Wednesday, July 6, 2011

week of progress

Here we are:  Mabel & Mommy
This girl has my heart; the one I am working so hard for.  She's working hard too, I have to admit.  She is busy learning and changing.  She is getting stronger and it is evident.  I love every move she makes.  Like in therapy on Tuesday when she sat unassisted for 30 seconds. 
That was monumental.  Huge.  Amazing.
She reached for toys and because her little vest gives her some extra input, she's able to look up and smile at me while coordinating her movements.  That makes everything worth it.

We met with a dietitian this morning to talk about what we could do to get her some more calories and to focus on her nutrition.  She has such poor sucking coordination that when we feed her it takes 30 minutes for a 4 oz. bottle.  Half of the bottle rolls out of the side of her mouth and often the other half is vomited up at the end of the feeding because she has reached her threshold for food.  It's a battle to get her fed and an even greater battle to poop afterwards. 

After hearing this, the sweet dietitian [who I am sure will become a friend, like our wonderful therapists, nurses and even dr's have...] said that she believes Mabel probably has some sort of milk intolerance.  We are going to try to switch formulas to one that is neither soy or milk based.  If this is helpful (and we pray it is), we will see her go longer between feedings and gain more weight.  We are also going to start meeting with a speech therapist who will help us in taming her tongue and coordinating her sucking, eating, etc. 

So as you see, our days are always full.  Phone calls, meetings, therapy, appointments.  It is always something.  Tomorrow we have a repeat EEG to test for Mabel's seizure activity.  We will also meet with our neurologist, Dr. K.  We haven't seen her in a couple of months and I'm always glad to meet with her.  She's a wonderful Dr. and I am thankful for the role she has played in Mabel's care thus far.  Our geneticist was completely in awe of how many tests she has already ran and how proactive she has been for Mabel.  We are ahead of the game in Mabel's diagnosis because of Dr. K.  I am so grateful!

It has been a wonderful week of progress.  I have possibly fallen back into the role of  'caretaker' more than mother.  I am going through the motions and counting down the days until we get a phone call that could potentially change our lives forever.  However, our lives were changed for the better almost one year ago when we brought this lady into the world and were able to smell her skin, see her smile and love her with the deepest part of who we are.  She is everything I have ever wanted.
She is my sunshine girl.
Mabel's Able 5K Race:   Saturday, August 13th 
9:00 AM 
Registration at 8:00 AM at the Clinton YMCA
Fee:  $10.00
If you cannot attend, please pray for our day and consider sponsoring a runner, donating to the cause or simply showing up for support. 
All proceeds will go to Rare Disorders or if we get a diagnosis for Mabel, her cause. 

Thanks for your support thus far.  We are incredibly blessed and humbled!

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