Friday, February 20, 2009

Feeding Therapy And How My Son Slipped Through The Cracks

I fought like crazy for many years!! I told people there's something not quite right with my precious child. Sometimes being poor really stinks. We're on Medicaid and I'm telling you, if the government goes ahead with Universal Healthcare the way they want to, we're all in BIG TROUBLE!

But enough about politics. Yesterday was a HUGE eye opener at Feeding Therapy. We now have 4 new diagnoses since starting with this therapist. He has dysphagia and hypotonia, oral motor delay, and fine motor delay. Interesting, isn't it, that nobody found this out before?

Yesterday, Marshall was his normal self for the SLP. He tried every trick in the book to not have to eat. His SLP was floored. He had made such awesome progress so quickly that when he was refusing to eat, she was so surprised. As she worked with him yesterday, she noticed he has a hard time with chewing. It was the first time anyone has said that to me. I don't know why it takes him 2 minutes to chew and swallow a bite and only when he has a drink will he swallow. The therapist put on gloves and got a piece of bubble gum. She rolled it out a bit and had him bite on it. She demonstrated proper biting but he wouldn't (or couldn't) do it. He would do a bunch of quick little bites but never did anything to the gum. She put it inbetween his teeth in the back and had him do 5 chews. After a couple times of this, he said, "My tummy is full". LIGHT ON FOR MOMMY!!! He says hi tummy is full because it's too exhausting to keep chewing and he doesn't want to do it. THAT is why he would much rather drink his meals. That's when she said he has an oral motor delay.

So, this week, we have to work on his chewing. We have to use bubble gum and have him practice biting properly, and then also have him bite on chewy tubes. At every meal he should eat a hard munchable, 1-2 soft cubes, and one hard meltable. Those are the textures. Now with those textures in mind, he needs a protien, a starch, and a fruit or veggie at every meal. That's a lot to think about. Especially with both my kids losing weight now because they don't want to eat. I'm going to buy heavy whipping cream today, among other things, to help them gain weight.


Happy in Holland said...

I'm so sorry--it sounds like meal planning for you just got a whole lot harder. Keep working with him. I know all about Mason wanting to "be lazy" about things that are too hard when he comes to his motor skills. Keep up all the good work. I'm sure it will pay off. Two steps forward and one step back, remember?

Annette Monts Falls said...

We were told to add advocados and bananas to Clay's meals when we tried so hard to get 'anything at all' in him for caloric intake. At one point we were adding a powder to his liquid nutrition that was simply for calories. Now he gets a high calorie liquid called Nutren via his gtube.....I don't know how much your kids take in water, as that becomes an issue with balance and such for the system and caloric intake, but if they can drink you might could look into some of those kinds of liquid drinks with higher calories and perhaps turn them into milkshakes or smoothies to make them more interesting and pleasing to taste? Just a thought.....there are so many different liquid food choices but you have to ask a doc or nutritionist about them and most are covered by medical Grocery stores and drug stores only stock a selected few choices....normally those are considered out of pockets. Medical justification sometimes makes a huge difference in payment of things, and choice of supplement. I hope somehow this is something that might help the weight / caloric worries.......good luck.

Melissa said...

I like to read your posts about eating. We have similiar problems at our house. Josh is almost 21 months and we just started working with a second OT for sensory issues related to feeding. Our little one has an oral/motor delay as well. It's so hard and frustrating to have to fight them every day all day. We also are being followed by the dyphasia clinic at PCMC. I know all about the calorie problem as well. We are adding coconut milk to Josh formula right now. I feel like it is one step forward, one step back all the time. I really understand what you are going through!