Notice anything different?

Have you noticed anything different in recent photos of Aurelia?  Maybe a missing piece of headgear?

 While the helmet was very cute, and The Hawk did find some interesting uses for it. . . 

. . . we are thrilled to be rid of the it!

In all honesty, she wasn't done with the treatment.  But we were so finished with it.  The beginning of the end started with a double ear infection coupled with a heat rash.  She got 5 days of helmet free time to get rid of the rash, and it was magical.  Not only could I snuggle and kiss my baby without that silly piece of plastic getting in the way, but Aurelia started rolling from side to side and tolerating tummy time a tiny bit more.  We realized that the helmet might be hindering some development.  Then came the appointment when her orthotist mentioned the words "second helmet."  After six months, Baby A had grown out of Helmet A.  Helmet B was just not in the cards for us.  I mean, I put so much work into decorating Helmet A.  And we were pleased with her initial progress. . . but she wasn't making much progress past the first month in the helmet.  

Scan #1 in 2/2011.  Her CVA measured 20mm

Scan #2 in 9/2011.  Her CVA measured 10mm

Just for reference, a typical CVA is 0-4mm.  Aurelia went from 20mm to 12mm in the first week.  Then she hung around 10mm for the next 5 months.  I think she's really around a 7 or 8 right now, and there is still a chance that it might round out some more on it's own.  She was at the point where the treatment was considered cosmetic (under 11-12) which in my book equals optional.  Her facial features and ears are completely symmetrical.  She's not at risk for her head pushing against her brain too much anymore (poor little lady, pressure from the inside and outside).  And since she is a girl, hopefully she'll always have a nice head of hair to cover her misshapen little noggin.

Now the question is what to do with the helmet? And is it possible to smother her with kisses?  Poor little kid is always getting smooched on her bald, little head.

Happy 10th Anniversary!

Wow!  Looking back on the second week of September, 2001, it was a significant week for Julie Pandiani.  Here's a little frame of reference:

I had just finished up a middle school youth internship at my church.  Here Mandy and I prepare for a make over party with 20+ middle school girls, all in tween love with Apollo Ohno.  

And on Labor Day weekend I worked at the YoungLife Teriyaki booth with the man that I would later call my husband and the man we all call Juan Pedro.  

There's the obvious event of the second week of September.  The morning of September 11th I was preparing for my first real date with Joey (Slurpees and frisbee) and packing to move to Bellingham for school.  The date was delayed, of course.  Joey was fulfilling his role as Airman Hawkins.  When we look back, we're always a little shocked that we rescheduled our date (coffee and a walk at Jerisich Park).  I'm glad we did.

But this post isn't to commemorate world events or budding romances.  No, one other very important event happened that already packed week.  10 years ago this week I moved into the Forest Fire.

The Forest Fire was the house I lived in at Western (it was on Forest, go figure).  During my tenure, there were 7 girls in the house and a cast of regular characters coming through the door.  It would be a gross understatement to say that we had a lot of fun in our house.  I still laugh out loud at the many shenanigans we found ourselves in.  And I should point out that all of this was completely sober too, we were very responsible.  Well, not always when it came to homework and going to class.  But the closest we came to parties was joking that Emily's last name befitted a frat boy, "Burghoffer, you're crazy!  Get off the roof!"  

I realized while writing this post that most of my pictures from this era are pre-digital camera!  Very few pics on the hard drive.  

Many of this crew continue to be the most premium friends I could ever, ever ask for.  Some have lost touch, some new faces have come along, but a core group has remained close.  And most of us have an uncanny ability to pick up right where we left off.  We've walked with each other through break-ups, transfers, graduations, new jobs, big moves, weddings, babies, life's really tough/dark times, and its really great times.  We've lived, worked, traveled, dreamed, planned, schemed, and most importantly, laughed together.  

So, to my dear friends, Happy 10 year anniversary!  May we always enjoy memories of Majestica Majestica, Anna's creepy doll Nancy, Holly navigating the Atkins diet, Cabin Fever 2002, "robbers" who leave messages on our answering machine. . . twice, calendars of JTT, abbrevs, DJ Lethal, and all things lil.  And may our future be filled with new adventures (preferably together), yard wine, and Capris on stoops all over the world. . . and (of course) coveralls.

Flashback post: Duke visit

We didn't go to North Carolina just so Aurelia could make her little love connection.  Really, we were there for what we thought would be her final stem cell infusion at Duke.  Turns out that we'll make one more trip out for one more infusion next May.  Dr. K said that Aurelia has responded so well to the treatment and she has just enough cord blood left for one more round, it's worth the effort.

We're excited about the chance to get one more dose of these cells that are making such a difference.  Aurelia had a notable increase in vision after February's visit and since this last trip she's gotten a lot more wiggly and seems ready to move.  Of course, traveling across the country to have your child poked with a needle is not the most enjoyable thing I've ever done.  But we make up for it with fun adventures and seeing friends from all over the place.  This last visit we saw friends from Kabul, Texas, and Washington!

This last treatment went really well.  I guess I should clarify that and say that I felt better prepared after our last experiences and went in with realistic expectations.  Baby Hawk had to endure 4 pokes before they were able to place the IV.  She was fussy but fine for all the needles.  She is such a trooper!  But the real secret was music therapy:

Sorry, the photos are grainy.  We had the lights a little dim and I only had my iphone with me.  But you can see how intrigued she is by the guitar.  She loved feeling the vibration and watching Trey strum out songs like "New Slang" by The Shins and the theme song to the Mary Tyler Moore show.  Aurelia has loved music since before she was born.  At a friend's wedding when I was 18 weeks pregnant she showed her good taste in music by only kicking during Stevie Wonder songs.  After we received the news about the hydrocephalus I listened to the Balmorhea song Settler on repeat for about six weeks and I would sing the hymn It Is Well whenever I felt discouraged.  And now she loves Eddie Vedder, especially his ukelele album.  I think she likes his deep voice, or maybe she can understand him better than I can.  This kid loves music.  The older she gets, the more we see music working as a therapy tool (see Lisa's post from yesterday).  It calms and soothes, but also excites and invigorates.  Put on anything with a beat and Baby A starts moving!

In the end, Dr. K was able to place the IV in Aurelia's arm.  This is a big deal for two reasons.  First, no one has ever successfully placed an IV in her arm since her first days in the NICU.  And those both flooded, failed, and caused her veins to collapse.  It's good to have the option of the arm again as placing an IV in her foot or on the side of her head is becoming more problematic the older she gets.  Second, Aurelia had a PICC line in her arm in the NICU after her IV's failed which has caused her to have some sensitivity issues.  She hates having her arms straightened, rubbed or generally touched.  She was very resistant to having her arm straightened to look for a vein, let alone poke it with a needle and then leave it straight for 2+ hours.  It took 5 people to keep her calm and restrained until the IV was all set up.  But in the end, she managed just fine.  She continues to surprise and amaze me.  Can't wait to see what these stem cells do!

The Far Side of Complexity

Meet Lisa!  

Lisa was one of my very first friends in the hydro world.  She blogs about her beautiful family at The Far Side of Complexity.  Her sunny outlook is always a huge encouragement.  Lisa reminds me that there's always something to smile about.  I recently asked her a series of questions.  Read her answers, they're lovely.  




Q: Tell us about your family. 

 

A: Donald and I have been married for 11 years and have three daughters, Alexandra (8), Lorelai (6), and Elisabeth who will be 4 years old this month. In addition to hydrocephalus, Elisabeth has severe epilepsy and is cortically blind.

 

 Q: Tell us about the moment you were told your child had hydrocephalus.

 

A: When I was 16 weeks pregnant with Elisabeth I went in for a routine ultrasound where they discovered the hydrocephalus. It was the worst moment of my entire life. I was completely devastated, scared, and more than anything, confused; I had never even heard of hydrocephalus. The emotional pain I felt at that moment – when they told me her survival was not likely - was so strong that it turned into physical pain. I learned what it meant to have a broken heart.

 

 Q: How has hydrocephalus affected your daily life? Maybe give one "real life" example.

 

A: The hardest part (actually, the only hard part) of dealing with hydrocephalus has been the physical  hardship. Elisabeth has severe brain damage due to her hydro and cannot eat, talk, or walk. Now, after 4 years of continually carrying and lifting her, I injured my back and I am in continual pain. Later this month I will have a spinal fusion done to repair my back and after that we have plans to make our home a little more handicap friendly so that I don’t have to lift/carry her quite so much.

 

 Q: Share a moment when you were frustrated or discouraged.

 

A: Fortunately, I don’t have a personality that gets frustrated or discouraged (except when the older girls don’t put their dirty clothes in the laundry basket.)

 

Q: Share a moment when you found joy or hope.

 

A: I remember when I was pregnant with Elisabeth and I was [at that point] not expecting her to live. I would sit and play hymns for her at the piano every day, hoping that they would bring her peace and comfort even while in the womb. Well, there were a few hymns in particular that spoke to my soul; that filled me with joy and hope; that made clear to me that the hardships we face here in this life are but temporary trials and that my family would be together forever in the eternities that follow this Earthly existence. When life is viewed from that perspective, the challenges we face don’t seem quite so big anymore.

 

 Q: What do you do to keep your sanity? How do you take a break?

 

A: I love to clean and organize. When I’m organized, I’m happy. I also might have a small obsession with Words with Friends.

 

Q: What advice would you give to a family who has just received a new diagnosis of hydrocephalus?

 

A: When I first learned that Elisabeth had hydrocephalus I was devastated and I spent a week or two in turmoil as I tried to digest the news. Now I see how unnecessary that was. Elisabeth may not be like other children, but she is my child and I love her. She fills our home with a spirit of love so strong and so pure that I wonder on a daily basis how we got so lucky.

 

So I would advise any other family who is receiving the diagnoses of hydrocephalus not waste time worrying and fretting like I did. The medical details are just that – details (and those details will all fall into place, they always do.) Instead, enjoy the little moments, the small miracles, and the beauty of a life that was meant to be.

 

 Q: How do you deal with difficult questions from onlookers?

 

A: Oh, I love it when people ask me about Elisabeth! I am just so proud of her and I want to share her with everyone. Unfortunately, I have noticed that a lot of people seem uncomfortable around disabled people and tend to shy away. So if I see someone glancing at Elisabeth in her wheelchair I give them a smile as a way of letting them know it’s okay to wonder about her...and even ask me a question or two. 

 

Q: What is one thing you wish families with typical situations realized about families dealing with special needs?

 

A: Honestly, I feel like we are the same as every other family. Every family has their ups and down, their triumphs and their failures, their joys and their sorrows.

 

Q: What is your dream getaway (either family, couple, or by yourself. . . or all three)?

 

A: We are hoping to take the children to London the summer after next. (Cheerio!)

 

Q: What is your child's favorite toy or therapy tool?

 

A: When Elisabeth was diagnosed with cortical blindness at 6 weeks old I turned to music to enrich her life. I am a violinist and a pianist, so we spend time each and every day in the music parlor of our home, enjoying music together. Elisabeth responds to music better than anything; we buy her toy pianos and bells and books that play songs and she is simply mesmerized by them. Also, whenever she is getting a CAT scan or a blood draw she holds perfectly still so long as I am singing her a song. To Elisabeth, music is magic and I am so grateful that in her life of limitations, she has found something that can bring her such joy. 

 

Q: And since we're from Seattle:

What is your favorite coffee (or coffee alternative) drink?

 

A: Choffy! It’s 100% brewed cocoa bean and it’s über healthy. (http://www.drinkchoffy.com/divine)

 

Q: Out of all the hydro family blogs I read, your family seems the most flexible with travel. You are always on the go! Tell us about traveling with Elisabeth including challenges and how it has enriched your family experiences. What has been your favorite family trip so far?

 

A: We love to travel and my husband and I want to explore the world together with our children. Traveling broadens the mind and offers experiences so rich and unique; which is why we make a point to do it - even if it is a little hard with Elisabeth.

 

Traveling with Elisabeth takes a lot of preparation. There are feeding tubes, and medications to think about. And then there’s the fact that she’s handicapped and we have to bring along her wheelchair. The most difficult part though, has become diaper changes. Elisabeth is much too large to fit on a baby changing table in the women’s restroom, so finding private places to change her has become somewhat of a challenge. The other issue is: where do you change her when you are on a cross-country flight? Airplanes are not handicap-friendly in that regard.

 

So yes, travelling can be a bit of a challenge, but it’s always worth it. Our favorite family vacation has been the one we took to Niagara Falls last summer. We met up with 6 or 7 other hydro families. It was amazing, to say the least.

Some post 9/11 thoughts

I woke up in the middle of the night Saturday missing a little country on the other side of the world.  I missed warm naan, drawn out greetings, air kisses on the cheek, dusty feet.  I missed extreme temperatures, power outages, our early morning mullah alarm.  A coworker once said, "Kabul is tied to you like a bungee cord.  You can run away from it, but it will pull you back."  Sometimes the pull I feel is almost unbearable.  I've mentioned before that leaving Kabul was the hardest decision Joey and I have made, and we felt a lot of uncertainty and regret as we left (read more about that here).  There are times when I close my eyes and can feel the sensory onslaught that comes with living in K-town.  Saturday night was one of those moments.

As I thought about this place that is worlds away from my comfortable home, I realized that here I was dreaming of a country that we are currently waging a war in, on the eve of the decade anniversary of the event that acted as a catalyst for that war.  And I began to wonder if there were other people thinking of Afghanistan on 9/11.  I'm not talking about the war, or terrorism, or extremism, or the Taliban, or Al Qaeda.  I am sure we all thought about these things.  And no matter what side of the fence you're on, those things are tied to the horrific events of 9/11.  What I'm talking about is the place that's existed for hundreds of years, rich in history, rich in culture, rich in pride; the place that has over 1400 tribes and 40 languages; the place that has seen war for the last three decades, where poverty, famine, death, and heartache are often synonymous with life.  A place that despite it's turbulent history and recent wars holds so much beauty.  That's the place that was on my mind.  And I'm sure that it was on the minds of anyone else who has lived there or visited.  But it's my sincere hope that others thought of Afghanistan too.  While most of our lives have returned to normal in the 10 years post 9/11, this little country on the other side of the world is still dealing with the effects of September 11th daily (example: multiple attacks in Kabul today).

In church on Sunday, we prayed for the families that lost loved ones.  We also prayed for our enemies.  I tried to picture that enemy in my head.  I have never met a terrorist, so I don't know what one looks like apart from news clippings.  I realized that the stereotypical picture that popped into my mind could be any Afghan, Arab, or bearded man.  And I've met lots of Afghans, Arabs, and bearded men, none of whom were terrorists.  And again, I wondered what others around me were picturing in their heads.    What I hope is that people realize that the vast majority of Afghans are not our enemies; the vast majority of Muslims are not our enemies either.  So I prayed for a different enemies that I do know face to face.  I prayed for fear and misunderstanding, not that we would have them, but that we would learn to be free of them.  I prayed that we would learn to love people and places that we don't know and don't understand, rather than fear them.  Because the places that we associate with this:

are places that have this:

and this:

and this:

but most importantly these:

Aurelia's First {Play} Date

We knew that little smile would cause us trouble.  We knew she'd cause some heartaches.  After all, she already has several grown men wrapped around her tiny little finger:

Six day old Aurelia being held by Nono for the 1st time

Walt Tehan singing her Irish lullabies

Uncle Juan

Uncle Paul

Uncle Ben, it was hard to pick a picture of Ben and Aurelia because they are all TOO precious

And Papaw

Even Cousin Jaron slows down enough to ask, "Can I kiss her?"

Although there is one guy who is definitely number one in her heart:

And she's had play dates with kiddos her age:

Deklan, Aurelia and Padraig

Aurelia has the gross motor skills of a 6 month old, not a 1 year old.  This makes playing with other kids her age difficult.  Social interaction is such an important part of development.  Aurelia has a hard time keeping up with kids her age, especially now that they are all crawling and walking around her.  Playing with Cousin Padraig usually consists of toy grabbing and vision loss.  Padraig usually tries to show her how to play with the toy.  He has good intentions.  We've found that the best Padraig and Aurelia play activity is supervised swinging.

We thought we had a little time before we had to worry about that sweet little smile winning any hearts her age.  But then she met Owen:

Um, I think Owen is totally checking her out.

Owen is my dear friend Bethany's son.  They live in North Carolina.  Despite hurricanes and busy schedules, we were determined to spend some time together.  Owen was born at 26 weeks.  He is now 14 months old, thriving, and at around the same developmental stage as Aurelia.  And Beth and I had no idea how much our special little kids would like each other.  Aurelia has never responded to another baby they way she did to Owen.  And the feelings were definitely mutual.  It was almost like they knew, "Hey, you get me."  Both of these babies are NICU graduates.  Both have been through a lot of pokes and prods, tests and scans.  And both of these babies continue to exceed their doctor's expectations.   

There were a thousand precious moments like this one.

We hoped that they would be able to teach each other a thing or two.  While Aurelia still struggles with rolling over and being on her tummy, Owen struggles with speech.  Aurelia has always been very vocal (although she hasn't said any words yet).  And Owen loves tummy time and rolling over.

Owen demonstrated rolling over, and we had to tell them to keep it rated G.  

It was also great for Bethany and I to compare some mom notes.  Our two little ones do so many of the same things.  We felt encouraged to know that someone else is on a similar track.  And we were able to talk about a lot of the processing we've gone through as parents of such special kids.  

Needless to say, our little ones hit it off quite well.  And I can't tell you how neat it was to see Aurelia and Owen play with each other.  It's hard that her new little friend lives so far away, but I know we'll make a point of getting them together as often as we're able.  

National Hydrocephalus Awareness Month!

Well, it's' September.  Welcome to National Hydrocephalus Awareness Month.  Readers!  Take heed!  Be aware!  I know that you're all familiar with this incurable, life-altering brain condition because I talk/write/nag about it all the time.  But I feel it's part of my responsibility as a mother of a hydro baby to let people know about this largely unfamiliar (but very common) condition.

I could tell you all the information about shunt failure, possible complications, developmental disability and delay, yadda, yadda.  And NONE of this stuff should be "yadda, yadda" because it's all very serious.  But it's all a part of the daily life of families affected by hydrocephalus, which means that very serious becomes very normal (and a little "yadda, yadda").  I hope that many of you know a lot of the little facts about hydrocephalus since you read this blog.  And I don't want to become too redundant by constantly writing and talking about the same thing.  I don't want you to stop reading my blog because all I talk about is hydrocephalus.  It's a very big part of our family life, but there is a lot more to Team Hawk.  So, instead of throwing a bunch of facts at you today, I'm going to sprinkle some in here and there throughout the month.  I'm also going to try and show you what our family and other families are going through.  My hope is to give a better picture of what day to day life looks like with hydrocephalus.

Here's how we're dealing with hydrocephalus today:
Guess where we are right now?  Aurelia and I are in North Carolina for her final stem cell reinfusion at Duke.  We traveled the day that Hurricane Irene hit, which meant cancelled flights and a long day of travel.  But we're now drinking sweet tea and eating grits and getting lots of love from Mamaw and Papaw Hawkins.  This alternative medical treatment is one of the few things we can do to help give our baby an edge.  You can read more about cord blood infusions here, or read about our previous experience at Duke Children's hospital here, here, or here.  We are prayerful, hopeful, and excited to see the results of next Tuesday's infusion.  Please pray for a smooth appointment, for few pokes, and for patience. . . these appointments always seem to take a lot of patience.