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!!!
Sunday, March 10, 2013
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:
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!)
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| Sunrise over Rochester |
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| Tired little boy |
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| playing his leapster (Thanks Nana and Papa!) |
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| Later in the day, my boys snacking, waiting for the next appointment |
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| Daddy loves his Coke! |
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| Got bored, so played with the wrap from his blood draw |
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| 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!)
Monday, November 26, 2012
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.....
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.....
Wednesday, September 5, 2012
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 :)
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 :)
Monday, May 7, 2012
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
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.
Progress!!! And a new plan...
Finally. Sax is finally making progress!!!
We thought he was doing so well Friday night when we got home and he pooped 3 times! We figured he would keep going and going and going after being pumped up with 1 1/2 liters of Golytely.
But that was the beginning - and the end - of his progress.
Saturday we had the Great Strides walk, which Sax walked most of, but that didn't help move things along either. He went once Saturday night, once Sunday (which finally wasn't green!) and - wait for it!!!! - twice so far today - and not green!!! Yay!! That means the old stuff is well on its way of being cleaned out!
Tomorrow morning Saxon will be getting another scan of his tummy done so we can see how much "stuff" is still sitting in there. (Yup - they're sending me a copy of the scan, haha!)
We have a plan of attack: For about the next 10 days, we're going to be giving Sax 2 doses of Miralax - once in the morning, once in the evening. After that, we're going to a maintenance plan of Miralax 1x per day every day instead of only as needed. We're being proactive to prevent any more constipation with him.
Hopefully we won't be having many more 'crappy' conversations any time soon!
We thought he was doing so well Friday night when we got home and he pooped 3 times! We figured he would keep going and going and going after being pumped up with 1 1/2 liters of Golytely.
But that was the beginning - and the end - of his progress.
Saturday we had the Great Strides walk, which Sax walked most of, but that didn't help move things along either. He went once Saturday night, once Sunday (which finally wasn't green!) and - wait for it!!!! - twice so far today - and not green!!! Yay!! That means the old stuff is well on its way of being cleaned out!
Tomorrow morning Saxon will be getting another scan of his tummy done so we can see how much "stuff" is still sitting in there. (Yup - they're sending me a copy of the scan, haha!)
We have a plan of attack: For about the next 10 days, we're going to be giving Sax 2 doses of Miralax - once in the morning, once in the evening. After that, we're going to a maintenance plan of Miralax 1x per day every day instead of only as needed. We're being proactive to prevent any more constipation with him.
Hopefully we won't be having many more 'crappy' conversations any time soon!
Friday, May 4, 2012
Waiting and waiting and waiting....
Dr P and Vicki decided at 11:30 we needed to change his dosage from 6 syringes given every 1/2 hour-hour we are going to give him 1 syringe every 10 minutes through his tube. I went to get Vicki after Sax got his noon dose because when he looked at me as I was adding it, he looked like he was going to throw up on me :( And he said his tummy hurts now.
We had picked up some lunch about 11 - he got a grilled cheese and bacon sandwich, fruit, and chips. He's still eating good, and he did pee. We're pumping him full of OJ and water too to keep him from getting dehydrated.
Vicki just came in after we had her paged. Sax was complaining that his tummy was hurting. We're going to give him a break for about a half an hour while the Golytely does it's job.
TMI Moment:
According to our nurse, the way that Golytely actually works is by breaking down all the stool that is packed in there and making it liquidy, which helps it come out easier. Dr P said everything in there is really pebbly right now, which is why Sax is have wet gas and it is coming out about this color green. Ewww!!!
As I was typing this entry, Sax started yelling "I got big news!! I got big news!!" Daddy asked what his big news is... "I'm going poopy in my diaper!"
I'll bet the nurses were laughing at the site of us - I jumped up and grabbed Sax's hand and took off running down the hallway. Vicki had said that there was a bathroom at the end of the hall so we wouldn't have to go out to the main corridor. I yelled "Vicki, where's that bathroom?!?!?" She started running, with me and Sax running behind, and Scot bringing up the rear with the diaper bag to get the little man in there.
He didn't go once we got in there :( But his tummy is starting to gurgle and make noise!! That's a good sign that the medication is starting to work!!!
We had picked up some lunch about 11 - he got a grilled cheese and bacon sandwich, fruit, and chips. He's still eating good, and he did pee. We're pumping him full of OJ and water too to keep him from getting dehydrated.
Vicki just came in after we had her paged. Sax was complaining that his tummy was hurting. We're going to give him a break for about a half an hour while the Golytely does it's job.
TMI Moment:
According to our nurse, the way that Golytely actually works is by breaking down all the stool that is packed in there and making it liquidy, which helps it come out easier. Dr P said everything in there is really pebbly right now, which is why Sax is have wet gas and it is coming out about this color green. Ewww!!!
As I was typing this entry, Sax started yelling "I got big news!! I got big news!!" Daddy asked what his big news is... "I'm going poopy in my diaper!"
I'll bet the nurses were laughing at the site of us - I jumped up and grabbed Sax's hand and took off running down the hallway. Vicki had said that there was a bathroom at the end of the hall so we wouldn't have to go out to the main corridor. I yelled "Vicki, where's that bathroom?!?!?" She started running, with me and Sax running behind, and Scot bringing up the rear with the diaper bag to get the little man in there.
He didn't go once we got in there :( But his tummy is starting to gurgle and make noise!! That's a good sign that the medication is starting to work!!!
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