When Max was born, he had terrible reflux and found it hard to get 'his wind up' He would cry because it hurt to burp. Tummy time was limited time, sitting up was hard to do, and also came late around 9 months. At 13 months he was beginning to crawl, with the reflux still a barrier, he didn't take his first steps until 18 months. That was thanks to early intervention and therapy help we have been given for Max. We are beginning to see little improvements every week. It's teaching us as his parents the extra steps we need to take to implement on a daily basis and really go back to basics' with our teaching.
Diet
We were feeding Max very small amounts of milk, even through nursing, I would give him only 3-4 oz a feed, every 3 hours during the day, because of the reflux. After 9 months of nursing, I transitioned to the Simulac formula bottles,they were 8oz bottles, we would still only give him around 4oz max per feed. At 13 months we switched the formula to whole milk. This is when I started to see a change to his bowl movements and struggle with constipation. We know the milk is a part of the cause, but the fat from the milk is good for him at the same time. A catch 22.
Next step, we took him to checked for allergies and was negative for all environmental and milk allergies. So he's not allergic to Milk and that leads us to believe he has a very sensitive digestive system.
This is the Williams piece, or missing piece we call it. Because of the sensativity in his system, we want to avoid Hypercalcemia.
Hypercalcemia has been reported for ∼15% of infants and children with WS. The hypercalcemia in infancy usually occurs in the first years of life, resolving in most cases by 4 years of age, but it may recur during puberty. The cause of the hypercalcemia is unknown. The hypercalcemia typically is mild and transient but occasionally can be severe and life-threatening.
This is also interesting, when I was pregnant with Max I had to go to the hospital at 32 weeks, I thought it may be an early labor, close, I had developed a kidney stone, (We named him pebble :) they said from eating too much calcium. Another coincidence with WS.
Today, we continue to give Max whole milk because we want him to have the min daily calcium intake. 15-20oz a day. Probably equivalent to one bowl of cereal. He will sometimes have 3oz in the morning if he wakes up early and we want him to sleep longer! and 5-6oz before his nap and then nighttime, before bed another 5-6oz.
In moderations, only a little cheese, yogurt, orange juice etc. Almost everything we eat contains calcium. Max still is on Gerber stage 2 and 3 veggies and fruits. I like these because I don't always have time to whip up home made, so these are perfect with a slice of bread, crackers. For hot food snacks he likes spaghetti'os, soup, egg and toast. For dinner in the evening we give him what we eat, salmon a lot of times, chicken, turkey, spaghetti, green beans and mash potatoes.
The pediatrician recently recommended to try fiber drop supplements from the drugstore.
If anyone out there has a child that has the same difficultly, I would really like to learn of your experience and routine. It breaks our heart every time we see Max hurting and stresses himself out, his heart def doesn't benefit from it.
Photo's
Occasionally he has a few treats, here is a collection of Max's favorites with food
Love's peas!
Farley's rusks...
Serving breakfast...
Dinners out..haha
Dinner dates...
Can't leave out the 1st Birthday cake...
& loves biting pizza crust...
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