holmfamily1992
New member
Hey everyone,
I wish I could be writing this with some positive response but Its just not happening today.
Our clinic finally had our other children tested. We could only take 4 on our 3 hour trip to the testing clinic. We drove down the night before and stayed at the hospitality house at the hospital. The very next morning sweat test began. Later that afternoon I met with our Doctor and he went over the test results. 2 out of the 4 are borderline and the other 2 are testing positive. Sweat test level at a 70. We are driving down again next week for the other 3 to have their first sweat test and the second on the four I just took down. They are starting treatment with the 2 as soon as next week.
I knew that there was a 3 out of 4 chance with this disease but come on. How did this happen?? As far as my mental status, so far so good. There are to many things to do to stop and think right now. Full panel genetic testing will be performed next week also.
Dylan's appointment went really well. Our doctors only concern is his weight. He is just below the 14th percentile and he discussed with us the option of a feeding tube. I begged him to give Dylan and us the chance to see if we can put the weight on him. He needs to gain at least 9 pounds in 4 months or the option of the feeding tube wont be and option. Our clinic gave me this awesome high calorie cook book and from there I have been able to come up with something he likes. THis is what I make him an it has about 800 calories in just one shake.
1. 3 tablespoons Carnation instant breakfast (powdered)
2. 3 Tablespoons Chocolate Ovalteen
3. about 4 tablespoons Chocolate syrup
4. 1 banana
5 2 cups whole milk.
I just blend it all up.....Dylan says it taste like a banana split. He loves it. I make this for him 2 to 3 times a day. Whenever he wants it pretty much.
This kid loves to play sports way to much to have a feeding tube put in. So if we can prevent it, we will.
Today we are working on getting all 10 of us down to our clinic and finding a place that can house all of us. Our clinic is working with us as I type. I know that some of our gas can be reimburresed but that is after the fact. Where ever we stay its going to take 2 rooms.
My heart is heavy
My spirits are shot
and all we have right now is each other. We will do what we have to and thats the bottom line. In our schedule there is no time to loose it. So some way, some how we will find what we need.
Tina,
Mother of 8
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
I wish I could be writing this with some positive response but Its just not happening today.
Our clinic finally had our other children tested. We could only take 4 on our 3 hour trip to the testing clinic. We drove down the night before and stayed at the hospitality house at the hospital. The very next morning sweat test began. Later that afternoon I met with our Doctor and he went over the test results. 2 out of the 4 are borderline and the other 2 are testing positive. Sweat test level at a 70. We are driving down again next week for the other 3 to have their first sweat test and the second on the four I just took down. They are starting treatment with the 2 as soon as next week.
I knew that there was a 3 out of 4 chance with this disease but come on. How did this happen?? As far as my mental status, so far so good. There are to many things to do to stop and think right now. Full panel genetic testing will be performed next week also.
Dylan's appointment went really well. Our doctors only concern is his weight. He is just below the 14th percentile and he discussed with us the option of a feeding tube. I begged him to give Dylan and us the chance to see if we can put the weight on him. He needs to gain at least 9 pounds in 4 months or the option of the feeding tube wont be and option. Our clinic gave me this awesome high calorie cook book and from there I have been able to come up with something he likes. THis is what I make him an it has about 800 calories in just one shake.
1. 3 tablespoons Carnation instant breakfast (powdered)
2. 3 Tablespoons Chocolate Ovalteen
3. about 4 tablespoons Chocolate syrup
4. 1 banana
5 2 cups whole milk.
I just blend it all up.....Dylan says it taste like a banana split. He loves it. I make this for him 2 to 3 times a day. Whenever he wants it pretty much.
This kid loves to play sports way to much to have a feeding tube put in. So if we can prevent it, we will.
Today we are working on getting all 10 of us down to our clinic and finding a place that can house all of us. Our clinic is working with us as I type. I know that some of our gas can be reimburresed but that is after the fact. Where ever we stay its going to take 2 rooms.
My heart is heavy
My spirits are shot
and all we have right now is each other. We will do what we have to and thats the bottom line. In our schedule there is no time to loose it. So some way, some how we will find what we need.
Tina,
Mother of 8
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">