"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, April 14, 2010


... Rissa's new Speech Therapist, Julie! Today was our first session with her and she is fabulous! I am so glad we have made the transition out of the early intervention program, which is how Marissa's former ST came to us. Not that her former ST was bad, it was just time for a new perspective and a new way of doing things. Julie is a feeding specialist as well and has some really great ideas. Julie had Marissa doing some feeding therapy today and she did so well! She had kind of stopped progressing with her former ST but today she seemed excited and encouraged to start taking some bigger steps and start trying new things.

Julie mentioned that Rissa is not only doing better than she expected, but is also farther along than most kiddos she starts with. A lot of kids have issues with food being scary to them and, luckily, this has never been the case with Marissa. The girl loves food, she just doesn't know how to eat it! Julie is excited to know that Rissa should be getting her trach out by the end of the summer. She said she knows many cases where a trached child started eating so much better after they had their trach removed.

I am just so excited to already see great things happening and I can't wait to see where Julie is able to take Rissa on this journey!

I am also lovin' Rissa's ENT, Dr. P. I have stated before on this blog how much we love her but it is just re-confirmed with every interaction I have with her. I have been emailing back and forth with her with some questions I have about Rissa's upcoming surgery. The fact that she is willing to communicate with me by email instead of making me talk to her MA to relay phone messages or making me come in for an office visit to answer my questions just makes me so happy! And she answers my questions in a way that just builds my confidence in her more and more with every correspondence. I am still not looking forward to this surgery and her recovery by any means, but I am becoming more informed, and therefore, more comfortable with it.

Just to give you all a better picture of what will be happening with Marissa's surgery in June, I am going to pull a quote from one of my emails with Dr. P. I asked her to go over, one more time, what different types of procedures she was considering:

Options I’m not too keen on are vocal fold lateralization and arytenoidectomy. Both of these are frought with potential complications (i.e. higher risk of aspiration postop) and are much more difficult in a young, pre-pubescent larynx. Marissa’s ideal choice is an endoscopic posterior graft. What this entails is actually taking a cartilage rib graft and endoscopically placing it in the posterior part of the subglottis to expand her airway. Still the risk of aspiration, but to a less degree. Other risks: breathy voice, failure of graft, infection of graft, airway compromise (always a risk in any airway procedure), collapse of lung (from the rib graft harvesting). Pain postoperatively is mostly related to the rib graft site. Hospital stay likely only a few days since she does have a trach. Would begin capping trials, etc postop. Would also be periodically evaluating her airway to ensure good “take” of the graft and no formation of granulation tissue (repeat bronchs within the first few weeks postop).

I can't believe it will be able to be done endoscopically, and therefore, the hospital stay and recovery time will be shortened significantly! I am ecstatic!

So, to review, we just had a really good day today, with really good people on Marissa's team and I just had to share!


Michelle said...

I love Dr. P too!! That sounds really a good way of doing it. As with any surgery, there are risks involved, but I'm confident in the people that are taking care of my little niecey poo!!

We love you guys!
Auntie Chelle

Colleen said...

That's exciting about the therapist. it's nice to get a fresh start and get some new ideas. That's also awesome that you have a good ENT who can make you feel more comfortable about the upcoming surgery.

The VW's said...

YAY! Marissa looks happy about it too! :)

What a blessing to have professionals on board that you like and trust!

So happy for you! Good days make the more difficult ones easier to handle! Praying you continu to have many great days ahead! HUGS!!!

Lacey said...

Sounds like a great surgery! It also sounds like a few of those possible complications are rare ones, but they have to tell you anyway. That sounds like what they may do with Jax. Take cartlidge and move it to the airway.
It always amazes me how kids can breath with the trach capped. It seems like it would be hard to breath around that tube!

Nana and PaPa said...

It's so refreshing and uplifting to hear good news when it has to do with our sweet Miss Sassy Pants! I'm glad you're blazing some new paths with her ST...it really helps to have a new direction and new perspective. And I hope I have the privalege of meeting Dr. P someday so I can tell her in person how much of a blessing she is, not only for Marissa and her family, but for all the other kidos out there who need her care. YEA!! It's a GOOD day!
Nana & PaPa

ANewKindOfPerfect said...

Look at that grin! She knows she's hot stuff. :) I'm glad you like the new ST. I wish we could find one that meshes with Peanut, but our children's hospital has a waiting list of over a YEAR for feeding therapy! :( Boo. I love that the ENT lets you email him. Our neurologist does that, and it makes life SO MUCH EASIER!!