Wednesday, March 23, 2011

Feeding Assessment

As you have all known for a long time now, Colin has had many issues with feeding. A month or so ago, maybe a little bit more now, it felt like we had come to a halt when it came to any progress that we were making. We attributed a lot of it to the molars that were coming in as well as him generally not feeling well. Although we had reasons, we have still been really frustrated because at times, it just has felt like we don't know what we should be doing to move forward and fix some of the issues.

Our biggest concern since starting Stage 3 foods is that Colin has never really chewed his foods. He takes the food into his mouth, mushes it around and then swallows. We have never really seen any progress whatsoever in this department. Our other concern is that Colin still has not been comfortable with foods that are solid including crackers, puffs, yogurt melts, cookies, bread, etc. We know textures are a large issue but don't know how to move in the right direction.

So, during one of my melting points, I finally reached out to Colin's speech therapist who had been suggesting St. Joseph's hospital in Patterson, NJ for the speech and feeding therapy/assessment program. She has always spoken very highly of it and at this point, we were willing to try anything. Going into this assessment today, we thought that even if we weren't really given any thoughts other than to "continue what we were doing", at least we tried and made an effort.

However, that was not what was said to us today and we have a plan that we are going to be following.

Colin's appointment was scheduled for 1:30pm and we needed to bring foods with us that Colin is comfortable eating and eats well. We got there early and spent time in the waiting room keeping Colin occupied. We needed to fill out a 7-day meal sheet as well as a stool survey and bring it with us for the evaluation.


A decal on the wall...




The evaluation is a team approach. We talked with the speech pathologist first who took a very thorough history on Colin's feeding troubles going back to birth. She watched us feed him his lunch and addressed these major issues: First, Colin does not lateralize his tongue when eating. He simply takes the food in, mushes it and swallows with no attempts to move from side to side. Second, he does too much "sucking" when eating any type of food including pureed food. What he should be doing is letting the food slide down his throat instead of putting so much work into it. Third, when eating food like his pancake pieces, his lack of chewing does not help him at all, so he uses that sucking/mushing skill to swallow the food. Apparently, NOT good.
We saw an occupational therapist next who assessed Colin's core strength (she was very happy with this considering his low tone) as well as arm and leg strength. She noticed that when we were feeding him in the high chair, we did not put the upper body straps on him. She said that if we do this, then we will be giving his upper body the support that his mouth needs (kind of like a strong base for his mouth). She basically said that we were doing a great job with his body strength, just need to continue to work on the exercises we have been. She was happy we just got Colin fit for the orthotics this week.
Finally, we saw the nurse practitioner who addressed "internal" issues. She asked thorough questions about his poop production and basically said that because he regularly poops rabbit pellets, he is not able to fully empty his intestines which causes a lot of pressure, and prevents his stomach from emptying the way it's supposed to. This can affect a child's eating because it keeps them from wanting more food and a variety of foods. We need to give him some Maalox every day to help "regulate" this. She also discussed the reflux which Colin just started medication for very recently.
So, this is where we are headed. First, we need to take a step back and puree all of his foods. We can keep foods like his pastina (pictured below) in their original form, but we need to puree the veggies and meat we put in it and start separating them back out of his meals so he learns separate tastes.
We need to remember to stay positive (this was our own suggestion) and try to keep the stress out as much as possible (kelly's suggestion from Landon's blog :)...

...and we need to do a lot of the feeding ourselves right now. We need to place the spoon with firm pressure on his tongue, pull it out, and then apply pressure to the bottom of his chin so that he takes the food onto his tongue and pulls it to the back of his mouth so that he swallows. This is why we need to stick to pureed foods right now.


They weren't completely happy with the fact that he solely uses straws and is not drinking from an open cup (although i don't know many kids at this age that ARE drinking from an open cup) because it is promoting that sucking pattern with food (even though we were always told a straw is the best for improving mouth strength!)...

We know this is going to take a LOT of practice and we will probably have a lot of set backs and challenges, but at least we have somewhere to start.
I had to go out and buy a food processor to puree his foods, and even though this is going to be a lot of work, I'm glad to have a plan. We need to follow up in 3 weeks to see how this first step is going. Hopefully with all of these methods, we will make some progress in the right direction...
...at least we can only hope!

14 comments:

Aimee said...

Sounds like it was a success! So glad you got a plan-of-attack; always nice to have a direction to head. Really hoping that your frustration levels head downhill quickly! :)

Rochelle said...

So glad you have a plan in place. Praying it is successful and his food issues soon become a thing of the past. ( I thought you were saving the other half of the post for tomorrow. LOL)

desciseaux said...

Good luck! I hope the plan works! If you need any ideas or recipes for the pureed food, check out wholesomebabyfood.com. Maybe it'll have some ideas for recipes that Colin would like! :)

ch said...

Thanks for sharing about your visit! LC had a similar feeding evaluation when we were working on graduating from the Gtube...ironically, she had NO feeding issues compared to Jace. AAAAAAAAAAAAAA....I DREAD mealtime with that kid. We have definitely plateaued and the turkey will ONLY eat warm yogurt (barf) and oatmeal with peanut butter stirred into it. And that. is. IT. I want to weep. The part about the upper body support makes so much sense with Jace, because he's so gravitationally insecure and hates all things vestibular. We'll have to try that...I'd also talk to your pediatrician about the Maalox and her dosage recommendations...we've had MUCH more success with Miralax...Jace is a pellet-pooper but the Miralax is so helpful and doesn't contain some of the controversial ingredients that some people question in Maalox...Let me know how it goes and thanks AGAIN for all the info!!!

Kristin said...

I love how every eval is so different. We were told not to use straws (apparently they don't buy into TalkTools), but a friend was told to use straws a lot. I know every kiddo is different, but I guess so is every therapist :)
And yeah, Max is only allowed to use cups that are EMPTY! haha-

Kacey Bode said...

When Ella was in her birth to 3 school we used a cup called the Infa-trainer which I highly recommend! It teaches to drink out of an open cup, and you can adjust the flow on the cup, and it decreases the mess! I now work at that school and we use it with a LOT of kids, it's great. Here is a link to one, you should search around to see if you can get it any cheaper : ) http://www.new-vis.com/cart/detail.php?Item=CMF-42-01

Nana said...

Colin you are so lucky that you have 2 very wonderful parents! As blessed as we all are to have you in our lives, you are blessed to have the mommy and daddy you do who are willing to do ANYTHING for you as well as love you soooo much!! Love, Nana

Suze said...

So glad to hear you have a new plan to follow. The frustrations I have with Tommy's meal time are nothing compared to what I know you've been dealing with (mine are just about what the kid will and won't eat!). I agree with you on the cup comment - I really don't know any kids at this age using an open cup! And I've seen plenty of kids older than both of our boys with bottles - and while I admit sometimes I think it's a little odd if they are older, I remind myself that every child and every situation is different. I see it with my niece and nephew who have a lot of delays related to their situations. Good luck with the new plan - and I think your own advice was the best - stay positive!

Wren said...

It sounds like you got a ton of very helpful information and are headed in the right direction! I love all of the pictures of Colin...he gets more handsome by the day!

Kelly said...

Hang in there Kelli....this sounds all too familiar to me....it DOES get better!!

Chromosomally Enhanced said...

WOWSA! that is some great information! and such great ideas for feeding Maddie! thank you for the information! I am so happy for you to get a plan! I never in my wildest dreams thought about eating issues and a Maddie! but so glad to have resources and help!! thank you and I am going to try the upper straps! smiles

Lori said...

Oh, Kelli - I am praying for you all that this works. I know how frustrated you have been. Can't wait to hear how it is going.

I agree w/ Courtney about the Miralax -- we use it with Paige (1-2x/week) just to keep things flowing. And I can see how not being able to go would affect your eating. When Anna has not gone #2 in a couple of days, she has a tendency to spit up - so I can see how that is an issue.

Anyway - sounds like you got some great advice and hopefully a plan that will help you all turn the corner.

BTW - your Nana rocks! What a sweetheart =)

dannielle said...

Oh Kelli this sounds extremely frustrating, but it sounds like you went to the right specialists. It sounds like Colin got an extremely thorough assessment and it also sounds like he has all the support he will need. Best of Luck!

~Dannielle

SmileLingual said...

Kelli, bear with me as I pass on some info. I'm an SLP (specializing in orofacial myofunctional disorders www.iaom.com) who came across your blog in the process of doing some research. The straw controversy is a balance between strength and coordination. There's a time for straws and a time to withhold straws. King Solomon didn't say it, but he would have, if he'd been an SLP! Using a straw promotes improved oral strength but can also reinforce an immature suckle pattern. Thought you might want to know. :) Also, I read a book recently that you might like. It's called "Just Take a Bite." It is SO good. Very practical. It's written primarily for kiddos on the autism spectrum but is focused on sensory feeding disorders, which can affect anyone with SI issues.
You sound like an amazing mom for Colin. He is blessed to have you! It's great that you are advocating for him and loving him so well. What a joy. I pray you have wisdom and discernment in the steps you take and that you may feel the love of God as you love your little man.
Blessings,
Cheri