We recieved good news this week......Trevor's sputum results were normal flora! NO BACTERIA! That is fantastic news and I can't think of anything to be more thankful for this Thanksgiving. SO MANY BLESSINGS for our family. SO VERY THANKFUL!
Happy Thanksgiving to everyone!!! :)
Gail ♥♥♥
Wednesday, November 24, 2010
Wednesday, November 17, 2010
UPDATE ON TREVOR
We went for Trevor's 3 month check up on November 15th at the Cystic Fibrosis Clinic at Children's Mercy Hospital. He had only gained a couple of ounces in weight which is not a big concern since he gained 4 pounds in the previous 3 months. He had however, grown an inch in height!
He broke his all time record AGAIN on his PFT's (pulmonary function tests). He went from 186 to 190! Oxygen level at 99%. They did a new type of test to measure the air capacity in his lungs also. He was in a closed, see through chamber and they told him to breathe in and out regularly and then his air would be cut off for one breath in and out. I think it scared him just a bit, but he did fine and I think the results were good.
We talked about the vest and Trevor told Dr. Black that he was doing the vest 3 days a week. He agreed to up the usage of his vest to 5 days, with a little coaxing from Dr. Black.
We also talked about using the 7% hypersal solution. Trevor hated it and refused to use it because it was so harsh. The nurse practitioner suggested that we try the 3% hypersal instead. She also said there was a new concentrated version of albuterol that could be added directly to the hypersal in the nebulizer, to save time, so that two separate treatments were not necessary!
He ended the appointment with a flu shot, but it didn't phase him a bit.....didn't even flinch!! What a trooper~
He is still taking the azithromycin ( one pill, 3 days a week), Creon 24 ( around 15 capsules a day), CF source vitamins (one soft gel a day) and pericatin (two pills a day).
They said when he turns 10 that he has to have an abdominal ultrasound and a glucose tolerance test. He also has to start taking 2 of the CF source soft gels a day instead of the one he is taking now.
All in all it was a good appointment. Trevor was healthy! We are hoping for good sputum results as well. We should know the results on Friday.
He broke his all time record AGAIN on his PFT's (pulmonary function tests). He went from 186 to 190! Oxygen level at 99%. They did a new type of test to measure the air capacity in his lungs also. He was in a closed, see through chamber and they told him to breathe in and out regularly and then his air would be cut off for one breath in and out. I think it scared him just a bit, but he did fine and I think the results were good.
We talked about the vest and Trevor told Dr. Black that he was doing the vest 3 days a week. He agreed to up the usage of his vest to 5 days, with a little coaxing from Dr. Black.
We also talked about using the 7% hypersal solution. Trevor hated it and refused to use it because it was so harsh. The nurse practitioner suggested that we try the 3% hypersal instead. She also said there was a new concentrated version of albuterol that could be added directly to the hypersal in the nebulizer, to save time, so that two separate treatments were not necessary!
He ended the appointment with a flu shot, but it didn't phase him a bit.....didn't even flinch!! What a trooper~
He is still taking the azithromycin ( one pill, 3 days a week), Creon 24 ( around 15 capsules a day), CF source vitamins (one soft gel a day) and pericatin (two pills a day).
They said when he turns 10 that he has to have an abdominal ultrasound and a glucose tolerance test. He also has to start taking 2 of the CF source soft gels a day instead of the one he is taking now.
All in all it was a good appointment. Trevor was healthy! We are hoping for good sputum results as well. We should know the results on Friday.
Thursday, November 11, 2010
The GREAT STRIDES KC walk to cure Cystic Fibrosis
This years Great Strides walk to cure Cystic Fibrosis will be held on May 14th 2011 at Theis Park. For more information on this walk and how you can help Trevor and thousands of others with CF....please click on the following link.
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7235&idUser=163181
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7235&idUser=163181
Wednesday, November 10, 2010
Trevor's nebulizer and vest
After almost 9 years....we had to get a new nebulizer for Trevor. I am not complaining one bit. I am actually very thankful that we were able to keep the nebulizer that long. We didn't have to use it everyday...which was a blessing. Now he uses it with hyper sal and albuterol as needed.
Trevor's vest we have had for approximately 4 years. I love it! He is not so keen on it though. He says it takes too long, but he compromises and does it because I have told him that it can help keep his lungs healthy. Now I just try to find something to entertain him while he is doing it. He told me the other day that it is tough to have a disease. I said I know Trevor, but you are tougher!!!
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| Trevor's new nebulizer |
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| Trevor's vest |
Trevor's vest we have had for approximately 4 years. I love it! He is not so keen on it though. He says it takes too long, but he compromises and does it because I have told him that it can help keep his lungs healthy. Now I just try to find something to entertain him while he is doing it. He told me the other day that it is tough to have a disease. I said I know Trevor, but you are tougher!!!
Meet Joel a brave little boy with CF!!
http://www.onetruemedia.com/shared?p=ac0d00288b6c7b02986f84&skin_id=1704&utm_source=otm&utm_medium=text_url
Please help us make CF stand for CURE FOUND!
Please help us make CF stand for CURE FOUND!
Monday, November 8, 2010
Trevor and his vest
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| Trevor doing his vest while playing video games This is one of the few ways Trevor will do his vest without much of a fight. LOL At least it entertains him during the 30 minute treatment! |
Friday, November 5, 2010
One of my favorite pics of all my boys!!!
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| Trevor, Jason, Trey, and Tristan |
This picture was take the day Trey was born. August 11, 2003. I just love it. It is one of my favorite pics of all my boys!
Tuesday, November 2, 2010
Trevor's CF Clinic visit rescheduled....
I rescheduled Trevor's CF Clinic visit that was originally scheduled for November 1st. Now he is scheduled for his 3 month check up on November 15th. He is a little worried about his weight. I think it stresses him because he knows they will weigh him when we go for the check up. After 9 years of check ups.....he is acutely aware of everything they do and everything they expect. With that being said......just because they expect it, doesn't mean it is possible. He tells me that he is trying so hard to gain weight....I have to choke back the tears and keep a smile on my face. He is trying! He is trying so hard, but the grim reality is that CF is a battle. He has to keep on fighting against this stupid disease every single day. This disease that makes it impossible for him to absorb food like any other normal 9 year old boy. That keeps him from digesting his food properly which sometimes leads to extremely painful stomach aches. I just tell him that he is in control, and he has to keep on trying and fighting this everyday. What is crazy is that Trevor is one of the lucky ones with CF.....if anyone could be lucky with this devastating disease. He has only had Pseudomonas (bacterial infection) one time and has never tested positive for it again. He has only had to MSSA infections (also bacterial infections)......no MRSA! We have been so blessed with the health of his lungs....I guess we shouldn't even complain, but I want a cure. Currently, Trevor is taking Creon 20 (15 capsules per day for digestion) , Azithromycin ( 1 tablet 3 days a week as an anti inflammatory for his lungs), Periactin ( 2 tablets per day to increase appetite), Source CF soft gels ( 1 capsule per day, multivitamin), zantac as needed, albuterol and hypersal as needed and this list is just a drop in the bucket of what an average CF'r takes. At any rate....I am hoping for a great report when we go on the 15th for his check up!
Monday, November 1, 2010
THE AGONY OF DEFEAT.....
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| TITANS 2010 2ND PLACE |
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| TRISTAN AND I, BEFORE THE GAME |
IT WAS A BEAUTIFUL DAY FOR A CHAMPIONSHIP FOOTBALL GAME. FOR SOME REASON, IT JUST WASN'T OUR DAY TO WIN. THE TITANS SHOULD BE PROUD OF WHAT THEY ACCOMPLISHED THIS SEASON THOUGH! THEY FINISHED 2ND AND THEIR TEAM WON THE SPORTSMANSHIP AWARD FOR THE LEAGUE. THEY ALL WORKED HARD AND SHOULD BE CONGRATULATED FOR THEIR EFFORT!
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