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New weight gainer shake

September 22nd, 2011 | No Comments | Posted in VALENTINO'S CF JOURNEY

I am constantly trying new things with Valentino to try to help with his weight gain and growth.

He has been loving the following chocolate milk concoction:

6oz organic whole milk

2 Tbsp. organic chocolate syrup

1 Tbsp. PWO (a post workout protein powder blend)

1 Tbsp. lactose

1 Tbsp. powdered milk

 

Valentino will typically drink 12 oz. over the course of breakfast.

We go back to the specialist to check weight and height in December. So, I have 2 months of project “ValVal Gainer.”

Valentino refuses to take his enzymes

September 14th, 2011 | No Comments | Posted in VALENTINO'S CF JOURNEY

I would love to be able to say that at 2 years old, Valentino takes his enzymes with every meal that contains any fat and that he is a good sport about it. However, this picture definitely reveals otherwise.

It has been a task over the past couple months to find a pattern that works for him to agree to take enzymes. Initially, I hid the enzymes in his apple sauce, pudding or yogurt. But, soon he figured out that if he saw any of those foods before mealtime–it meant enzymes. And, he would clamp his jaw shut and refuse to eat. I decided I had to stop trying to hide the enzymes and instead let him see them on top of the food and begin to teach him that it is part of his daily life and is what helps him grow into a strong and healthy big boy.

It took several attempts over several mealtimes to finally settle into a good routine. First, I would put the enzymes on top of his apple sauce next to his plate of food and explain that he needs to take his enzymes to grow big and strong. When he would refuse, I would excuse him from the table and when he would come and ask to eat, I would remind him of his enzymes. He would refuse and this went on and on and on until he got hungry enough to willingly take his enzymes. Now, he seems to be in the habit of it and will even ask for his enzymes in apple sauce before a meal. Phew. I can only hope this lasts……..

Valentino reacting to hearing that he has to take enzymes

Routine check up 9/13/11: wt. 10th percentile, healthy lung function

September 14th, 2011 | No Comments | Posted in VALENTINO'S CF JOURNEY

Yesterday was our routine check-in/check-up at Children’s Hospital.

I was able to get an appointment at the Fairfax location which is much easier to navigate than the DC site.

The Fairfax location is incredible—the staff redecorated the waiting room to include cartoon characters on the walls, a coloring station, low tables with a variety of games, a large tv with cartoon movies playing and big cushion-y blocks for the kids to tumble around on.

Valentino’s lung function is still 98% and his lungs sounded pretty clear. His voice is a bit hoarse and he has been coughing in the morning and at night at bedtime over the past 3 days. Dr. Sami says it sounds like an upper respiratory issue–nothing has settled into his lungs. Since Romeo started back to school last week, it might be simply a case of bringing home a bug from school.

As for his growth and weight gain, Dr. Sami still would like to see Valentino gaining more weight. His height increased since our last visit enough to put Valentino in the 10th percentile for weight. Yippee.

However, his weight is not increasing as quickly as it should. Valentino’s diet is already very high calorie and “high test” so I am struggling to figure out how to get more calories in. I’m currently adding chocolate syrup and powdered milk to his milk every day and encouraging him to eat ice cream, sausages, bacon and foods cooked with cream and butter.

Because Valentino is having normal, formed bowel movements (not greasy at all) it doesn’t appear that his lack of weight gain is due to malabsorption. I might have to give in on my desire for Valentino to have healthy, organic nutrient rich foods and start incorporating fast food into his diet…….

As of today, with the slight upper respiratory problem, Valentino is doing 20 minutes of vest therapy 2x daily as well as nebulizer with albuterol 3x daily.