Thursday, October 18, 2012

Shake rattle and roll

Hers doesn't look exactly like this, but it's similar.Hers is longer and the tubes come out around each side at the bottom.
Lillian got her first run with the "vest" today.  Essentially, it looks like a life vest that inflates on her body and shakes at about 700 compressions per minute.  OH MY WORD.  I was even a little stunned by the power.  She sat in my lap while it ran...( it makes me wonder if all that vibration could vibrate some of my chub Made me think of that old workout machine that you strapped around your hips and it jiggled you...whoopsy, rabbit trail...anywho..She did not like it at first, but then...she got a real giggle out of her voice making the shaky noise.  When she laughed it was just a hoot.  We all just laughed and laughed.  The vest itself is too big for her, not sure why they sent such a big one, but they will ship us a smaller one by MOnday.  She will have to wear it 20 minutes twice a day, more if she gets sick.  Of course it takes up some space, and it heavy.   Not sure where it's home base is going to be.  This house just isn't set up well for Lillian's needs.  Should be an interesting new experience.  I think she'll tolerate it ok.

So today, her OT talked to me about their concern that Lillan may be displaying some sensory issues.  I know its not news that is the end of the world...but yet again more problems for my brain to comprehend and deal with.  Down right depressing at times.  It's like when they told me stuff was wrong with her brain. I kinda thought there might be, but to know for a fact there really are things up there that aren't what they are supposed to's just stressful to deal.  I'm not sure I'm even describing it well in this paragraph. 

I took her to the doctor today with concern that she might have pneumonia, but they are saying still sinus stuff.  I'm thinking sinus plus viral.  Her cough is not her normal sinus cough.  It is very wet and sounds like she's coughing up a lung.  (ironically she just started hacking as I typed this) or maybe it just flares up her asthma so bad that it makes it seems a lot worse, I just don't know. 

To be totally transparent friends, recently I just feel like I'm being swallowed up.  I am fighting it almost daily.  I need your prayers and so does my precious girl.  In ways, her life is so much easier that it used to be and I'm so grateful.  I even told myself that I'm grateful for sensory issues.  I'm grateful for her life just as it is, it's just tough on my heart...tough on my heart. 


  1. I know she has a syndrome, could sensory issues possibly be from that? Its always hard when our kids have to work harder for the most basic of things!

  2. hang in there neighbor/friend God is in full control.

  3. So sorry! If it makes you feel any better....I'm feeling very similiar to how you are. Hang in there friend! Love, Hugs and Prayers!