Monday, October 31, 2011

The Blue and The Green

It all started Thursday evening on a drive home from Port Orchard.  The Hawk was lamenting that no one could watch the Sounders playoff game with him on Saturday.  For those of you who don't know my husband, he LOVES football (soccer), and he LOVES the Seattle Sounders:

The Hawk in Kabul, Christmas morning 2008
We're season ticket holders, Joey goes to or watches every game, and he no longer likes traveling to Portland (unless it's for a game) because it's home of the Timbers.  So, watching the game was a definite, but games are better enjoyed with friends and fellow fans.

15 minutes later when we drove into our garage, we had decided to try and go to the game instead of watching it.  Yes, go to the game. . .  the game against Real Salt Lake, in Salt Lake City.  My stipulations were that he had to organize everything (childcare, tickets, flight, hotel, etc.) and that the only thing we'd have to pay for were the tickets to the game and food.  His stipulations were that I wouldn't cry or have a mommy meltdown about leaving Aurelia overnight for the first time.  So, if we could work out a hundred little details in the next hour or two, why not take a last minute trip to a place we'd never been for a soccer game?

Less than 48 hours, Aurelia was safely sleeping at Nono and Yaya's (my parents) and we were boarding our 7:00 AM flight in Seattle.

Here are our soccer weekend highlights:

-The Red Iguana

We googled places to eat in SLC, and The Red Iguana was highly recommended several times.  And despite walking over a mile and getting lost on the way, this place was absolutely worth it and absolutely legit.  If you ever find yourself in the area, go there.  

- Getting Lost.  Every guidebook and website I read said that navigating Salt Lake City is confusing.  Every guidebook and website was right.  We got lost multiple times and thoroughly enjoyed simply wondering around the city, seeing the sights when we bumped into them.  Since we had no must see places, we were able to just take in whatever crossed our paths.

- The ECS.  We sat with the Emerald City Supporters at the game.  The Sounders have the biggest and best fan base in the MLS.  We're talking 36.000 fans per game versus 20,000 or less for other teams.  And the ECS are not fans, they are supporters.  Of course, a win is always a welcome thing, but the ECS view it as their mission to support the Sounders regardless of what is even happening in the game. They stand and sing and wave their tifo the entire time.  In fact, it's a requirement to stand and sing if you're sitting with the ECS.  We met up with the ECS at a bar in downtown for the prefunk.  At about 5:30 the singing began as the ECS marched to the light rail and sang the whole way to the stadium.  And then we stood and sang for the rest of the game.  Despite a pretty miserable 0-3 loss, we supported our Sounders loudly and proudly.  There were 135 ECSers at the game, and I'm pretty sure that our section was heard throughout the entire stadium.  It's definitely the way to go at away games.  They run a pretty slick operation.  Everything is well planned down to security and working with the opposing team's venue to ensure a safe and rowdy environment.  So, if you are a Sounders fan/supporter, or just like to try new and fun things, I highly recommend sitting with the ECS at least once.  Disclaimer: I don't recommend sitting with the ECS if you're taking your kids to the game.  As they state on their website if you insist on bringing your kids, they would have to be able to handle "colorful language and folks jovially singing and drinking."  We don't sit with the ECS at home games for this very reason, although Joey is technically a member of the club.

-Getting Sick.  Yep, that's right.  My first night of baby monitor free sleep, and I spent a good hour plus throwing up in the middle of the night.  At the time, it wasn't very fun.  But I have to look at the irony of the fact that I was probably the only person sitting in the ECS section without a beer in hand singing songs like "Emerald City we are here! Supporting Sounders drinking Beer!" and I was probably the sickest of them all at the end of the night.  I guess that's what I get for eating onion rings at 11:30 PM on my super sensitive, pregnant stomach.  And despite being sick, it was amazing to get a full nights sleep and wake up when I wanted to rather than when Aurelia wanted me to!

-Friends.  I love traveling to places I've never been and being able to see friends that I hardly ever get to see.  In this case it was one of my old roommates and favorite people, Natalie Sanchez (eat your hearts out, Forest Fire women).  Since our trip was so last minute, I didn't know if it would work to see my dear friend.  But we made it work.  I love seeing friends you haven't seen in years and years, but when you sit down for a cup of coffee it feels like just yesterday you were trying on her Tae Kwon Do uniform from 7th grade.  And even though it was brief visit, it was absolutely worth it!

Nat and Evangeline

- Joey. Can I just say that I love my husband?  I mean, of course I love my husband.  I love him everyday and every moment.  But getting those times away from the day to day reminds me of why I fell for this guy in the first place.  We have so much fun together.  Even when we're absolutely lost in a city we've never been to with no idea where we're going.  And we can talk about anything and everything, for hours and hours.  This weekend was such a refresher for us, even though it was a whirlwind.

And now we're back.  So happy to have Aurelia back in our arms, and happy that we can still have spontaneous, super fun times.

*Big shout out to my parents who took Aurelia for the night at the last minute.  She loved being with her grandparents and I don't even think she noticed we were gone.

Friday, October 28, 2011

Still Here. . . well, kinda

I know, I know.  I have this tendency to drop off the face of the blogosphere.  Just when you think I'm regularly posting, poof!  I'm gone!  There's only one person to blame for this, and it's not me or Baby Hawk (or Baby Hawk #2, for that matter).  Nope, I always have a tough time blogging when Joey gets home.

In the past three weeks since he's been home we've had visitors from Texas and Afghanistan (and some Nebraskans coming next week).  We've traveled to Toronto to meet our adorable new nephew.  We've gone to the cabin.  And we've done a ton of housework, organizing, getting ready for Baby #2 type stuff.  We've drank lots of coffee, stayed in our pjs all day, been way too busy, but also had loads of down time, and had many adventures (with more to come!).

Plus, Aurelia's added Occupational Therapy to her weekly calendar.  She also cut her first two teeth!  And she's slowly starting to scoot on her bottom to get where she wants to go (mainly in circles).  Our Physical Therapist doesn't want her to scoot, our Occupational Therapist says it's unavoidable.  We're just excited that she wants to move!  She's also started to tolerate tummy time a little more.  And she'll even roll from her back to tummy about once a day.  A month ago, I felt like our Early Intervention goal of seeing her crawl by 18 months was such a long shot.  It's still a lofty goal, but I think we might just eek in an army crawl by then.  The important thing is that we're seeing progress, however slow that progress might be.

My favorite part of Joey being home is the mornings.  Our daughter is an early riser.  We are not.  We compromise with her by bringing her into bed with us to snuggle each morning at 6:30.  Of course, to her snuggling means kicking one of us and putting her fingers up our noses.  I love this special part of our day.  I told Joey it feels like Christmas every morning.

There's a brief little look into where we've been for the past few weeks.  Pictures from Toronto and the cabin to come shortly.  In the meantime, I have to prepare for Joey and my last minute getaway this weekend.

Wednesday, October 12, 2011

The Andersen Family Blog

Meet Josephine!  There are many hydro mom bloggers out there (as you've seen from these features).  And over time, we develop a sort of community.  I feel like Josephine is one of the rockstars of the hydro mom community.  Not only has she been sharing her story for years, but she is a go-to resource for information on alternative therapies and research.  This lady does her homework!  You can read about her family at The Andersen Family Blog.  Also, check out her website Beating Paths.  It's a great resource for any parent of a child with special needs.  And enjoy her insightful answers to the interview!

Tell us about your family.  If your child has multiple diagnosis, feel free to share them.
My husband, Gabe, is from Utah, and I am from England, and we met and fell in love 9 years ago here in beautiful Virginia! Avery, our little miracle, is our oldest child. She is five and a half, and she has 2 younger brothers, Brogan (3) and Oliver (1). Avery has hydrocephalus due to a cyst in the fourth ventricle (Dandy Walker), and as a result of the damage caused by her hydrocephalus, she also has spastic diplegic cerebral palsy, along with some mild vision problems.
Tell us about the moment you were told your child had hydrocephalus.
My NP had set up an ultrasound for my 35 week check up, which she later told me was because at my 33 week check up, my measurements seemed to be a little off. So we went happily along to our appointment, excited to get another look at our baby. It was going great, and even when the technician said "Hang on a second, I just want to check something from your 20 week scan" I didn't think anything of it - I was just so happy to be seeing our baby! It was only when she said, "Well, there is one thing..." that I realised something was wrong. She explained the baby's ventricles were enlarged and it looked like she had hydrocephalus. It was like listening to a different language! I'd never even heard of it before. This was a Thursday, and they set up an appointment for us to see the specialists on Monday. We spent the whole weekend researching, and I think I spent the whole weekend hoping that they were wrong. I still clung to the hope that we would go in for our appointment and they would say there was nothing wrong with our baby afterall!! But of course that didn't happen, and in that doctor's office on that Monday morning was the first time I ever saw my husband cry.
How has hydrocephalus affected your daily life?  Maybe give one "real life" example.
Every moment of every day is affected!! We have been blessed that Avery has never yet had to have a shunt revision, but even today there is a worry in the back of my mind every time she gets sick with anything ..."Is it her shunt???" The daily struggles come from the cerebral palsy which the hydrocephalus created. Avery is a very intelligent and motivated little girl, and sometimes it seems like all I do every day is try to think of ways to make life less of a struggle for her - to make it easier for her to get up on her feet and walk! Most of our activities and games are planned with therapeutic needs in mind :)
Share a moment when you were frustrated or discouraged
I don't feel that way very often, and when I do, it's almost always because of health insurance!! When Avery's progress in traditional physical therapy had plateaued a couple of years ago, we started researching other options, and ever since then health insurance and medical costs have been the bane of my existence!!   
Share a moment when you found joy or hope
Just one???!???!?!!! Gosh, Avery IS joy, so it's hard to narrow it down....! But I suppose I'll just tell you a recent one. Avery had SPML surgery on her ankles and hamstrings 3 weeks ago. The same day of her surgery, it was just a couple of hours after she woke up, she was sitting on the couch looking at her casted legs, and she wiggled her toes. That was practically impossible for her before surgery, and it was almost effortless for her immediately afterwards! The look on her face was beautiful :) 
What do you do to keep your sanity?  How do you take a break?
I blog. I read. I try to make time for regular dates with my husband :) I relish in my solo trips to the grocery store :) If I need to, I sit down and relax after my kids are in bed, even if there are still toys all over the floor!  
What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
You are probably seeing only the worst possible scenarios right now. The biggest thing you cannot even comprehend is the joy your child will bring you, as well as the entirely new and wonderful perspective. You will learn to appreciate life in all its tiny and beautiful details. You will relish in the things which other parents complain about: My child is impossible to keep up with! My childnever stops talking! My child is always running away from me at the store! *Isn't it GREAT??* You will learn and grow and love in ways you could never have imagined. While there will be times that your heart will ache for your child, your own life will be more amazing, and your world will be more miraculous because your child is in it. 
How do you deal with difficult questions from onlookers? 
The main thing is that I make it positive. I reject pity or sympathy, ESPECIALLY when Avery is with me, because she is anything but pitiful or pathetic, and I resent anyone's implication that she is. I actually don't mind people asking questions though - I actually like it! What I don't like is when people shush their children's questions. And there are a lot of times when I have to suppress the urge to poke people in the eyes - when did parents stop teaching their children not to stare?? And it's not just children! If you have a question, go ahead and ask, don't stare at my beautiful little girl as if she's a freak!!
What is one thing you wish families with typical situations realized about families dealing with special needs? 
I think that "normal" families can only really imagine the "hardships" related to raising a special needs family. What they really can't comprehend, and are missing out on, is the joy we are blessed with. We don't need or want your pity, and when you pass us on the street, we wish you could see our child for how amazing she is, not for what you perceive as lacking.
What is your dream getaway (either family, couple, or by yourself. . . or all three)?
Disneyland or maybe a cruise :)  
What is your child's favorite toy/therapy tool?
Wii and Kinect :) Also the smart cycle! 
What is your favorite coffee (or coffee alternative) drink?
Hot cocoa with whipped cream. And maybe a candy cane for stirring around Christmas time :) 
And just for you:
Avery has undergone some very cool and very different treatments and therapies, from hippotherapy to her recent Selective Percutaneous Myofasical Lengthening surgery.  How do you find out about this treatments?  What is the research process you go through in deciding what treatments to pursue?  And share what it's like to travel for treatment?  
Hippotherapy was very easy - our wonderful physical therapist was also involved with hippotherapy, so that's how we got into that one :) Everything else was more difficult. We first heard about Anat Baniel Method (ABM) therapy when somebody sent me Anat's book after reading my blog. They told me they thought it would be beneficial for Avery. Avery wasn't really making much progress in traditional PT anymore, so I had already started researching alternatives. I resisted ABM for a while, simply because there wasn't a practitioner nearby, and I knew it would be expensive. But I continued researching and asking questions - I looked into specialised massage therapy, cranio-sacral therapy, chiropractors...and some others, but I kept on coming back to ABM, and finally decided to give it a try. The more I read and saw, the more the philosophy made sense to me, especially with regards to cerebral palsy. And we started to see exciting progress pretty rapidly, so we have continued. It was one of our ABM therapists who put us on the path to selective percutaneous myofascial lengthening. Again, lots and lots of research there. The other surgical option we were debating was Selective Dorsal Rhizotomy with Dr Park in MO, which we heard about through news articles I think. We went with the less invasive option, and hopefully won't need to worry about the other one! 
Travelling for treatments does add another layer of stress. We see two different ABM practitioners - they live in close proximity to each other, but about 4 hours from us! In this post-op phase we are in right now, we (me plus the 3 kiddos) are going up there every other week for 5 days. Surgery in another state was even more nerve wracking. It turned out to be a great trip though - one that I think Avery will remember for the trips to the zoo, aquarium and museums as much as the surgery :) And my children are getting very good at long car rides!

I would like to mention a project called Beating Paths. ( In all my research efforts, the thing I found most useful was the testimonies of parents who had been there, done that. Doctors and practitioners can tell you all the clinical stuff, but it is the parents who see the day-to-day stuff and can really tell you how a particular treatment affected their child. That is why I recently started this project - because I really believe that we "special" parents need each other, and can help each other when we're having to make these difficult decisions. There are so many options out there.

Monday, October 10, 2011

Prayer Guardians

This last week we had some very special visitors come up from Texas.

When Aurelia was born, we knew that she'd have tons of people praying for her.  But we really wanted to have someone specifically, intentionally, and daily interceding for our little lady.  It was a no brainer to ask Cathie Lou and Walt Tehan to be Aurelia's Prayer Guardians.

We originally know the Tehans through their offspring and one our favorite friends, david taylor tehan.

. baller . 

Taylor and his wife Rachel are two of the most interesting, ultimate, and best people we know.  You can check out Tejano's blog for an education in style and music.  They currently reside in Beijing, China.  That's a long way a way.  We miss them.  Just another excuse to travel to the other side of the world.  In the meantime, we love seeing his parents.

When we lived in East Texas, we felt adopted into the Tehan family.  And for two Northwesterners who were often asked, "Y'all ain't from around here, are you?", feeling part of a family was supremely refreshing.

Cathie Lou and Walter were some of Aurelia's first visitors.  In fact, they flew up while she was still in the NICU.  They prayed for her and loved her well before she was born.  Making them Baby A's Prayer Guardians just made it all more official.  And it gives us all a great excuse to traverse back and forth for Lou Lou's brisket or PNW coffee, and (of course) time spent with little Lady Hawk.

It takes two Tehans to put pj's on Aurelia
Enjoying some Chihuly and coffee in Tacoma

Adventures down to the beach

We feel so blessed to have this family in our lives.  We have faith and confidence that part of the reason Aurelia continues to make forward progress is the answered prayers of the Tehans and the army of other Pray-ers they pass our updates along to in Liberty City, Texas.

Tuesday, October 4, 2011

Live Life in Wonder

Meet Kristen at Live Life In Wonder!  I have thoroughly enjoyed getting to know Kristen and her awesome family over the last few months.  She's one of those people that is just so easy to connect with.  I have dropped her emails numerous times with quick questions or when I need a little extra encouragement.  Her replies are always uplifting, even if they're just about day to day life.  She challenges me to be an advocate for my child's care, to think outside of the medical box, and to have fun with therapies and appointments.  Please enjoy reading about this lovely lady and her lovely family.

Q: Tell us about your family.  

A: Mike and I have been married for 7 years and we have two children.  Cayman (3 years old) and Kobe (8 months old).
Q: If your child has multiple diagnosis, feel free to share them. 

A: In addition to Hydrocephalus, Cayman has two other brain related diagnoses - complete absence of the Corpus Collasum, and bilateral schizencephaly.  Middle and inner ear malformations have resulted in a moderate hearing impairment.  She had a minor heart defect, as far as heart defects can go, called True Vascular Ring with a right aorta arch, where typically the aorta extends from the left side of the heart.  And she was born with a stomach/small intestine malformation called Duodenal Atresia.  She has colobomas, where the pupils of her eyes are not round but rather the shape of a key hole and other eye defects that have reduced her vision.  Plus she has bone malformations, and so on and so on.  She has a lot going on diagnoses-wise.  All of which the geneticist believes to be summed up by a specific gene mutation called Charge Syndrome.

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

A: “When I grow up I’m going to be a mom” I would say as a child.  It was a big dream of mine.  When I was finally all grown up, married, and smartly planning for this dream of having a baby, I heard the word Hydrocephalus at 20 weeks pregnant.  I thought I was losing my dream and the plans I had for myself as a mother.  Turned out those dreams were not crushed or lost, just altered in a way that surpassed the greatness of my imagination.

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

A: The most difficult part of Hydrocephalus for us has been the dependency on a device that can fail at any moment.  Cayman has had a total of 10 shunt related surgeries, with multiple malfunctions. During one of these failures, by the time we picked up on the signs, Cayman’s brain was already under so much pressure she declined fast, and the nearest hospital for her neurosurgery care is two hours away by vehicle.  She went into cardiac arrest and had no living pulse for two minutes before the local hospital revived her by CPR.  She was then flighted by helicopter and her life saved by an emergency shunt revision.  To know it is possible for those circumstances to re-occur any day is challenging.  I have had to learn to keep my worry in check, preventing it from paralyzing me in fear.  To recognize the areas where concern calls for some action from my part in the matter but knowing worrying is a useless draining of strength over the things I cannot control.

Q: Share a moment when you were frustrated or discouraged

A: Every illness when Cayman seems out of sorts there is always the thought in the back of our minds, is it a shunt failure?  Each and every time Cayman has vomited it’s urgent to decipher the cause of this symptom.  Most often we cannot do that alone without an evaluation from her Neurosurgeon.  We have made trips to the E.R. and at times gratefully learned it was simply the stomach flu but then spent hours fighting our insurance company to cover the bill.  Insurances are becoming more and more particular about emergency room charges and the policy is written that general illnesses are to be seen in a doctor’s office during regular business hours.  Vomiting falls under general illness and repeatedly we have had to explain to the insurance company why, in Cayman’s case, it cannot be considered general.  It could be a sign of something life threatening and must be evaluated regardless of the hour.  It has been frustrating fighting denied claims. 

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

A: Like all parents after receiving a serious diagnosis for their baby, there is a period of grief and readjustment the mind goes through.  There was a significant turning point for me in which I remember my mind stopped dwelling on what could have been and felt only the joy of my little miracle Cayman.  It was after reading a specific entry written by the Hydro Mom Lisa on her blog The Far Side of Complexity.  She had written about her daughter Elisabeth.  I cannot remember exactly how it went but it was something of this extent: “I do not regret knowing that kind of pain and heartache for it has made the joy all the more sweeter now.”  It was like a light going off in my brain!  Yes!  That joy!  I understood what she was talking about.  I have it!  I feel it!  And it’s there and taken in with such a deep measure of fullness all because my heart lived during a moment when it got to feel what it would be like without it.  It was the pain that bred deep joy in the small things, a lesson in not taking something for granted.  I cherish where that lesson has brought me. Therefore I could no longer see cause to complain.  I had been given a gift in which I am lucky to have learned it so early on in life.

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

A:  I write and I take pictures.  I use to scrapbook but after becoming a mother I found it to be time consuming and messy.  So now I blog. 

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

A:  By far I always find this to be the toughest question to answer.  I am by nature a better listener than speaker.  Believe it or not, coming up with the right words does not come as first nature for me.  And how one walks along this path of acceptance, whether it’s long and jerky strides, or short and blissful steps or maybe fast leaps ahead and then falling back some, I have learned there are many different ways of walking.  I am careful to stay away from words that tell a person how they should feel during their grief.  I recall hearing the advice from many to not worry.  I never found that useful. For instance, how does one do that when they learn their child is in danger?  That is a powerful emotion!  That’s like trying to stop a stampede with a single sheet of tissue paper.  Who ever has successfully stopped worrying simply because they were advised to?  Yes, worry is not of any productive worth but the most helpful tool I arrived at was to find that cathartic therapy for myself.  For me it was writing, taking pictures, and blogging.  I love the art of weaving words and pictures together to tell a story, and in doing so I set out to find the beauty and consequently discovered it in more places than expected.  It’s not so much about what I can say that is conducive as much as what I encourage a person to do during their journey that will help them see the brighter side of things. Because a grieving heart struggles to feel joy, and because joy does not come visiting without an invitation, it requires action.   

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

A: I first realize that if I am uncomfortable answering then they will be uncomfortable receiving.  In a society that says blend in, go with the crowd, stick with the trends, strive for what’s popular, differences can be intimidating.  But what brings warmth and acceptance?  Always a welcoming smile!  I smile to let people know it’s okay to ask questions.  I actually love it when they do.  It’s an opportunity for this proud mama to share her little miracle.

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

A:  Really I don’t see how we are that much different.  Yes we may have some added concerns but we are all so much more alike than different.

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

A:  Mike and I would love, as a family, to take our little Cayman to Cayman Islands.  Currently she knows all of her ABC’s and someday she will be able to spell and recognize her name, I feel confident of that.  She already knows it starts with C-A.  I can imagine the fun it will be stepping into a tourist shop and watching her identify her name on T-shirts, mugs, pens, and magnets galore! 

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

Q:  I don’t drink coffee.  I have the most dull beverage preference of all time – just plain ‘ol water.  Water it is for me all the time, from morning to night, and sometimes in the middle of the night too (especially now that I am a nursing mama).  Occasionally there is a sip of Pepsi or Sprite here and there when I crave that fizzy sweetness in my mouth but that’s rare.  And in the cold weather I do enjoy a warm cup of tea, Traditional Medicinal brand is my favorite. 

Q:  From reading your blog, it's obvious that you value a more natural approach to treatment.  Tell us about some of these treatments.  And what is it like using a natural approach with a child with many medical necessities? 

A: Homeopathic is a less traveled road and I completely understand why, there is a lot of quacks out there!  We went this direction for Cayman only because there is an amazing Naturopathic Doctor in our area that by past experience has earned our full trust and devotion long before Cayman and her diagnosis came along.  I have come to understand that he is one of a kind and a rare find for there are just not many that have the intelligence to practice with the detail and discernment like he has.  On top of his many Phd’s and over 25 years experience practicing and teaching homeopathic medicine he has a gift in this area of medicine.  I have never seen any doctor, medical or homeopathic, with more wealth of knowledge and wisdom than him.  He has single-handedly guided us in making the best decisions for Cayman’s health.  I am confident his recommendations have been right on for her.  A child with as many diagnoses and medical necessities as hers and to not be on any medications is unusual.  The homeopathic world and the pharmaceutical/medical world are so divided though.  I feel like we have our foot in each one of these places and it has been tricky.   One thing I wish for people to know is that there is a definite need for both of them.

Monday, October 3, 2011

Sugar and spice. . .

. . . and everything nice!

Baby Hawk B is a girl!

And everything looks great, healthy, normal.  I'll have one or two more high level ultrasounds "just in case."  But we are happy, excited, relieved, and have NO names for this new little lady.