Thursday, December 31, 2009

Happy New Year!



Bella's first gift from Santa!


As we all look back on 2009, we can truly see a wide array of events that have occurred to all of us, either individually, as a community, as a nation, or as the planet. As we consider each event, we tend to assign a value to the event i.e. it was "good" or "bad". The news outlets are chock full of articles about "the best" and "the worst... of 2009." I guess some of those valuations could be "objective," (i.e. the stock market went up or down, Bella was born, etc.) or "subjective" (i.e. Bella's condition is a blessing / curse). I am grateful that we can assign those valuations ourselves.

I have seen so many miracles this year.
I have seen trials and tribulations, too.
But what I am most grateful for,
May be different from you.

You may or may not believe
that it's all up to you
either way, you're right
we know this is true.

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

I saw birth and death
happiness, suffering
I saw some dreams come true
while others were vanishing

How do we make sense
out of all of this mess?
What kind kind of compass
Do we use to progress?

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

What does the new year bring
more heartache and pain?
or more promise and hope
more loss or more gain?

Remember the three F's
Friends, Family and Faith
Inside of each you will find
just what you need

For when you are down
and the world's knocked you around
just reach out a hand
and believe in the sound

of the hand reaching back
it will always be there
in one form or another
to help, love, and care

but don't be surprised
if it's not who you think
that comes to your aid
when life makes you blink

just be grateful a hand
is in front of you now
take it with humility
and you will find how

to make it another day
to make it another way
to make it and say
Thank you
Namaste

We each have a choice
each day that we live
to see the good or the bad
to take or to give

We each have a choice
each day we're alive
to truly live
or merely survive

****

Well, that just popped out. Sorry for the diversion. When it hits, just gotta flow with it.
Man, I am so grateful I've learned to let God flow whenever God knocks. HAHAHA... wait a minute. Let me rephrase that.

I am so grateful that sometimes I have the presence to listen WHEN God knocks.

Okay... now for the actual update already! Geeeeez....

We had our 7 month appointment with the Early Development Assessment Center on Tuesday. It was over 3 hours long, but it was totally awesome. We met with an RN, PT, SLT, SW, RD, and MD. (Registered Nurse, Physical Therapist, Speech and Language Therapist, Social Worker, Registered Dietician, and Neonatologist). They did a PT/OT/SLT assessment and here's where Bella is at:

Cognitive Skills = 6 months
Receptive Language Skills = 9 months
Expressive Language Skills = 8 months
Gross Motor Skills = 4 months, 10 days
Fine Motor Skills = 4 months, 10 days

Weight = 20 lbs
Height = 27"

The dietician was thrilled with where Bella has come since getting her G-Tube. Bella is 2% above the ideal weight for her height at her age. Remember those 90 minute wrestling matches - I mean bottle feeds - and only 20-24 ounces a day? well, she's been getting 30-36 ounces a day since early October and it brought her from 50th percentile to 75th percentile in weight for her age. The catch is that she is 95th percentile in height, so she needs to have more weight on HER than on a smaller framed kid the same age to be proportional. Factor in the constant need for extra calories for wound healing and the fact that if we do the BMT, we want her as healthy as possible going in, the dietician told us WE ARE RIGHT ON TRACK!!!

That was possibly the best news of the day. I am reminded of Dr. Eichenfield's quote from when we met with him in SD in October...

"The KEY to EB is nutrition, and the key to nutrition is the G-Tube"

Having to endure certain people's repeated questioning of the G-Tube use has frankly been tiring on us, so this validation was well needed and, as it turns out, well deserved.

The other results didn't really surprise us, either. The one stat that looks lower than it probably is is cognitive. The SLT explained that because of Bella's deficiency in fine motor skills, the assessment for cognitive is skewed because what they observe to measure cognitive development relies on use of fine motor skills.

We did learn that Bella has an overall weakness across her entire left side. We didn't realize this. Between the left leg and the placement of the G-Tube (which is placed to the left of midline in the abdomen), her left side has been injured and/or healing since day one (literally).

The cool thing was the PT gave us very specific ideas for exercises to address the global deficits as well as the hemispheric deficits. When the Regional Center PT came out, she was really intimidated by Bella's condition and really didn't offer too much. The PT at CHOC was at the other end of the spectrum, where she was thinking about what Bella could do instead of what she couldn't do.

Other news:



Ali pumping iron with mommy's new hand weights

Christmas was a blast, but perhaps the real holiday miracle was the following Sunday. We drove to my brother's in Phoenix for their baby's baptism. At the party afterward, we watched as his little girl, Liesel, and Bella played together while Paul and I held them. They were both born in May. Watch the video and cry, because this was a LOOOOOOOOONG time coming. My brother and I have had a tenuous relationship over the years (that was very diplomatically put), and for our families to come together like they did on Sunday, it was our Christmas Miracle. It was the type of thing that for many years, just seemed impossible. Cheers to you Paul and Heike, we love you, and Liesel is an angel we are honored to know and help nurture over the many years to come.



Christmas is really about celebrating new life, and with our two little girls sharing their first holiday together, the truest spirit of Christmas was fulfilled on that couch.

Now, what about 2010?

How do YOU say it will go?

After all, it's really up to YOU...

...and God.

Here's how to balance THAT all out:

Pray like it's all up to God, but work like it's all up to you.

YOU are in the work business, GOD is in the results business.

May 2010 bring you everything your heart desires,

The Ringgolds

5 comments:

  1. Your family has taught me a lot in 2009...and I am sure will continue to inspire me in 2010.
    That video is precious...how lovely for your family.
    Happy New Year!

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  2. Sheila Ringgold MarchettaJanuary 1, 2010 at 11:51 AM

    What a privilidge to have been with you all to witness this magical moment with the two babies, and to be together for Liesel's wonderful Christening day celebrations!I will cherish these memories.

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  3. sheila Ringgold MarchettaJanuary 1, 2010 at 11:55 AM

    The poem is beautiful and right on!
    Hoping for all the best in the new year.

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  4. Hi Ringgolds!

    Happy New Year, so glad Bella is doing well.

    Who on earth would question you about the G-tube?? Is that coming from the EB community, doctors... or from people who have no idea what they are talking about? I can't believe anyone would question that, especially if it came from outside the Eb world.

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  5. I watched and laughed out loud with delight and happiness. A true Christmas miracle

    xoxoxo

    ReplyDelete