tag:blogger.com,1999:blog-1333981507907053012024-03-13T23:31:14.598-05:00SpittlefishRatatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-133398150790705301.post-55406737125446861722013-08-21T11:09:00.000-05:002013-08-21T11:09:12.676-05:00Almost the End of Summer<div style="text-align: center;">
Not sure where the time goes. Had all kinds of good intentions regarding projects at home, gardening, family outings.... Seems I could hardly keep my head above water in terms of housework, meals, laundry.... Granted we've spent most of our weekends at the lake.</div>
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Our child insisted he needed a pith helmet for hunting. We're not sure what he plans to hunt.</div>
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School starts in less than a week. Trying to set up meetings with his teacher and staff to answer any questions about Cystic Fibrosis and to make sure he gets his enzymes, etc.</div>
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We're still beating him nightly. Focusing on that area on his right upper lobe his doctor was concerned with after his lung scan. He actually asks for CPT (Chest Physiotherapy).</div>
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We're assuming it's just an excuse to stay up later and hopefully not because he's got issues. Fingers crossed. Will have another lung scan in December.</div>
Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com1tag:blogger.com,1999:blog-133398150790705301.post-14589934391109478972013-07-12T11:02:00.000-05:002013-07-12T11:02:00.232-05:00Been Awhile -- Summer 2013<div class="separator" style="clear: both; text-align: center;">
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Hard to believe we started this journey with CF 10 years ago! Seems like only yesterday...</div>
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My last post occurred in December after a CF check up in the Cities, where it was proclaimed by Max's CF Doctor and ENT that he was boring! A good thing. No surprises. Adequate weight gain...</div>
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In June we went back to the City for a lung scan and appointments with the CF Doctor and ENT again. He's gained almost 10 pounds and has grown at least an inch. There are some issues with his upper right lobe. So in addition to his 3 vest treatments a day, we're doing some targeted CPT (chest physiotherapy). He'll got back in December for another lung scan and go from there. May have to look at a tune up (IV antibiotics and hospital stay). He has no cough, sinuses are under control... He also had a high result after a two hour glucose tolerance test. His fasting blood sugars were normal. With his needle phobia, we're just going to monitor it.. Don't think he'd tolerate 2 weeks of glucose checks. We're assuming the high result was due to excessive stress while waiting 2 hours for the second draw.</div>
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Summer means weekends at the lake and spending time with cousins -- playing in the water, watching dvds.... Noticed they're not bundled up like they were in my last post. We've gone fishing, attempted swimming again. Blown up things with fireworks... Weather has been great!</div>
Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-36061046055179739072013-01-08T15:08:00.000-06:002013-07-12T15:30:57.368-05:00Happy New Year<span id="goog_778379938"></span><span id="goog_778379939">Holidays were great! Got spoiled with the extra long weekends. Stayed close to town for Christmas Eve and Christmas Day dinners. Ate way too much and visited with relatives.</span><br />
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Headed to the cities for appointments with the CF doctor and Ear Nose and Throat specialist. CF doctor was pleased with our child's growth. Thank goodness he managed to regain the weight he'd lost during his summer germaphobe phase. Pretty much said he was "boring", which is a good thing in terms of Cystic Fibrosis. Will need to schedule another lung scan when we go back in June since there were some discrepancies last time. He's also improved a little bit with his pfts. Someday he'll master it without spitting all over us. <br />
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Then we went on to the ENT. Discovered a few months ago that insurance doesn't cover the nasal steroid spray at all. It's not even on the non-formulary list, so we end up paying for it 100% or about $80 a month. So we asked about getting a generic or at least a non-formulary, which would get paid about 50%. Also there have been some issues with bloody noses. So the ENT suggested going off the nasal spray for a month, then back on for two, off... To prevent issues with the septum. Already noticing stuffiness, snoring.... Also supposed to return in 6 months unless there are issues.<br />
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Then we hit the Mall of America, Trader Joes, dinner & drinks with friends. Next day we headed to the lake to spend time with some cousins. The boys went snowmobiling and I took Max and his 4 year old cousin out sledding and for a walk. Was stinkin' cold! Went inside for hot cocoa, but Finn insisted she'd rather have a Popsicle. Brrr!<br />
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Planning a trip to Orlando in the near future for a week of amusement park fun. Max's aunt & uncle are joining us for a few days. Then in February we're headed to the cities to see the Book of Mormon. Also hoping to spend more time at Trader Joes. Had limited space in the car with all our gear, as well as luggage and Xmas presents from an extra passenger we gave a ride to back up north. Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-14592816237579394532012-12-14T11:30:00.000-06:002012-12-14T11:30:02.929-06:00What Happened to Autumn?Can't believe how quickly time passes! Since my last post we've celebrated Halloween! This year our son wanted to be a Mummy! I glued gauze to a white shirt, wrapped his head. Unfortunately I was unable to find any white sweatpants. Most were located in the girl's department and had pink or purple glitter logos. So I opted for.... Shhhh! Don't tell him... Off-white tights, which I referred to as pants with feet.<br />
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Here he is at our friend's home after getting a bag of loot. They always get him the coolest things, although this years included Mexican Jumping Beans and those creepy little things ONLY jump in the middle of the night when everyone else is sleeping or gone. Try watching Criminal Minds and hearing the scritch scritch of jumping beans in the dead of night.<br />
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Next up we had November and cooler weather. Snuggling in on weekends with his furry brother.<br />
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We also had Thanksgiving with a over 48 relatives attending. You may recall we also had a special meeting (intervention?) at his school in October. As parents we had to take 2 extensive tests regarding behavior, psychology.... Results came back and our child is normal. Not attention deficit. It was explained that if he truly had issues, it wouldn't just be happening at school and we as parents would be mentally wrecked. He just has other things on his mind, tries to avoid doing any work he perceives is too hard. He also graduated from Occupational Therapy which he was in due to writing issues. Anyway, they don't want to see him slip thru the cracks, so he'll continue to monitored, but he's now expected to complete school work in class and if he doesn't.... It gets sent home with him. And if he does well, each week we're setting up some sort of reward program. New app on the ipad, steak dinner. We believe a lot of his issues stem from whatever happened back in July to turn him into a raving germaphobe.<br />
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December arrived and it was a balmy 58F. Went to Christmas on the Prairie with Grandpa. Ate cookies, listened to music, got to make a key chain with the blacksmith, go on carriage rides....<br />
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Semi Annual Doctor's appointment and flu shot. Talked a good game and wasn't going to freak out, but when the time came, Mommy almost got a needle in the leg again. Weight was disappointing for the doctor and with SP in the room with me, I couldn't really explain that he'd actually regained weight from his germaphobic freak out phase this summer. <br />
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He's been eating steak, chocolate chip cookies... And the other night he finally tipped the scales at 61.8 pounds. So he weighs more than he did back in June. Just have to keep on it. He ate 5 cookies 3 nights in a row. I had to make cookies over my lunch hour. Had a bit of a scare a couple days ago when he picked up a dreaded stomach bug; however, it was very short lived. Phew!<br />
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Finally got the tree up and decorated this weekend. Next up we've got a wedding to attend this weekend. Next up is finishing holiday shopping. Wrapping presents... Enjoying the holidays and then a trip to the City for CF and ENT appointments. Hopefully he'll have gained even MORE weight by then.<br />
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Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-6110926285081485852012-10-25T16:31:00.001-05:002012-10-25T16:31:23.338-05:00Autumn has arrived<div style="text-align: center;">
Here's an out take from the wedding photos last month. I just find it hysterically funny with the bride struggling to hold onto her crying niece and Max the Ringbear running off in the background. </div>
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We have a new addition to our family. Our automobile family. Picked up a 1974 VW Microbus. It runs, but needs new tires and a little engine work. Interior is in great shape. Anxious to road trip in it this summer.</div>
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We had our first school conference for the year. Due to some of the behavioral issues in class we had a combination meeting with several staff members. After brainstorming for nearly 2 hours we came to the conclusion that he's got some anxiety issues. Could be due to realizing he's different because of his cf, could be partly because he has a heck of a time writing -- takes him FOREVER to write. He's doing above average = excellent in all his classes. Mostly A's and B's. He's exclaimed a few times before even attempting to do homework that it's "too hard". Believe he panics that it's going to take to long. Think the staff had their eyes opened a bit to in terms of how much the poor kid spends on vest & nebulizer treatments at the expense of play time and being a normal child. </div>
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On a good note Max no longer needs speech services, so that means he won't be taken out of class weekly. He still needs OT for his writing. While it'd be much easier to just put him in front of a computer and say "here, type it out", the kid is eventually going to have to learn to write.</div>
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Halloween is in less than a week. He wants to be a mummy. So I picked up gauze. Should be interesting. This weekend we're going to carve pumpkins and his grandparents house and order pumpkin shaped take-n-bake pizza for supper.</div>
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Max also gets his bible during church this Sunday. Apparently his parents aka the heathens are supposed to go up in front of the church, put our hands on his shoulders and get blessed. Not sure if this is some new age Lutheran thing or what. But it's a surprise for Max and I'm sure he'll be thrilled. We were supposed to highlight special passages for him. Being the lapsed Presbyterian that I am, I only had a couple I could think of. Then I emailed the right reverend (my dad) and he came up with a few as well. I was tempted to use the line Samuel L. Jackson used in Pulp Fiction... :)</div>
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Days are getting shorter and cooler. Appointments for flu shots and follow up doctor's appointments have been scheduled for the coming months. Local CF/Pediatrician, then CF Doctor and ENT in City.</div>
Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-48031985295687937752012-10-08T10:51:00.001-05:002012-10-08T10:51:24.007-05:00Brewers Ball 2012 <div style="text-align: center;">
Friday night was the 2nd Annual Brewer's Ball for Cystic Fibrosis! </div>
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Helped set up in the morning. We had two, 99 bottles of beer to auction off.</div>
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I opted not to wear the blue blouse. Not because my boobs were hanging out, but because it reminded me of the maternity tops I wore when pregnant with Max.</div>
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Friend of ours opted to wear a kilt. My husband thinks he needs one now!</div>
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The two brothers. </div>
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Cousins</div>
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Save the date for next year!</div>
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Arrived home after 2 am to find our child was wide awake and demanding nachos. So he had his snack while our friends son "rested" on the couch next to him.</div>
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We raised over $60,000 for research for the Cystic Fibrosis Foundation. We laughed and cried. Ate and drank way too much! But it's for the kids! :)</div>
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Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-73339184833847897332012-09-12T11:27:00.001-05:002012-09-12T11:27:01.018-05:00Fall Has Arrived..for nowAfter unseasonably dry, warm weather it's begun to cool off here. The leaves are starting to turn and fall off the trees. Days are getting shorter and soon I'll probably need to take a different route on my evening walks because the park seems a tad spooky once the sun begins to set. Apparently by next weekend the temps will be back up in the mid to upper 80s. Yea! I love the change in seasons, but the cooler temps can just hold off a bit longer.<br />
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We had our annual family golf tournament. Change of venue this year, so I had to buy some lefty clubs since they didn't have rentals. Miniature golf is more my speed; however, we had a great time and the kids all got to ride back home in Cousin Jay's vintage fire truck. </div>
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The last week or so we've been thrilled to have our happy little boy back. He's not as concerned with germs and food. We got an email from his teacher concerned with his not eating snacks. We suspect he was concerned about the other child at his school with CF. Apparently they ran into each other in the office and while Max knows to keep his distance, the other child didn't. We explained 3' rule and short of coughing on or licking each other, they should be okay. So he's been eating and drinking better. Hopefully we can get his weight up before his well child and cf clinic appointments this Fall/Winter.</div>
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Last weekend he was a ring bearer in his cousin's wedding. Or ring BEAR as he liked to refer to himself and growled at people before the wedding. Being I was in charge of the camera, I don't believe there are any photos of me this time around. And I actually wore a dress and heels again.</div>
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So life is good. I've gotten of my pity pot. There are others who have it much worse than us. Need not to worry so much!</div>
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Just a few weeks until the 2nd Annual Brewer's Ball. Should be awesome!</div>
Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-38384141387984986412012-08-31T10:55:00.002-05:002012-08-31T10:55:30.142-05:00Stress, Stress and more stress<div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0in;">
<span style="font-family: Calibri;">Summer is winding to an end and as usual I had good intentions.<span style="mso-spacerun: yes;"> </span>One would think with the days being significantly longer in the upper northern plains and no homework to deal with I’d accomplish my goals. Keep up with the yard work – weeding the garden, get perennial plants established around the house and garage.<span style="mso-spacerun: yes;"> </span>Care for the ones we have…<span style="mso-spacerun: yes;"> </span>Then there are all the things I wanted to accomplish with Spittlefish.<span style="mso-spacerun: yes;"> </span>Teach him to swim and ride his bike…<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">Don’t get me wrong it’s been a wonderful summer.<span style="mso-spacerun: yes;"> </span>Virtually no rain, meaning no mosquitoes.<span style="mso-spacerun: yes;"> </span>I’ve been able to spend some time on our patio reading and visiting with friends over beers…<span style="mso-spacerun: yes;"> </span>And I’ve been able to walk outside instead of being holed up in the basement on the treadmill.<span style="mso-spacerun: yes;"> </span>Still haven’t lost any weight, but at least I’m taking a proactive stance on my health in terms of exercise.<span style="mso-spacerun: yes;"> </span>And we’ve been able to spend most weekends at my in-laws lake home so Spittlefish can spend time with his grandparents and cousins.</span></div>
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<span style="font-family: Calibri;">Spittlefish goes to a daycare during the day while we work.<span style="mso-spacerun: yes;"> </span>And one of the things I’ve absolutely LOVED about it, is how they keep the children active.<span style="mso-spacerun: yes;"> </span>Walking, trips to playgrounds, swimming pools, sporting activities, field trips… They’re VERY busy!<span style="mso-spacerun: yes;"> </span>So when he gets home, the last thing he wants to do is spend any time outside.<span style="mso-spacerun: yes;"> </span>After his treatment and supper, he just wants to relax.<span style="mso-spacerun: yes;"> </span>Plus two nights out of the week he had gymnastics.<span style="mso-spacerun: yes;"> </span>So learning to ride his bike sans training wheels… nope!</span></div>
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<span style="font-family: Calibri;">Without going into a whole lot of detail, we’ve also had some stress in our household with some behavioral issues.<span style="mso-spacerun: yes;"> </span>About mid-July, our son suddenly became obsessed with germs.<span style="mso-spacerun: yes;"> </span>I can pretty much pinpoint when it happened and who told him he could get sick from germs, but that’s not going to fix the problems.<span style="mso-spacerun: yes;"> </span>Our happy go lucky child suddenly became a worrier, whiney and secretive – evasive in order to avoid conflict.<span style="mso-spacerun: yes;"> </span>We’ve tried reason, bribery, punishment…<span style="mso-spacerun: yes;"> </span>And things have improved, though are not quite where they should be.<span style="mso-spacerun: yes;"> </span>I posted some of this on some of the CF sites and pretty much got even more stressed out (FREAKED OUT) by well meaning individuals talking about OCD and aversion issues.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">While we’re gradually getting over the germ phobia and mostly it happens when he’s overly tired, it’s now lead to eating issues.<span style="mso-spacerun: yes;"> </span>Used to be I wasn’t too concerned about whether or not he’d eat his school lunch because he’d get a snack at school (peanuts), at daycare and on the car ride home he’d down a fortified juice drink and eat another package of peanuts or some other snack item.<span style="mso-spacerun: yes;"> </span>Then he’d snack during his vest treatment, have supper and usually down another snack before bed or drink juice throughout the evening.</span></div>
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<span style="font-family: Calibri;">Lately he’s not wanted his “snack for the road” on the way home for daycare, nor has he snacked during his vest…<span style="mso-spacerun: yes;"> </span>Last night I opened up his backpack and found 3 packages of peanuts.<span style="mso-spacerun: yes;"> </span>So for the past 3 days he hasn’t been eating his school snack.<span style="mso-spacerun: yes;"> </span>I should at least be thrilled that he’s not smart enough to squirrel away the food or toss it.<span style="mso-spacerun: yes;"> </span>Add to that confrontation, he’d told me on the car ride home that he only had 3 carrot sticks for lunch.<span style="mso-spacerun: yes;"> </span>Apparently his French fries had black spots, some food touched some other food and the mustard tasted funny...<span style="mso-spacerun: yes;"> </span>Had him step on the scale and he’s lost weight.</span></div>
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<span style="font-family: Calibri;">So big to do about eating.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I’m beyond frazzled.<span style="mso-spacerun: yes;"> </span>Worried doesn’t really describe how I’m feeling these days.<span style="mso-spacerun: yes;"> </span>We’ve tried to explain that he can get sick if he doesn’t eat, end up in the hospital with ivs.<span style="mso-spacerun: yes;"> </span>That some children have feeding tubes – yep we’ve stooped to scared straight scare tactics.<span style="mso-spacerun: yes;"> </span>That’s going to win me parent of the year.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">It’s not about me.<span style="mso-spacerun: yes;"> </span>It’s about him.<span style="mso-spacerun: yes;"> </span>I DID get him to drink more carnation instant breakfast than usual this morning.<span style="mso-spacerun: yes;"> </span>We’ll see how things go.<span style="mso-spacerun: yes;"> </span>I’m thinking a vacation far far away involving lots and lots of alcohol needs to be in my future. <span style="mso-spacerun: yes;"> </span>Anyone wanna run away with me?<span style="mso-spacerun: yes;"> </span></span></div>
Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-48864969646358026582012-08-13T10:27:00.000-05:002012-08-13T10:27:15.785-05:00Second Annual Brewers Ball for Cystic Fibrosis<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-9xMyYIJX5ug/UCkbPNmcDDI/AAAAAAAAAGA/Pn68ANANeo0/s1600/bbbanner12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="198" mda="true" src="http://2.bp.blogspot.com/-9xMyYIJX5ug/UCkbPNmcDDI/AAAAAAAAAGA/Pn68ANANeo0/s400/bbbanner12.jpg" width="400" /></a></div>
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The Fargo Brewer's Ball for Cystic Fibrosis is less than two months away! </div>
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Friday, October 5th from 7 to Midnight at the Fargo, North Dakota Hilton Garden Inn!</div>
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Time to purchase tickets, sign up for sponsorships, donate any spare bottles of wine or beer you may just happen to have laying around the house! Silent Auction items...?</div>
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<a href="http://fargobrewersball.com/" target="_blank">http://fargobrewersball.com/</a></div>
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Here's a photo of us last year during set up. </div>
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Don't ask me WHY the heck I'm hiding my beer glass behind my back as if I'm back in high school participating in underage drinking. </div>
Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-18164214688035802372012-06-20T13:36:00.001-05:002012-06-20T13:36:17.378-05:00Cystic Fibrosis is a Progressive Disease<div style="text-align: justify;">
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So I'm stating the obvious in the title of this post, but when one has an active, healthy child with no respiratory symptoms, it's easy to forget about CF. Sure, he has to take enzymes, antibiotics, supplements, pills to make his liver happy... But he doesn't cough, lungs sound healthy... </div>
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Last week we took our semi-annual trip to the big City for a Lung Scan at the hospital and a follow-up appointment with the CF doctor. Then plans for museums, shopping, eating out... A mini-vacation so to speak. </div>
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Lung scan took about 30 minutes. Max inhaled/nebbed a radioactive isotope and then pictures were taken of his lungs. Primarily a disease of the small airways, this test gets a better view of what may be going on before symptoms occur. Headed to the clinic and Max got really quiet, kinda teary... Similar to an incident a few weeks ago when a "well meaning" relative spoke to him ad nauseum about his CF. Not sure if it was memories of his 3 week stay exactly 3 years ago due to an obstruction and subsequent surgery or just the realization that he's different. Won't talk about it.</div>
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Anyway, got to the clinic, got him distracted enough to cheer him up. Making jokes about the monkeys in the tree during the Pulmonary Function Test (PFT) seemed to work. Then the verdict... Films from the lung scan showing issues in the lower lobes with the larger airways. Confusing because CF is primarily a disease of the small airways. We do three, 30-minute vest treatments each day along with nebs to open the airways, thin mucus and antibiotics. Add to that -- the fact that he's on three different oral antibiotics and one nebulized and what does his culture grow out. Big old Steno. Maltophilia that's resistant to pretty much everything. What more can we do?</div>
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While the doctor said "it's not evil" -- he's symptoms free!!! for gosh sakes ---continue on as we've been doing, it's a punch in the gut. A reminder that this disease sucks. That our child is sick. And we so want to make it better and we can't. And we can't discuss our fears, worries, concerns, anger.... while he's around because he doesn't need to worry. He just needs to stay a kid and have fun and have a friggen normal life. I want to rage, I want to cry, I want to scream about the unfairness of it all. But what would that accomplish other than upsetting others in our family. Besides, it's pretty damn selfish to whine about one little lung scan when others have it so much worse -- hospitalizations, IV Antibiotics, lung transplant waiting lists...</div>
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So I've had my pity party. Filing away this for future reference and focus on making sure our son is having a fabulous summer with no worries! Oh, and after our appointments we hit an army surplus store, Legoland, Sonic and the Science Museum!</div>Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-44918589926949200502012-06-13T15:57:00.000-05:002012-06-13T15:57:48.844-05:00SummertimeSpittlefish turned 9 a couple weeks ago. Can't believe how quickly time passes. Sometimes I still can't believe I'm a parent. Mentioned to Spittlefish on a walk a few weeks ago that I'm still not so sure I've got this motherhood thing figured out and admitted to him that I'm pretty much just "winging" it. He told me I can just look it up on the computer. Glad someone has confidence in my abilities. 'Cuz seriously, I really don't have a clue as to what I'm doing.<br />
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Tomorrow we head to the City for a lung scan and then a CF clinic appointment. Got his bloodwork back from his pediatrician appointment last week -- looks like his vitamin levels, glucose, liver function, etc. is all normal. Culture reports weren't finalized yet. Despite the massive amounts of antibiotics he's on, always seems to be growing something.<br />
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Three years ago we spent 3 weeks in the City at the Children's Hospital because Spittlefish had surgery due to an obstruction. Looked back at some photos on facebook of him. What a baby face at age 6! Wow, he was so little. Amazed at what a tough cookie he is.<br />
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<a href="http://2.bp.blogspot.com/-fbJiHj80Q6g/T9j-KLZs5AI/AAAAAAAAAFo/3xFZeTMrJWs/s1600/052809Almost6Max.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="130" pca="true" src="http://2.bp.blogspot.com/-fbJiHj80Q6g/T9j-KLZs5AI/AAAAAAAAAFo/3xFZeTMrJWs/s320/052809Almost6Max.jpg" width="320" /></a></div>
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9 years old!</div>
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After our appointments tomorrow, we're headed to Legoland at the Mall and to the Science Museum. Just a short jaunt and then we'll be heading to the lake for the weekend to visit the grandparents.</div>Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-55759297924212283292012-05-16T15:19:00.001-05:002012-05-16T15:19:37.997-05:009th Annual Fargo Great Strides Walk for Cystic FibrosisTwo weeks ago we had our annual Cystic Fibrosis Walk! The weather for once was awesome. Had a group of over 250 individuals. Not sure how much Team Max raised; however, the walk itself raised over $90,000. More than $15,000 than last year. <br />
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In honor of Cinco de Mayo -- the hotel where we hold our Brewer's Ball catered our walk and provided "Tacos in a Bag". Our fearless leader from the CFF dressed "appropriately" for the occasion.<br />
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Max and his Auntie at the Walk</div>
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Me, Max and the tired puppies after the walk.</div>
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Next stop -- the 2nd Annual Brewer's Ball on October 5th!</div>
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Fargobrewersball.com</div>Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-19137115590592218512012-03-16T16:49:00.000-05:002012-03-16T16:49:41.354-05:00Sinus Disease and Cystic FibrosisFrom day one, our son has always had a stuffy nose. Due to his CF causing extra thick, sticky mucus, I never so his nose run until he was 2 1/2 years old and was started on a nebulized medication called Pulmozyme, which is used to thin the mucus in his lungs. <br />
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We'd been warned about the potential for polyps, sinus disease, but other than a stuffy sounding nose from time to time, there didn't appear to be any issues. Then this past year, he became more of a mouth breather. His pediatrician commented on nasal inflammation and stuffiness. Asked if he snored. Up until a few months ago, he hadn't snored. Suddenly he snored, had episodes where he stopped breathing for a few seconds, was a very restless sleeper. He began to have issues with reading out loud in school. He'd have to stop and gasp for breath midsentence.<br />
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At his last CF clinic appointment, his doctor had him breathe through his nose and there was no airflow coming from his left nostril. So he suggested that we send him to an ENT when we went came back to the City for his CF appointment. <br />
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Being that his sinus issues became worse and thinking it was adenoids or polyps that may require surgery, we got a referral to an ENT last month. Two specialists proceeded to stick a long thin camera up his sinus passage. I swear the darned thing went up into his brain. Bleah! The ENTs were baffled -- no polyps, no adenoids. Lots of inflammation near the FRONT of his nostril and what appeared to be cobblestoning along his septum. So a CT scan was ordered and they prescribed a nasal steroid -- Nasonex.<br />
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Within minutes of using the nasal spray, he was able to breathe thru his nose for the first time in months. He slept peacefully with no snoring. The results of the CT scan weren't surprising. Sinus Disease of the Maxillary, Bilateral and Right Ethmoid Sinuses; however, being that the nasal spray is apparently doing to trick, we're just going to monitor rather that have him undergo any unnecessary surgery at this pointRatatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-72238736219372344922012-03-06T10:27:00.002-06:002012-03-06T10:30:02.755-06:002012 Great Strides Walk for Cystic Fibrosis<a href="http://www.onetruemedia.com/shared?p=1069f73a683502727cc9be6&skin_id=701&utm_source=otm&utm_medium=text_url" target="_blank">2012 Great Strides Video</a><br />
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Just a little video we put together for the May 5th Cystic Fibrosis Walk in Fargo.<br />
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Also, Save the Date! October 5th is our 2nd Annual Brewer's Ball at the Hilton Garden Inn in Fargo! Serving up a Cure One Pint at a Time!Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-13436415553224266142012-02-23T09:15:00.000-06:002012-02-23T09:15:02.480-06:00Great Strides Walk for Cystic Fibrosis<a href="http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7669&idUser=114196" target="_blank">Great Strides</a><br />
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A cause very near and dear to me is the Cystic Fibrosis Foundation (CFF). Nine years ago, when I was pregnant with Spittlefish, we had no idea that LG and I were carriers of a gene that causes Cystic Fibrosis, an inherited chronic disease that affects the lungs and digestive system of over 30,000 individuals in the United States.<br />
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<span class="Normal">People with CF can have a variety of symptoms, including:</span><br />
<ul><li><span class="Normal">very salty-tasting skin;</span></li>
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<li><span class="Normal">frequent lung infections;</span></li>
<li><span class="Normal">wheezing or shortness of breath;</span></li>
<li><span class="Normal">poor growth/weight gain in spite of a good appetite; and</span></li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><span class="Normal">frequent greasy, bulky stools or difficulty in bowel movements.</span></li>
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-5wTIX-rkSBw/T0ZXOYKTvqI/AAAAAAAAAE4/amr5uyYQo6c/s1600/gs.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" lda="true" src="http://2.bp.blogspot.com/-5wTIX-rkSBw/T0ZXOYKTvqI/AAAAAAAAAE4/amr5uyYQo6c/s320/gs.JPG" width="320" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Me and Spittlefish at our first CF Walk when DS was just 11 months Old.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div align="justify" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Please consider participating in a CFF Event in your area.</div>Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-5969181997142419582011-11-04T16:17:00.000-05:002011-11-04T16:17:05.629-05:00Serving up a cure one pint at a timeLast month we had our First Annual Brewer's Ball for Cystic Fibrosis! <br />
Over 240 guests! Was an awesome event which raised over $45,000 for the Cystic Fibrosis Foundation. We had over 18 Beers to choose from, an endless supply of pub food, great music! Can hardly wait 'til next year's event! <br />
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The photo below includes me, the official graphic artist for the Brewer's Ball and our longtime friend and my husband LG --- otherwise known as the loud german. Prior to the Brewer's Ball as I'm getting ready, LG calls me from a local bar and I'm freaking out because we're supposed to introduce the Bid for a Cure video. My fear was he'd be roaring drunk and announce "I Love You Man" to the audience. He wasn't; however, he did announce to the audience my fears, followed by "I Love You Guys". Le Sigh!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-OBvqV1gbDVc/TrRVpHz0IRI/AAAAAAAAADg/mHxvgPobvS8/s1600/brewer11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="191" ida="true" src="http://1.bp.blogspot.com/-OBvqV1gbDVc/TrRVpHz0IRI/AAAAAAAAADg/mHxvgPobvS8/s320/brewer11.jpg" width="320" /></a></div>Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-84606774260606044672011-05-11T10:44:00.000-05:002011-05-11T10:44:55.638-05:00Seance?The other night we were having dinner at the outlaws, as there were some out of town guests visiting--- my husband's aunt, her granddaughter and great-granddaughters, who happen to be quite religious. When it came time to eat, my MIL asked if the aunt would say table grace and then everyone reached out to hold hands. Apparently this isn't something the Spittlefish has ever witnessed or experienced before because in the middle of the prayer he asks....<br />
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"Are we going to be talking to 'ghost-es'?" Zoinks! Almost as good as the time another cousin who was supposedly being raised as a good Catholic asked my FIL, "Uncle Bob, could you walk downstairs with me? The picture of the giant Indian scares me!" Er, that would be a picture of Christ. :)Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-70051306562778872922011-03-11T22:19:00.000-06:002011-03-11T22:19:40.227-06:00Yea, it's FridayTGIF and about the time we head home from work...a blizzard hits. Oh joy. At least we can stay home and watch a bunch of ugly American whiners on House Hunters International. Even Spittlefish thought the whining was a bit much tonight. Not MY whining, but the single gal from NYC.<br />
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Glad the week is over. LG had a craptastic week of personnel issues, people annoyed with his boss and taking it out on him. He was so stressed he didn't even go to the "drunken place" as Spittlefish calls it, to unwind after work. I was surrounded by sick people all week who thought they were to important to stay home and decided to spread their germs and happiness. Even some little girl at Spittlefish's gymnastics group hurled. Yea! My boss apparently got sick suddenly Wednesday morning and hit the road. Glad he did; however, we had several reports to get out for a meeting Monday night and I wasn't privy to a bunch of the technical data and my other supervisor decided to ditch work the next day. However, I was figuring things out and was bound and determined to show everyone how great I was. Making great progress and then my supervisor emails me and asks me to send him the reports. Oh well, I done good, he didn't have to modify much of anything and I pretty much made it known what a good little worker bee I was. Oh and don't get me started about the coven of office witches up front who bring back such fond memories of junior high. I just don't understand how some people can be so miserable and unhappy 24-7. Wow!<br />
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Was planning to spray Lysol all over the big boss' office; however, he felt better and was back at work this morning. Figured he wouldn't appreciate fumigating him. Was a slow day at work and was going to volunteer to fill sandbags at the County shop in preparation of the spring melt (flood), but they were turning away workers. I was planning to hang out with the convicts and street crew. Oh well.<br />
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Spittlefish was pretty much possessed this week. Tuesday he got the dreaded "blue" on his school behavior calendar, but couldn't remember why he got in trouble. Emailed his teacher for an explanation so we could punish his punk ass. Next day ANOTHER blue with explanation "not following directions". Had a come to Jesus meeting, explained no video games during his vest -- he'd have to watch cartoons if he got another blue. Yesterday I ask him what color he got -- mumble mumble... What was that? He replies "I did na nah na nah nahhhh". Lovely talking back to the teacher. That's my boy. Made him write a letter to his teacher apologizing. Today no school, so he was warned to be good in daycare or else. He was okay, but refused to eat lunch except milk because the noodles weren't to his liking, the corn was mush and he didn't have time to eat his cake or bread or pears. Wow!<br />
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So we're waiting out the blizzard and here's hoping tomorrow -- the next week will be a vast improvement and that none of us catch whatever all the sickies had at work, etc.Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-19356254175088578392011-03-05T16:47:00.000-06:002011-03-05T16:47:17.637-06:00Crazy ChildThe other night Spittlefish runs around the house with a foam sword with a maniacal laugh and crazy eyes. When asked about his behavior, he says "I'm a psychopath". <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-Ql-SoZczjOI/TXK9SowykSI/AAAAAAAAAA4/txLfDf5VjSQ/s1600/creepylook.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" l6="true" src="https://lh3.googleusercontent.com/-Ql-SoZczjOI/TXK9SowykSI/AAAAAAAAAA4/txLfDf5VjSQ/s320/creepylook.jpg" width="320" /></a></div>Concerned about the crap we've dealt with at his school this past year, I ask, "are you a psychopath at school or daycare?". Nope, just at home was his reply. Phew! <br />
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I do wish I could find a copy of Scared Shrekless on DVD or YouTube. He does to a wonderful impersonation of Pinocchio in the "Shreksxorcist scene. "Voices...in my head... telling me what to dooooo". :)Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-77792221786231190682011-03-01T21:23:00.001-06:002011-03-02T09:21:47.981-06:00Homework SucksUgh, last night after vesting, dinner and a bath there was still the dreaded spelling homework. Each night some horribly, time consuming task involving this week's spelling words.<br /><br />Monday night it was creating a crossword or word search puzzle involving all 16 spelling words, then solving said puzzle. Other suggestions involve using pipe cleaners to form letters and then using said letters to recreate the spelling words or spelling out each word three times using different colors of the rainbow.<br /><br />Last night involved creating flashcards. Maybe they should start teaching keyboarding in kindergarten because Spittlefish doing the hunt and peck method of typing was driving us crazy and was oh so time consuming. I'm thinking about getting him a t-shirt that says "Mommy drinks because of my spelling homework".Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0tag:blogger.com,1999:blog-133398150790705301.post-49378049453628189772011-02-28T14:24:00.000-06:002011-02-28T16:48:33.701-06:00The IronyI have a child with Cystic Fibrosis, which according to the Cystic Fibrosis Foundation is an inherited chronic genetic disease that affects lungs and digestive systems. A defective gene and its protein product cause the body to produce unusually thick, stick mucus that clogs the lungs and obstructs the pancrease and stops natural enzymes from helping the body break down and absorb food.<br /><br />I can handle just about anything -- vomit, blood, poop, urine... But mucus -- the very thought of it gets my gag reflex going as if I have a hairball. My seven year old thinks it's hilarious to hack up a huge lougie or blow his nose and try to show it to me. When he was younger he'd come home from preschool with pictures he drew just for me. "Look, Mommy! I drew you a lougie on toast". Sigh...<br /><br />Oh, the irony of it all. My theory is that it must be some huge karmic message from the universe pretty much telling me to "Suck it up, Princess!"Ratatoskhttp://www.blogger.com/profile/04738148762217681767noreply@blogger.com0