Parent's Report
Hello Dr. Dunitz-Scheer!
Since we've been back from Graz for about 9 weeks now, I thought I'd update you on Ramona's progress. The tube's been out for over 2 months and we have not missed it one bit. Mona's consistently eaten every single day since she graduated from your program, and has been a bundle of energy! We are so incredibly grateful to you and your team of experts, it's like we have a whole new life now. It's incredible. We travel a lot and it is such a different experience without the tube, it's truly freeing to have a child who eats and drinks!
When we left your program Mona was 10.2 kg. After we got home she lost a little more, down to 10.0 kg, but gained some back and is now 10.2 kg. Been 10.2 for about a month. Very stable, and I'm expecting some weight gain soon since she's eating a lot more lately (my guess around 800 cals) She's eating more everyday and has energy. She has been going through some other things, increased seizures, just related to her regular problems, and sometimes it affects her appetite, which is normal. She is very short (80 cm) so her weight/height ratio is good.
A typical day for her is: Cheerios for breakfast. She drinks all the milk from the bowl then asks for more milk in the bowl, drinks that, then eats a few spoons of the cheerios. A snack of vanilla pudding after breakfast, or yogurt. For lunch she has her soups, she likes cream of asparagus, few bites of cheese and crackers. Afternoon snack of crackers or leftover of lunch. For dinner she eats whatever we're having and a glass of milk. She usually tries a little of everything but mostly just wants milk, sometimes more soup. She likes ice cream after dinner, and I like it too for her since it's got all the calories :) She feeds herself the soup through a straw dinner, and all her crackers, and her drinks. She likes me to feed her pudding and sometimes her ice cream. It's her relaxing snack time I guess :)
She's drinking plenty and staying well-hydrated. This was a concern of mine bc of her small kidneys, but she's managed her own fluid intake beautifully.
Mona is very eager to eat every day. She has trouble focusing still (that was one thing you and Eva noticed) and that is sometimes a problem, but usually a little reminder of what we're doing helps, and she definitely prefers to be seated in a chair with a safety belt, she likes the sense of security it gives. Same reason she likes to eat in her stroller or carseat. This goes for other things too, not just eating but learning time, too, it helps her focus and not just wander around "everywhere and nowhere". She does snack on the go, too, she has access to food all the time (her own cupboard) and likes to munch crackers and things while she plays. She only eats little bits usually, but likes to drink glasses of milk, eats a lot of her soup, and can eat a lot of ice cream.
We are so thankful to you and your team. We could not have been successful without the Graz team. I believe any child can be weaned in Graz. 2 families I recommended your program to are coming in November. They both have daughters with Wolf-Hirschhorn syndrome (mona's syndrome) and I met them through an online support group. They have been desperate to wean their children and Mona's experiences have really encouraged them. I am so happy they are coming to Graz and I know you'll take great care of them and the girls :)
Ramona's parents & and little Ramona