Tuesday, March 29, 2011

4 month update

Not too much here....CeCe had her 4 month pedi checkup and is doing great! She's gained about a pound and a half since her last hospital stay and has grown almost 2 inches since January....what a beast! The doctor said he really liked seeing all her leg/ankle/hip/toes movement (we can't hear that enough) and really not too much else to report. It was such a relief not to have the appointment end with an emergency (or soon to be scheduled) hospital visit.

Her doctor also mentioned for the first time that he is on the national SB association board ( you think you know someone!) and he wondered if Brian and I might be interested in starting a Carolinas chapter...it's definitely something we've talked about before and are now considering again with his help. Anyone out there know anything about taking on a huge endeavor like this??? We'd really like to help folks going forward with a place to connect and find answers. Something to think about...

More soon!

Tuesday, March 22, 2011

Nothing to report!

How's that for a headline! CeCe is doing very well (everybody, knock on wood!). The last of her surgery strips came off today, just in time for her first pictures...ok, ok...her first PROFESSIONAL pictures :)! While her stridor is still there on occasion, a little reminder of where she's been, it's much quieter.

She starts PT at the house tomorrow and we are looking forward to having them come every week so she can keep hitting her milestones. She struggles to hold her head up but we can see progress there already. Oh yeah, and she GIGGLED this week More of and "henh hehn" than a "HAHA"...but music to our ears nonetheless.

Don't tell Brian, but he think he is enjoying his Mr. Mom status. He was very excited to have a playdate at the park yesterday and is looking forward to another one on Thursday. He came home talking about recipes and hair salons! Ok, no he didn't, but I think he really did enjoy the time he spent with another family. Thanks, Tiff!

Check out her new pic to the right....Gooooo CeCeBe!

Monday, March 14, 2011

Cautiously Optimistic...

Today is a day to give both science and religion a pat on the back! They both came together today and gave CeCe a good, yet cautious, report. And, we'll take that..thank you very much.

Brian reported back from the ENT appointment today (I'm back to work) that the ENT was "very pleased" and "optimistic" about CeCe's progress. The doc scoped her again and he (and Brian) were able to see much better function/movement in her vocal cords then when he scoped her right after her larynx surgery on February 8th. He believes she will return to full capacity and function, but is not there yet. What does that mean? NO TRACH-TALK TODAY!!! He did stress that we are not out of the woods, but that we are on the right path. We still have to be mindful of her eating and swallowing habits as these are the first signs that things maybe going downhill. He (like neuro) can't explain why the stridor is back...just one of those things. By the way, he also does not want to see her back for 3 W-H-O-L-E months! And, neither do we!!! We pray she doesn't have symptoms that push us there more quickly.

I was expressing my frustration for all CeCe's been through to a friend at church who's a nurse this past Sunday...she said something that will stick with me....she said, "the docs try things that have worked on other people's kids and hope they will work for CeCe." And that, my friends, is kind of the definition of "practicing medicine", yeah? It's all about perspective. Thanks, Sallie.

On a sidenote (you know I always have a side note!): Being back to work hasn't been as hard as I thought it would be...Brian has made this transition so much easier just by being the person he is. I treasure all the time we had together as a family these last 3-4 months...but I know our girls are in good, strong, loving hands. But, I miss you guys like crazy!!!

Tuesday, March 8, 2011

We've had a bit of a scare.

I didn't post anything on Saturday about this, but we heard CeCe's stridor return a bit that night, and it scared the heck out of us. In addition, her incision started to look a little bit different and we were worried it was the beginning of an infection.

Brian took her to the neuro today and he said the incision looked that way becasue the surgical steri strips were irritating it...really no big deal.

About the stridor...he did say that it "may come and go" and does not neccessarily mean the Chiari is symptomatic (i.e. that we are back where we started) but we do have to be on alert for all of the same things we were before to make sure we don't miss any signs or symptoms. He said that kids can have a stridor until they outgrow it at 2-3 years of age but that we still can't rule out a trachesotomy and/or feeding tube. Just like everything else wth SB...wait...and...see.

She has a follow-up appointment with her ENT on Monday and he may decide to scope her again then. She hates it of course, but she is so tolerent each and every time. Let's all hope he says she's rocking it too!

Saturday, March 5, 2011

Feeling better!

CeCe is feeling so much better today than just a few days ago. She is moving her neck quite a bit by herself from side to side and lets us move her almost to her full range of motion. Her incision is healing nicely and doesn't look as "angry" as it once did. She seems contented, smiley and back to her delightful self...SUCH a change from a week ago.

Our friend, Jennifer, gave her the bib in the new pic and we just love it...thanks, girl!

Her next appointment is Tuesday with neuro for her surgical follow-up...please keep her in your prayers!

Wednesday, March 2, 2011

Headed Home!

We are just about out of here! Everyone came by and signed off that needs to and we are just about to load the car. CeCe is smiling away and ready to be home. What else can I say?!?

On the mend...

CeCe is finally getting some rest. She had a great night with no interruptions and went back to sleep after her breakfast. Her BP is down (still a little high) and her heartrate is really stong. She only has the smallest stridor when she's REALLY worked up.

The rounding peds docs just left and have cleared her from their standpoint to go home later today. BUT, they have to defer to neuro and we have to wait until they come by to give us the full thumbs up. I keep peeking out into the hallway to see if they are on the floor...I am going to ambush them as soon as they step off the elevator!

Hopefully I will update from home later today!

Tuesday, March 1, 2011

Houston, We have a smile!

This has been long awaited by us for her to show us she's on the mend....waiting on the rounds docs to come by. She had an ok night...still not sleeping very well and they had to give her a new IV line at 2am...you probably heard her whereever you were at that time!