Wednesday, May 7, 2008

Another Day Another Trip To PCMC.....

Today we ventured back up to Primary's for a Dr. appointment with the Dysphagia clinic. We met with a whole team of people including feeding specialists, and dietitians, a GI Dr. and speech therapists.

We are pretty much doing everything we can for the little guy as far as treatment for all of his GI issues. We are going to do another swallow study in 4 weeks for just solid foods, like green beans, Cheetos, pudding, cooked carrots, etc... just to see if we can start those back up again. They want a pre-nissen study done, and then one done after he heals from the nissen. I know that this is going to cause us to have a couple of set backs once we get this surgery, but we will work through them like we always do.

Rhett once again set the Dr.'s straight on the fact that all children with Down Syndrome DO NOT fit into a cookie cutter mold. (meaning they are not all the same) I guess they were reading over all of his recent medical history, as well as previous surgeries and such. Well they came into the room expecting to see a very sick little boy who was not gaining weight, and I guess they expected him to be very low functioning. (whatever that is anyways.....I hate the high and low functioning terms)

Anyways, they were all shocked to see a robust two year old greet them with a very enthusiastic "HIIIIII!!!" and start telling them about the Elmo book he was reading. I think every single one of them had to pick their jaws up off of the floor.

I explained to them that Rhett writes his own rules and his own books, and does not follow any of the typical stereotypes. I also asked them to look at him for who he is and set his extra chromosome aside, if it was not needed in the discussion. The only time they brought it up was when I told them that Rhett likes very tasty foods, like tomato sauce, garlic, salsa, and that type of stuff. The speech therapist explained to me that when children have low muscle tone, alot of times those types of food kind of wake up their mouths and senses, and encourage them to chew better, and swallow better.

So she suggested that when we cook him his beloved green beans to add some garlic to them. Or some oregano to carrots, just to help wake his mouth up a little bit. Of course we aren't doing any solids for the next 4 weeks, but it was some very good advice. They told me that I was very smart to keep him sucking on his binky. Which made me feel not so guilty about my 2 and 1/2 year old still sucking on a binky. I just make him take it out when he is trying to talk to me. I refuse to listen to him if he is talking with it in his mouth. He is really starting to get the hang of it. Today he started to say something, and before I could say take your binky out, he took it out and the repeated his word. It was one of those proud mommy moments, you know, the little things that count.

They did some blood work to test for food allergies, since we have quite a few in our family. They said it was worth a shot to see if that's what is causing his eczema to be so bad. They also started him on a laxative. This is something I am NOT looking forward to. I gave him his first dose tonight in his feeds that he gets all night long. Tomorrow could get very ugly at our house. Very Ugly.

The reason they did this, is mostly for his tethered cord. Since we will be putting this surgery off for a while, and constipation is one of his biggest symptoms right now of that cord being tethered, the Dr. felt like it made sense to put him on a laxative to help ease that strain on his cord.

So that was our day in a nut shell. Rhett did really well, and I kept him in his stroller the whole time. He was not allowed to play with hospital toys, and when we went to Wal-Mart after the appointment to get groceries, I put him in his stroller rather than the cart as well. I figure he is much safer in that than in the grody shopping carts.

I also sanitized more than ever at both places. It's hard when your pantry is bare, and you need groceries, but don't have anyone to watch your littlest fella who needs to be kept away from germs. So I did the best that I could with the cards we were dealt today. Hopefully it worked out and we stay infection, and virus free!! (he did wear his mask too.)

Again, thank you for all of the prayers and support on our Journey. We couldn't do it without you.


Heather said...

Sounds like you are finding your way after the recent detours. You "sound" much better! Zoey has a g-tube with a nissen and although she was a lot younger then Rhett, let me know if you have any questions. Prayers as always

Ryan & Brytten Pettit said...


Kacey Bode said...

WooHoo Rhett!! Way to show them all that every kid regardless of their diagnosis is different. I hate when people say "all kids with DS are...." ugh. Anyhow, hope he didn't catch any germs and really hope you don't have a huge mess on your hand tomorrow!!!

Niksmom said...

Sounds like things are progressing fairly well. I laughed at your description of Rhett greeting the docs. We get the same kind of thing when people meet Nik. On paper he sounds like a frail kid to feel sorry for...HA! Yep, all our kids write their own rules; now if only they'd let us in on them as they do.

One question comes to mind about Rhett's eczema...has anyone done a nutrient analysis to see if he's actually absorbing the nutrients he's taking in? The reason I ask is b/c Nik had horrible skin and scalp problems before his GI surgery and they all cleared up almost immediately afterward once he started to actually GET the nutrients and could absorb them.

Nik is the same when it comes to strong flavors. Apples must be granny smith for the tartness, salsa, bbq sauce, hot pepper, horseradish...I kid you not! It makes for some very interesting meals!

I don't know if anyone has mentioned this (they sire didn't to us before the surgery) but you *may* see Rhett have some regression in his eating (skill, appetite, etc) for a bit after the surgery. I understand it's fairly common but you might want to talk to the team about it in advance so you can come up with strategies.

Hope things continue to be uneventful and Rhett stays healthy!

Kari said...

Your doing awesome Pam!! WTG Rhett!!! You keep showing them who you are little man!! I'll be praying that the solid foods digest properly and Rhett can get back to having those. Tristan is big on the spicy stuff too. He loves Broccoli with garlic and a splash or soya sauce and Tacos. I hope your diaper duty isn't too traumatic (((HUGS)))

Maren said...

The spicy foods make sense to me. Landon is the same way and he has hypotonia. He eats spicier foods then my husband or I.

~Melissa~ said...

Yay for Rhett teaching his docs a thing or two :)

The spicy foods help Delphine too - she loves flavor!!

Anonymous said...

Wish I could get Wyatt to try green beans with garlic! I can only get him to eat gerber stage three veggies and fruits in a jar-he sucks them down with a straw! However he does like chili cheese fritos and frozen blueberries because they bombard his mouth
Well wishes from Jayne in WI

Anonymous said...

I am so glad the appointment went well. You sound stronger.