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| The visitors' center |
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| At the top of our hike |
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| Our little hiker |
Families are what make life rich. Love is what binds us together. Joy is being surrounded by both. ~Unknown
Sunday, March 18, 2012
A Saturday Hike
We have been having some beautiful weather lately. Last Saturday we decided to get out of the house and spend some time together. As a family we went to the Bear Creek Nature Center where we explored the visitor's center a bit and then took about a 1-mile hike. We topped off the morning with the lunch buffet at Billy's Old World Pizza. Reid was so excited to find a place that serves Chicago-style Italian Beefs in Colorado Springs that he ended up leaving the waitress a 40% tip! In all the years we've been together, I've never seen him that happy at a restaurant--ever!
Cat-sitting
About a week and a half ago, we got the opportunity to cat-sit for some friends of ours. Kai LOVES cats! He is constantly trying to work out a deal where Reid gets the dog that he wants and then in exchange Kai can have a kitty. I thought it would be a good chance for Kai to see what having a pet is like and to see how it would go. I found that while we enjoyed having a cat, I am still not a fan of pet mess. And that cat was only here for about 18 hours! The other thing that surprised me was how excited Finn was. He has historically been very scared of animals. I don't what has changed in the last few months, but he has thoroughly enjoyed the animals that we have encountered recently. And he loved having a cat more than Kai. In fact, when my friend came to pick up her cat the next morning Finn stood there and cried as the cat was taken away. He was distraught over the whole thing. Maybe, just maybe, there will one day be a pet in this house. That's a really big "maybe"!
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| Kai and Peanut |
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| I love this picture because of what's on the left hand side! Finn was in mid-jump while exclaiming, "He's cute!" |
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| Teasing Peanut with the jump rope |
Friday, March 9, 2012
Finn's Story
Please take some time to watch this video. If you're local, we would love to have you join our Great Strides team this year! We will be walking at America the Beautiful Park on May 19th at 8am. If you are unable to attend and would still like to show your support, you can donate to our team at www.cff.org/great_strides and our team name is Finn's Friends. We also hope to be selling team t-shirts this year as another way to raise funds for the CFF. More information will be forthcoming. Thanks so much for all of your support!
Health Update
I have been wanting to write a post about our last visit to clinic. It went well but there were a few changes made to his medication that I thought was important to document. But, for today, all of that will have to wait. Today I am stressed with something else that I need to share somewhere. So--here it is.
Over the last 3-4 weeks, Finn has had several issues with vomiting, including a tummy bug this week. He has spent a good part of the week tired, cranky, not hungry, and with a fever. It's just be a tougher week for him. Normally, that stresses me out. But this week I consciously chose not to let it do so. I was going to let this illness run it's course, treat it as needed, and not work myself up over it. Besides, in the past it never really seemed to make a difference how stressed I got--he always stayed sick. :)
Yesterday I received a letter from our doctor to help us appeal several of our insurance companies policies. It was a fantastic letter! The last few paragraphs are very important:
The digestive complications of CF include mucus blockage of the pancreatic duct and destruction of the pancreatic tissue resulting in nutrient malabsorption and deficiencies. Because of increased energy expenditure with worsened lung function and malabsorption, energy and protein requirements are much greater for Finn than a healthy age- and size-matched male.
Finn is at risk for malnutrition given his weight for age and weight for length are at the 16th percentile. Our goal is for patients to be at the 50th percentile. Finn's growth parameters meet the CF Foundation's criteria for more intense nutritional intervention.
Our medical/nutritional recommendation is for Finn to have 3 cans of Pediasure 1.5 each day orally. We have several reasons for proposing this intervention:
1. To keep Finn out of the hospital. Malnourished CF patients are more likely to need to be admitted to the hospital for pulmonary exacerbations.
2. Epidemiological data in CF patients indicate that lower weight and height are risk factors for a more rapid decline in pulmonary function in patients with mild lung disease.
3. Epidemiological data also indicate that low weight is a risk factor for the acquistion of Pseudomonas aeruginosa colonization and for the persistence of this infection, which correlates with a shortened life expectancy.
4. Improved nutrition will improve quality of life based on several previously reported studies.
Like I said, it's a fantastic letter! But here's my stress. This morning Finn woke up feeling significantly better and finally hungry. So, after eating a bit I decided to take in the damage from the last 4 days, and I placed him on the scale. The poor kid has lost slightly over a pound in the last 4 days!! He is now just under 25 pounds instead of being over 26 like he was just a week ago. It's the first time he has ever lost weight, and for it be so much.....
So, today I'm sick with worry and stressed. But, I do know that we can turn this around. Today we go back to our routine and we will get his weight back up. I cannot take him into clinic next month with a weight loss. Our doctor has been very good at evaluating him as an individual and has actually never even brought up the subject of a feeding tube, but I do know that most CF children Finn's size are on just that. So, for that I am grateful. We have a fantastic doctor who is patient and understanding. As long as I can keep him gaining weight, the team is happy. I did, however, learn that they use age 4 as a cut-off. The nutritionist told me that at age 4 he needs to be at least in the 10th percentile for weight for age or they generally pursue more drastic interventions. I'm glad I have a goal and we'll keep plugging away.
If you have some time, send some thoughts Finn's way of a large appetite and a preference for vanilla again. (Pediasure 1.5 only comes in vanilla and the kid prefers chocolate. I think that might be yet something else contributing to this weight loss) We sure would appreciate it!
**Update--I put a pair of jeans on him and gave him a decent drink of chocolate milk with whipping cream and then weighed him again. He was back to 26 pounds. I'm a LOT less stressed! I can't remember if I had weighed him in jammies or jeans last time, but I know that at clinic he was weighed in jeans and was 25.5. So, either way, he's still up a bit from our last visit which is a huge relief!
Over the last 3-4 weeks, Finn has had several issues with vomiting, including a tummy bug this week. He has spent a good part of the week tired, cranky, not hungry, and with a fever. It's just be a tougher week for him. Normally, that stresses me out. But this week I consciously chose not to let it do so. I was going to let this illness run it's course, treat it as needed, and not work myself up over it. Besides, in the past it never really seemed to make a difference how stressed I got--he always stayed sick. :)
Yesterday I received a letter from our doctor to help us appeal several of our insurance companies policies. It was a fantastic letter! The last few paragraphs are very important:
The digestive complications of CF include mucus blockage of the pancreatic duct and destruction of the pancreatic tissue resulting in nutrient malabsorption and deficiencies. Because of increased energy expenditure with worsened lung function and malabsorption, energy and protein requirements are much greater for Finn than a healthy age- and size-matched male.
Finn is at risk for malnutrition given his weight for age and weight for length are at the 16th percentile. Our goal is for patients to be at the 50th percentile. Finn's growth parameters meet the CF Foundation's criteria for more intense nutritional intervention.
Our medical/nutritional recommendation is for Finn to have 3 cans of Pediasure 1.5 each day orally. We have several reasons for proposing this intervention:
1. To keep Finn out of the hospital. Malnourished CF patients are more likely to need to be admitted to the hospital for pulmonary exacerbations.
2. Epidemiological data in CF patients indicate that lower weight and height are risk factors for a more rapid decline in pulmonary function in patients with mild lung disease.
3. Epidemiological data also indicate that low weight is a risk factor for the acquistion of Pseudomonas aeruginosa colonization and for the persistence of this infection, which correlates with a shortened life expectancy.
4. Improved nutrition will improve quality of life based on several previously reported studies.
Like I said, it's a fantastic letter! But here's my stress. This morning Finn woke up feeling significantly better and finally hungry. So, after eating a bit I decided to take in the damage from the last 4 days, and I placed him on the scale. The poor kid has lost slightly over a pound in the last 4 days!! He is now just under 25 pounds instead of being over 26 like he was just a week ago. It's the first time he has ever lost weight, and for it be so much.....
So, today I'm sick with worry and stressed. But, I do know that we can turn this around. Today we go back to our routine and we will get his weight back up. I cannot take him into clinic next month with a weight loss. Our doctor has been very good at evaluating him as an individual and has actually never even brought up the subject of a feeding tube, but I do know that most CF children Finn's size are on just that. So, for that I am grateful. We have a fantastic doctor who is patient and understanding. As long as I can keep him gaining weight, the team is happy. I did, however, learn that they use age 4 as a cut-off. The nutritionist told me that at age 4 he needs to be at least in the 10th percentile for weight for age or they generally pursue more drastic interventions. I'm glad I have a goal and we'll keep plugging away.
If you have some time, send some thoughts Finn's way of a large appetite and a preference for vanilla again. (Pediasure 1.5 only comes in vanilla and the kid prefers chocolate. I think that might be yet something else contributing to this weight loss) We sure would appreciate it!
**Update--I put a pair of jeans on him and gave him a decent drink of chocolate milk with whipping cream and then weighed him again. He was back to 26 pounds. I'm a LOT less stressed! I can't remember if I had weighed him in jammies or jeans last time, but I know that at clinic he was weighed in jeans and was 25.5. So, either way, he's still up a bit from our last visit which is a huge relief!
Thursday, March 8, 2012
Compromise
There are days that Finn just isn't as excited about doing his treatments, taking his meds, etc. Especially when he's not feeling so well. On those days, you just have to compromise!
Western Museum of Mining and Industry
For President's Day, Kai had 2 days off of school (Monday and Tuesday). And then due to snow, school was closed on Thursday. So, in a 10-day period we had 1 day of school! And it wasn't even Spring Break! To combat the monotony of the house a bit, we met up with our friends to go "adventuring" again. We decided to take a trip 10 minutes down the road to the Western Museum of Mining and Industry. (Our 2010 family photos were taken on the grounds of this museum. Look along our sidebar and at our header--that's the museum!) I had been wanting to check it out for a while, but was a bit concerned that it wouldn't hold the kids' attention. After reading a blog review by a local mom, we decided to brave it. And I was pleasantly surprised! We took a guided tour that they really geared towards the kids. The kids got to watch a video, touch different rocks, go panning for gold, act out the steps of mining and even walk through a little simulated mine. At the very end there was a treasure hunt that they completed to earn cookies to take out to feed the donkey. It was a good use of a couple of hours that was desperately needed during that really long stretch at home.
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| Listening to the instructions on how to pan for gold |
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| Learning about the mines |
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| The reason I don't have very many pictures. Finn has his own ideas! They were turning on all of the machines for the kids though so I didn't want him roaming around. |
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| Ethan and my boys. We sure are going to miss them when they move! |
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| Feeding Nugget the donkey |
Monday, March 5, 2012
Getting Current
Back at the beginning of January, Reid started talking about changing some things around in the house. We spent 3 weekends in January working on some of those plans. So far we have managed to switch the TV room with the toy room. The kids actually have even more space to play now (by just a little bit) and it's nice for me to have a door where I can shut it all in! With all of the snow that we have had, we did go a bit stir crazy, but we managed to have some fun while working on our projects.
For Valentine's Day we had planned a fondue dinner. We ended up postponing the dinner until the day after Valentine's day, which worked out better. We had a cheese fondue for dinner and chocolate fondue for dessert. While the boys did not enjoy the cheese fondue, Kai loves the idea of chocolate fondue! Go figure.
Finally, the boys made me laugh this weekend with their imaginative play. Kai wanted to be a cowboy, but we don't have any dress-up clothes at all. So, we found a hat and a rope. Here are the results. They sure are some cute looking "cowboys" don't you think. Finn loves the rope and keeps asking for me to put it back on him!
Stay tuned for an adventure update!
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| Finn LOVES Elmo! He put these on and started dancing to the music. |
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| Playing under the tramp |
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| The boys wanted to help their Daddy. |
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| One view of our new toy room |
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| The other side |
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| The view from the bottom of our stairs |
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| The fireplace |
For Valentine's Day we had planned a fondue dinner. We ended up postponing the dinner until the day after Valentine's day, which worked out better. We had a cheese fondue for dinner and chocolate fondue for dessert. While the boys did not enjoy the cheese fondue, Kai loves the idea of chocolate fondue! Go figure.
Finally, the boys made me laugh this weekend with their imaginative play. Kai wanted to be a cowboy, but we don't have any dress-up clothes at all. So, we found a hat and a rope. Here are the results. They sure are some cute looking "cowboys" don't you think. Finn loves the rope and keeps asking for me to put it back on him!
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| Do they look like cowboys to you? |
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