Time for a Tune-Up

We got the call we've been waiting for from the doctor's office.  The plans are all set.  Next Wednesday, May 8th, I'll be taking him in for an appointment with Dr Cofer, his ENT.  This will be for his pre-op consult.  I will have to call in on Wednesday night to find out his report time for Thursday.  He will have surgery on Thursday.  They will be doing a bronchoscopy along with removing the polyp.  Marcia, the other CF nurse, said that the "gunk" in Saxon's nose is actually tissue - and the start of more polyps. Dr Cofer is going to clean all of that out.  Then he will be admitted to the hospital for a 'tune-up'.  I'm not sure what all that entails, but from asking a few friends with CF, it sounds like he will be doing extra treatments and IV antibiotics.  Dr Cofer and Dr P want to be thorough.  After they clean him out, they want to be sure we kill off all the bad stuff.  Hopefully we'll be able to avoid antibiotics for a while then!!!!

In the mean time, we've been (trying to) enjoy the weather.  The weekend was gorgeous - spring really was here with temps in the 70s, sunshine, and the grass started turning green!  It was sooooo nice.  We went for a few walks - one day around the lake, another day on the trail near our house.  Sax enjoyed the trail more than the lake.  You can see why....

 He had never held a turtle before - and we saw 3 of them along the way!  Mommy caught a little one to show him, then he caught these two.  He was pretty excited!!!  He really wanted to keep one and bring it home, but I convinced him that it was better to leave it there and we could come visit it on another walk.


We also spent quite a bit of time playing outside.  The kids have taken some boards and old pallets and have been practicing hammering in nails.  Sax was a little mad, if you can't tell, because he was pounding a nail into some wood "and I heard a plop.  A bird pooped on my pants!!"

 But check out that gorgeous sunset!!!


If only the great weather would have lasted.....


Because this morning, this is what we woke up to...

3 of the 4 sides of our fence were damaged by fallen branches.  Scot didn't go in to work right away because the shop didn't have any power.  The city police were contacting the television stations and telling everyone to stay off the roads because of downed power lines and trees.  The kids enjoyed a snow day... on May 2!!!!  Various parts of town ended up with 11-14" by the time it was done.  It was heavy, wet snow, perfect for making a snowman.... or a snow fort.

The shoveling wasn't too easy though!! "This is hard work" as he is shoveling the neighbor's driveway.

Raine is really hoping there is school tomorrow.  We're supposed to get a little more snow tonight and tomorrow, then it's supposed to switch over to rain.  Our Great Strides walk is still on for Saturday - we're just a little bit worried about actually getting there if the roads are too bad.  I hope so, cuz I dyed my hair, Saxon's hair, and Scot's goatee purple (well, mine and Scot's are actually dark burgundy.)  Tomorrow I'm planning to do Raine's.  

But maybe with this weather, we'll just need purple stocking caps??

Spring is finally here!!

It has been an odd spring so far.... especially considering we had a couple inches of snow only 3 days ago!!  Today it was FINALLY warm enough to turn off the heat and to open all the windows in the house.

I know I've been absent a bit from Bloggingland, but it's been crazy busy around here with doctor appointments, home school, and the house addition.  Sax is still working on home school stuff, but we have cut back a little bit and are focusing more on reading and learning words.  He's very independent and self-motivated though!!  I went to get his numbers workbook (which I had picked up at the dollar store) and found he had gone ahead and done a few pages all on his own!  I am so very proud of the work he has been doing and the effort he puts into it!!  He worries about missing out on fun or playtime, but I make sure he gets plenty of that.  Often he will work on his workbooks while his sister is doing her homework, so they are doing it together and he feels more like a big boy.

Since the weather was so nice today, we decided to walk to the park after lunch and play until Raine got done with school and we had to pick her up.  He loves going down the slide, and played on the swings for a while.  He also tried the monkey bars, which is pretty appropriate since he is quite the monkey!!!

When we got home from school, the two of them went out to play in the back yard since it's finally dried up a little bit.  Hopefully the clay won't stick to them too bad and the fresh air will wear them out.  If the weather is nice still tomorrow, I am thinking about taking the kids to the state park for a picnic since it sounds like daddy may have to work.

We are nearing completion on the house addition - the bathroom had a few more things it needs, the living room just needs trim and flooring, the mudroom and closet need paint, trim, and flooring (but they were intentionally left for last since everything had been piled in those 2 areas), and we still need to get the siding on the house.

On Monday Sax had to go in for a CT.  He had just finished his 4th round of antibiotics since January, and his nose was still running green and congested.  A trip to Urgent Care a couple weeks ago had found him to have a sinus infection, so I had alerted Vicki because I was concerned after so many rounds of antibiotics and the recurring stuffiness.  Dr P's flag went up too when he heard about it, which is why he ordered the CT.

Vicki called Monday afternoon to tell us that she saw a small polyp and some 'gunk' in his left sinus, and that it looked 'pretty bad.'  Dr P was out of the office for a few days, but I got a response from him today.  Vicki said he had looked at the scan and sent a note to Dr Cofer's office to see if Sax can get in for a check up sooner than what he's scheduled.  Apparently the "gunk" Vicki thought she saw is actually flesh and is most likely more polyps.  He put Saxon back on another antibiotic - this time 3x per day - that he will stay on until we get in to see ENT.  Dr P is pretty sure Sax is going to need yet another sinus surgery, and soon.  So now it's a bit of a waiting game.  If I don't hear from ENT by Friday, I'm supposed to give them a call.  So hopefully we hear from them soon!!!!

An Intro to Homeschool

Sax is feeling better.  His appetite is back with force! He's been eating Kudos bars - he says his favorite is both Snickers and M&M's.  Normally I wouldn't buy those more expensive bars, but since it's something he will eat and they have a little more in the way of calories than granola bars, we've decided the extra expense is worth it.  Especially since he's been eating anywhere from 2 to 4 at a time.  Sax has also decided he likes "beef roast" sandwiches (Arby's roast beef sandwiches).  We're still trying to work more and more foods in.  One of his other favorites is rice.  We picked up a bunch of Knorr Rice Sides on sale, which made the little man very happy!

Mom and Sax have also been working on our homeschooling.  A friend added us to a facebook homeschool support group that she belongs to.  I'm also looking into the Minnesota HomeSchool Association.  They have many resources available, and annual membership is very minimal.  This week our new workbook should be arriving too!!  Kinda excited for that!  We are going to use page protectors over the worksheets so we can reuse them multiple times.  I'm working on a schedule for our studying and have been trying out various things to see how they'll work.

I tried playing videos through YouTube for his Science last week.  We combined art with Science.  We watched 3 videos, about 10 minutes each, about dragonflies, tadpoles, and caterpillars and talked about metamorphosis.  After that, Sax drew pictures of the 3 main stages of tadpole metamorphosis (egg, tadpole, frog) and caterpillar metamorphosis (caterpillar, pupa, butterfly.) I need to go through and screen a few more videos.  Instead of watching them through the computer, though, I'm going to stream them through the Wii since we have that hooked up online now.  I've also been watching for specials on Animal Planet, Discovery Channel, and On Demand.  We watched a couple interesting ones on deep sea life. (I think the bright colors help keep his attention.)  We've also found a few good workbooks at the Dollar Tree - numbers, shapes and colors, letters, and first words.

I'm planning a trip back to the library this week for us - maybe for storytime if we can get going early enough (we're really not morning people!)  We need to get some new books too.  I've looked for books about homeschooling, but haven't had much luck, so I'm just going with my own thing right now and seeing what is and isn't working for him.  I think once construction is done and the office is set up, it will help.  We will be able to go in there, close the doors, and be away from distractions.

I'm off to find more videos for my Scrappyman for this week.  I'm really hoping this all works out as we plan!!!

Checkups and Norovirus

Sax had clinic on 2/18.  His chest xrays came back clear, his vitamin levels were good, and his weight was steady.  It was a full and busy day, with clinic appointments from 7 am until 4:15 pm.  We did our best to stay busy in between.  We got a beautiful view of the sun coming up. Saxon got to stay in his jammies for about half the morning just because we had to be at the clinic so early.  Some pictures from our day:

Sunrise over Rochester

Tired little boy

playing his leapster (Thanks Nana and Papa!)

Later in the day, my boys snacking, waiting for the next appointment

Daddy loves his Coke!

Got bored, so played with the wrap from his blood draw



Got a little snow while we were waiting

The only negative from his appointment was his culture results.  He cultured h. influenzae again, which is normal, but the amount that he cultured was high.  Dr P prescribed a 2 week treatment with Bactrim for him, which we started the following Saturday, Feb. 23.

On  Feb 26 Sax started having some tummy issues and was throwing up in the morning.  We had thought maybe it was from the Bactrim, except he'd been on it long enough that it didn't make sense.  He laid about most of the day and really didn't eat much or drink much.  Around 4:30 pm, we had some popcorn, which I thought would be good (like crackers) for his tummy.  That didn't stay down either.  This pattern continued all the way through Saturday, so he really didn't eat much of anything and wasn't drinking much.  I was worried about dehydration, so I called the clinic.  They had the same concerns I did and suggested getting him on Pedialyte to try to prevent dehydration.  It took him until today to finally finish off one bottle of it.  He has had a couple PediaSures since Saturday too, but he still isn't going to the bathroom much.  They are pretty sure his vomiting was caused by norovirus.

Last night when Sax started getting tired and whiny, I suggested he lay in my bed for a little bit.  He had been really clingy and had a few meltdowns.  He just didn't seem to be feeling very well and just wanted his mommy.  He had been coughing a little in evening too, which got worse as he was laying down, and he was breathing kind of heavy.  After an hour or so of tossing and turning, he decided he wanted to lay in his bed and wanted me to lay with him.  Less than an hour later, and more tossing, turning, and coughing, we decided to come down to the living room.  Sax said his throat, tummy, and back all hurt.  In the end, he slept on me in the recliner.  He was still up about every hour, so I decided we needed to call in to the clinic again.

When I heard back from Vicki, she thought this had been going on long enough, so we went in to see our local CF doc, Dr U.  Apparently mono and strep are going around in addition to the flu.  All of his labs came back normal, but there is a chance that the 24 hour strep culture comes back positive.  For now, we're going to go back on the Bactrim and really push the Pedialyte.  Unfortunately his weight dropped from 16.4 kg at his checkup on 2/18 down to 15.4 kg today.  He's so skinny as it is, we need to really push to get his weight back up.  He doesn't have any extra fat or weight he can afford to lose.

I was really happy that Sax's appetite seemed to perk up a bit at supper tonight.  He ate a whole DQ hamburger (minus the bun), a big scoop of mandarin oranges, and half of a mini M&M Blizzard for supper, and about an hour later he asked for a piece of jelly toast and ate a little over 1/2 of that.  We're going to be hitting the PediaSure and DuoCal hard this next week, and adding in some ScandiShakes.  I have to call or email the clinic tomorrow to let them know how he's doing, and I'm going to see about getting him back on weekly weigh-ins at our local clinic.  That way we can keep better track of his weight and catch any drops right when they happen.  Hopefully he'll be feeling better soon!! (and hopefully I'll have time/remember to update again soon!)

Best. CF. Clinic. Visit. EVER!!!

Even Vicki and Dr P said it was... but I'll get to that in a second.

We finished up our Christmas shopping today for the kids, save for a few stocking stuffers left to pick up.  Scot, Sax, and I hit up Mill's Fleet Farm first, then hit up a restaurant we've never tried before thanks to a recommendation of a friend: Whistle Binkie's on the Lake.  Nice view, good food, and decent prices :)  We'll be going there again!  We're always looking for somewhere differet to try instead of the usual haunts, which can get old after a while.

Sax did what I can only describe as the most disgusting thing I can think of.... Daddy took him to use the bathroom.  While Daddy had his back turned, Sax decided to wash his hands - thinking the "pee biscuits" in the urinals were soap!!! GROSS!!!  Daddy scrubbed Sax's hands and gave him a huge lecture on what IS and what IS NOT soap.  Ugh - makes me shudder!!!

Sax had to be at the clinic at 1 for his GI appt.  It was just an annual check and everything looked really well, save for some mild bloating.  Dr E ordered a celiac test and vitamin check for his next checkup in Feb.

After GI, we had appointments with Vicki, Dr P, then the dietitian.  I wasn't sure why we were meeting with dietitian other than Sax's BMI has been varying so much.  I figured it would be another pep talk about getting him to do the impossible and gain some weight.

Vicki was in a really good mood when she came in for her appointment with Sax, in spite of a horrible head cold and sinus infection (very thankful she didn't want to share and masked up!)  She checked Sax out and send Dr P in for his part of the checkup.  Dr P seemed a little more excited than normal too... we wondered what was up.

We were told that, since Saxon started coming to CF clinic, he had his very best checkup.  Ever.  They said they have not seen him this healthy in the past 4 years.  His pulse ox was 100% and all the gunk in his lungs has cleared out.

The reason for the appointment with the dietitian, we discovered, was a final push to put some chub on the little man because in January his BMI was 59%, in June his BMI was 37%, and in August at his last appointment his BMI was down to 18%.  With the rate of decline, the discussion of a feeding tube was being approached again.

Well, Sax decided that's not what he wanted - because he finally gained weight.  And quite a bit for the time period!

He went from 14.9 kg to 16.3 kg in the last 3 months.

His BMI went from 18% to 64% in the last 3 months.

For someone with a serious life-shortening disease, hearing that he checks out the healthiest they've ever seen is one helluva reason to celebrate :)

So for his dietitian appointment, we spent the time discussing how we can keep him gaining, and what's going to happen when he turns 5 and we can no longer get WIC to cover his PediaSure.  The dietitian sent me some links and also suggested I look into finding 'homemade pediasure' recipes, which I've started checking into.  I'm hoping we can experiment and maybe find something that will work before we actually do run out of PediaSure.....

Dropping

Haven't had a whole lot to post lately - which is a GOOD thing cuz that means Sax hasn't been sick.

On Friday, though, Sax had his quarterly checkup.  We got to meet the new CF nurse at our clinic - Marcia.  I've talked to her several times on the phone. And Sax has gotten taller.

But he hasn't gained any weight.

He's actually LOST weight.  His BMI has dropped from 26% to 18%.

Sax is going through another "I don't wanna eat" phase.  And it's kinda scary.  I don't want him to have to get a feeding tube.  But I can't force him to eat.  I try offering a variety of different foods for him to eat, but it seems he wants the healthy foods.  He won't dip his apples in carmel.  He doesn't eat fries anymore.  It's frustrating some days.  I guess the saving grace is that he does drink his PediaSure, so we have been loading that up with as many calories as possible.  I have a few tricks up my sleeve still that I'm going to try.  I'll report back on them if they do work out....

Dr P has decided to increase Sax's dosage to 4 Creon 12 with each snack, 5 Creon 12 with each meal, and 6 Creon 12 with fatty meals.  He also scheduled an appointment with GI for when he has his next appointment.

On the bright side - Daddy got inked again!  I took the kids to the park to play while he got his 4th rose - one for every birthday of Saxon's.  Sax decided it should be purple this time :)



Great Strides 2012

This year we had our biggest team walking so far!!!  THANK YOU to everyone who donated to our walk and to everyone who walked!!!

Our walkers this year:
Me & Scot, Raine & Saxon
Amanda & Luke Buchanan & Cindy, Bryson, & Chelsey
Sam Wasmund & Jeremiah
Steph Terry & Zack
Tim & Steph Putzier & Gavin
Mary Holan
Abbey Jacobsen
Dallas Jacobsen

19 walkers - woohoo!!!

Our goal for next year is to get our team up to 25 walkers!!!  If you want to come join us, you're more than welcome!!!  Even if you don't raise any money, we still appreciate everyone who comes!

As of Walk Day, our team as a whole had raised and turned in almost $1,100!!!  I know we still have some money that is being collected, and some that has been collected and not turned in yet.

The day of the walk was a little chilly but not too bad.  I was kind of disappointed with the shorter route - we didn't get to walk as far along the river, which has always been one of our favorite parts of the walk.

To change things up a little bit this year, Scot dyed his goatee purple to increase awareness.  I tried to dye Raine's but it didn't take very well.  We ended up putting purple spray in her hair.  I dyed mine too, but mine came out looking almost black with a purple tint.  Steph Terry dyed hers too!  Hers turned out better than mine - you could tell hers was purple.  Next year I think I may bleach my hair first so that it comes out really purple.  It'll grow out eventually, so no big deal!

So now I'll leave you with some more pictures from this year's walk.

If you haven't yet, there is still time to donate.  Visit my website at www.cff.org/great_strides/melindachristenson



 On the way home, both my little ones were sleeping soundly.  This was Raine's 4th Great Strides walk that she completed, and Saxy walked almost the whole thing for the first time ever.