Thursday, July 2, 2009

Dylan's Appointment

The Feeding Team.

For some reason, whenever I say it aloud, it reminds me of The Swat Team or something equally serious, like The CIA or something. Orrr, maybe my brain is just soggy from all of this rain and I am not capable of forming normal thoughts...

Anyway, moving on.

Two days ago we had Dylan's 12 month appointment with our semi-new pediatrician. This is the first time we've met her and I must say, I am quite impressed! She specializes in kiddos with developmental delays and truly knew her Down syndrome stuff!

I was able to explain some of our recent struggles - at length too, because Cassidy was not...errr... shall we say, "invited" to this particular appointment. I talked specifically about Dylan's reflux (did I mention that we are now on medicine #4 with no improvement?) as well as how I've been encouraged by our OT to start using Thick-It in his fluids to encourage better management (AKA - Dylan can't swallow thin liquids without gagging and choking).

The Pediatrician listened to my concerns, checked Mr. Dylan over and recommended that we see "The Feeding Team" down in Boston. She thinks, although is not absolutely certain, that Dylan may have a submucous cleft palate, thus the swallowing issues.

This Feeding Team consists of a Pulmonologist, a GI Specialist, an ENT as well as a Social Worker and a Speech and Language Pathologist. When "The Team" called me with the appointment information, they told me to plan for "at the very least - 4 hours"! Daaang!

Honestly, I am quite curious about this whole "Feeding Team" thing. I must say, I am also pretty relieved that Dylan will finally be getting such a thorough exam of this nature. I mean, who knows. Maybe there is nothing at all going on and we just have to learn to deal with swallowing and spit-up issues. But on the other hand, maybe something is going on and we can go from there.

His pediatrician also called me today with the results from Dylan's blood draw. She said that his TSH thyroid results came back slightly elevated. She said that this is pretty typical for kiddos with Down syndrome and informed me that there is nothing really to do at this point. He will be tested again at ages 1.5, 2, and 3.

SO! Whew, that's alot of medical stuff I know, but thought it may be of some interest. I'll be sure to write about "The Feeding Team" (why yes, yes I do like writing "The Feeding Team"!) after our appointment in a couple of weeks.

13 comments:

Kimberly said...

Wow. I am glad you had a good expirence with that Dr.s office after meeting with that rude nurse. I think this will be so good to meet with the 'feeding team'. If something is wrong they will definitly be able to figure that out. Glad you and D went alone, I am sure it is a lot easier that way.

Tausha said...

You crack me up. I love "The Feeding Team". Hopefully they can figure things out for you and Dylan. Glad you have such a good attitude about it.

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

it sounds like you have found a great new pediatrician and i am so happy that you live close by a medical group called "The Feeding Team"! I hope they can help you and Dylan figure this out!!!!!!!

Wendy P said...

Looking forward to hearing the dispatches from The Feeding Team! I get a strange kick out of listing the members of Kira's Stable of Professionals.

Derek, Kenzee and Gage said...

What a good resource to be getting involved with! I hope there is nothing that they find going on, but at least if they find something they will be specialists that know exactly what to do to help! 4 hours... that's a long time!!

Lis said...

The Feeding Team sounds AWESOME!

Tim and Kelli said...

Interesting. Can't wait to see what the "feeding team" has to say. Wow, 4 hours, does that include a nap time? :) Glad you found a good pediatrician.

Jackie said...

That is so great. I think you're right about the in depth exam. Maybe it's nothing, but at least you'll know and you two can move forward.

Bethany said...

Ugh, we've been down the submucous cleft road before. Payton also has a bifid uvula, which goes hand in hand with SCP. Does Dylan have a bifid uvula? Why are they saying that they think he has a SCP? Payton's bifid uvula was detected during prep for her T&A, but after palpating her palate, they didn't think she had the SCP, but given the bifid uvula, they errored on the side of caution and left some adenoidal tissue in there. Anyway, the best bet is to see a craniofacial specialist, which would probably be easier now when he is young. They put a camera up their nose or something ... Payton would be a nightmare, so we haven't gone yet. lol.

Jessica said...

Sounds like you've got a great pediatrician! Please do let us know about "The Feeding Team" - we have our first appointment with our team in August and I'm nervous...

Amanda said...

I am glad that they are getting it checked out by the very official sounding "Feeding Team." In the meantime, I need a similar team to tell me to stop eating so much. : )

Angela said...

Sigh.

This is a lot of work, isn't it?

Benjamin has now been diagnosed with pneumonia and his pedi thinks he is aspirating his milk when he drinks. So he is on amoxicillan, albuterol (in the nebulizer), prevacid, and we're adding Thick-It to his milk. He has never had any trouble swallowing and loves milk and all foods. But in the past month, he has had a lot of fluid in his chest mainly when he eats and drinks. We go back for another chest x-ray in a week.

ARRRRRGGGGGGGGGGG!!!!!!!!!!!!!!!!

B's TSH levels were slightly elevated at his 12m visit, too. We'll recheck at 18m. Sigh again.

Sheila Mitchell said...

Things may seem hard and doctors are never-ending, but it is all going to be worth it later! You have been givin a gift, although trying, will make your heart & life so much more! Looking forward to see future results!