Round and Round

One of the thinges that we were told in our very first meeting with the CF team back in November was to keep everything we got from our insurance company. I'm so glad that I listened! In the last few months our claims have been rolling in in buckets. That's to be expected, I guess, as we have had more doctor's appointments, lab tests, and specialist visits than I can count. But what I didn't expect was the complete incompetence of the billing departments involved. I have spent HOURS on the phone over the last month trying to get everything straightened out, and just when I was hopeful that things were going to be ok, we get another bill today indicating that not only are things not ok, but that my hours might have just been wasted. Unfortunately, it's Friday night so I can't make any calls. And we have a clinic visit early Monday morning, so I won't be able to call until Monday afternoon. Frankly, these bills are starting to make me nervous about visiting the doctor. Things are so messed up that our insurance company has told me not to pay any bills until they can review everything, and the bills are starting to grow in number. Granted, they are ALL wrong and 50% of them we probably won't have to pay, but just going to a doctor's visit when there are people there that think you owe them money makes me uncomfortable. Uggghhhhh......I'm really frustrated!! I don't normally vent this kind of stuff in a forum like this, but I needed to tonight. Maybe if I vent enough before Monday afternoon, I won't take anyone's head off. Maybe.

Proud of Myself

One of my favorite things about our house is the kitchen and our pantry. Really, if you haven't seen it, you're definitely missing out. We have the largest pantry ever! It's fabulous. But lately, the pantry has been driving me a bit crazy. The organization had disappeared and everything was a mess. That is, until Monday. First thing Monday morning, Kai and I began to empty the pantry. We took everything out. After that I wiped down the shelves, vacuumed the floor, and then put everything back in an orderly fashion. All week I've seen the pantry and have been very proud of myself--and Kai. It was a long process and he was very helpful and well behaved for the most part. I think my nearly 3 hours of work is worth showing off!!

Before: emptying the shelves with Kai

After: It may not look that different in the pictures,
but I promise that it looks a whole lot better.

Kai entertaining Finn during lunch

I was wrong

At 11:30 last night Finn figured out how to roll over without being swaddled. It was another long night. I'm unsure what to do now. I'm hoping that with a little practice he'll get better at rolling back to his back and/or used to sleeping on his tummy. I so wasn't prepared for this!! The minute Kai learned to roll to his tummy he started sleeping through the night, so I was expecting the same thing I guess. Obviously Finn is not a fan of sleeping on his tummy like his big brother. Managia mia!!!

He Did It!

Just a short time ago, I took away Finn's sleep positioner. We had been using it since he was itty-bitty to position him on his side (his favorite sleeping position since day 1). He was starting to get frustrated by being constrained to one side and I had noticed that he was repeatedly turning his head to the right and trying to move that direction. As soon as I took the positioner away, he started rolling up onto that right side.

In the weeks since that positioner was removed, Finn has grown increasingly closer to not just rolling up onto his right side, but actually rolling all the way over. And he was doing it while his right arm was swaddled up tight against his side. Well, last night/this morning a little after 3:30am (the prime hour to attempt any new skill!) he actually did go all the way over to his tummy. I'm so tired this morning that I can't remember if I actually saw it happen or if I just saw him on his tummy in the monitor. Either way, he was upset and I went to his rescue. I settled him down, put him back to sleep, headed back to my room, and was called back a minute later. I decided to try and feed him his bottle a little early and left him fussing in his crib while I got his medication ready. When I went to get him, he was on his tummy--again! Let's just say it became a long morning, and I ended up sleeping with him in the recliner.

Finn on his tummy. Poor thing hasn't figured out how to get
his binky just yet. Here's to hoping that's his next new trick!

Morning naps went much the same. Before noon today he had made his way to his tummy four times, disrupting his sleep each and every time. I started to worry that the swaddling was getting dangerous as he did not have the use of one of his arms when he made it to his tummy, so for his afternoon nap we said a fond farewell to swaddling. He fussed and cried for a good 15 minutes on his back before he realized that he could still roll without the swaddle. And before I knew it, he had rolled up on his right side and gone to sleep. And this time, because he had an arm in his way, he stayed on his side. So, for maybe another day or two I may get some sleep. I have no idea what we'll do once he starts going all the way over again. Here's to hoping that he starts liking tummy sleep soon!

Four months

Finn had his 4 month check-up on Friday.  According to our pediatrician here are his stats:

Height-24.5 inches  (20-25th percentile)
Weight--12 pounds 5 ounces (10th percentile)

Now, I'll admit I don't know what to think.  Just 18 days prior (on February 1st) at his clinic appointment he weighed 11 pounds 1 ounce and was 22.5 inches long.  So in 18 days, he grew 2 inches???  As for the weight, there seems to be a trend that when he gets weighed at the pediatrician I get excited about how much he's gained, but when we go to clinic I get disappointed about his weight gain slowing down.  So, I've already decided that these scales are off. I don't know by how much, or which one is correct, but one of these scales is wrong.  The jury is still out for me on the rulers, though.  Really people, you'd think that you couldn't mess up a ruler that much, could you?  A scale I kind of get.  The ruler I don't understand.  Anyway, his pediatrician was super excited.  I'm half-way excited.  If the height is correct, he would be the same height that Kai was at 4 months.  That'd be good.  However, Kai weighed 2 pounds more.  Wow!

Other than his vital stats, there are a few other items of note about our little "happy bug".

• Finn does not like to lay down much.  He LOVES to stand.  LOVES IT.  If he's not standing, his other happy spot is perched on my shoulder looking out backwards.
• Finn consistently goes to bed before 7:30pm every night.  There have been a couple of nights that he has slept over 6 hours, but for the most part he wakes up around 12:30 for a bottle, will sleep 3-4 more hours, get up for another bottle, and then I start praying for 2 more hours.  I haven't gotten it yet.  He normally has tummy problems/poopy diaper problems between 5 and 6am.
• Normally he takes one 2+ hour nap a day.  The rest are hit and miss.  He takes a total of 4 naps, it's just the length that has no consistency.
• He is slowly learning to settle himself back to sleep by rolling up on his right side.  It's funny to watch him in the monitor as he has managed to work his way in circles by arching his back and trying to roll onto his side.  I can't imagine the screaming that's going to follow the first time he goes all the way over onto his tummy.
• He loves his daddy and saves almost all his giggles and laughs for him.  For me, he gives the super-duper smiles, but the laughs are for daddy only.
• He loves his toys, especially the baby gym.  We call it his happy mat.  He also loves his bouncer and can make the parrot spin with the best of them.  And of course, one of his favorite toys is big brother Kai.

 We love our little guy and are so happy that he's a part of our family.  Here's to many, many more memories together!

Roly Poly

On Thursday morning, Finn rolled again. I grabbed the camera, waiting to see if he'd do it again. And, he did! Here's what I was lucky enough to catch. I promise he did start flat on his tummy. I managed to turn the video off right before the surprised little guy started screaming and crying. He hasn't rolled since....it still scares him.

Finn in the high chair

On Sunday we pulled out the high chair so that Finn could have a place to sit while we all try to eat.  It works for about 5 minutes before he gets upset and wants out.  But it's fun for those 5 minutes!

Saturday Sick Day

 

Colds for Kai have a tendency to run the full 10 to 14 days that doctors talk about with viruses.  So, we've buckled down and have made a complete mess of our house.  Well, that is except for the trains on Saturday.  Kai made what had to be the longest train possible.  This is only what we could fit in the picture!

Thursday February 11, 2010

Sick day at home = fun on the slide

Fun With Jigglers

As part of our Valentine's Week, we made some heart-shaped jigglers on Wednesday.  Kai LOVED them.  He ate almost half of the pan in one sitting.  Considering that he woke up sick that morning, I was impressed.

We also received Finn's mail order prescription refill that day.  Anyone want to take a guess at how many pills are in this bottle??  I'll give you a hint, it's a 3-month prescription.  So, guesses?

 

The answer...............1,080 pills!

I Love You Week

One episode of My Friends Tigger and Pooh is called I Love You Day.  It's pretty much a Valentine's Day type of episode.  Kai has been asking for Valentine's Day and looking forward to it for a couple of weeks now, so we decided that we would celebrate all week long. He's excited to make cookies and hearts.

Yesterday we decided that we would make brownies and decorate hearts for Daddy.  It was a fun project to do together and we really had a good time.  The pictures turned out well, too.

 

Towards the end of the day we were playing with playdough at the table.  When it was time to get down I discovered that Kai had misbuckled his booster seat resulting in the seat being stuck on his bum!  I was laughing my head off.  In the end I had to have him lay on his stomach so that I could reach the buckle and get him out. 

 

We had a good day! 

Quote of the day!!
Kai:  Any questions?
Me:  No, I don't have any questions.  Do you have any questions Kai?
Kai:  No.  I just have the answers!

Drama!

So, why is Finn so upset?  I took a Q-Tip and cleaned the outisde edge of his ear....once.  Can we say drama??  This kid knows how to throw a fit!  At clinic the respiratory therapist accused him of playing me.  He'll be happy and smiley but as soon as I start his chest therapy he'll start to cry like you're beating him to death.  As soon as you stop, and I mean as soon as you stop, he's all smiles again.  Yep, it seems we have a dramatic baby.  I'm hoping he outgrows this!

Good Luck

Finn wore his first 3-6 months outfit yesterday.  It's one of the outfits that I found on major clearance at Children's Place and I think it's so cute.  (As a random side note, 3-6 months at Children's Place is for 11-15 pounds, at Gymboree it's 12-16 pounds, and at Carter's it's 12.5-16.5 pounds.  Funny, huh.  Since Finn's 11 pounds, I've only brought out the new Children's Place clothes.)  It must also be good luck!  We had a horrible night on Thursday and so I wasn't holding my breath for last night, but Finn went to bed a little before 8pm, slept until 2am when he got up for a diaper change and feeding, was back in bed by 2:40am, slept until 5:40am when he got up to eat again, and then slept from 6:15am until 7am.  So nice!!  A momma could get real used to that!  I also took away his sleep positioner last night.  We had been using it to help keep him on his side since that's how he perferred to sleep, but it seems that he's starting to like to move around and get comfortable by himself. My baby's growing up....way too fast!

Clinic Day

The first Monday of every month is "clinic day".  It's the day that a pulmonology team from Children's Hospital in Denver comes down to Colorado Springs to see patients.  We have an appointment every month for the next couple of months.  Honestly, clinic day is not one of my favorite days.  Clinic appointments can last anywhere from 2 to 3 hours.  It makes for a long day.  The last two months we have found babysitters for Kai, which has helped, but poor Finn has to be there no matter what.  I have a feeling it's only going to get harder.

So, what happens at clinic?  Well, first we get checked in by a nurse.  They take Finn's blood pressure, oxygen levels, head measurement, height, and weight.  On Monday he was 22.5 inches long and weighed 11 pounds 1 ounce.  This puts him in the 1st percentile for height and the 3rd for weight.  On the height versus weight chart he was in the 42nd percentile.

Once we're checked in, we're taken back to an exam room.  They're small rooms.  Once we're settled, the team starts taking turns coming in.  There's the pulmonology nurse, the respiratory therapist, the pulmonologist, the nutritionist, and the social worker.  The nurse asks us how things have been going, takes notes for the rest of the team, and also talks to us about any clinical trials/studies that Finn may be eligibile for.  The respiratory therapist goes over airway clearance techniques with us and listen to his lungs.  She also takes a throat culture once every three months to see what bacteria, if any, he may be growing.  The doctor does a little less than a pediatrician. She listens to his lungs, checks his throat, nose, and ears, and presses on his belly.  Plus she goes over any concerns we may have and talks a bit about every other piece (the nutrition, the respiratory therapy, etc.)  The nutritionist ask about how he takes his medication, how much he's eating, and how he's growing.  She's the one that gives us his percentiles.  Finally, the social worker asks us how we are doing emotionally and finacially.  She directs us to financial programs that we may need.  And that's it, finally!  Like I said, they're long visits.

So, where are we at now and how is Finn doing?

Well, we've gone through several medication changes so I'll try to be brief and touch on each piece.

Enzymes:  Our original prescription was for Ultrase.  Unfortunately, we had a hard time with those.  We discovered that Creon has smaller granules and smaller capsules. Perfect for our small guy.  So we switched to Creon.  In November he had a dosage of one capusle per feeding.  At the beginning of January the dosage was changed to one and half capsules per feeding.  While we all feel that his dosage needs to go up, he has not gained the necessary weight (hard to do when your dosage is too low!) to do so.  He's maxed out the strength that he can have.  So, he's still at one and half.  Hopefully next month we'll be up to two.

Vitamins:  We started with the free vitamins that came with the Ultrase, AquAdex.  They were nasty and yellow and so I mixed them in his milk.  Now we've moved on to the free ones with the Creon. They are cherry flavored Vitamax.  So much better.  Now he can take his 1 mL just as a squirt in the mouth.  So MUCH better!

Acid Blocker:  We started this before his CF diagnosis as a response to possible reflux.  He was on Zantac.  In December that was switched to Prevacid Solu-tabs.  Those were SUCH a pain!  They never really dissolved all the way.  So, in January we switched to Prevacid capsules.  He now gets a half a capsule a day.  So much easier!

Salt:  This will stay at 1/8 teaspoon a day until he's six months old.  At that time it'll go up to 1/4 teaspoon a day.

Antibiotic:  Finn had an antibiotic at the beginning of December for a cold.  On Monday the doctor prescribed another antibiotic (Augmentin) for a possible sinus infection.  At least he thinks it tastes good.  :)

RESULTS

Weight Gain:  When we first began this journey, Finn was a newborn eating small amounts 10 to 12 times a day.  Now that he's older he's eating more at a time, a lot less frequently (normally 6 to 7 times a day).  In a day he can consume as much as 32 ounces of formula.  When he was eating more frequently he was gaining close to 30 grams a day.  On Monday he clocked in at an average of only 18.5 grams a day.  As he should be gaining 20 to 30 grams a day, we needed to make some adjustments.  He doesn't weigh enough to up his enzymes, so we have to up his food.  The nutritionist gave us instructions on how to mix his formula so that there are 24 calories per ounce instead of the standard 20 calories.  It's safe to assume that he is unable to absorb 20% of all that he eats, so upping it to 24 calories will actually help him absorb almost as much as a normal kid.  Hopefully that will help him gain weight more quickly.

Poopy Study:  (officially known as fecal assessment, I believe) The result of this test indicates that his body is not producing many natural enzymes at all.  But that's not surprising based on his symptoms.  This did not surprise us or the doctor.

Genotype Study:  Finn's blood work came back showing he had two severe gene mutations that cause CF--delta F508 and 3905 insert T.  The difference between a severe mutation and a mild mutation is the effect on the pancreas.  Severe mutations are those that impact the pancreas and require an individual to need the supplemental enzymes.  Obviously, we had already drawn the conclusion that Finn needed enzymes, so the results indicating two severe mutations are not surprising.  The positive side to this is that there are drugs about 5 to 10 years out (fingers crossed) specifically targeting the delta F508 mutation.  These drugs would help correct protein that this gene produces so that it would be viable for the body.  Right now, this gene mutation results in the protein being produced but in the incorrect form.  So, if they fix the protein, they could eliminate some of his problems.  Crossing our fingers!  The bad news is that the 3905 insert T is a less common mutation and right now there is nothing coming to fix that mutation.  That mutation actually results in the body not producing the protein at all.  Blehhh!  Well, if we could get half of him fixed half-way......that's a pretty good start.

Overall the doctor says he's doing great!  My daily focus is keeping him as healthy as possible so that when these drugs do come, he'll be able to see biggere benefits.  I'm excited for our appointment next month as our normal doctor will be out on maternity leave, so we will be seeing Dr. Accurso.  I can't wait to hear what he thinks of our little Finn and what he feels the future can hold.  I'm very excited!

PS.  For some fun information, here's a recent CF newsletter from our care center.  Look at the number of calories and that crazy peanut butter popcorn recipe. Oh dear.....I think I'm going to gain more weight than Finn!!!  As for the nurses, Shelly is our nurse in Colorado Springs, but I talk to Erin all the time on the phone.  Laura was the nurse who called us with the official diagnosis.  What a great team--I'm really starting to love them all.  And as long as that clinical trial is still going next month, Finn may be eligible for his first one according to that chart.  I'm very excited for next month's appointment!  I think I already said that. :P

A Happy Accident

I wish we were recording our webcam chat with Grammy and Papa last night.  Finn was animated, happy, and enjoying his grandparents.  He was in such a good mood that we decided to put him on his tummy to show them how good he was at tummy time.  Once on his tummy, he pulled his head up, looked around, and about five seconds later he was on his back.  He rolled all by himself!!  So fun that Grammy and Papa were able to see it, too.  Unfortunately, it completely shocked Finn and he started to cry.  He had no idea what happened.  We've been unable to get him to repeat the feat since then.  So, I guess it's just what his Aunt Kristi would call a "happy accident".  So fun that we were able to share it, though.