"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

Saturday, October 2, 2010

Left You Hangin'

Sorry about that. I know Rissa got her trach out almost two weeks ago and I have not updated
since. We have been pretty busy. I'll catch you up on what we've been up to lately.

Rissa has been doing awesome!!! If it weren't for the fact that we have to change the dressing on her stoma every day, she would not know anything was different. She is just going about her "Rissa Roo Business" as usual. In fact, just tonight, we decided to try letting her sleep without her pulse-ox for the first time in... well... her life! She and I started to catch a cold on Wednesday last week but her symptoms seemed to have dropped off. Hooray for that!

Her stoma is still open. Honestly, it really hasn't gotten any smaller since the morning after decannulation. Although, we do think it may be closing, ever so slowly, from the inside out. But it is still open and we still have to keep it covered, which is a problem in itself. Marissa has such sensitive skin that the tape leaves red, irritated marks on her throat. We have tried gauze, paper tape, Band-Aids, and Tegaderm. If any of you out there have any suggestions, I'd be glad to hear them!

Dr. P says her stoma might take months to fully close, and it might not close at all. She says she doesn't like to consider surgically closing the stoma until a year post-decan. We had a follow-up appointment with her yesterday and I asked her if she would consider surgically closing it next May if it hasn't closed on it's own by that point yet. It is very important to us that Marissa be allowed to experience a normal Summer, complete with playing in the sand and dirt, and swimming in the water, without us protecting her neck all the time. Dr. P said it is definitely doable and she will consider it if the time comes.

Speaking of yesterday's appointment, Dr. P said Rissa is doing so well that she doesn't need to see her for the next six months!! Isn't that awesome? So incredible!

I have been taking care of my friend's son and it is going really well. Both Rissa and I enjoy having him to play with during the day. Rissa has really handled it all very well, showing very little jealousy. She loves helping me with him and I really think this was a good move for her.

We are hoping to enroll her in school by the end of the month. We are so excited to move on to this next step. Rissa is so ready to meet new friends. We think she will do so well!

I thought I would end this post by showing you a few fun pictures of Rissa in her old infant car seat, then and now.

Then...

And now!


Hear no evil...


See no evil...

Speak no evil!


Big girl!


video

6 comments:

Colleen said...

She has definitely grown out of her car seat! What a big girl! I'm so excited that you are starting a new chapter in your lives. It probably still seems surreal that she doesn't need the trach anymore.

Anonymous said...

OMG I can't believe she is going to go to school!! That is awesome.
She will enjoy being around new people - her size people!! Love Aunt Teri and Uncle Norm

ANewKindOfPerfect said...

I cannot believe how amazing she is doing! I am SO happy for you all! I hope her stoma starts to close up soon on it's own, and am glad to hear that the Dr will do it surgically BEFORE summer if need be. :) I love the video, Rissa has such a fun dad!

Nana and PaPa said...

Marissa seems to handle most of her challenges with flying colors and has proven that out again! She is awesome and amazing! School....really?? Wow! How cool is that?!
Love,
Nana & PaPa

Michelle said...

Such a journey, no? Do you still feel like you are in shock factor? I think that every time I look at Lillian's neck and see that tiny scar. That tiny scar that makes such an enormous impact. I am more happy for you than words can describe. *tears*

DevonLeah said...

She looks so big and healthy and TRACH FREE! It took a while for me to believe it when Camden was decanned. WOW...

As for the hole...his is still, 4 mths later, pretty open and does still leak. I dont put anything over it, never have. tried a band aid the first few days, but it either fell off or he yank it off.