Ambrose has made slow and steady improvement with his nutrition. He is tolerating his tube feeds better, rarely vomiting, and is gaining weight. We are feeding him Pediasure as well as goat's milk by g-tube, and we've recently reintroduced breast milk.
Although he is not taking a lot, he is definitely interested in tasting food by mouth. He receives weekly visits from both an occupational therapist as well as a speech therapist, and they are both focusing on his feeding. He's doing very well trying different textures, temperatures, and flavors, and we expect to see great improvement over the next few months.
He barely passed his overnight oxcimitry study last month, and is waiting for an official discharge from the pulmonologist, who has ordered another overnight study just to be sure.
A recent x-ray showed that Ambrose's hip remains in good position, but has not yet ossified, so we'll x-ray again in 6 months. Ambrose is crawling well, climbing stairs, cruising on furniture, leaping between pieces of furniture, and can walk holding on to something. A developmental specialist visits twice a week to help him practice.
Ambrose and Charlie are talking more saying "mama", and "dada" discriminately as well as the names and sounds of a few animals and the sound of Peter crying.
Hi,
ReplyDeleteI wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding. We also have some information on transitioning to oral feeding (scroll down to the bottom of the tube feeding tips page, in the resources menu).
Check out our web site at www.oley.org. For a good overview, click on the "New to Oley" button.
Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.
Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY