Feeding Update

Well I thought I would give a feeding update since it has been awhile. Trey is making progress with his eating and drinking but still at a slow rate. We are seeing some improvements as the days go by but he still relies on his tube feedings for 100% of his nourishment. Some days are better than others. He has several foods and drinks that he consistently does well with but any new or varied textures or tastes continue to be a huge struggle for him.

We met with our wonderful GI specialist and dietitian at Mary Bridge when we were in Tacoma for the Thanksgiving holiday. They are very pleased with Trey's continued weight and height growth. So we know the formula and tube feedings are doing their jobs. Obviously the ultimate goal is to get Trey to feel safe and independently eating and drinking on his own. They decided to decrease the time he gets fed at night and added an additional bolus feed during the day. The idea is to slowly get him used to a normal amount a child his age would get during the day. So overtime we hope to completely eliminate his night time tube feedings and then start to work on decreasing his daytime amount when he starts eating more independently.

So there was a discussion on how to help Trey keep reaching his goal...

So one.. Trey never seems to have a true appetite drive. He could go for 4 hours in between tube feedings and not seem hungry at all. Even though he did have a gastric emptying study done that showed his emptying time seemed normal the doctor said it only tested for a short period of time. So now that he is finally tolerating his tube feedings we decided to start a trial on a medication to hopefully stimulate his appetite. We are working up to a certain dosage and were told it will take awhile to see its effect. But we are almost at a 2 week mark and we have seen some improvement in wanting to eat and the amount he will consume. It is only the foods he is comfortable with eating by we are excited to see a small but definite increase in his drive to eat.

The other concern the doctor has is Trey still continues to reflux. The amount of times a day Curtis and I physically hear him has decreased but he still continues at a rate that could be affecting his willingness to eat. Trey currently takes a medication that helps reduce the acidity of the reflux so it doesn't burn when it comes back up but it doesn't decrease the amount of times he reflexes a day. So the next step is to start him on a medication that will help hopefully decrease the amount of times he reflexes. We didn't want to start him on this at the same time as the other medication because if there were problems or improvements we wouldn't know which one was helping or hurting Trey's current situation.

My Mom saw a clip on the Today Show that I thought was interesting and could totally relate to. It's a story on a family whose son has a similar situation to Trey but the child also has autism which complicates things even more. Check it out if you would like...

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Going to feeding group and seeing clips like these is comforting to know you aren't the only parent going through this helpless and frustrating situation.

Trey continues to go to weekly group therapy which is very helpful for him and provides support and ideas to help me encourage Trey with his feeding difficulties. He also is starting additional individual therapy sessions to work on things the therapist notices in group therapy. I think this will be very beneficial. The therapists do an amazing job. We feel so blessed that they started and we have been accepted into this program.

Here are a few pictures from one of Trey's individual sessions at our house with one of his therapist. Please excuse that Trey is still in his PJ's. It was after a late basketball game the night before:)


The therapists usually start with an exercise that involves some sensory play and oral motor preparation before they actually practice eating. This has proven to be very beneficial for Trey and his success he has when trying to eat at therapy or at home.


Trey concentrating very hard to get his stickers on his paper:)


I can't believe it's almost been a year since we have started on this journey. For some reason I had this idea or I guess you could say hope that we would be passed this obstacle come Trey's 2nd birthday. But awhile back on a difficult feeding day I called Trey's dietitian and she said that the average child who experiences Trey's situation usually has their tube until the age of 5. Obviously this wasn't what I expected or wanted to hear but it put into perspective that this is going be a journey that Trey and our family will be on for awhile. But I know with continued prayer, faith and a positive attitude someday we will sit as a family and I BELIEVE Trey will be able to eat with us:)