Friday, September 30, 2011

Every Day Miracles!

Meet Wendi from Every Day Miracles!  This woman sure can write.  Her posts are beautiful, honest, challenging, and encouraging.  This woman has brought me to tears multiple times.  The transparency with which she tackles some of life's most difficult topics is an absolute gift.  And, this might sound funny, but her blog is the only blog I read that gets a song stuck in my head.  After reading her posts, I go throughout my day singing the song Mighty To Save.  If I were more tech savvy, I would have the song playing on my blog while you read her answers.  You'll have to settle for a link to the lyrics.  Please enjoy this wonderful interview.  I am humbled and honored that Wendi participated in the hydro mom feature.

Tell us about your family.  If your child has multiple diagnosis, feel free to share them.  My husband and I have been blessed with 5 amazing boys. Our first pregnancy was twins, and our identical twin boys were born 15 weeks premature. Our firstborn, Joshua David, only lived here on this earth with us for 10 short days. Our surviving twin, Caleb Mark, is now 8 years old. Since our twins were born, we have gone on to have three healthy, full term pregnancies. Jacob Michael is 6, Noah Benjamin is 4, and Malachi Joshua will be 2 next month.

Caleb was a completely healthy little boy at birth. Every issue he faces is a direct result of extreme prematurity. He had a grade IV interventricular hemorrhage when he was three days old. In “normal people language” here is what happened: Because it was far too soon for Caleb to be outside of the womb, his body experienced shock on many levels. One of the dynamics of that was a severe brain bleed. The bleeding in his brain blocked up the normal drainage system that our body is designed to do. Cerebrospinal fluid surrounds the brain and circulates throughout our system. Caleb’s cerebrospinal fluid began accumulating around his brain, and stayed there. Blood clots hindered this fluid from draining as it is supposed to do.

Tell us about the moment you were told your child had hydrocephalus. We were facing many, many things at the time that the hydrocephalus diagnosis was given. I don’t think it really sank in until much later. Honestly, it was one of the least of our worries – as we were just begging God for Caleb’s life at that time.

How has hydrocephalus affected your daily life?  Maybe give one "real life" example. I guess I don’t think of hydrocephalus as affecting our life so much, as having a child with a shunt affects our life. Caleb’s shunt was placed when he was around 3 months of age. It, among many things, saved his life. Having a child with a shunt is such a double edged sword. J It is a miraculous tool that is a solution to a very dire problem. And yet, living with the daily “What if’s” of shunt failure has been a long road to travel.

Honestly, now that Caleb is 8, and quite healthy, I do not think of the hydrocephalus and shunt on a daily basis. – Probably not even on a weekly basis. It is a part of our life, and I no longer fear it.

Share a moment when you were frustrated or discouraged. I faced discouragement when we heard the words from a doctor, “It is not if the shunt will fail, it is when.” I hated to think that I would have to daily be worried about my child’s brain. I hated to think that my sweet little son would have to face a lifetime of brain surgeries. Fortunately, as I said in the previous question, that is not how this has played out for us. Every year we adjust more to our life with Caleb’s medical issues, and things seem to become easier and easier.

So far Caleb has had one shunt revision. He was four, and it was a scary time. We learned a lot form that experience. We know more of what to look for. We aren’t as fearful, as we learned that we do have some time form when the initial signs of shunt failure present, to getting him to a doctor.

Share a moment when you found joy or hope.  How could I ever break it down to one moment? Caleb’s entire life has been joy and hope. Many, many times during his first year of life, we came very close to losing him. Our hope and Joy is in the one who created Caleb, and He has proved faithful over and over by answering our prayers and granting miracles that only He can perform!

One specific moment that I can remember as being very tearfully hopeful, and full of joy, was when Caleb took his first unassisted steps at age 4. He still most often uses a walker to aid in his walking, but he can walk across a room unassisted, if he is in the right mood. J Watching him do this for the first time was incredible! We had been told by so many doctors that this may never be a reality for Caleb, and it was with tears of joy that we saw that proved wrong.

What do you do to keep your sanity?  How do you take a break? My husband Dave, is very involved in the care of our boys. He has a special bond with Caleb. Dave knows me very well, and quite often steps in to help me out when he senses that I am overwhelmed. My mother-in-law, Arlona, also has a special relationship with Caleb and helps out often. There are days that I am “done”, and definitely need a break! I am blessed to have some wonderful outlets, such as photography, writing, and volunteering at a local pregnancy resource center, which really helps me to be the best mommy that I can be!

What advice would you give to a family who has just received a new diagnosis of hydrocephalus? Number one: pray. This is not an easy road. You can not do this on your own. God is waiting there for you with open arms. He is the God of all comfort. None of this is a surprise to him. He loves you.

Secondly: It Will Get Better. It will. Some days you will not feel like that is true. Just believe it.

Also, you will learn more from this child than you ever thought possible. Open your heart to this.

And – you can do it! Really, you can.

How do you deal with difficult questions from onlookers? This is hard. It is hard to be gracious when your inner “mama bear” wants to growl everyone away. J I have tried to find a simple standard answer that I give out to people’s questions. For me it is usually, “Caleb was born too early, and was very sick when he was a baby. He has a hard time walking, but he is doing really great! We are so proud of him!”

Simple, answers question without going in to deep detail, and upholds his dignity.

What is one thing you wish families with typical situations realized about families dealing with special needs? Well, we are really all just the same. We all have difficult things that come into our lives and we do what we have to do. I am neither a saint, nor a slacker. Neither are they.

What is your dream getaway (either family, couple, or by yourself. . . or all three)?  Well, I have been dreaming of going on a cruise with my husband for a few years now. Someday…

What is your child's favorite toy/therapy tool? Caleb is very tactile. Because his brain bleed was in the left side of his brain, the right side of his body is very weak, and doesn’t cooperate very well. We started doing occupational therapy when he was very young, to encourage feeling on the right side of his body. We would give him things to touch and different textures to feel to try to “wake up” his right hand. He now will not go anywhere if he is not holding his “chain”. He loves the feel of smooth beads or a little chain in his hand.  We have several sets of beads and chains on hand, because if he loses one and we don’t have a back up, we are in trouble!

What is your favorite coffee (or coffee alternative) drink? Yes, coffee. J I like it. I need it. It is my friend. Right now I am loving Starbucks pumpkin spice latte, because who doesn’t love a wonderful fall drink when it starts to get chilly outside? I also really like caramel macchiato. And crème brule. Who am I kidding? I like it all. Bring on the coffee.

And just for you:
Your writing is beautiful and transparent.  Through tremendous grief and joy, you have welcomed your readers along for the journey.  Please share your reasons for being open and honest about your struggles and triumphs.  There is a song by one of my favorite Christian singers, Natalie Grant, called “Perfect People”. The song states that, “There’s no such thing as perfect people. There’s no such thing as a perfect life. So come as you are, broken and scarred, lift up your heart, and be amazed; be changed by a perfect God.

I’m quoting those lyrics because they help me explain part of what I love about authentic blogging. I tend to think that “everyone else” has it all together. Everyone except me. By writing though our “real” life, I hope to convey that we are all in this together. NONE of us have it all together. That we all have struggles and joys. Yes, having a sort of, “open book” life can be invitation for criticism and other problems arising, but for the most part it has been a wonderful way to be real, to minister to others, to make some wonderful friends, and share our life.

Through my blog I have met many preemie moms, hydrocephalus moms, mom’s who have lost babies, and mom’s of special needs children. What a great way to encourage one another on this tough journey!

I also write to process. Many of my blog posts have been just me, alone in a room with my computer, typing like crazy, trying to process life. Often while I am typing, processing, the rest of the world disappears for a few minutes.

If any of my words can encourage and build up, even one other person, than I would consider my self very, very blessed!

Wednesday, September 28, 2011

Happiness, Hopefulness,and Halfway There

Today is a big day.  Today I am officially 20 weeks pregnant with Baby Hawk #2 (the sequel).  Yep, this baby is halfway done, I'm halfway through the pregnancy, and I'm finally starting to believe that there actually is a little person in there.  The nausea and vomiting for the first 17 weeks didn't convince me.  The tightening waistband didn't convince me (although I can still fit into my regular jeans, wahoo!).  The early ultrasounds, appointments, and aches didn't convince me.  But now that I'm feeling the little kick, kick, kicks, I'm a believer.

Don't worry.  I'm not one of those moms that could be featured on that show where women find out their pregnant in the delivery room.  I just have a cute little distraction that takes up most of my pondering time.  So, I am constantly reminding myself, "Oh yeah, you're tired, hungry, sick, weepy, irritable, etc because you're pregnant." 

Of course, everyone wants to know if we are going to find out the gender, and do we have a feeling either way.  Yes, we find out on Monday.  No, I don't have a feeling either way.

I have to admit that there is a small amount of fear and trepidation coursing through me while we wait for this appointment.  Although we didn't find out about Aurelia's hydrocephalus until a later ultrasound, I always feel a bit of uneasiness in that dark, little room.  We've received a lot of bad news in ultrasounds over the years.  I guess that I've seen in a very real way that the purpose of the anatomy scan isn't just to tell excited parents pink or blue.  And although I'm looking forward to knowing, I'm also looking forward to seeing this little one's heart, lungs, bones, and brains.  

It's funny how perspectives shift.  When I was pregnant with Aurelia, long before hydrocephalus entered the picture, I would tell people that I'd be happy with either a boy or girl.  I'd be happy with a healthy baby.  Isn't that what we all say?  But here's the crazy thing.  After I found out that I was having a baby girl with an incurable brain condition, I was still SO happy.  I was scared and worried, but excited to meet our little lady.  As she would kick around, I would smile (sometime with tears in my eyes) and dream about the future of our family.  And I realized that I had confused happiness with hopefulness.  Saying I would be happy with a healthy baby was such a conditional statement.  And happiness that's based on conditions is very fleeting.  Of course I was hopeful that my baby would be healthy.  But when I found out our baby wasn't healthy, my happiness and anticipation only grew knowing that she was the baby that God had intended for Joey and me (hydrocephalus and all).  Seeing the absolute joy she is now, I can't imagine being any happier.  Although I think adding this next little Hawk Baby to the team will only up the joy factor in our home.

So, here I sit, contemplating big appointments, big news, big deals, and the little big sister currently napping down the hallway.  I am so hopeful, I know I'll be happy (even on rough days, there are still moments of joy!), and I'm SO glad to be halfway there!  

Monday, September 26, 2011

We're All Just Seeds

Meet Jen.  I have thoroughly enjoyed getting to know Jen threw the hydrocephalus community, and I can't wait to hear more of her story.  For some reason, her family just exudes fun, happy times.  It could be that her kiddos are so stinking cute and Jen is so stinking good at posting pictures of them living life.  And Norah is an inspiration to me of the possibilities for Aurelia.  Norah is a year older than Baby A and one year ago, she was doing pretty much the same things that Aurelia is doing now.  Fast forward a year and this kid is starting  to take steps!  WHOA!  And she's cute as a button in her little walker.  I can't imagine Aurelia walking in a year. . .but Norah has given me hope!  Stop by Jen's blog, We're All Just Seeds, and read up on this dynamic fam.

Tell us about your family.  If your child has multiple diagnosis, feel free to share them.

I’m Jen (Jennifer, Jenny, Mommy or hey you). I am happily married to my husband, Jason, who along with God, gives me a firm foundation. I am proud to be the mommy to Grant (3), Norah (2) and Mason (3 months). Norah was diagnosed with hydrocephalus during my pregnancy.

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

When we were told at our 19 week ultrasound that there was a concern, I honestly didn’t take it that seriously. Our baby girl had been so active throughout the ultrasound that they were having a hard time getting a lot of measurements. My OB was very reassuring and said to do this next step to be sure. So when we went to that level 2 ultrasound to see what was going on, I was devastated. I remember crying, yet trying to be strong at the same time since we had brought our then 12 month old son. It will always be one of the worst moments in my life, but it serves to add a bit more sweetness to the good times.

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

Everyday I can’t help but be aware of Norah’s behavior and shunt – I don’t think we go through a day where there isn’t an accidental bump to her head that brings concern. Norah does not stand or walk independently, so getting her and a baby somewhere fills up my arms. She does have a walker, but our house is old and small and does not accommodate her walker so we have to go places for her to really use it. We are slowly working to get our house ready to sell to find a Norah friendly house.

Share a moment when you were frustrated or discouraged

Norah has difficulty chewing foods and doesn’t make the growth chart for her weight. We work with her on developing chewing skills but it is something she struggles with. It gets frustrating when I see her chew a piece of food then spit it out because she doesn’t know how to finish chewing it or swallow it. Something that comes so naturally to most is such a struggle for her. I think she would thrive even more if she was getting all the calories she needed everyday.

Share a moment when you found joy or hope

One of the most magical moments in my pregnancy was when my husband watched my suffering with what if we our little girl doesn’t make it. I wasn’t preparing our house for her, tags were left on clothes and receipts attached to items just in case. One night he came to my rescue and told me that we needed to be ready for our little girl. He said to take the tags off. Even if we lost our little girl, we would have more children, and these would be a gift to them from her - a very healing night.

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

Once a month, I go on a girl’s night out with some friends. For awhile, I had a farm (on Farmville of course, but that has withered). I have also taught myself to crochet. I enjoy getting lost in my thoughts while making the stitches.  

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

 Try to not get caught up in the “what if’s” of the diagnosis. Yes it’s important to think of those things but don’t dwell on it. Enjoy your precious gift, those moments are fleeting. Also make sure they have doctors that they trust, and work with them.

How do you deal with difficult questions from onlookers?

I’m still figuring this one out. Because Norah is so small for her age and overall is doing so great, when people see her out with her walker they think it’s the latest and greatest equipment to teach you child to walk. I get a little frustrated, but try to nicely explain that she needs it and why. I am always happy to answer questions because I won’t keep my daughter away from experiencing all life has to offer her.

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

I don’t feel that we are all that different, yet I know we are.  We have a few more doctors’ appointments to go to and we don’t get to go to dance class; instead we go to therapy. It also take a bit more planning to go somewhere – will it be accessible for Norah’s walker or do we need to take a stroller for her, will there be food that she can eat…

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

My husband and I have always wanted to go see Greece and Italy together. We were actually looking into going on a tour to do this when I found out I was pregnant with Grant. It went on the back burner but I still dream of getting there someday and now it includes bringing our kids with us.

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

While I’m always changing up my drink, my go to favorite is a soy chai tea latte.
You have three kids, one with special needs, and work outside of the home.  Yet you are so on top of things!  How do you juggle it all?  How do you stay on top of appointments, parenting, housework, marriage, and still add so many elements of fun to daily life?

Ha! This makes me smile, I was just saying to Jason that I feel like I get two pieces of the puzzle in place then look down to see that other pieces were moved out of place. I work in an emergency department, so time away at work is busy, often intense and focused. It helps me recognize that balance in one’s life is important as well, it helps to keep perspective on what these important things are and make them a priority. Nothing in life is certain so I try to make the most of it, my kids are lucky enough to come along for the ride J

One more thought…I have recently been asked by a few people how did you decide to have another baby after Norah? After having Norah many people thought we would be done having kids. We had a boy and a girl, the American dream right? Also with Norah’s diagnosis of hydrocephalus, people assumed it would scare us off from having more kids. Jason and I always wanted to have 4 or 5 kids, we would say we’ll start with one, stop at five and end up somewhere in the middle. So for us it wasn’t a matter of if but when to have another baby. I am glad that we choose to have another baby after so close to Norah. Norah and Mason are 22 months apart. It gave us enough time to see where Norah was going to be developmentally and prepare for that.  It was also not so far apart that it would be difficult changing up our routine or long enough to let fears build up that would stop us.

Thursday, September 22, 2011

Bird on the Street

Meet Katy!  I love reading Katy's blog Bird on the Street.  Some people are able to share life's ups and downs with such eloquence, honesty and grace.  There is something that's just so real about the way Katy writes.  Many, many times I find myself saying, "Yeah, that's exactly how I feel."  Please check out her blog, and I hope you enjoy her answers!

Tell us about your family.  If your child has multiple diagnosis, feel free to share them.

Let's see! Charlie, my oldest, is the one diagnosed with hydrocephalus. It's part of a constellation of diagnoses he has that all involve the brain--cerebral palsy, hydrocephalus, and epilepsy. I gave birth to twin boys in June who were a tad premature. My husband is an engineer who works very hard so I can stay home with all three of my guys. 

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

It was actually several months before we knew definitively that Charlie had hydrocephalus. The doctor showed me the scans of his brain and I knew that we needed to have surgery. Even so, I did a lot of crying and soul searching in the days before surgery. 

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

I actually don't believe that hydrocephalus has affected our daily life, but it does come into play on a fairly regular basis. With any illness, it's always in the back of your head that it could be shunt failure. We also have to make special plans for hurricane season. While we are not in the mandatory evacuation zone, we always plan to evacuate because we would hate to be trapped in our homes and have an issue with the shunt. 

Share a moment when you were frustrated or discouraged

I think it's always frustrating know that there's something in your child's body that could go wrong at any moment. It feels like a ticking time bomb from time to time.

Share a moment when you found joy or hope

Actually, I was blessed to meet a young man with spina bifida/hydrocephalus one day while we were waiting for an appointment with our neurologist. He was in a wheelchair, but he was an articulate high school graduate with friends. It was wonderful to see how much he'd managed to accomplish with his life despite having a diagnosis that would frighten many. 

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

Well, blogging is definitely a wonderful tool for keeping my sanity! I take lots of little breaks--my husband lets me sleep in on Saturday mornings, my MIL babysits. I'm very lucky to have a supportive family who helps me stay sane. 

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

I would tell them not to spend too much time worry about the future--it will get here soon enough. Instead, focus on what needs to be done now, and enjoy the baby period because it end far too quickly.

How do you deal with difficult questions from onlookers? 

I always try to answer questions--I believe understanding breeds acceptance. 

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

I just hope people realize that a disabled child is not a tragedy. I love my child as much as anyone and I think that our lives are different, but not less.

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

We have a beautiful time share on a beach in Florida and that is definitely my dream getaway--I'd stay for weeks if I could. But if I'm dreaming, I'd like to bring a sitter with me!

What is your child's favorite toy/therapy tool?

Definitely his iPad! We're still working on getting him to use it as a therapy tool and not just a toy, but we're already seen major improvement in isolating his pointer finger as a result of using it. He's also gotten a lot better at asking for help, which was actually a goal for his first year of preschool.

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

Gosh. I drink Diet Coke in the morning and water the rest of the day--not terribly exciting.

A theme on your blog seems to be acceptance, both personal and from onlookers.  How has parenting Charlie challenged your expectations for parenting?  What are some ways that you have sought acceptance and understanding from those around you?  

Maybe I'm a pessimist, but I always expected parenting to be challenging, and it is. What I have found is that it's challenging in ways that I didn't anticipate. Charlie has taught me that it's impossible to look into the future. It's impossible to know what lies ahead. So instead of worrying about those things, it's best to just face the right now and let the future take care of itself.  

Do the Puyallup

Yesterday's plan was to spend the afternoon cleaning the house.  How lame is that?  And with the beautiful almost fall/not quite summer weather, who wants to be indoors?  SO, Aurelia and I hopped on the hay wagon and headed to the Puyallup Fair.

For all you non South Sounders, the Puyallup Fair is a big deal kind of fair.  We're talking one of the top 10 BIGGEST fairs in the country.  I had no idea how big it was until I went to the Louisiana State Fair.  It was so itty bitty compared to the Puyallup.

I haven't gone to the fair in 10 years.  Nothing like a decade break to bring on a massive onslaught of memories.

My first concert was at the Puyallup back in fourth grade: Frankie Valli and the Four Seasons.  I'm pretty sure I was the ONLY fourth grader in America who had all the Four Season albums.  I was/am a big fan.  I remember being shocked that kids at school weren't jealous when I reported in Ms. Kimizuka's class the next day that not only did I get to stay out past 8 on a school night, but I got to see the Four Seasons!

The first time I was puked on was at the fair.  Now that I'm a mom, this is a fairly regular occurrence.  But when you're in high school and your friend has had too much licorice and root beer before The Octopus, let's just say it wasn't a pretty picture.  I was mortified.

And, of course, my first "date" with The Hawk was at the fair 10 years ago.  I actually got all bubbly and giggly when we talked by the Younglife Teriyaki Booth.

I'm still so silly for that guy.  Just thinking about him makes me blush a little and get the same 19 year old girl grin.  He's my favorite.

We added some new firsts to the list yesterday.

Baby A was a little overwhelmed at times by all the noise, sights and smells.  But she was all smiles for most of her first fair.

And my sister-in-law, who writes over at Something New, tried a deep fried peanut butter cup for her Something New for the day.

I'll let you head on over to her blog to read about her experience with a steaming hot fried chocolate cup.

And I had my first wake up in the middle of the night 'cause I need a tums moment.  My stomach is not as stalwart as it used to be.

Yep, we did the Puyallup in all it's elephant ear, petting zoo, dairy samples, YL BBQ, hobby barn, mutton busting glory.  Can't wait for next year!

Tuesday, September 20, 2011

The Bawcum Family Blog

Meet Desiree'!  Desiree' writes at her family blog about their daughter Nola's journey with hydrocephalus and hearing loss.  I love her purpose of providing "hope and inspiration" to families with similar diagnoses.  And how could you not be inspired by Nola's sweet smile!

I hope you enjoy reading about this precious family and their journey.

Tell us about your family. If your child has multiple diagnosis, feel free to share them.
My little family consists of Jonathan (Daddy), myself (Mommy), and Nola (sassy pants) with two dogs and a cat thrown into the mix. Nola is three years old, but will turn four (I can’t believe it!) on October 9. She has hydrocephalus and profound bi-lateral hearing loss.
Tell us about the moment you were told your child had hydrocephalus.
We were so excited to learn the sex of our little baby! We went into the ultrasound room expecting to walk out knowing if our baby was a girl or boy, but walked out instead with thousands of questions. Fear is the word that comes to mind when I think about that day.
How has hydrocephalus affected your daily life? Maybe give one "real life" example.
Jonathan and I are always watching for the “signs.” The one major thing that resulted from hydrocephalus was Nola’s hearing loss. Our morning routine consists of putting her “ears” on. She is completely deaf without her cochlear implants.
Share a moment when you were frustrated or discouraged
Nola had her shunt placement at 4 days old. She had her first revision at 10 months and then another revision at 20 months. You can see the pattern..every 10 months. Those first two years were rough because we felt like as soon as we were back into a routine our little Nola had to go back for brain surgery. With each revision, recovery got harder and harder on her little body.
Share a moment when you found joy or hope
A few months after Nola’s second revision we went in for another CT scan. When Nola was born, she was 25% brain and 75% fluid. At this scan, she was and is 99% brain. Her NS said, you can’t get much better than that! We rejoiced in this news and continue to rejoice!
What do you do to keep your sanity? How do you take a break?
I scrapbook and blog- although, now I am in grad school and both of those seem to have taken a back seat to grad school! Jonathan works on his CJ5 jeep. We also enjoy giving back- no matter what our circumstances; we want to help others who may face this too. I am on the Family Partners Council at LeBonheur Children’s Hospital where Nola has had all five of her surgeries. Jonathan is on the Board of Directors at Memphis Oral School for the Deaf- Nola’s school.
What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
Arm yourself with information. After we received Nola’s diagnosis, Jonathan dove head first in finding the best doctors, hospitals, and any other person/organization that could help our sweet Nola. Find a support group- whether it be online or in person. There are people who have been in your shoes.
How do you deal with difficult questions from onlookers?
People do not know Nola has hydrocephalus unless we tell them. The only noticeable effect from the hydro is her cochlear implants. Most people do not even notice those, because they are too busy listening to her ask them 1000 questions. We were “lucky”- Nola has had not developmental delays from her hydrocephalus with the exception of speech- which she is quickly catching up at our amazement.
What is one thing you wish families with typical situations realized about families dealing with special needs?
I am not afraid or offended if you ask questions. I would rather you ask questions as oppose to stare at those “blinking” things on her ears! We want the same exact thing you want for your children- go to school, graduate, college, marriage, success in life, to be loved.
And just for fun:
What is your dream getaway (either family, couple, or by yourself. . . or all three)?
I would love to go to a Sandels resort with my husband!

What is your child's favorite toy/therapy tool?
Nola LOVES play-dough!
And since we're from Seattle:
What is your favorite coffee (or coffee alternative) drink?
Carmel frappacino from Starbucks in the summertime. In the winter, anything made from Keurig!
And just for you:
Nola has Cochlear Implants. Can you share with our readers what cochlear implants are and how they treat her hearing loss? 
Cochlear implants are like bionic ears. There are two major parts to her cochlear implants: the behind the ear processor with the magnetic coil and the inside her head part. Her ENT doctor placed a small round piece with flexible wires behind her mastoid bone and into her cochlea. Our cochlea has little hairs that pick up the sound – that’s how we hear. Nola’s cochlea doesn’t work- these flexible wires make up for that. She has a small piece she wears behind her ears that pick up the sound and “transfers” it to the wire things inside her head.  As long as the magnetic coil is connect to the inside part she can hear. With these implants, she can hear anything you, as a normal hearing person, can. She can talk on the phone, dance to music, hear us say I Love You and say it back! She cannot wear her implant swimming- other than that she has these on every waking hour!

Monday, September 19, 2011

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.

Friday, September 16, 2011

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.