Danielle is ONE!

Our Buddy Walk Team Page

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.

"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.




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 ;-).

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.

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

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.

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.

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.

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.