Thursday, February 28, 2013

Kai's writing

Every week in his homework packet, Kai has a writing assignment.  At first we both used to dread these, but lately they have become the first thing that he wants to do.  He can do them all by himself now and I'm so proud of what he does.  Each week there is a different subject to write about.  He has to write at least two sentences.  The last couple of weeks have been great for him.  Last week was "Describe a fire truck" and this week it was "Describe a police car".   Kai spent quite a bit of time on his drawing to get it exactly right.  And it only took him a matter of minutes to whip out his two sentences.  He's doing great!



Snow Pictures

We've had a couple of snow "events" lately.  The first brought us about 4 inches or so (that was the one that came on Wednesday evening the 20th).  The second blizzard that arrived on Sunday brought about 8 inches with some serious blowing snow.  Hence, the "blizzard".  Finally on Tuesday night we got another couple of inches (I believe) but they also came in the form of a blizzard.  It seems that everyone around here was unprepared for that one and so, unfortunately, were the roads.  With all of the snow that had been building up, melting, and refreezing, the snow on Tuesday night made the roads the worst they had been all week.  And so, after a snow day last Thursday, the school closing for heating issues on Friday, and a snow day on Monday, we were graced with another snow day on Wednesday.  We won't even talk about the fact that there is no school Friday this week either.  I think I'm hitting my breaking point.  Well, actually Tuesday I did.  Thankfully Kai had 3 hours of school on Tuesday so I could regroup.  But Finn is on steroids now, so if I'm not crying--he is.  No joke.  The kid was just sitting playing Ipad and began to cry because he had an "owwie" on his bum.  Deeeeeeepppp breath, just two more days of steroids.  I think I can, I think I can....


Anyway, to get out of the house a bit we decided to go play in the snow yesterday.  We hadn't gone out at all before because everyone had been sick and it was awfully cold.  But yesterday was one of those picture "play-in-the-snow" type days so we enjoyed it.  We found drifts that went up to my thigh in the front yard (maybe 2 feet plus) and poor Finn was scared to walk in anything that went much above his mid-shin level.  Kai wanted to build a snowman, but it seemed this snow did not want to cooperate.  Instead they dug around and hid things in it and just explored for a while.  Finn is my outdoor kid and did not want to come in, but after about an hour and half it was starting to get cold.  Maybe I'll take him out again today or tomorrow.  He sure does love it!



His sad face when I told him it was time to come in

Wednesday, February 27, 2013

The answer is: 15

If you guessed, "What is the current number of daily medications that Finn takes?", you'd be right!

With this recent cold/virus/whatever, we have had to add two additional medications to Finn's arsenal.  Add in the Periactin that we rotated in at the beginning of the year and that would be three new medications in a six week time span.  Since last April we had been holding steady at 12.  So now, 15.

That's a lot to remember and balance as most of these medications need to be given twice a day.  Here's the breakdown:

5 inhaled medications--3 are only once a day, and 2 are given twice a day
6 liquid medications--1 is given 3 times a day, 3 are needed 2 times a day, and 2 are needed once a day
2 "powders"--both are given once a day
2 capsules--1 is given twice a day and the other is his enzymes that are given with every drink, meal, etc.

To make this more complicated (really, do we need to?), the easiest medications to give are the capsules.  Out of the liquids, Finn only likes the taste of 1 of them.  There is one other liquid that I coerce him into taking as it isn't absolutely horrible.  The other 4 need to be mixed into liquids so that he will take him.  The 2 powders also need to get mixed into liquids.  That's a lot of liquid mixing.  Oh, and of course, there's the extra salt he needs which I haven't counted in the rest of this.

It's a mess and a pain and I'll admit that I haven't always remembered everything.  And I know I need to write it all down at some point here in the next couple of months, just in case someone else has to try to do it for a day or two.  But I guess I'll wait until we're a bit closer as who knows what will change before then??

Sunday, February 24, 2013

One of *those* weeks

So, the trip to the pediatrician has mixed reviews.  For the most part, I felt that I was listened to and that she took my concerns seriously.  Unfortunately, I was a bit distracted and forgot to ask her to swab Kai for the flu or any of those other things (croup, RSV, etc.)  See, as we pulled into the parking lot at the doctor's office, Finn lost his breakfast all over the car.  So, I had to do a makeshift job of cleaning the car and the carseat and had to strip him of his coat.  His pants still had a bit of a smell to them, but there was nothing more I could do.  We made it through the appointment pretty well, so that was a victory.  The doctor diagnosed Kai with a "nasty" cold, although on the exit paperwork it said URI (upper respiratory infection) which sounds a bit better than "cold" but still.  We paid a whole lot of money to hear the word "cold".

Finn was coughing a bit on Monday but by Tuesday he definitely had Kai's virus.....whatever it is.  So, we increased treatments to 3 times a day and hoped for the best.  I debated on sending Kai to school on Tuesday, but ended up deciding to keep him home.  I was grateful for that decision when early that afternoon he lost his entire lunch.  Grr.....every time I thought someone was getting better......
At least they don't *look* sick

Wednesday morning Finn's cough was sounding bad.  So we made the move to 4 treatments a day.  This was the day that I realized why it is hard for me to do 4 treatments a day---all of Finn's equipment is in the basement in front of the TV.  To do treatments we all have to stop what we're doing, make sure we're down stairs and sit down in front of the TV.  4 times a day??  Really?  Too hard.  So, we improvised and brought his equipment upstairs.  It made a BIG difference for us.
The only way we can get in 4 treatments a day.  See that washcloth?  Finn walked around with that cold, damp washcloth for 3 days.  I actually think it kept his temperature down at times.  But he ended up chapping his lips because of it.  It's taken me two days to get his lips back to normal!

I just happened to hear about snow headed our way on Wednesday night that morning and realized that I better send Kai to school.  He was still sounding pretty bad, but I wasn't sure that he would get another chance at school this week and according to school standards he was fine to go.  So, off he went.  And then I spent the next 3 hours missing him.  Funny, huh??  He had been home for 5 straight days, why would I miss him for 3 hours?  But I did.  And then the snow started to fall that night...

Finn ended up moving into my bed on Wednesday night despite his protests.  I think it's funny that he likes sleeping with Kai in that room so much that he no longer wants to sleep in my bed.  But unfortunately I'm 7 months (almost 8) pregnant and I can't squish into his bed comfortably any more and I also can't keep getting up every 30 minutes to help him through his coughing fit.  Being in my bed just made a lot more sense for those reasons and so that Kai could get his sleep.  (Oh yeah, he [Kai] had spent 2 nights sleeping on a mattress in the living room, but we moved him back to his bedroom on Tuesday after we saw that the codeine cough syrup helped him to not cough at night and that the light in the living room made it difficult for him to sleep.  It made sense to have him back in his normal bed in his room.)

Thursday school was indeed closed for snow and so the boys and I were home yet again.  This day I learned why parents put their kids in front of the TV when they are sick.  Every time I sent the boys off to play I would end up with two boys in tears within 5 minutes.  They were just tired, sick, and miserable.  In fact, they both asked to take a nap that day!  So, we all napped together.  I also called into Finn's CF clinic this day and let them know what we were dealing with (cough, fever, lack of appetite, vomiting from coughing so hard, etc.)  They prescribed an antibiotic for him and encouraged us to keep the increased treatment.  His fever spiked as high as 101.8 this day.  Drats!  Also on Thursday Reid came down with whatever this virus is and stayed home from work.  He spent the entire day locked in the guest room napping.
The only way to keep the peace this day.

Friday our school district decided to open (a questionable decision in my opinion) and once again I was torn about sending Kai as he was still not always keeping his food down and has a nasty barking cough.  Thankfully, around 8am we got an email from Kai's teacher indicating that the heating in the building was not working and so the elementary school was closing for the day.  What good fortune that just Kai's school closed for the day!  We/I needed him home that day!

Finally, Saturday arrived.  Both boys had been invited to birthday parties, but I declined for Finn.  He was just too sick to go.  After a lot of wavering, I decided to let Kai go to his party.  I was glad I did as he had a great time and was able to see most of his school class there.  But it did make for a busy day.  We dropped Reid's car off at the dealer for repairs at 9am and then headed home to drop off Reid and Finn.  Kai and I then went grocery shopping and present shopping.  The lines at Wal-Mart were crazy and I didn't know why at that point.  After lunch it was back in the car to drop Kai off at the party and take Reid back to the dealer to claim his car.  Finn fell asleep on this journey (thankfully--he had spent the past 3 nights sleeping with me and we weren't getting all the sleep we needed) so I decided that I had earned a chocolate concrete from Freddy's.  Yay for drive-throughs!  After just about 30 minutes at home (I put Finn on the couch were he continued to nap) I headed back out to pick up Kai from his birthday party, cancel our membership at the YMCA (we weren't using it) and grab Advil for Reid.  It was on this trip out that someone mentioned the "blizzard" coming.  No wonder everywhere I had gone it had been super busy.  Saturday night Kai fell asleep on the couch at 7pm.  Too bad Finn didn't fall asleep until nearly 10pm (for the second night in a row!)

Today we actually did get a blizzard.  I don't think we got much accumulation but snow has been flying everywhere all day.  Our ward (and most others) canceled our Sunday meetings and so we spent the day at home again.  Kai is sounding much better and actually kept all of his food down today.  He is down 2.5 pounds from this crazy and icky week.  Finn, however, still has something going on that I don't know what it is.  I'm thinking he might be struggling with asthma attacks, but I don't know.  His albuterol inhaler (rescue inhaler for attacks) isn't working at all.  He is having coughing fits that last a good 5 minutes at a time.  It's hard coughing that results in bringing up a fair amount of mucus and a little food at times (thankfully he is not emptying his entire tummy).  And this afternoon he was turning red and having a hard time talking at all.  It is hard to watch and not know what to do.  He even grabbed his inhaler at one point and told me he needed it, but he has been getting it nearly every 4 hours all day long and his clinic has said if he needs it more than that he needs to be seen.  If it keeps up tomorrow I'll be making a call again.  (Oh, and he's lost 1.5 pounds this week, too.  NOT good!)
Finn "resting" during one of his coughing spells.  It was the only way to get the coughs to stop.  I eventually decided the best way to contain him so that he didn't get worked up was to give him a bath.  You can't run around in a tub!
They spent the entire afternoon as superheros!  Too bad they were both exhausted.  I found Kai asleep on the couch at 4:30 and had to force him awake so that he would go to bed at a decent hour.

So, that's our crazy week--not in a nutshell.  I'm hoping this next week gets better.  It better or I may just take a vacation!

Finn's Fight

This year's fundraising video.




To see Finn's Story and original video, watch this one.

Monday, February 18, 2013

Snob

I realized this morning that I've become a snob when it comes to doctors.  We deal with them so much that I'll admit that I'm used to personalized attention, a doctor taking their time to answer my questions and thoroughly evaluate my child and hear everything I have to say.  This morning I had to call the pediatrician's office, which is a place that we don't go to all that often.  My boys have their well-checks annually, of course.  Other than that, we make one or two sick visits a year there, and that's it.  So, we rarely go.  When Finn is sick I almost always skip straight to the team at Children's Hospital.  And when Kai gets sick it's never more than just a cold and it passes.  But Kai is still sick and has had a pretty rough weekend.  I might even venture to say that this is the sickest I have seen him in a very long time.  His cough is nasty and persistent (we listened to it for 4 straight hours last night while we all tried to fall asleep).  He had a low-grade fever yesterday (101.6) which is the first time in nearly 5 years that I can remember him having a fever.  He has no appetite and is as close to lethargic as Kai can get.  I want him seen by the doctor.  But here's the catch.  I have no confidence in their ability to tell me anything other than he has a cold.  I'm already stressed that I'm wasting my money and time and we haven't even gone yet.  But Finn's nose is starting to run more and he's coughing--not good.  I want to know what Kai has so that we can make him feel better and so that we'll know what it is that we are all going to be sharing here real soon.  I also think that there's no way I can send Kai to school like this, and so I need a doctor to let me know if I'm right.  Well, let's be honest, even if the doctor says he can go to school, I'm not sending him.  Not like this!

I wish I could explain better how I feel about the pediatrician, but I can't.  I can just say that I have no confidence in being treated as something other than a number.  And that frustrates me.  Kai is not a number and our family certainly is not typical.  Kai being sick isn't much better than Finn being sick, because we know Finn will be soon.  So, we're going to give the doctor a chance.  Thankfully we're seeing a doctor that we've seen before and I remember liking her, so I'm hoping that I'm stressing for nothing.  But my confidence in the health care system just isn't there right now.  And that may have something to do with the last three bills that I've had to call and argue about with my insurance company.  But that's another story.....

Popcorn and movie pajama day on Friday.  I have a feeling our week is going to look a lot more like this.

Friday, February 15, 2013

Valentine's 2013

We had a good Valentine's Day yesterday.  Kai declared it the "best ever"!  One of the things that I love about Kai is that he is so positive and encouraging.  Everything is the "best ever" and everyone is his friend and so wonderful.  He rarely has a bad thing to say about anything.  Even when he has had a hard day.  So, it doesn't take a lot of effort to make him happy and give him the best day "ever"!

Yesterday morning we had our ultrasound, after which we stopped off at Wal-Mart to pick up a few essentials (read milk and diapers in there!) and decided to get lunch at Subway.  It was a special treat for a special day, complete with Icee and Doritos.  What kid doesn't love Icees and Doritos?!

After lunch it was time for school.  He was really looking forward to that and to the class party that was being held.  He was also very excited that I was going to be one of the helpers for the party.  I LOVE being in class with Kai and wish I could do it more often.

Anyway, for the party Kai was asked to make a mailbox.  He did it with his dad and turned a tissue box into a block from the computer game Minecraft.  Both of my boys love that game and it was a very simple mailbox to make.  You should have seen some of the other mailboxes, though.  Oh my, did these parents knock themselves out!

We also made Valentines at home again this year.  We both think it's fun and we enjoyed picking just the right one.  We ended up finding this idea thanks to my sister-in-law (Kai's Aunt Kristi) and he loved it immediately.  And they turned out to be pretty simple as well!  Score.  I also volunteered to bring in cupcakes.  I had fun trying to find easy/pretty cupcake ideas and I thought these turned out great.  They got a lot of rave reviews at the party, so I was feeling pretty domestic.


When Kai got home from the party, though, I noticed that his voice was going out.  I had noticed him coughing a bit more than usual (he's had a weird occasional cough for a couple of months) in class, but his voice had been fine.  However, at the party they had music class and that must have destroyed his voice.

We decided on Papa John's heart shaped pizza for dinner which the boys loved.  And then after that we all exchanged Valentines.  We got the boys these cute animal shaped candy holders with some Hershey Hugs in them.  Reid got me roses and chocolate (perfect!), and I got Reid a board game he had been wanting.  We had a great day!  I'm glad that these days mean so much to Kai as they keep us on our toes and make sure that we do something at least, which if left to ourselves, wouldn't always be done.


This morning Kai woke with a very hoarse voice and junky cough.  I'm glad he has a 4 day weekend from school and we're just going to stay home, clean, and watch movies.  I really want to hook Kai up to the vest and nebulizer.  He's not that sick, but I bet if he had the meds that Finn does he would be better in no time!  Hopefully this doesn't linger too long and none of the rest of us get it.

Thursday, February 14, 2013

Baby Girl

The OB that I see does complimentary 3D ultrasounds at the 28 week mark for their patients.  It's a fun time to watch the baby for a while, get some good pictures, and bring home a DVD of our appointment.  We also did a growth ultrasound today just to check on things.  I know it won't really tell us about CF or not, but it's good to check--just in case.

So, this morning we all loaded up and headed out to the OB to see baby sister.  Kai was excited to get a look, and even Finn seemed to understand a bit of what was going on.  He may actually understand that there is a baby in mommy's tummy now--maybe.

The baby measured at 29 weeks 2 days (which would put her 4 days ahead of her official May 4th due date) and has an estimated weight of 2 pounds 14 ounces.  According to the technician that's a normal size for a baby at this point, but I was surprised by how big she is.  It makes me feel a tad better about all of the weight gain.  She really is getting big and getting ready to come see us!

As at her 20 week ultrasound, she was not a fan of us looking at her.  She eventually turned her face into my back and went to sleep.  Silly girl!  But we did get a couple of good pictures of her face.  I think I see Finn in her, but maybe that's just because I watch Finn sleep more and he still has the more babyish face of the two boys.  I told my boys that I hope she looks just like them because they are super cute.  Granted, I am a bit biased, but you should have seen them this morning at the doctor.  They both wore their Mom's Super Dude shirts and really were being hams.  Everyone loved them...as always!



Don't mind the umbilical cord draped over her shoulder  :)
  After the appointment I had a quick check in with the NP and got my Rhogam shot.  I was happy to find that everything is looking normal and I passed my glucose screen.  Wahoo!  And then I went to the receptionist and booked my remaining appointments until baby girl gets here.  We'll have another ultrasound at 36 weeks just to check position (she was head down already today) and everything else.  That falls on April 10th.  So, I guess these pictures will have to do until then!

Wednesday, February 13, 2013

Glasses anyone?

At CostCo this weekend the boys discovered the 3D television.  It was showing Finding Nemo and I had a hard time pulling them away.  But let's be honest, when they look this cute, who would want to pull them away??


Also this week, Kai was having his 100th day of Kindergarten.  To celebrate, the teachers asked the kids to dress up like they were 100 years old, and bring in 100 items to show off in a "museum".  To get Kai dressed up, Finn and I went out shopping for glasses and suspenders.  In the end, Kai decided he didn't want to dress up for the day, but he did have a great time showing off his tootsie rolls in his museum.  Basically, older kids from other classes would come into the classroom and have to choose 10 kindergartners to ask to count either by 5's or 10's to 100.  Once the kindergartners had completed the task the older kid would get one of the items from the museum.  We had several kids from our ward come through Kai's classroom and it was funny to see them all recognize Kai.  I felt bad that I didn't immediately recognize all of them, but I did figure it out.  Kai declared it the best day ever!  

Trying on glasses to make sure they would fit Kai

Kai counting for Cameron (from our ward) with the only other kid in his reading group,
Jazzy, sitting at the table dressed as 100 years old.

Funny things the boys are up to


I wish I was better at writing down the funny things the boys say.  But there are just a couple from the last month or so that I do remember that I thought I'd share.

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While riding in the car, Finn pipes up from the back, "There's a sock in my shoe!"
Me: "Yes, there is. It's on your foot!"

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At a birthday party for a friend I was helping to serve the food and pour some Root Beer when I overhear Kai saying, "Don't worry.  It's not really beer.  And it's not even made from roots!"

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Finn has grown so much in the last few months, both physically and developmentally.  His speech is finally getting there and he says more and more all of the time.  He has lately taken to using phrases that he hears us use, but he has no idea what they mean or quite how to use them.  For example, to refer to a time in the future he may say "next year/month/week", but never "tomorrow".  And to refer to a past incident he normally says "last year" although sometimes it's "last week".  It's funny because I have a hard time trying to figure out what he's really referring to.

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The boys have taken to playing in a marching band and enjoy grabbing the most obnoxious loud toys they can find and marching around the house with them.  And then Kai asks me if it wasn't the most beautiful marching band I have ever heard.  Umm......yes??

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Finally, the boys enjoy holding hands while riding in the car.  They also like to play games together, one of the big favorites of which is Kai's Razkids reading assignments for school.  I guess it works out well--as Kai loves to "do" treatments with Finn so that they can watch a show together, and Finn loves to "do" homework with Kai.  They are good supporters of each other!


Another park picture, just for fun!

Pictures from January

These boys love each other and really play so well together.

Ok, so I don't normally do belly shots.  But I took this picture because I thought I was so huge at the time!  I am now very comfortable posting this picture because I *wish* I still was only this big.  This pic was taken at 23 weeks.  Ahhh....only 5 1/2 weeks ago.  It's amazing how big someone can get in 5 1/2 weeks!

Kai seems to have inherited some of his dad's art ability (because he certainly didn't get it from me!).
This was done in art class where the teacher put these objects in the middle of their table and the kids had to draw them based on what they saw from where they were sitting.  Kai did a fantastic job!

My first baby girl clothes purchase!  It was on clearance!

For dinner one night we needed some crumbled crackers.  This reminded me of the story
of Ethan (the boys' cousin) dancing on the hamburger buns.

Both boys needed to have their turn.
The first two weeks or so on periactin Finn was a different kid.  He honestly ate 3 meals a day with snacks in between.
If you asked if he was hungry he would say no, but then you could just put food in his hands and it would go straight to his mouth.  Seriously, amazing!
This was the other side effect of periactin.  Doesn't he look like an angel sleeping like that?  He sure puts on a good act, that's for sure!

We had a good run of warm weather in January (which is pretty typical for us) and so Finn and I spent a fair amount of time at the park.  He LOVES the park and the slides and the swings.  It's fun to see him have such a great time!

Tuesday, February 12, 2013

Celebrity Scoop Night

Last June the boys and I were at Maggie Moo's early one morning.  It was just us and the manager at the time.  I remember her being very friendly and talkative and so I decided to ask her about a CF fundraiser.  She was really interested in the idea and very supportive.  She gave me her card and told me to call when we were ready to do one.

Fast forward to January 2013 and I have renewed our Great Strides team for the year.  Of course, then the walk coordinator calls and we start talking fundraisers.  I mention the Maggie Moo's opportunity and decide that I should try to make it work.  So, I posted on Facebook asking for help in locating a local "celebrity", someone that people would be willing to see scoop ice cream.  Within 2 hours I got a couple of responses and took my post down because I realized that I was getting more and more committed to this fundraiser and I hadn't called Maggie Moo's yet.  So, at that point, that's what I did.  Only to find out that Maggie Moo's didn't exist anymore.  It had been bought out by a local ice cream shop--the Colorado City Creamery.  I was told to call back the next morning to talk to the manager.  So, the next morning I made the call.  It was the same manager that I had previously spoken to, thank goodness, but she wasn't sure how the new owner would feel about a fundraiser.  So, I typed out a nice email with lots of information and a link to our Great Strides page as well as the possible "celebrities" that we were recruiting for the evening.  And then we waited.

After 4 days the manager got back to me and told me that they were willing to participate and the the CFF would receive 20% of the proceeds from the night.  Perfect!  So, now to find a date.  Here's where it got interesting.  The ice cream shop was willing to offer us a Tuesday or Wednesday night in January or February--only.  Our possible celebrity, World Champion wrestler and MMA fighter Joe Warren, was not available in February.  So we settled on Tuesday January 29th, just 13 days out.  I was stressed!

At about this same time I received a phone call from a local TV sportscaster.  He was interested in helping us and coming out for the event as well.  He even thought he might be able to do a live broadcast from the Creamery!  Wow--awesome!

So, I quickly designed some flyers and started spreading the word.  I used facebook, took flyers to local martial arts studios, and emailed every wrestling team I could find.  It was a lot of work, stress, organization, and uncharted waters for me.  There were several setbacks as I tried to promote the event and it was quite frustrating at times, but I kept hoping the hard work would pay off.

The big night arrived and, of course, snow was in the forecast.  Our celebrity arrived a bit unprepared for what he was to do, and not really educated about the cause either--more frustration.  And the ice cream shop was quiet.  Since there weren't very many people I ordered the boys some hot dogs for dinner before moving on to ice cream.  They were well behaved and great sports that night.  Around 6pm some of our friends began to show up and buy ice cream.  Reid came and visited for a while before taking the boys home about 6:45.  At about 6:30 the sportscaster arrived with his TV camera to film a little spot that would be shown on the 10 o'clock news.  Sheewww....good thing it wasn't live!  At about 6:30pm is when things started to pick up and we had lots of great friends from the ward come out to support us.  Since it was snowing and cold people would come in to the shop and visit for quite a while before leaving.  It was nice to see so many friends come out to support us and buy some ice cream.  I was admittedly disappointed that no one from the wrestling/MMA community came out at all.  In fact, I joked that I could have been the celebrity scooper that night and it wouldn't have mattered.

Sighhh......oh well.  We tried hard and I learned a lot from the experience.  I am disappointed with the results and wish that things had gone differently.  It's hard to find any fundraising motivation after such a big flop, but who knows.  Maybe it'll all wear off in a month or so and I feel inspired again.  We'll see.  We raised $44 in ice cream sales and $87 in pin-up sales (additional donations).  A grand total of $131.

Joe Warren in the green on the left and Sam Farnsworth (channel 11 KKTV news)



Finn's best friend Tate came out for ice cream, too.