Thursday, June 17, 2010

Feeding Evaluation and a Coupla' Surgeries

We met with the Feeding Team yesterday for about 2 hours. It seemed interesting and after suffering from a serious food-funk lately with Dylan, I am now feeling re-motivated to get going again. I am going to start slowly, though, and make small changes. They told me that this will most likely take a while and to think in terms of "baby steps". I mentioned that I was nervous about making too many changes as that totally backfired on me the last time.

Anyway, they left me a list of suggestions and will check back in with us again in about 6 weeks to see how everything is going.

Some things that were suggested to me (in case anyone out there is in a similar boat) were:

~add broken up Baby Mum-Mums to a favorite puree (or YoBaby) as they will dissolve and will not pose a threat if he does not chew them all the way; this will slowly introduce increased textures while maintaining safety and will also help with tongue movement
~use whole milk mixed with Pediasure to increase caloric intake and fat
~continue with different straw cups (thinner or loopier/longer straws = increased difficulty)
~dipping Nuk Brush into a juice or powdered lemonade and rubbing mouth; feed puree off the Nuk Brush
~look at Greek Yogurts; Nectar Juices; natural ways to thicken juices
~for variety and increased protein, mix stage one meats with stage 2 or 3 veggies
~add a different texture to every meal - he does not have to eat it; try food play; vary the way the food is prepared and let him watch me prepare it (we do not want him thinking that all food has to come from a jar!)
~slowly give him some single grain rice baby cereal

So, that's where we are at right now. We'll get it. It just may take some time.

As we were driving home from an appointment today, I finally found this store that I have been meaning to visit. It's called My Low Carb Life and the couple who owns the store have an 18 year old son with Down syndrome and Celiac Disease! I am really looking forward to getting to know them more as we continue on this journey...


We have decided to move forward with getting Ear Tubes placed for Dylan. We feel it is the best decision for him at this time and will be scheduling it within the month. Unfortunately, today we found out that we will need to schedule another surgical procedure due to scar tissue forming and improper healing after his first circumcision that was done shortly after his birth. Bah! What are the chances of that happening, right?! Well I can tell you, actually. There is a 1% chance of that happening and naturally, that would be Mr. Dylan...

Good thing I am madly in love with this kid...: )


Lis said...

Poor D! T had tubes, it was a snap. He also had to get "pulled" back at 2 months, OUCH!

Kelly said...

My, my Dylan....always keeping mommy on her toes!! What great tips regarding feeding! I'm taking notes!! I had the opportunity to speak with Laura (Anne & Whitney: Up, Down & All Around), she too, had some wonderful advice. Especially the yogurt for thickening liquids and the straws...did you know that Whitney is an absolute champ at the "straw hierarchy". You might want to drop her an e-mail. Landon has some of these issues too!! Ugh...boys:) LOL

So, tubes it is!! Whatever is in the BEST interest of our kiddos is ALWAYS the way to go!! Landon's appt. is next month, but after reading the many responses you received on your post (all that I took to heart), Scott & I agree that if it is meant to be, then it WILL be!!

I LOVE that picture of Dyl!! He looks like such a big boy:)

Anne and Whitney: Up, Down and All Around said...

I hope all of the suggestions the feeding team gave you will help! I am by no means an expert at all, but we have been through a lot with Whitney with feeding, etc... (especially with her having had a feeding tube for the first 5 months of her life) - and I noticed Kelly (Landon's mom) mentioned in her comment that she and I talked the other night... so if you would like, I would be more than happy to share what we have done and are doing with whitney. Just send me an email ( + I think maybe at one point I sent you our # in case you wanted to talk about ear tubes? anyway - the suggestions they gave all sound great, I really hope that slowly Dylan will be more into textures and able to eat a little more variety!!!
Glad you are feeling better about the surgery for the tubes - hopefully you will see a difference once they are placed. so sorry about the other surgery - i hope it is a complete success w/out any further complications!!!! i love the pic you posted of dylan, by the way - what a smile!!! :)

Derek, Kenzee and Gage said...

Oh my word, that picture is to die for!! He is such a cute boy. No fun to hear about the surgeries, but so happy to hear you have more suggestions to work on with feeding. How awesome to have people who specialize in such things. He'll do great with it, and you will to, you always do! Such a great mommy.

Anonymous said...

You sure have your platter full.Now that the weather is changing and you are able to get out more mabe he (Dylan) will eat more for you.Food that about the playing outside seems to work up an appetite.They sure are a beautiful pair if children.what patience you have and I know that all your readers are pulling for you.
God Bless
Art Betty

The Sanchez Family said...

If the baby meats gross you out, you can also add pureed beans into most everything...refried beans or mashed up garbanzo beans plus it has great fiber. We still struggle with food issues too...we take one step forward and two steps back...hang in there! We have tubes in Joaquin too. And my oldest son had to be pulled back at around 1 year old...WISH they had done surgery vs just PULLING it back manually and hurting him like heck. HUGS!

Loren Stow said...

All the best for the feeding ideas! I hope everything goes well! I know it must feel quite overwhelming to try so many new things, but like you said - baby steps!

Sasha said...

Glad to hear you are getting the tubes. Sorry about the feeding issues. Is it his weight or just he doesn't like textures? Wysdom uses a protein powder (from rice) that our ND suggested and it has some vitamins in it. Wysdom doesn't mind drinking little sips. You could use that to get more cals. It is by Metagenics and is hypo allergenic and it's vanilla. Email me if you want more info on it. We do a blenderized diet through the tube ..but Wysdom also eats this via mouth with cereal. Maybe Dylan would like this. He get's hemp seed, quinoa, veggies and meats. You don't have to use meat or dairy if you don't want. Anyways hugs and best of luck. He is so cute by the way sitting at the pool!!!

Tammy W. said...

Why did you have your son circumcised? Was that considered medically "necessary" - as far as I know, it's cosmetic. And now your son needs MORE surgery because of it. But you're debating ear tubes? I don't get it.

Laurie said...

Thanks for the support everyone!! : )

I would be happy to respond to this comment and all of the other ones you have left this afternoon if you'll provide me with your email address.
Thank you for visiting Dylan's blog,