Saturday, November 10, 2012

Happy 237th birthday Marines!

I attended my first annual Marine Corps birthday ball with my husband in 2003. After a while, it can start to feel like a huge chore to prepare for. Every year I have to shop for a new dress, not because I want a new dress, but because none of the five that are hanging in my closet are my size this year. The new dress will need to be tailored because I’m not a 6 foot tall supermodel. Of course my nails have to be manicured, and I like to try to color the gray out of my hair. My mascara always seems to be dried out, and that’s just not a good look, so I’ll need to remember to hit the cosmetics counter at some point. I will need to find a sitter for the kids and draft a plan for the night to include meal instructions, bedtime routines, and tantrum aversion techniques. It always breaks my heart to see my babies cry as mom and dad leave the house and I can’t relax and enjoy the evening until I know they’re happy and tucked in to bed, so I text back and forth with the babysitter though the evening. I don’t always have a sitter that I can call on, though. I’ve had my mom fly in to babysit (thanks mom!) because we hadn’t yet settled in enough at our new assignment to know someone that I would trust to leave my children with. I’ve been to birthday balls while pregnant, and I’ve had to excuse myself to nurse a baby who is sleeping in a near-by hotel room. We’ve traveled hundreds of miles for “destination balls” in casinos, which is really fun when you’re young and have no kids, but not so much when you’ve got to cram your post-pregnancy-body in to the tight space between the car seats of your 2 year old and three month old and attempt to entertain them for hours on end.

Needless to say, most years, by the time we’re off to the ball I’m feeling flustered after rushing out the door, and tired from all the preparation it took to get everything in to place. But then I get a good look at my handsome Marine. There’s nothing like a man in uniform, and this uniform, graced only by the Marines, is the best looking uniform there is. We sit down around a table amongst Marines in their “dress blues”, and I’m reminded what we’re there for. It makes me proud to support my husband and all Marines as they celebrate their rich culture and history. It’s inspiring to see the magnitude of respect they have for their Corps, and the way they embrace the core values and traditions that have been passed down from generation to generation.

I pulled out a gown from my closet this morning, tried it on, and cried a few tears of regret that we won’t make it to the ball this year. I hope that at least one more time, before my husband’s Marine Corps career comes to an end, I’ll have the honor of accompanying my Marine to the ball. There is nowhere else that I feel as proud as I do on the arm of my decorated Marine Officer.

Instead of wallowing tonight about missing our birthday ball, I’m giving thanks that I have my Marine home with me. I’m thankful that he’s here to kiss our kids goodnight and that when I go downstairs after putting them to bed we’ll sit together to watch T.V. He’ll be next to me in bed as the sun rises, when two in the bed becomes five. Tonight I’m thinking of the Marines who are away from home and their families who await their return. We are so fortunate to have them protecting our freedom so fiercely, and I'm praying for their safe return home. Happy 237th birthday Marines! 
 

Tuesday, October 23, 2012

This is who you hurt...

This is who you hurt when you use the word retard.




I'm not going to write an open letter to Ann Coulter about how wrong she is for this.  She knows it's wrong to degrade a whole group of people, deem them worthless, and disregard them completely as she litters the Internet with hateful slurs; but she doesn't care.  Even if my tiny little blog did somehow reach her, it wouldn't matter. 



I don't have a very long reach.  My readers are mostly my friends, my family, neighbors, and acquaintances.  Good people who, unlike Anne Coulter, have a moral compass.  Yes, good people.  People who wouldn't intentionally cause harm to another.  People who certainly wouldn't throw stones at someone who was defenseless.  But you see, sometimes we don't realize that, even without intention, we can cause harm to another.  We can leave scars.  We can perpetuate an awful injustice that so badly needs to stop. 

I may have a few times during my years casually used the word "retarded."  "I can't believe I have to pay this much for new tires on my car; they're made of rubber, that's so retarded."  I wasn't aiming to hurt anyone.  I would never actually call someone a "retard", or use the word to diminish someone.  I am more sensitive to the word now that I am the mother of a child with Down syndrome, and I'm a better person thanks to that.  "Retard" is a word that hurts.  It's a word that generalizes a whole group of people.  It's a word that carries forward a stigma that limits people who have shown themselves to be capable of much more than had once been expected from them. 

Our society has come up with  nasty names to disgrace just about every "group" of people there is, whether it be race, sexual orientation, social economic status, etc... there's a slur to label you with.  Most of them, however, are not socially accepted.  They're considered to be discriminatory.  Why then, do we accept the word "retard" to be thrown around like it is?  Carelessly spoken between friends in line at the coffee shop, plastered on friends' Facebook walls, Tweeted, spewed all over television, the movie theatres, and radio?  Why do we allow this word in our vocabulary?  Why do we allow it in our homes?  In the schools that our impressionable children attend?

Please don't casually use the word "retard" as slang.  It should not be socially acceptable in any context other than it's medical use.  If it's casual use is no longer accepted, than surely, when an awful excuse for a human, like Anne Coulter uses the word in the manner she did, she'd undoubtedly be knocked right off her platform for her offensive behavior.  Do you think if she used the N-word, she'd get away with it?  No way!  That would be totally unacceptable, the network she works for would step in and shut down the offensive behavior.  The R-word is just as hateful, and should not be tolerated in a public forum.

Anne Coulter, here is the person you are trampling over.  The person who you have declared is less than you.  Here she is as she basks in the glory of a beautiful fall day, rolling joyfully in the grass.  She is an innocent child who deserves to grow up in a world that values her life, where she'll be treated with decency, and allowed to blossom to her full potential without the threat of someone like you carelessly stepping on her.





Sunday, October 14, 2012

Daily Life


I talk about Down syndrome a lot, well especially in October, I have good reason for that, being that it’s Down syndrome awareness month.  You might think that my life is consumed with Down syndrome, but please, don’t be mistaken.  My life is not consumed with Down syndrome.  My life is consumed with my love for my family (well, there's the never-ending laundry and dishes too, I often feel like they consume me.)  We spend our days doing “normal” family stuff.

Like grocery shopping…
And soccer practice…


 
And pumpkin carving…
 
 
Sure, there are more Dr. appointments, but we make it fun…
 
 
... and we make up for it with some relaxing cuddles and cartoons time…
 
 
 
We go to the park where Danielle likes to eat the grass…
 
 
 
...and swing on the swings...
 
 

We share story time before bed…

 
We even venture out to art museums…
 
 
 
…and amusement parks…
 


We travel to far away places (California)...



 
And we’re spontaneous sometimes (whether mom likes it, or not)...
 
They were NOT supposed to get wet!

 
Life isn’t perfect.  It wasn’t perfect before Danielle and it isn’t perfect after. She, however, IS perfect, and life IS good, really good.

Friday, October 12, 2012

What I wish I had known then...

When Danielle was born I immediately recognized her almond shaped eyes, the slight bend at the top of her ears, and the “sandal gap” between her toes. I realized right away she had Down syndrome. I was worried. I was scared. I was paralyzed. Some of my concerns were rational, and some weren’t.  The pediatrician could tell me all about hypotonia, congenital heart defects, and cognitive delays, but not a single word about what daily life would be like with Down syndrome.  That's what I really needed to know.  What will my life be like?  I wish I had known that it would be this good. No diagnosis could determine WHO she would be, or how she would add so much VALUE and JOY to our lives.  These are things that no doctor or prenatal test can predict:
 
  • Her cuddles will be heavenly.  She will trust you with the weight of her whole body, and with complete abandon she will drift to sleep in your arms.  As she exhales in to slumber it will feel like angels breath on your skin.  You will be completely and helplessly enveloped in the love you have for your child.

 
  • Her siblings will cherish her.  The sound of the giggles they will share will reach in to your soul.  It will heal wounds that have been there too long. 

 
  • She will strengthen your faith and your values.

 
  • She will be the easiest of your three children. 


  • She'll be joyful.  She'll be patient and forgiving.  She will adore her family.  She will be fill to the brim with so many things that are good. 
 
 
  • Daily life won’t change much.

 
  • She will be resilient.


  • She will be adorable.  Perfect strangers will stop to ogle over her.

 
  • She will teach you more about life than you could ever hope to teach her, or any of your children, for that matter.

 
  • Her entry in to your world will be a life changing experience, a gift that not everyone is lucky enough to have been given.  She'll strengthen your character and give you more purpose in your life.  She'll inspire you to be an advocate.  With this child, is an opportunity to rise to the occasion, but you won't have to reach for the stars, because they have been given to you in her.

     



Tuesday, October 2, 2012

Myth Buster


MYTH: Down Syndrome is a rare disorder.

FACT: Down syndrome is not rare. About 1 in every 700 babies is born with Down syndrome and over 6000 babies are born with Down syndrome in the US each year. Currently, it is estimated that there are over 350,000 individuals with Down syndrome in the United States.
 
We totally hit the jack pot!


MYTH: Most children with Down syndrome are born to older parents.

FACT: Over 80% of babies with Down syndrome are born to women under the age of 35, and the average age of a mother of an infant with Down syndrome is 28 years.

I was 29.

MYTH: People with Down syndrome have severe cognitive delays.

FACT: All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. 


MYTH: Children with Down syndrome must be placed in separate special education programs.

FACT: Most children with Down syndrome in the United States are “mainstreamed” into regular schools. They attend regular classes for some subjects and attend special classes for other subjects. Each school system is required to provide the best learning environment possible for all special needs children.



I love this message from IDSC for Life.

MYTH: People with Down syndrome are always happy.
 
FACT: People with Down syndrome experience a full range of emotions such as sadness, anger and happiness, just like everyone else.

My girl IS pretty happy, though.  I tell her all the time that God filled her chock full of joy.

MYTH: Individuals with Down syndrome die young.

FACT: The average life expectancy of an individual with Down syndrome is now 50 years of age.

Life expectancy has continued to improve dramatically over the years and will continue to improve with medical science advances.

Myths and Facts taken directly from About.com

Monday, October 1, 2012

31 for 21

"Mommy, I want to take Danielle to school for show and tell.  I want to share her with everyone."- My oldest daughter. 

Me too, baby girl... me too.  I want to share her with the whole world.  I want to tell people that regardless of what they may or may not know about Down Syndrome, that she is an amazing gift.  I want to tell them that her life is valuable.  I want to tell them that she is capable.  I want to tell them that she makes me proud every day.  I want them to know that I have hopes and dreams for her and that I believe whole-heartedly in her potential.  Most of all, I want to tell people that Down Syndrome is not who she is.  She does not suffer from Down Syndrome.  She is not defined by Down Syndrome.  She's a daughter, a sister, a niece, a cousin, a grand daughter.  She is a sweet one year old girl.  She is an individual.  She has a blossoming personality that is all her own, and just like anyone else, she deserves to be loved.  She deserves to be respected as a member of our society.  She deserves to be recognized by her teachers as a student with potential.  

Today, October 1st, kicks off Down Syndrome Awareness month, and I'm participating in 31 for 21.  It's a blog challenge.  31 days of October, 3 copies of the 21st chromosome.  31 for 21.  Raising awareness.

Danielle was born in September last year.  I was pulling my head out from the mud just in time for Down Syndrome awareness month, Buddy Walk, and 31 for 21.  I was just learning about Down Syndrome, and lucky for me, the Internet was flooded with information about the genetic condition.  It wasn't anything like the outdated pamphlet that was given to me at the NICU though.  It was the best information available.  Straight from the real experts, the parents, siblings and friends of people with Down Syndrome.  I learned about people first language, debunked myths and stigmas that I had associated with Down Syndrome, and noted the real facts.  I related to more personal posts about things like faith, and was privileged to experience what daily life was like in a family with a child of Down Syndrome.  I believe this flood of information was pivotal for me in the embrace of my child's diagnosis.  I was inspired to be an advocate for my daughter and others who are rocking their 47 chromosomes.

I don't know if I'll be able to post every day, but I'll give it a try!  I would really like for my friends and family to follow my blog this month.  It's important to me.  Read the posts, please! 

 
Thank you all for the overwhelming support in our fundraising effort.  Please consider joining our Buddy Walk team, if you haven't already.
 
Have you seen Danielle's Down Syndrome Awareness video?  Here's the link in case you missed it in an earlier post. http://www.youtube.com/watch?v=FX522GlbFZc&feature=youtu.be

Sunday, September 16, 2012

Bringing You Home


It was one year ago tonight that we brought our sweet Danielle home from the hospital.  We celebrated her first birthday on the 7th of September, but I feel like this day deserves a celebration all its own. 

It was almost immediately after our daughter was born that she was taken to the Neonatal Intensive Care Unit for oxygen support.  Before they took her from the delivery room, a doctor told us he thought she might have Down syndrome.  I had already recognized her facial features and I knew it was true.  It seemed like forever before the doctors were finally able to move me from the delivery room.  I was anxiously waiting to be reunited with my brand new baby that I had only barely had a chance to hold; but when I got to her room I found myself at a loss.  She was in an warming bed, with an oxygen hood that completely covered her face and head.  I couldn’t hold her.  I couldn’t nurse her.  I couldn’t sway to a rhythm with her in my arms as I shushed her in a soft soothing voice.  I couldn’t comfort her in any of the ways I knew how.  I didn’t know how to be her mother; that’s how I felt, anyway.  I laid my head down helplessly on the edge of her bed and held her tiny finger.  My mind was swirling with concern and fear.  It wasn't long before I asked to be taken to my room.  I was exhausted, mentally and physically exhausted.  Later in the evening my nurse asked if I wanted her to take me back to Danielle’s room.  I agreed, but mostly only because I didn’t want the nurse to think I was an awful person for not wanting to see my baby.  It was hard to see her under that hood with so many things attached to her and to feel like I couldn’t be her mother; or didn’t want to be.  I was struggling with so many difficult emotions. 

The next day the nurse removed the hood that covered her face and replaced it with a nasal cannula.  I was able to hold her.  It was so nice to cradle her in my arms and rock with her in a chair.  It wasn’t long after that the doctor gave the go ahead to try feeding.  It was an awesome feeling to provide her the nourishment that only her mother could.  My mind was starting to clear a little and I could feel my baby tugging at my heart.  I started to notice that her nose looked just like mine, and that the way her eyes slanted slightly upward was graceful and pretty.  Her fingernails were so tiny and the blond peach-fuzz that covered her body was sweet.  

I was discharged from the hospital and went home to see my other kids.  Over the next few days I was back and forth from the hospital to home.  Every day I was missing her more.  When I held her my worries left me for a while.  The smell of a newborn brings a flood of mothering instinct.  Her soft skin was warm against mine, and her eyes seemed to tell me everything was going to be just fine.     

By the 16th of September, Danielle had been off the oxygen support for a few days and she was doing great.  Her doctor said we could bring our baby home.  While the shock of her diagnosis was not as raw as it had been a week before, it was still hard to accept.  It was hard to think about how her future might not be exactly like the one I had thought of during the 10 months that I carried her in the womb.  It was hard to explain to our family and friends what had happened, and attempt to console them when I myself needed to be consoled.  It was hard to feel the pressure to be a “special” parent that so many had said that I was meant to be.

It wasn’t hard to love her, though.  That part was easy.  We brought our baby girl home and we loved her.  We enjoyed her.  Our scars were beginning to heal as we adored every coo, celebrated her first smile, and enthusiastically applauded her first time rolling over.  It was the day we welcomed her in to our home that she changed my heart.  I could see how perfectly our baby fit in to our lives.  I was seeing my child for who she was.  She was a baby, a precious blessing, not a diagnosis.   Love is the only thing I needed to be her mother.

It’s now one year later and I am incredibly proud of our daughter.  I want to shout from the roof-tops that I love someone with Down syndrome and that she has forever changed me.  I’ve learned so much from being her mom and she’s made me a better person.  I still have hard days sometimes but her eyes are still telling me that everything is going to be OK, and her infectious smile seals the deal.

 

Will you shout from the rooftops with me?  Join us for Buddy Walk to celebrate Danielle’s first birthday!

Our Buddy Walk Team Page

Thursday, August 23, 2012

Mostly pics...

This photo is awesome, right?  I sent it to IDSC for Life.  Hopefully they'll use it in their photo campaign.  Wouldn't that be so cool?  Like their Facebook page to follow the campaign.



Here are a few more.  Danielle has been enjoying the swing.  She finally has enough upper body strength that I feel comfortable with her on the playground swings.  Swinging is great source of sensory input for her.  It provides vestibular stimulation.  It's a great way to get some therapy in during a routine trip to the park with the kids.








No one likes to swing alone.





I'm noticing that in many of my photos lately, the focus has landed on the ears, or hairline.  What the heck?  I'm focusing on the eyes when I take the shot.  Could my lens be a bad copy or is it me?  I am using a very wide aperture a lot of the time, just because I can, really, thanks to my newest lens, so I know my shutter is fast enough to freeze any movement.  My camera does not have AF micro adjustment settings, so that's not an option for me right now.  I think it's too late to send the lens back :-(.  I'm open to suggestions.

Monday, August 6, 2012

"More"

I'm so proud of my baby! Danielle is using her first sign. "More." I started signing with Danielle when we started her on solid foods, and we've been focused on feeding signs.

eat-food

finished - all done
Photo Credit: http://mykidentity.com

She has been showing me for weeks now that she understood "more," by removing her fingers from her mouth and opening wide for her next bite in response to the sign and spoken word used together.

She started using the sign a few days ago. Here's a video of her signing "more."




It appears that she is also signing the word "eat" but I'm still trying to figure out if she knows the word because she's been using it sort of randomly.  I seems that she's still experimenting with it but I think it will soon be the 2nd sign in her repertoire.

On the neurology-front:  Danielle is 12 weeks seizure free!  Her neuro said he was impressed and encouraged by her cognitive development since our last visit.  He added that statement to his report with an apostrophe!  Yay!  I love apostrophe's!!  She earned it :-).  She is having another EEG next week to make sure that her brain wave pattern is still looking normal.

Cardiology:  Danielle had another echo cardiogram last week.  Her heart is functioning just as it should be.  We took her off her maintenance drug that was started after surgery to give her heart an easier time.  If her blood pressure looks fine when we go back in a few weeks we can take an extended vacation from cardio.  It will be an annual visit for Cardiology.  Awesome!

We've overhauled our early intervention routine.  We've added physical therapy, got a new occupational therapist (LOVE her!) and we're starting speech therapy this week.  I've been trying to get Danielle in to aquatic therapy (she loves the water!) with not much success, but our new OT happens to ALSO be an aquatic therapist and she's going to get Danielle in to the pool with her.  Score!  We will have services twice a week, which I think will be perfect balance for us and will greatly benefit Danielle.

Danielle will be one year old in Sept.  How does this happen!?  There will be some exciting stuff to come, so stay tuned ;-).

Friday, July 27, 2012

Dancing Stars

Dear Baby Girl,

When I look in to your beautiful almond shaped eyes my heart fills with joy.  Sparkling blue-gray windows reveal a glimpse of the beauty you have inside and offer a deep reflection of myself.  Tiny little stars dance around in your eyes.  Many other people with Down Syndrome have these little flecks in their eyes like yours.  Some people call them brush field marks, but I like to call them your dancing stars.

Some people think Down Syndrome happens by accident, but baby, your mommy knows better.  God made you just as you are.  The constellations that circle your iris were placed with calculated precision.   


Your eyes slant upward ever so gracefully and you have just the right amount of space between your toes. The slight bend at the top of your ears is endearing and the single crease in the palm of your hand is adorable.

Every little gene was by careful design.  Even, that cute lil' tag-along on the 21'st chromosome.


Photo Credit: Noah's Dad


You know how I know?  Because God told me so, and I think he wants me to spread the word.  God shows me too.  Those beautiful brush field marks in your eyes are reminiscent of the artistry that has been bestowed on us by God.

Photo Credit: Paco Calvino



Photo Credit: Paco Calvino


Photo Credit:  Moran Brenn


Photo Credit: Smithsonian Institution


None of us on earth are perfect. Not you, not daddy or mommy or anyone. But we are all God's children.

God doesn't make mistakes.  He makes Love. 

Real love is blind.  It's unconditional.  It's forever.  It's abundant.  It's fruitful, and life-giving.  It's limitless.  It's the most amazing feeling.  Love is what I feel when I look in to your beautiful eyes.  So much LOVE... and HOPE... and PRIDE.... and STRENGTH.  I give thanks every day that God showed me what real love feels like.  I have been so blessed by God in giving me your daddy, your sister and brother, and you.




Monday, June 25, 2012

Danielle's miracle drug...

"Nothing is perfect this side of heaven, but I think God wants us to walk through all parts of life knowing He is there, and trusting Him for the final outcome." Someone close to me recently sent me this message, as we were going through a tough time with Danielle. She is such a smart lady.

Danielle was having so many seizures and they were greatly affecting her well-being. She had stopped engaging with us.  It had been weeks since I had seen her smile. She had completely lost interest in playing with her toys, and eating solid foods. There were no giggles or coos. She lost most of the head control and upper body strength that she had worked so hard to gain in the first place. She began turning her head constantly, back and forth, the repetitive behavior continued pretty much throughout the whole day. The hair on the back of her head was almost completely rubbed off. She seemed like she was fading further away from us with every passing day. Things were really bad and I was terrified. God answers prayers, and knowing He was beside me as I walked down a traitorous path was the only thing that helped me survive the journey.

I never really understood the phrase "emotional rollercoaster" until recently. The thing about having incredibly low lows is that the highs are so incredibly high. Euphoric. Danielle started a drug called Vigabitrin and has been seizure free for 6 weeks now.  Give thanks!!  As soon as the seizures stopped she started coming back to us. The head turning stopped. She was interested in her toys, and eating her favorite foods. Smiles, coos and giggles!! I couldn't even look her direction without her cracking a huge smile. This girls' grin is awesome. She must be using every muscle in her face to get that kind of glow. She is her wonderfully social self again. I cannot express how thankful and happy I am for my daughter's well-being. I had missed her so much. Her development is quite delayed, of course, after having uncontrollable seizures for as long as she did. She is, however making an impressive comeback. I am so proud of my girl!

Danielle had another EEG.  I was told going in to it, that it may not be completely normal, even though the seizures had subsided. Her neurologist called to tell me it was, in fact, NORMAL!! Normal! ... Can you believe it?  I keep replaying the phone conversation in my head. "Normal!?" I said excitedly to her new neurologist, who we don't yet have much of a personal relationship with. "Yes," he says, "NOR-MAL," sounding out the word slowly as if I didn't hear him correctly. I heard you dude, I'm just excited... couldn't you be a little more enthused!? I wish it had been Dr. O who gave us that news because she would have shared with me in celebration. It is GREAT news, even though the delivery fell flat. Her doc wanted to talk about a few other minor things that honestly, at that moment, I didn't give a damn about. I couldn't wait to get off the phone and share the news with my husband, who I knew would have a hullabaloo with me ;-).

Infantile Spasms is really scary. Some children never find their miracle drug.  I pray for other families, some who I've become aqcuainted with, who continue to fight infantile spasms, or other seizure disorders.  Although we were in a very scary place, I feel blessed that God has shown himself to me and that I've learned to trust in Him.  I hope others who are facing hopelessness can find hope and comfort in God too.

Danielle's improvement couldn't have come at a better time.  We were told by neuro that we could take a vacation from our appoitments... and that is exactly what we had already planned to do.  We went home to California to visit our family and to be a part of my sisters wedding.  Congrats K and R!!  Danielle got to meet her Grandpa for the first time, as well as her Great Grandma and Granndpa.  She was passed around that wedding reception and snuggled with so many people we love.  It made my heart swell to see them loving on her... she enjoyed it too. ;-).


Danielle snoozing while the rest of the ladies get ready for the wedding.  The purple in her dress matched mommies bridesmaid dress perfectly.  There couldn't be a prettier accessory than this baby. ;-)

My oldest daughter was all dressed up too.  She made a beautiful flower girl. (right)




Spending some time with Shamoo.  She loved having her stroller parked right up against the glass of the huge tank to see the whales swim.


First swim in the pool.  She cried that the water in the pool was a bit chili.  Thankfully the hot tub was luke warm on that day.

Tidepools in beautiful Laguna Beach, Ca.



THANK YOU for all of your prayers.. And please don't stop. Please continue to pray that the seizures will stay away. She will be on Vigabitrin for six months before we wean the drug. We'll then be waiting, watching, hoping and praying that the seizures don't return


Saturday, April 28, 2012

ACTH


I do a pretty good job, I think, at staying positive even when things get really hard.  Some of it may be keeping up appearances.  I don’t want to worry my family.  I want to protect my family any way I can so sometimes I don’t make a big deal out of something that maybe is a big deal.  I don’t want them to see me sad, or stressed, or worried.  I don’t want them to see me cry.  I let my tears fall under the disguise of the shower.  It’s usually the only time that I’m alone. Okay, maybe not completely alone.  I often poke my head out in response to the demands that I see the newest picture that Emily drew or the block robot that Justin built.  My sanctuary is not without its interruptions, but it’s a good place for me to release some stress and shed a few tears.  The shower drowns out some of the sounds of the children who are sword fighting in the hallway and I can hear my thoughts.  I can hear my prayers. I prayed the other day that Danielle would smile at me.  She hasn’t been her smiley social self for a while now, not since before her heart surgery.  It’s hard to know if it’s the Infantile Spasms that is taking my baby away from me or the medication that is masking her sweet character.  I prayed for God to heal her.  I prayed for a sign that everything would be okay.  I prayed that my baby would smile at me that day.  God answered my prayer.  She smiled at me later that day, and she’s been smiling at me every day since.  I really needed that reminder that God answers prayers.  Everything we’ve been through lately is enough to completely drain me physically and emotionally, but God never fails to restore me. 

Some of you who follow me on Facebook might have seen that I recently posted that Danielle’s latest EEG looked “perfect.”  Apparently when the neurologist said “perfect,” what she really meant was “very much improved.”  She had to explain to me later that day that while Danielle’s brain waves are much more organized now, she still has epileptic brain activity.  The prednisone that we added to the Topamax to make a “good cocktail” wasn’t effective in gaining complete control of her Infantile Spasms.  Danielle was admitted to the hospital to start ACTH (adrenocorticotropic hormone) treatment on Tuesday.  This is an aggressive treatment.  Although Infantile Spasms is tricky to treat because there is not one treatment option that works for everyone, ACTH is this is typically the first line of defense; the standard of care.  We didn’t have ACTH as an option until recently, after her cardiac team cleared her for the use of this heavy steroid, but at least we were able to rule out some things that didn’t work.  ACTH is a six week treatment; two weeks on a moderately high dose, followed by 4 weeks of weaning down.  Some of the side effects of the drug include: high blood pressure, irritability, high blood sugar, risk of infection due to suppressed immune system, water retention resulting in painfully bloated baby… the list goes on.  We’re treating her at home now, and there is a nurse that will come to our home twice a week to monitor her blood pressure.  I give her ACTH injections twice a day and monitor the ketones in her urine daily to make sure her blood sugar isn’t too high.  The promise that ACTH is effective has me hopeful, but very nervous.  The drug typically stops the spasms within a week.  3-5 days is most typical, but we need to give it a full two weeks before we know whether or not ACTH will be Danielle’s miracle drug.  Danielle is still having spasms today (treatment day 5).  Please keep praying for her.  Please pray that ACTH works.
EEG Monday night before starting ACTH.
Special handling.  One vial of ACTH.  I was annoyed that I had to jump through hoops to get this medicine, but looking back at the package set in the seat where my baby should be was very emotional for me.  This medicine is unbeleivably expensive and I am SO very thankful that it was made available for our baby girl.  There are mothers and fathers in other parts of the world that would sacrifice everything they have to get this drug for their child.

Sunday, March 25, 2012

A Good Cocktail...

Danielle had another EEG the week before last.  This experience was much better than our first EEG.  It wasn't long after the electrodes were placed that Danielle was calm in her bed.  My focus shifted to the monitor that was recording the study.  The horizontal lines skipping across the monitor looked chaotic and messy, much like it did during her first EEG.  What does a normal brain wave study look like, I wondered.  I spent an hour... okay, maybe two, on a very slow Internet connection googling "normal EEG," "abnormal brain activity," "EEG, Infantile Spasms."  Finally, I decided I was torturing myself trying to analyze what I was seeing and I covered the monitor with a blanket.  Out of sight, out of mind... right?  Not really.  I have been wrecked with worry about Infantile Spasms, and this day that she was scheduled for her EEG was an exceptionally bad day for her.  She spit up shortly after she took her medication on that morning.  She had a cluster of spasms early in the afternoon, and another in the evening, which was recorded on the study.  Both episodes were severe compared to what we had been seeing in the past few weeks.  This was a bad day for her to have an EEG.  I thought for sure the doctor would give me bad news that she didn't see any improvement.  But what if it was because she spit up her medicine?  Should we switch to another medication?  Should we wait until they can get her on the schedule for another EEG?  Infantile Spasms is not something you want to waste any time treating.  She received her 8pm dose of Topamax and she did not have any episodes during the night.  I didn't think about looking at the monitor after her medication that night.  I was too busy trying to soothe Danielle.  She was extremely fussy.  The electrodes are very uncomfortable, especially trying to sleep with.  We spent most of the night in the hospital chair, hushing, rocking, nursing, repeat.

I saw Danielle's neurologist last week on Tuesday, expecting to hear the results.  I was upset when I learned that she didn't yet have a copy of the study, even though I had made sure to notify the hospital that Dr.O needed to have it before our appointment.  I had seen two neurologists in the hospital when Danielle was diagnosed, and I saw them both again at their office for a follow up before I decided who we wanted to stay with.  The EEG was done at Children's, but the awesome doctor I had decided would follow Danielle is in the INOVA group.  I wasn't expecting that it would be such a problem to get a copy of the study.  Dr.O had her nurses working on getting a copy of it, and anyone who knows me well is certain that I too, was taking action, with hard-driving ambition.  Well it turns out that the doctor I chose, a woman, is a firecracker too.  After getting on the phone with someone in management at the hospital and deciding they weren't moving fast enough, she decided to take action.  She drove in to the city after her day should have been over, marched in to the neuro-sciences department and insisted that she view Danielle's EEG.  I love her.  I love her for caring enough about my baby to take her personal time, and endure city traffic to provide her patient with the care she deserves.  I love her even more after hearing her on the phone say that Danielle's EEG looks "beautiful."  Beautiful!!  It looks beautiful!!  I wasn't expecting good news.  It was such a relief to hear.

Danielle isn't completely seizure free yet.  Her EEG did show "bursts of abnormal activity."  The Topamax is working but it might need some help to get the job done.  She'll be in the clear (from a cardiac stand-point) to use steroids in about two weeks.  If she's not yet completely seizure free at that time, the doctor will add a small dose of Pregnisone to her treatment.  Her doctor is confident that this will be effective.  Apparently Topamax and Pregnisone make a good "cocktail."

I've had some people ask me what it looks like when Danielle has an episode.  For most of us, when we hear seizure, we think convulsions.  Infantile Spasms can be easy to miss and sometimes go undiagnosed for some time.
Notice she is turning her head from side to side.  She is difficult to engage.  Her arms go up and legs come toward her body.  Her face makes a startled-like expression.  Spasms at 0:1, 0:12 and 0:28.

Thursday, March 22, 2012

World Down Syndrome Day


I haven't thought much about Down Syndrome lately. With everything that Danielle has going on right now, Down Syndrome has faded quietly in to the background of our lives. When I look at her I don't see chromosomes. I see a sweet blue-eyed baby girl with soft milky skin. I see pretty heart shaped lips just like her momma, and a little button nose that accurately mimics the rest of the Alfonso children. She sucks her thumb, puts anything else she can manage in to her mouth, makes complete facials out of her avocado at breakfast, and is full of smiles and coos. I imagine her learning to crawl, motivated by the toys that she'll want to steal from her siblings, and to run after them in a game of tag. I'm sure she'll join with them in the bickering and whining eventually too, but every day will end with us cuddled up as a family reading a story together. She'll try her arm at softball and her legs at soccer, and maybe join the local girl scout troop. We'll have fun baking together and I'll teach her how to prepare a meal. She'll have chores, and hopefully an allowance if she's a good girl. She'll have time-out or lose a privilege if she's not. She'll grow in to a teenage girl (faster than we can blink an eye I've heard), who has her very own, VERY specific, idea of how she wants to dress. One day she will be ready to leave the arms of her mother and go out in to the world, become involved in her community, get a job.

Yesterday was World Down Syndrome Day. March 21st. The date 3/21 signifies 3 copies of the 21st chromosome, clever huh :-). This is a day to celebrate the people in our lives who have Down Syndrome, and to recognize their abilities and achievements. It was a day for me to recognize and be thankful for so many people who have helped to pave a path for people with Down Syndrome, for my daughter.  People who have worked hard to promote inclusion, acceptance and understanding.

I spent the morning reading stories from moms, dads and other family members who share their lives with a person who has Down Syndrome. I was inspired reading their stories. Stories that not long ago may have seemed foreign are now so very close to my heart. You can read them too, there's a link up at Megan's blog, I promise you will be moved.

One of my thoughts shortly after Danielle was born was that she was here for ME. My faith had been renewed. She saved me. I realize now that maybe it was a selfish thought. I know Danielle will touch more lives than just mine. She will live her life serving God's purpose. Diversity is so beautiful and she will enrich the world just like so many others who share a similar genetic make-up.

Tuesday, February 28, 2012

Home Sweet Home

Danielle came home from the hospital on Sunday evening.  It feels so good to have my baby home with a perfectly patched- up heart.  I keep finding myself getting emotional about doing the routine, normal, things we typically do in our every day.  Kiss n' ride at the preschool with Danielle bundled up along for the ride, enjoying a game of peek-a-boo at the changing table, sitting at the edge of my sons bed nursing the baby as I wait for him to drift to sleep.  I'm so thankful to have my baby, holding her little body in my arms, seeing her smiles, hearing her coos... I'm over the moon.  A prayer has been answered.  I'm so thankful to have my baby here with me.

We didn't get to this place without jumping a few hurdles, though.  We had a rude awakening on Friday night... literally.  It was around 1 A.M., and Danielle and I were asleep together in the hospital sleep chair.  I was resting like a mommy often does, with one eye open, on the defense, ready to pounce like a lioness.  It is hard to sleep soundly in the hospital environment.  Our room enveloped in a blue glow from the neighbors bili lights, the nurses knocking every few hours to take my baby for vitals, and the looming thought of the phlebotomist being there at sunrise to draw blood.  Danielle was perfectly peaceful and comfortable, however, fast asleep with a boob hanging out of her mouth.  I jumped out of bed and threw our blankets aside as Danielle suddenly unloaded what must have been the entire contents of her stomach all over herself, her mommy, and our makeshift bed.  I called the nurse in to help us get cleaned up.  She was so sweet to change our bed for us, but she should have brought two sets of linens because it was only two minutes after we laid down again that the whole process repeated itself.  Danielle was running a fever and was obviously miserable.

Saturday was supposed to be our day of discharge but Danielle was still feeling sick and wasn't eating much.  The doctors decided to keep her and planned to give her some fluids via IV drip that evening.  They did some additional blood work, took a urine sample and a nasal swab, to test for infection and known viruses.  She tested positive for RSV (a respiratory virus), which was a shock for the doctors and myself.  She wasn't showing symptoms that are common for the virus (coughing, rapid, or labored breathing).  They moved us to a private room where we were considered to be in "isolation."  The Doctors and nurses were required to wear a gown and mask when they entered our room.  Drama Queen didn't need to get infected with RSV just to get a private room... geesh.  RSV acts like the common cold for most of us but can be dangerous for infants and cardiac patients.  Fortunately, Danielle hasn't yet shown symptoms that are concerning.  The doctors discharged us on Sunday after she had gained her usual appetite back.

I'm pretty sure the throwing up was due to a G.I. bug, or the flu, because Danielle seems to have passed it on to her brother who was throwing up last night.  He's doing much better today and I'm still feeling thankful for the comforts of home... even though I've been thrust back in to the mommy role, which in our home, includes scrubbing barf out of the carpet.  Home, sweet home.


    

Wednesday, February 22, 2012

One Step Closer to Home

We were moved back to the regular pediatrics floor today, back to the very same room we started in last Wednesday.  It felt strangely like a homecoming.  We received a warm welcome from the nursing staff that we had become so friendly with throughout the week.  Our girl has a smile that captures anyone she meets and I've been told that she has become pretty popular around here.  Apparently she caused quite a buzz when the staff learned she was joining them again so soon.  She had a group of 5 nurses who crowded around her bedside to visit with her as we settled her in.  She's been referred to as "champion," "rock star," and "tough lil' cookie."  She is a tough little cookie, I'm so proud of her.  She's looking so good today.  She's eating like she does at home and she's resting comfortably.  They are weaning her off the heavier pain meds and I'm hoping that she'll be a bit more alert tomorrow.  I'm missing my special girl.


    
Mommy has earned some popularity too.  The staff here has gone bananas over this anatomical heart that I knit for Danielle in anticipation of her surgery.  I've had a few staff members here pop in just to get a look at it.  I'm really wishing now that I had taken the time to finish it completely, making it anatomically correct to include the superior vena cava, inferior vena cava, and pulmonary veins.  I think I will finish it and give it to the surgical staff that repaired Danielle's heart.


You can find the pattern here: http://www.knitty.com/ISSUEwinter08/PATTheart.php, if you're interested in making one for yourself.  I followed the pattern, except I used worsted weight yarn to make it a little larger, picked up stitches to add the detail to the aorta, and wrapped the aortic valve around the pulmonary valve a little differently that shown to make it more anatomically correct.

Tuesday, February 21, 2012

The Cardiac Corner

It's intense in there.  There is so much medical equipment.  The beeping from the monitors start to sound rhythmic after a while, and then you don't hear them anymore because your brain tells you it's information you don't need after the 100th time. The nurses here are so much different than they are on the regular pediatrics floor.  The pediatric nurses are the friendliest people you'll meet.  They use a soft soothing voice when they talk to parents, and they're not afraid to break out the baby talk when they address your child.  I like them.  The nurses in the Cardiac corner of the Pediatric Intensive Care Unit are very business like.  They buzz around like bees, everything seems so hurried, I think they must get a caffeine drip before their shift.  Their kids are just coming out of surgery and they have a lot that they need to manage for their little patients.  It seems that they are very skilled in keeping a mental catalog of every function of the body at any given time and they are quick to react to any need of their patient.  I like them too.

Danielle came out of surgery around 7pm last night.  The surgeon said the surgery went well.  He said the hole in her heart was big, and that there was a 2nd hole in her heart that we had never seen during her echo-cardiograms, an atrial septal defect.  It was a small hole and he used a few sutures to close it.  Before her surgery, the doctor's had prepared me for her to be sedated through the night while on the ventilator.  They said that she would probably stay on the ventilator through the next day.  Danielle was breathing almost entirely on her own only a few hours after surgery!  I expected that when I saw her after her surgery she would be sleeping peacefully, instead, she's kicking all around and seems agitated by everything she's hooked to.  All day I've been questioning the doctors decision to take her off the vent so quickly.  There's another patient in the 2nd bed of the Cardiac Corner who came out of surgery this morning.  The baby is still sedated.  He looks so peaceful resting and I can't help but feel like Danielle deserved to have that time to rest and relax after such an invasive surgery as well.  The doctors keep re-assuring me that she's doing great and that coming off the vent so early was a huge success for her.  She seems to be much more comfortable as of this afternoon.  Apparently managing pain can be like walking on a balance beam.  They want to make her comfortable, but they don't want to slow her respiratory rate and risk having to re-intubate her.  She took about 10cc's of breast milk this afternoon.  It's such a small amount but it made me feel good that mommy was able to do something (ANYTHING) to help her.  Let's get some "liquid gold" (I love that the pediatrics people call it that) in to that girl, she could really use those antibodies after being on the heart and lung machine.  Her blood seems to be clotting well enough, and she hasn't required any blood transfusions, which is great.  I think I heard that they were going to try to move her out of the PICU on to the regular pediatrics floor tonight but that seems so quick.  We'll see what happens. 

Thank you all for your prayers and well wishes!

      

Sunday, February 19, 2012

Holding Her Tight

Dear God please watch over my sweet baby girl.  I'm holding her tight tonight.  I'm going to miss holding her like this, knowing that she's sleeping contently, feeling safe and warm in the arms of her mother.  I have faith that she'll be in the arms of God, but my heart will be aching for her.  My heart will be aching to feel her soft skin against mine, to see her bright smile, to hear her giggles and coos.  Please God make my baby well.  Please.  Stand beside me and give me the strength I will need, hold me up when I'm feeling weak, settle my soul when the anxiety is eating away at me.  Please God make my baby well. 

Our family is facing more than I ever thought we could bear but shortly after Danielle was born I realized my faith had been renewed.  I'm hearing the voice of God louder than I ever had before.  He has so many faces and I'm seeing him all around us.  I know he's here with Danielle as she battles to overcome these obstacles that she's been given so early in her life.

When I learned that Danielle had Down Syndrome I remember thinking "how can I be the mother of this child?"  The only thought that I am left with going in to this surgery is "I could never be without her." 



  

Friday, February 17, 2012

The NEWER New Plan

I've typed this up once and am having to edit it now because there's been yet ANOTHER change of plans.  Danielle is having her surgery on Monday.  We're starting her tomorrow morning on a drug called Topamax to treat the infantile spasms.  This is the least aggressive of three options that we were given.  The treatment option that the neurologist was pushing for is called ACTH (a steroid treatment), but she was only considering her organ of expertise.  Danielle's cardiologist weighed in and advised that ACTH, because of the side effect of high blood pressure, would be to aggressive for her considering her heart defect and would inhibit healing after her surgery.  The two options that we are left with are a drug called Vigabatrin or Topamax.  Vigabatrin has more serious side effects but is more effective.  Topamax shouldn't cause any serious side effects and it has been in use to treat infantile spasms in the U.S. for a long time.  We requested the opinion of a second neurologist who advised to start with Topamax, and that was consistent with what Steven and I where leaning towards.  They will start Danielle on a small dose and increase it as her body adjusts to the medication.  We'll watch her progress and get another EEG while Danielle is in recovery after the surgery.  If the medicine is working we'll be able to wean her off after about 12-16 weeks.  She should be seizure free after treatment.  If Topamax doesn't work, we'll switch to Vigabitrin, and the last resort for us would be ACTH, after her heart has been repaired.  I am praying that the Topamax works.  This is a long road for some children and if the spasms aren't controlled, it could cause her cognitive delay.  I'm trying not to fear the worst, instead using my energy to pray and hope for the best.  PLEASE keep her in your prayers!

Danielle had a good day today.  We haven't started the treatment yet, but she only had one episode, which is much improved from yesterday.  She is her smiley social self.  She seems to be enjoying her stay at the hospital.  She meets so many new friends.  Every time there's a shift change and she sees a new face at her bedside she gets giddy.  I even got her to chuckle a bit today, when we made up a new game involving taking turns spitting out a pacifier ;-).

Steven has been my replacement for the past few days and I have to say I'm pretty impressed.  He's an awesome Mr. Mom.  He's gotten more laundry done than I would have given the same amount of time, he took Justin for a Dr. appt today with great success, and he's keeping these kids busy and happy.  They look like little ragga-muffins, with their dirty faces and un-kept hairstyles, but hey, that's what happens when you're having fun.  We're switching roles tonight so I can get some snuggle time with the kids and possibly watch the Greys Anatomy/Private Practice that I tried to watch at the hospital last night without much success.


Mom's making me do PT even while in the hospital... I secretely enjoy it though ;-).
I came home tonight to find these Get Well cards on our doorstep.  I was so emotional as I stood at our kitchen counter reading these.  My favorites said "I love your face when you smile," and "I hope the surgery doesn't hurt, U R so cute."  They where all sooo sweet.  Thank you Brownie Troop 276!