This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Sunday, March 10, 2013

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!!!

Tuesday, March 5, 2013

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!)