Update, January 2006

Home | Random Maddie Update - April 10, 2014 | Boost Camp 2012 | Updates | Neuromuscular Reeducation (ABM) | Conductive Education Journals | Fundraisers for Madison | Maddie and the Firemen | Special Needs Awareness | How It All Began... | Maddie at Therapy | Madison and her Big Sister, Savannah | More information on Hypotonia | Contact Us

The last few months have been very productive and exciting.  Slowly but surely, Madison is making great progress!
 



Maddie is Moving!
Maddie is now 18 months old.  I can't believe how fast this little baby is growing up!  Madison's latest, biggest milestone is that she can now pull herself into sitting all by herself!  The first time she did this was on December 9th, while Grandma was visiting.  Not a huge milestone for some, but for Madison, this was four months of hard work finally paying off.  The therapists have always told us that this is hugely important, but they never told us why...  (And I'm kind of glad they didn't.)  Statistically, babies who are not able to do this by their second birthday will never be able to walk unassisted.  I didn't know that we needed to be concerned about Madison never walking, as most people told us that her walking someday, however late, was a given.  I guess it's good to not be fully informed sometimes...
 
She was fitted for "DAFO's" this month, which is a special type of shoe, or brace, that will assist her while she is standing.  She is standing a lot more now (when assisted into that position and then leaning up against something), but her legs are horribly hyperextended.  If she learned to stand in that position, her legs could become damaged.  The DAFOs will train her legs into the right position and make it so standing is not painful for her.  She also stands on the insides of her feet, and these will help with that also.  Savannah got to pick out the color and decoration of Maddie's braces, so big sister is quite proud of them!
 
Madison is also moving around a lot more these days.  Though not technically crawling, she has developed her own way to get from place to place, and it is quite clever.  It's a combo scooch-roll-propel-sit thing that's actually very cute!  If she wants something, she can definitely make herself go get it.  It takes her a lot of time and concentration, but she doesn't seem to be too frustrated by that.  We have finally had to start thinking about child-proofing for this little girl!
 
Madison is also making a lot more noise lately.  Once she started moving more and getting herself into sitting, the babble floodgates opened and she is finally really making some good sounds.  Her first real word was "bubble" on November 4th.  Kind of random, but she really likes bubbles!  She is now consistently saying "mama" (yay for me!) and has been witnessed to say "Grandma" (for Grandma Phyllis) and "Barbwa" (for Grandma Barbara).  She is understanding baby signs a lot, but still does not have the fine motor skills to make the signs herself.
 
Things we have learned:
Because Madison does not have a technical "diagnosis", it has been hard understanding all of this.  We have learned that she could still receive a diagnosis, but chances are the doctors will wait until she is about three to see what type of progress she has made.  We thought all possible diagnosis had been exhausted, but in some conditions, only time can tell.  From what we have learned, I do believe that she will eventually be diagnosed as having a mild form of Ataxic Cerebral Palsy.  From everything I read about it, it fits Madison to a tee.  Some therapists have also alluded to this diagnosis.  It's not that we want our child to have a certain type of label, and certainly not that one, but a diagnosis would just give us some type of closure to this open-ended mystery in Madison's life;  we'd have a better idea of what we are dealing with.  Also, to continue to receive the services that she is currently receiving after the age of three, she will have to have more of a solid diagnosis.  We are meeting with the neurologist and geneticist again in February, and they might be able to give us more information about this then. 
 
 

For a brief description of Ataxic Cerebral Palsy, click here.

Maddie's first trip to Yosemite
yosemite.jpg
December 2005, with mom, dad, and big sister Savannah


Look at that smile!
maddiewagon.jpg
Christmas Day 2005, with Daddy's favorite outfit on...

Look at my fancy new shoes!
standing.jpg
December 2005

dafos.jpg
The DAFOs up-close

Help me big sister!
flopsy.jpg
Madison can still be quite flopsy when she gets tired!

scan0001jpeg.jpg




Go, Maddie, Go!