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!

A Valentine’s Day Surprise

For a sweetheart like Abbie, we wanted to do something very special on Valentine’s Day.  So, we got Kung Fu Panda.  Nope, not the hilarious movie, but a real, live, snuggly one.

Now, our version does not live on bamboo, but rather dog food, treats and lots of love.  Meet the newest member of our family:

 
Our little Panda boy, who turned one the day after he came to us, is a Havanese.  Hava-who??  That’s what I asked when we first found this breed during an online search for breeders on Oahu raising hypoallergenic, non-shedding dogs.  
Originating in Cuba, the the Havanese were the playmates of the children of the royal court in Havana.  As I read the website (www.havanesehawaii.com), I thought, “this is too good to be true!”  
“Extremely intelligent, loyal, very loving, playful and always eager to please.  Nonshedding, hypoallergenic and odorless.  A very people-oriented dog, they will follow their people around the house but are not overly possessive of them, showing no jealousy or aggression to other dogs, pets or humans”
Well, it is all true.  He just could not be a better dog.  When I introduced him to Abbie, she was laying on the floor.  He got on his tummy and scooted his head onto her lap, splayed all his legs out to lay completely flat, and then held very, very still.  He knew.  I don’t have any pictures of them together yet, because I have been facilitating their time together. 
His hair feels like angora, so Abbie really enjoys petting him.  He doesn’t get skittish when she coughs, or even when she’s suctioned.  The first morning he was here, every time Abbie coughed in the other room he would stop what he was doing and alert, making sure that I heard what was going on.
Having Panda come to our home, all grown up and ready to just meld right into our family has been a real answer to prayer.  We’ve wanted to get a dog for Abbie for a long time, but knew, given the demands of our daily life, that it would have to be exactly the right dog.  None of this would have been possible without Pam and Richard, the breeders.  Here they are with Matt, RJ and Panda. 
 
   
RJ wanted to surprise Matt as well as Abbie, so Matt thought it was just a boring Sunday afternoon until a dog with a big red bow showed up. 
That moment was a lot of fun!  We feel very blessed to have him.
Abbie is back in school this week, and doing well.  She’s so excited that she’s been wide awake when I go to her at 5am.  We had a great Speech Therapy session at school, where the therapists identified some new switches to use, and new places to use them.  I am excited for Abbie, as new doors open for her — and, as always, incredibly proud of her.
May I ask you to pray for her body, as we attempt to get her weight-bearing again after her injury and illness?  Please pray for soft muscle tone, proper leg rotation, and comfort in standing.
May God bless you today!

What We Always Knew


I suppose it’s not rare to have adolescent children look askance at their mothers every now and then; I often supply my sons with good reason.  Last night was a great example.  What should a 12-year-old think when Mom is just sitting quietly on the couch, working on the computer, when suddenly she is gasping, fluttering her hands beneath her watering eyes, and unable to speak in sentences?
My precious boys, though, do give me the benefit of the doubt.  They at least ask “What’s up?” instead of just collecting one more bit of evidence for the “Mom is Crazy” file.  During this most recent episode, I just pulled Matt over to the computer, and had him begin reading this article:
I hope you will go read it, especially if you are a brain-injury family.  Finally, FINALLY, there is a study to affirm what we have always known and said about our loved ones.  They are in there!
The centerpoint of the article is a study using functional Magnetic Resonance Imaging (fMRI) with patients classified as “vegetative.”  What they found is “Human minds stripped of every other power can still control one last organ—the brain.”  
When they asked the patient to imagine doing certain acitivities, the appropriate area of the brain lit up, even if no outwardly-observable movement was created.  The researchers were able to elicit answers to questions by asking the patients to think about playing tennis for “yes” and navigating through their town for “no” (since these thoughts light up different parts of the brain.)  
The article speaks to “the mind using the brain as a communication device.”  In other words, the idea that “Abbie” is not her injured brain, but rather the mind, soul and spirit that use that brain, has been affirmed.
Also affirmed is that our loved ones’ awareness and understanding cannot be measured by their outward actions or reactions.  This should necessarily shift prevailing assumptions about brain injury survivors, their worth, dignity, and potential.  The article called the patients “buried alive” inside paralyzed bodies.  Can you imagine anything more scary or intolerable?  Families have always known this, and thus have refused to give in, give up, or give out.  If you were buried alive, wouldn’t you pray for someone to love you enough to keep digging?
I am also more hopeful that someday there will be technology allowing brain-injury survivors to communicate by using the only body part they can still control – the brain.
Hope abounds, and joy is ever-present.  Abbie is overcoming a head cold and we look forward to being back in school next week.  She has been working hard on memorizing Bible verses, and learning all the states and capitals.
What an amazing journey.  God is good…..all the time!