Monday, February 22, 2010

BIg Gulps

Swallowing is one of those skills we take for granted, until it's lost and you realize how many precise functions make up this precious ability.

After her initial injury,  Abbie had a trach  placed in part because she did not have a good enough swallow to protect her lungs.  With her trach tube in place, we began a therapy called Vital Stim, which strengthens and trains swallowing.  She was progressing nicely, even though she did not find it a pleasant experience.

Then, we decannulated her.  Getting rid of that tube was a huge victory, but the open stoma in her throat meant that she couldn't build up adequate pressure in her throat to produce good swallows.  It seemed pointless to continue Vital Stim until her stoma closed.  At the time I made that decision, I didn't know it would be a four year delay!

Abbie went for a Vital Stim evaluation last Friday, as part of the process to request authorization for a round of therapy.  What a difference these years have made!  Although we have not worked on oral eating while we've been so busy with other things, the progress was obvious.

Abbie will now swallow on command.  This is huge because it allows us to involve her in the therapy -- she is not just surviving an hour with electrodes on her throat.  She has begun to involve her lips in the movement, which is another big step.  Most of all, we have been able to carry that hour of therapy into the days after, as I ask Abbie to practice her swallowing.  She is rightfully proud of herself, and enjoys our enthusiastic responses to her efforts.

I am hoping that our request for this therapy will be approved.  It's not so much that I'm anxious to transition Abbie to oral eating.  That is definitely a "someday" goal, but for now I would be thrilled to strengthen her swallowing enough to prevent saliva from seeping down her throat, which then leads to frequent suctioning.  Our life would be so different if that darn suction machine did not have to be such an ever-present companion!

Panda is becoming Abbie's little buddy.  After a nice walk to the beach yesterday, his favorite place to lazily relax was right next to her, where she could put her hands in his coat and feel him breathing.  What a pair!

Our current schedule, which has me at school the whole time Abbie is there, and then trying to fit the rest our life in to the other hours of the day is getting challenging.  (Read:  I am exhausted!)  I am so happy to be there, and so thankful to be allowed to help, but we are searching for ways to find a balance so we all don't crash and burn.  Right now, this is our biggest prayer request:  stamina, discernment, and balance.

Two little personal notes:  Thinking of you Cheshires - especially the kittens...our Father is ever near the broken-hearted.

And, R.I.P Oreo Sutton --- thinking of you guys as well.

May God bless you today!

2 comments:

Walt & Katie said...

Princess Abbie,
We pray your swallowing will become easier each & every day!! Give your mom a big hug & tell her we're praying 4 His strength to be hers & 4 deep sleep, when possible!
Thank u 4 praying 4 us as we've entrusted our lil' preborn kitten unto Jesus' loving arms & are tearfully, but peacefully letting go of our hopes & dreams here on earth...& looking upward to all He has waiting 4 us in heaven.
We can hardly wait to skip on the streets of gold w/you, sweet girl!!
xoxooxoxo,
Auntie K & kittens
Psalm 30:5
Love u, SS!! Thank u 4 sharing my tears & my hopes...

Walt & Katie said...

Hi Abbie,
How are you? I'm fine God bless you.
I will be praying for you.
Love,
Christa Joy

p.s.I love you!
How's your new puppy? and how's your
mom?