Jack went through an intensive feeding program at Seattle Children’s Hospital at the age of two-and-a-half to transition him off of his G-tube and to oral feeding. The program was run by Karen Quinn-Shea, an occupational therapist at Children’s Hospital in Seattle. We dubbed the program “Fun with Food” to help two year old Jack …
Blendarized Food
When Jack was about 15 months old we decided to start him on a blendarized food regime. He was tube fed during this time, so he was only getting formula. We knew that in the future we were going to work with him to eat orally and wanted to make sure that his stomach was …
Swallow Study
One of the common tests that doctors will run for children who aren’t feeding well is a swallow study. A swallow study will show if fluid is going into the lungs (aspirating) while feeding and if the swallow mechanism is working correctly. A swallow study is a relatively simple procedure, but can be very helpful …
Hard, But Good Decisions
Every parent is faced with difficult decisions around our children. In the moment it can feel overwhelming, but looking back you realize although it was hard it ended up being a sound decision. In Jack’s first year of life we were faced with two such decisions. Although they were almost eight years ago I can …
Milk Protein Intolerance in Children
Both Jack and Will had milk protein intolerance from birth until they were about 18 months old. We were lucky it wasn’t an allergy as children are less likely to grow out of one. Milk protein intolerance is the body’s inability to correctly process proteins. These proteins then pass into the intestines where they can …
Understanding Feeding Tubes
Our oldest son Jack had a feeding tube for three years from age four months to just past his third birthday (the last six months we didn’t use it, but needed to keep it just in case there was a set-back). Since he suffered from a feeding aversion due to severe reflux and milk protein …
Coming Full Circle
On Tuesday Jackson had surgery to remove what is left of his G-tube hole. This is something he has been asking about for the last year. It was always his choice, but we and his doctor wanted him to be a bit older, which is why we are doing it now. The procedure involves cutting …
The illusion of normal is gone
The last few weeks have been very hard. My last few posts have been light and fun, but this one isn’t. I have been struggling with writing this for a couple of weeks, going back and forth about what to say and not say, but I have decided to put it out there. After all …
Fingers are for feeding
This week we had our appointment with Robin Glass, Will’s feeding specialist. We haven’t seen her since early October, so I was interested to get her perspective on how Will was doing with his solids. He is very interested in food, just not really into using the spoon. He will pick up anything that I …
Acknowledging the fear
Yesterday I met with Robin Glass our feeding therapist to work with Will on solid feeding. (Side note – he is taking a bit longer to get the hang of it, so we are seeing her for pointers. More in that in another post.) After Will finished his solids session, she sat and watched me …