CPT: 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
Salt: 1/4 tsp. once a day

Weight: 25.5 lbs.
Height: 32.25 inches

Wordless Wednesday - Buh Bye

buhbye

Nathan is currently obsessed with going buh bye. He will attempt to put on his own coat, grab my keys, and stand near the door.

More Wordless Wednesday at 5 Minutes for Mom.

Tuesday, January 26, 2010

Cabin Fever

I've got a case of cabin fever. Seriously I cannot stand another day of being couped up in my house with an extremely energetic toddler. The weather has been horrible, in my mind, all winter weather is horrible. I am happy that the snow has melted and that yesterday we had fairly warm temperatures but it didn't come without the price of heavy rain and wind.

Last week I was determined to purchase Nathan the toddler version of the JJ Cole bundleme and I did. Now I can take Nathan for walks without feeling worried that he is going to be cold.

Today, while on the verge of insanity, I decided to take lil Mr. ball of energy for a walk to the playground. This way I can get out of the house and get some exercise, he can expend some energy, and we both can breath some fresh air.

At the playground, I had the wonderful opportunity to spare my son and use my rear end to sop up the freezing cold water at the bottom of the slide. It was cold but it was well worth his giggles as I slid down the slide with him.

I am hoping this brings some relief to my cabin fever and that the fresh air knocked Nathan into a deep sleep for his afternoon nap.

Monday, January 25, 2010

Babywearing is sew much fun!

I am all finished with Jakob's Mei Tai. Here are two photographs of the finished product: the front and the back or the back and the front, whichever way you will have it.

Since I didn't get little Jakob's address until after the post office closed on Saturday it will be shipped today! Hope you and your mama enjoy the babywearing!

mei tai-red

mei tai-yellow

It looks Benjamin may be getting his very own Mei Tai very soon! But for now it is time to hit publish before Nathan rips any more keys off the laptop and before I gag from the stench emanating from his diaper. Have a lovely Monday everyone.

Sunday, January 24, 2010

He's Perfect for me

My husband, that is. He's perfect, for me.

I feel dizzy, he carries Nathan down the stairs.

I feel hungry, he prepares my breakfast.

I feel nauseous, he waits until I take a shower to eat his smelly foods.

I tell him not to eat or drink something because it might make me gag, he complies.

I take long naps, he is extra quiet.

Nathan wants to play, Daddy is right by his side.

Thanks Jay! I am super miserable, super exhausted, super nauseous, and a tad cranky recently. I am hoping these symptoms of pregnancy are nearing an end soon. You are just super!

Friday, January 22, 2010

a rough morning

Fridays are great, or at least they should be one of the easiest days of the week. I had the morning well planned. Everything should have happened like a well oiled machine, if that is the correct comparison. But it did not.

My father came to my house early to join me and Nathan for the almost hour long drive to the hospital where I will eventually be delivering baby #2. I was scheduled to be filling out paperwork and such but since children cannot enter the hospital due to H1N1, my father was to wait in the car with Nathan. Apparently I did not have my schedule straight in my head because I showed up an hour early for my appointment and knew it would be a catastrophe to leave Nathan and his Grandpa in the car for an additional hour...so I canceled my appointment.

I was cranky that I screwed up the appointment time so that set the tone for the morning. Nathan screamed the entire ride home because the sun was in his eyes. I purchased sun shades for the rear windows way before Christmas but since the windows in the car are still filthy, Nathan is still blinded by the light. Poor Nathan and as a result poor me. I have a headache and am exhausted.

I was supposed to meet some friends at an indoor children's play center but I had to perform Nathan's treatments and when he fell asleep I just brought him to his crib. I will have to meet up with them next time.

And now, he naps! I am trying to see if taking my vitamins earlier in the day before I am extremely nauseous will help. Fingers crossed. Praying to God. Whatever works!!!! And after I hit publish and finish eating my apple with peanut butter I will be napping too. And since I finished sewing the baby carrier yesterday, I really need to get to the post office. I think I will upload some photos too when I wake up.

Oh boy, this seems to have been another extremely disorganized post of my ramblings. Sorry, again I am tired.

Wednesday, January 20, 2010

a few disorganized thoughts

I am usually very behind when it comes to news and get most of my news from the trending topics on twitter. Therefore it wasn't until moments ago that I found out about the Massachusetts Senate race.

Apparently the race is over before I knew it had begun and Republican Scott Brown has indeed won over a traditionally democratic state. I am hopeful that this will bring about change to the current health care bill.



In other local news, or rather my own thoughts, I am 9 weeks pregnant today. Still experiencing morning, afternoon, and evening sickness, miserable and nauseous as ever. I am eating and drinking when I can and swallowing whatever pills I can get and keep down.

Treatments have been horrendous, not because of Nathan, but because of my lack of energy. He is really great for 90% of the treatments and has recently been falling asleep while I pound away at his chest. I am just plain exhausted and having him on my lap puts pressure on my bladder makes me have to pee, I can't believe I said that. I am wondering how I am going to be able to do his treatments on my lap in the coming months when my lap will be decreasing as my belly is increasing. Not to mention, the bladder situation will surely worsen.

I am wondering if Nathan's CF Clinic is ever going to think about helping me fight for a vest for Nathan, being that his insurance has zero durable medical coverage. This has really been on my mind recently. I bring the topic up at every single clinic appointment but nothing ever comes of it. At the last clinic appointment, the respiratory therapist was talking about how she is fighting for a vest for a 6 month old because her parents do horrible manual CPT. I thank God that this means we do fantastic manual CPT, but I don't think that should exclude Nathan from getting a piece of equipment that can improve lung function and extend his life expectancy.

Our mortgage situation has still not improved, but I think that is enough thinking for now.

Wordless Wednesday - Munchkin sized

miniburger

Nathan's very own munchkin sized cheeseburger prepared by my father in law. Of course, Nathan would still prefer his very own McDonald's cheeseburger for some unknown reason, but it was worth a try.

More Wordless Wednesday at 5 Minutes for Mom.

Monday, January 18, 2010

Contrary to popular belief

fishbowl

Baxter did not eat Nathan's new goldfish. I am not saying he didn't try to eat the goldfish many times but he settled for the goldfish flakes instead.

Nor is this a photo of the empty tank where Nathan gets to throw a stone for each enzyme swallowed.

fishbowl2

There the little fishy is. You see, I was all for my friend Breanne giving away goldfish as party favors until I brought the live animal home and had not a single clue how to care for it.

When my husband told me it was a feeder fish, to not worry about feeding it because it will most likely be dead in a day anyhow I got all upset. I crumbled up Cheerios for Nathan's little fishy and got all weepy every time I looked at the little creature.

I told Jay that I felt bad we have to watch the goldfish die and he responded that these fish were doomed from the moment they were born. I think he was trying to get me all riled up. It worked.

Then I called my neighbor for advice. She just so happens to have an enormous fresh water aquarium filled with all sorts of exotic fish species.

Now our little fishy has a 2 gallon aquarium on loan filled with bubbling water and fish food. The cats, Baxter especially, were threatening to chew through the air hose, so now the lil fishy is resting in Nathan's bedroom.

Now I just have to figure out a name. Any ideas?

fishbowl3

Sunday, January 17, 2010

Friday, January 15, 2010

All you need is LOVE!

My bloggie friend, Jana, tweeted a link to this video earlier today and it made me happy so I am sharing it. PS. Jana, I am almost done with your mei tai baby carrier. When you told me the surgery got pushed back I took a little mental nap. I will be in touch with you.

Thursday, January 14, 2010

Training a toddler to swallow his enzymes

My husband and I were recently talking about how nice it would be if Nathan would swallow his enzyme capsules whole. Many children with Cystic Fibrosis learn to swallow their pills at an early age. I must admit, training my almost 17 month old son to swallow pills would never have crossed my mind unless he were accustomed to swallowing handfuls of pills on a daily basis like he does.

daily enzymes

So we decided that Nathan's time has come! Maybe we are getting tired of opening pill capsules onto applesauce and finding the empty capsules all over the house. Maybe we are getting tired of having to remember to pack applesauce (on ice so we don't waste countless jars) and a spoon into the diaper bag every time we leave the house.

He was eating the empty capsules at 10 months old but I think he was chewing them, which is not good. The contents of the enzymes help him to digest his food and the applesauce helps it go down hopefully without digesting bits of his mouth on the way. Thus far we have avoided the enzymes leaving sores in Nathan's mouth so we don't want him to start chewing his capsules open and letting the contents digest his cheeks.

Our strategy: put the entire enzyme capsule into the applesauce to help it go down. Once Nathan is comfortable with the idea of the entire capsule in his mouth we will have him swallow them with a drink but so far this is what is working. He doesn't even realize the pill is in the applesauce.

entire enzyme

I am still opening the capsules for his bottles because he needs 3 and 1/2 enzymes. It is too many to hide on one spoon of applesauce and he wouldn't appreciate being disrupted from his bottle 3 and 1/2 times. Either way, this is so exciting!

Wednesday, January 13, 2010

Wordless Wednesday {Christmas Leftovers}

christmas leftovers

More Wordless Wednesday at 5 Minutes For Mom.

headache with disqus

I was fiddling around with my code yesterday trying to fix the comment count with my disqus system. I knew I was not successful but I was not aware that I screwed it up.

I only wish I knew how to get rid of disqus altogether. Sorry for the computer mumbo jumbo but I am working on it.

Tuesday, January 12, 2010

special delivery

Nathan received a special special delivery

special delivery

from his great uncle in North Pole, Alaska!

from north pole

The stamp covered package contained none other than more stamps and postal memorabilia. Like this first day of issue stamp sheet of the Arctic Tundra.

arctic tundra

...and this assortment of commemorative envelopes and stamps.

stamps etc

I am certain Nathan will love and appreciate this soon enough. Would it be ridiculous for me to save the actual package? I love the vintage comic strip stamps.

Monday, January 11, 2010

Cystic Life

I have been awaiting the launch of Cystic Life for quite some time. I love dreams that come true. Cystic Life was dreamed up by Ronnie and his now fiance Mandi.

What is Cystic Life? CysticLife.org is a social networking site much life facebook, myspace, and twitter. You can even link up to these social networking sites from Cystic Life. What makes Cystic Life different than these other social networking sites is that it was built especially for the Cystic Fibrosis community.

The website was expected to go live today so I checked first thing in the morning and alas! Cystic Life was not just a concept anymore. I created an account and am slowly working on creating a profile. My first impression of Cystic Life? It is a well designed social networking site organized neatly so members can connect with others in the Cystic Fibrosis community, share stories, ask questions, and interact.

Essentially it is still a blank canvas that needs the members of the CF community to help create the masterpiece. So do you have CF? Are you a CF parent, sister, brother, son, daughter, friend? Head on over the CysticLife.org and check it out for yourself. Help contribute to the masterpiece. Create an account and expand your CF community!


Saturday, January 9, 2010

Men remember the darndest things

I love my husband. He is so funny and well like a man. Now he cannot remember what we ate for dinner two nights ago but he can remember the darndest things.

For instance, he remembers the outfit I wore on our first "date". For the record it was a green tank top, jeans, and a jean jacket.

This morning he also surprised me with his phantom memory while watching Saturday morning Nick Jr. with Nathan. Dora the Explorer was on. It was Season 4 Episode 9 "Dora's Got a Puppy" just in case you were wondering.

doras got a puppy

A screen shot of the episode, for the record.

Toward the end of the episode, out of nowhere, he tells me, "This was on the television at the hospital..." way across the enormous waiting room at the Children's Hospital where Nathan's CF clinic is located "...when we took Nathan to get his first sweat test" when he was only a few weeks old.

Don't men remember the darndest things. My husband cracks me up sometimes. I always knew Jay was attracted to the television like insects are attracted to the light but I never knew he would remember the exact episode of Dora the Explorer airing on a television that was barely visible from where we were waiting.

Does this happen to anyone else? Please tell me yes.

Friday, January 8, 2010

Now that the cat's out of the bag

I have one more thing to share. It looks Nathan is not the only big brother to be.

IMG_7380-2

That's right, Nathan and his pal Ayden are both big brothers in training. Congratulations to the boys, to Ayden's mommy, Breanne, and to me!

Thank you for all the congratulations and well wishes. It has been really difficult these past couple of weeks between having a cold, dealing with all day sickness, fatigue, and TOBI treatments which I am not supposed to be breathing while pregnant. I have been wearing a mask all month but today, no more TOBI!! I guess I am celebrating by not taking a nap. I am sure I will pay for this later but I am not going to worry about that right now.

Thursday, January 7, 2010

It's business as usual when a caregiver is not feeling well

As the primary caregiver for my CF son, Nathan, I have quickly learned that life must go on even when I am not feeling my best. I am certain this holds true for all parents and caregivers.

It all began on Christmas when I developed a sore throat. I was certain it was strep throat, but it was not. The sore throat developed into a full blown cold with congestion and feeling crummy and tired.

Jay went back to work and I had to continue business as usual. I had to wake up with Nathan in the morning when all I wanted to do was to stay in bed and sleep off the cold. I had to make him breakfast when all I wanted was a cup of tea on the couch. I had at least an hour and a half of breathing treatments to do before I could even think about a nap, and even that was not guaranteed.

I have finally beaten the cold but am still feeling worn out. I am certain that Nathan is bored out of his mind so I am very appreciative when family stops by to give him some much needed attention.

It seems so much more difficult to bounce back from being sick now that I am a mommy. Perhaps this little guy demands a lot of my attention, or perhaps there is another reason.

IMG_7369-2

Tuesday, January 5, 2010

The Night Before Christmas

Please excuse my lack of words, I am still feeling a bit ill. Jay's mom spent the entire day with me and Nathan today to help out and keep us company. I really appreciated this especially being that I am dizzy and tired and sick. But don't worry, I am alive and resting up and will be back in full force soon enough.

Until then, here is a photograph of Nathan on Christmas Eve. Lots going on here.

christmas eve copy

Sunday, January 3, 2010

Saturday, January 2, 2010

first set of wheels

A slightly delayed but very fabulous Christmas present for Nathan from his Uncle Will, Aunt Megan, and Uncle Christopher.

Nathan now has his very own "cah" to sit in and ride around the house chasing the cats and bumping into the walls. Not yet though. Right now he is pretty content sitting in the driver's seat with a sippy cup nearby. He has discovered the gas petal but as of yet has only traveled a few inches.

"Boppa" Bill is already planning to replace the decals with real lights. We knew it couldn't be long before the modifications began.

vroom jeep