holmfamily1992
New member
Hey everyone,
I just wanted to post an update. We took our 3 to their first clinic visit yesterday. We were there for 4 hours. Whew! what a long day. We left at 9 and got home at 9.
Anyway, Ryan our 5 year old looks really good. When we took him into the clinic last month he was below the 15 percentile for his weight. We started giving him the shakes that I make Dylan and ITS WORKING!! He is now just below the 50 percentile. So our Doc told us to keep doing what we are doing and he may not need a feeding tube. Hopefully he wont decline real soon like Dylan did. His lung function is great so they started him on only Pulmozyme for right now. They may introduce the Hypertonic Saline after he turns 6.
Mariah also looks real good. He height and weight ratio is at about the 88 percentile. Her lung function was very good also. She has increased mucas during sports and any type of excersize so they also are doing Albuterol and Pulmozyme to keep her airways clear. She was very overwhelmed with all the new info and is still asking me questions.
Steph found out that she has an obstruction in her small airways. This is why she has such a hard time with conditioning during sports. They also started her on just Albuterol and Pulumozyme. This should increase her oxygen so she can make it through practice. Otherwise her lung fuction is great.
We are very fortunate with these three right now. I asked him how the CF can very so much from each kid because I still dont undertand it. He told me it was just like any other gene that we pass down from our children. How hair, eye color, shape, size can all very and that goes for CF also. But at least with a mild case in both girls things look a little better for them in the long run. Maybe they wont have to worry about major problems till later on as long as they do thier meds now.
Dylan definately lost more weight. It doesnt matter how many calories we put into this child. He just burns it off. So, they are going to do the G-tube. We will meet with that doc in the middle of September. He is very worried but he doesnt like feeling like crap all the time. He got his vest and loves it. It seems to work much better the manual CPT's and the flutter. At least with the vest he coughs. He doesnt do that with the others. It also cut is treatment time down from and hour and a half to a half an hour. He is soooooo happy about that and so are we. No more extremely early mornings.
All the kids are getting thier own vest. With their ages and the amount of CF rugrats we have, it just wasnt possible to do manual cpts. I cant wait for them to get here.
Besides spending way to much on gas and food for the trip it went really well. I can only hope and pray that things keep going well.
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/Picture067-1.jpg">
I just wanted to post an update. We took our 3 to their first clinic visit yesterday. We were there for 4 hours. Whew! what a long day. We left at 9 and got home at 9.
Anyway, Ryan our 5 year old looks really good. When we took him into the clinic last month he was below the 15 percentile for his weight. We started giving him the shakes that I make Dylan and ITS WORKING!! He is now just below the 50 percentile. So our Doc told us to keep doing what we are doing and he may not need a feeding tube. Hopefully he wont decline real soon like Dylan did. His lung function is great so they started him on only Pulmozyme for right now. They may introduce the Hypertonic Saline after he turns 6.
Mariah also looks real good. He height and weight ratio is at about the 88 percentile. Her lung function was very good also. She has increased mucas during sports and any type of excersize so they also are doing Albuterol and Pulmozyme to keep her airways clear. She was very overwhelmed with all the new info and is still asking me questions.
Steph found out that she has an obstruction in her small airways. This is why she has such a hard time with conditioning during sports. They also started her on just Albuterol and Pulumozyme. This should increase her oxygen so she can make it through practice. Otherwise her lung fuction is great.
We are very fortunate with these three right now. I asked him how the CF can very so much from each kid because I still dont undertand it. He told me it was just like any other gene that we pass down from our children. How hair, eye color, shape, size can all very and that goes for CF also. But at least with a mild case in both girls things look a little better for them in the long run. Maybe they wont have to worry about major problems till later on as long as they do thier meds now.
Dylan definately lost more weight. It doesnt matter how many calories we put into this child. He just burns it off. So, they are going to do the G-tube. We will meet with that doc in the middle of September. He is very worried but he doesnt like feeling like crap all the time. He got his vest and loves it. It seems to work much better the manual CPT's and the flutter. At least with the vest he coughs. He doesnt do that with the others. It also cut is treatment time down from and hour and a half to a half an hour. He is soooooo happy about that and so are we. No more extremely early mornings.
All the kids are getting thier own vest. With their ages and the amount of CF rugrats we have, it just wasnt possible to do manual cpts. I cant wait for them to get here.
Besides spending way to much on gas and food for the trip it went really well. I can only hope and pray that things keep going well.
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/Picture067-1.jpg">