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

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

Monday, December 21, 2009

Weekly Bella Update 122109

Hello everyone!

Ah, the simple things.

Bella has a cold.

It's almost cute.

It's n-o-r-m-a-l.

I keep thinking back to how easy we thought caring for Bella would be (when she was still in the womb), and how our real concern was how to handle Ali. Man, that seems like child's play compared to the hand we were dealt. Talk about a slice of humble pie.

Through the sniffles, and stuffy nose, through the blisters and bloodied closthes, Bella continues to smile and drool the moment after anyone makes eye contact with her. It's as if she forgets about her Self in the presence of another, and instead focuses all of her consciousness "over there" with the other person, rather than on her Self. How easy it would be for her to be Self centered, given her condition. Yet, she abandons Self and spends her time out in the world, full of wonder, full of mystery.

How refreshing to behold.

Her toughest times right now are while falling asleep. She goes through a strange ritual every time she falls asleep where it looks like she is wrestling sleep itself, hoping to keep if from "getting all over her." The way she swats at her head, bends, wiggles, and writhes in bed, you'd think sleep was like molasses, slowly poured over her, eventually encasing her in suspended animation.

This might be viewed with baffled wonder or even a little humorous delight, except during the process, she manages to inflict some serious damage on her head, particularly her right ear. The ear, or area directly behind it, seems to constantly be in some stage of bleeding/bloody/blistering/breaking down. This morning, her entire right shoulder and upper arm were caked with dried blood. The all white "onesie" that she was wearing was soaked and stained like, well, something out of hollywood. It was rough on the eyes, to say the least.

Further complicating the issue is her sweet little head cold, which prevents her from falling asleep with her favorite "binky" in her mouth. Her mouth is currently working double time handling breathing, so sucking on a binky is out. This is a blessing in disguise, though, because while the binky has been helpful, it has also been a crutch that ends up waking us throughout the night when it accidentally slips out. We are hoping that the cold will cure her of the binky dependence at bed time. In the meantime, we have to hold her limbs like a seizure victim until she fully succumbs to sleep. I am partial to doing this in her crib, because often times, when I hold her in my arms/ on my chest till she falls asleep, she awakens when I try to put her down in her crib, and then the whole process starts anew anyhow.

She also likes to dig her right heel into her left knee, and her left toes under her right heel (not at the same time). we think this is because the knee and foot are healing and must itch. The rhythmic writhing that ensues, however, is causing the left knee to stay open despite the amount of bandaging. It's a pickle.

Onto other happier news, we started introducing baby food to Bella. That's been going slowly, but we have had a couple of successful feeds. You should see Ang, Ali and I go crazy when she lets me put the spoon in her mouth... Bella must think we are off our rockers with how excited we get! Ali can barely contain herself from helping out. She is the best big sister ever! The one catch with Bella is that her hand bandages are going to be orange for a few weeks (at least while we feed her carrots and sweet potatoes). Last night, she grabbed the spoon and all of its orange baby food and just smiled as it soaked into the tubifast and rolled gauze. It was a funny moment. I realized that I forgot how messy baby food is for quite a while! Again, these are the fun problems to have. These are the ones we've been through, and know that everything will be okay in the end.
We thank God for the fun problems.

Are your problems fun?

Bet you never put fun and problems together before, huh?

Maybe, this Christmas, those 'problems' with Uncle this or in-law that might be fun after all.

That is my Christmas wish for you.

Merry Christmas, and thanks for still being here, almost 7 months later.


The Ringgolds

Monday, December 14, 2009

The Grind


I love spending 2 and a half hours with my baby, except when those 2 and a half hours are from 2-4:30 in the morning. Such was the start to the week. Riding the caffeine wave long and hard today.

The Good:

Bella, Ali, mommy, and daddy rode "Small World" ride at Disneyland last night! It was Bella's first ride! Her eyes were HUGE! It was really cute. We had a really good time last night. Ali has been really good with her manners of late and was rewarded with a long overdo trip to D-Land.

Regional Center brought a Physical Therapist out on Thursday to do an eval on Bella to see if she is at-risk and eligible for services. Turns out she is. I put it in the good column, because now she will get weekly PT to help get her the physical development she needs and is avoiding due to her leg and G-Tube button.

Despite it all, Bella continues to smile, laugh, and be mostly joyful (especially when medicated).

The Bad:

Bella's foot. 'nuff said. The knee isn't much better. They go through cycles. We had quite a run where the foot was good, and it was just the knee giving us trouble. Now it's both. By the end of last week, the skin had sloughed off the foot completely and it looked pretty much the way it did the day she was born. That was frustrating. The skin just won't "stick" on the foot and knee - where it was missing at birth.

Bella is going through a period where our normal late night soothing techniques are no longer working. Having to hold your infant gently down in her crib while she tires herself out from screaming so she doesn't further injure herself is NOT FUN. Holding her in our arms is just more dangerous when she struggles and harder to protect limbs and head during her screaming fits. In addition to being freakishly big, she is freakishly STRONG as well, and when she writhes in our arms, the possibility of her skin shearing against our body is very scary.

Plus, when she spits her binky into her crib, it's easier to retrieve than when she spits it onto the ground. Never overlook the small stuff, right? :)

We are booked for Minneapolis Jan 6-8 to consult with Dr. Wagner at U of M. We will know a lot more about 2010 after that trip. Now, we just need to convince the new insurance company it is in their best interest if we decide it's in Bella's. Another battle for another day.

Sunday, December 6, 2009

Well, it's Sunday and Bella's foot is going into a tough phase.

We opened her bandages Tuesday and found the largest blister we've ever seen on her. (See video). Through it all, she never made a peep that anything was hurting her. So, we drained it and wrapped it and expected it to start to bother her right away. Well, it took a couple of days for the hood of the blister to start to break down, and now it's really bothering her. We're looking at probably 4 weeks of pain before it heals completely.

We had been very lucky in that for quite some time we didn't need to medicate Bella for dressing changes. Time to reintroduce our friend Mr. Tylenol. We are grateful that she is not allergic to pain meds as our EB hero Sam is. I can't imagine what she's gone through. She is so strong. YOU are an inspiration, Sam! We installed a mobile over Bella's changing counter as well, and she LOVES it. We only wind it up when she gets upset, and you just wouldn't believe (or maybe by now you would) how fast the music returns a smile to her face. We also keep "You are My Sunshine" and "The Belly Button Song" (we like to call her Belly) on hand to sing to her whenever the smile turns south. Thanks to Grandma for getting her hooked on "you are my Sunshine!" She LOVES it!

Also, the other day we lost 3 fingernail/toenails in one dressing change! That was kind of sad. Bella's nails are swiftly falling off her toes, and she's lost her right thumbnail, and the left pinky nail is on its way out. That's kind of a bummer. We didn't expect her to lose them so quickly! We weren't even sure if she would lose them or not. We were hoping that she would go through the BMT (Bone Marrow Transplant) soon enough to avoid any permanent loss of any part of her body. Oh well, losing fingernails is pale in comparison to losing Bella.

Anyhow, Bella also LOVES the Rudolph the Red Nosed Reindeer doll we have. She wrestles with it and is fascinated by his glowing nose. When you squeeze Rudolph's left ear, his nose lights up and he says a couple of different samples. Bella's eyes get all wide and bright. It's sooo cute.

Bella's grip strength is improving as well, which is very encouraging. We keep the mittens off when playing with her as much as possible so she can get used to using them. She loves her little purple maraca and can grip it with both hands and slam it into her torso, thereby actually "playing it." It's really cute! (See Video)

Lastly, enjoy the first Holiday picture of the girls!