Saturday, April 30, 2011

F.A.Q. The ones I can answer

I get a lot of frequently asked questions/statements about Aurelia.  Some I feel comfortable answering.  Some don't have answers.  Some catch me off guard.  Some make me feel uncomfortable.  Some questions are a little scary.  Some are questions that I've asked myself.  And I really don't mind the questions, even the ones I don't like.  But I do feel a bit like a broken record at times, repeating the same answers over and over again.  I thought I'd address some of these questions in the next couple posts.  Maybe we'll all find some answers.

How long will she have the shunt?
This is the most frequently asked question.  And the answer is simple.  She'll have the shunt forever.  There is currently no cure for hydrocephalus.  Unless one is found in the near future, Aurelia will always need the fluid drained off her brain.  In very rare cases, people have had their shunts removed because their hydrocephalus has become "normal pressure."  There is also an alternative procedure called an endoscopic third ventriculostomy (etv) where a small perforation is made in the ventricle to allow the fluid to bypass the blockage and drain into the normal CSF space (the interpendicular cavity).  I suppose this may be a possibility for Aurelia, but it doesn't appear to be that common and has it's own set of complications.  That's the long, medical answer with the different possibilities.

Where does the fluid drain?
The fluid from Aurelia's brain drains into her abdominal cavity and is reabsorbed by her body.  Here's an illustration:

Aurelia has a VP Shunt, meaning it goes into her abdomen.

Is the shunt working?
The simple answer is yes.  We thank the Lord that our baby girl hasn't had any infection or shunt malfunction.  The big issue or fear with the shunt is that is has a 50% failure rate, meaning there is a 50% chance that it will malfunction at some point.  But I'm a glass half full kind of mom, so there's a 50% chance that it will never malfunction.  She will have to have a revision at some point to add to the tubing in her abdomen.

The Helmet
Why is she wearing a helmet?
I only get this one from people that don't know us and I get it a lot.  Kids love to ask about the helmet.  Adults are curious about it and either just stare or ask.  I've even had people ask me where they can get one 'cause their kid is always bonking his/her head on stuff.  Now that we've put a bird on it, most kids just want to talk about the stickers.  But just in case you've missed the last posts, the helmet is a cranial molding helmet to round out the flat spot on her head.

How long does she wear the helmet each day?
23 hours.  She gets an hour break for a bath and play time.  We get lots of helmet free snuggles during that hour (but only after the bath, 'cause that thing makes Baby A smell funky).

How long will she have the helmet?
Anywhere from 3 to 12 months.  The longest she would have to wear it would be until she's 18 months, but that's unlikely.  Most kids seem to wear them for about 4-5 months.  I'm guessing Aurelia will be in her's a bit longer because her plagiocephaly was pretty severe and she isn't growing much.  But she's so cute in it, I don't really mind.
Yes, she is wearing Patagonia.  Baby Girl's got style and Uncle Zach.

She seems to see really well.
Sometimes she does.  Sometimes, not so much.  The thing with CVI is that her vision is "fine", as in her eyes work properly.  The issue is the way that her brain processes what she sees.  So when that little brain is processing well, she sees great.  When she's tired, working really hard on something else (like tummy time or eating), frustrated, or just having an off day she loses a lot of her vision.  For example, this morning at physical therapy she appeared to have no vision by the end of the hour long session.  After a short nap, she was engaging and looking around again.

Odds and Ends
What do you do in physical therapy?
Yes, it is strange to think of such a little person being able to do much in physical therapy.  Afterall, Aurelia doesn't roll over, sit up, crawl. . . there doesn't seem to be much to work with.  But there is a lot to work on (like rolling over, sitting up, crawling).  Physical therapy looks more or less like play time with some pretty cool toys.  She does tummy time on an exercise ball.  She plays with different visual toys.  She works on tracking.  We practice movements and rolls.  We work on strength and flexibility (she's a very, very stiff baby).  And she swings in a lycra hammock, which is her favorite thing to do.  We do a lot of these therapy things at home too.  When we move in a couple weeks (more on that later), she'll have her own hammock at home and loads of other cool sensory and strengthening toys.

Do you have good insurance?
We see A LOT of doctors, therapists, and specialists.  And all of these come with bills.  Our insurance is good, but no insurance would cover it all.  Aurelia's 10 day NICU stay came with a $135,000 price tag.  That's a staggering number, that's a mortgage, and that's just for NICU care, not for her surgery, my surgery, or any of the subsequent follow ups.  Our insurance covered MOST of that bill.  We also have a complex case manager with our insurance company that calls and checks in on Aurelia once a month.  She's really great and I truly feel like she has Aurelia's best interest in mind, not just the insurance companies interests.  She gets our referrals approved and recommends different care ideas.  It's also nice to know who to call when I have questions about our policy or any bills we receive.  So, yes, I think our insurance is good.

When does Joey get home?
Joey gets home in a week!  He's gone a lot for work.  And yes, it's awful that he is gone a lot.  I miss him more than it's possible to imagine.  Solo parenting is really tough work.  But in the glass half full mentality, I'm so thankful that he has a job that he enjoys.  I'm glad that I'm able to stay home with our baby, take her to appointments, be the main point person on her care team.  I love that when Joey's home, he's home 24/7 for a long stretch of time.  And I'm thankful that I have a loving, supportive husband who makes me feel loved and supported everyday, even when he's away.

How are you?
I guess this is a F.A.Q. that everyone gets, right?  But it deserves an answer too.  I'm fine.  I'm happy.  I'm tired.  I'm averaging about 5 hours of sleep a night.  I have seasonal allergies.  I'm soy and dairy free.  I miss chocolate and cheese.  I'm ecstatic to have Joey home.  I'm looking forward to moving in a couple weeks.  I'm looking forward to Switzerland.  I'm dreaming about many more trips to many different places.  I'm wondering what in the world I'm doing with my life.  I'm attending conferences on differently developing children.  I'm using words like differently developing.  I'm Mama Hawk (that's still new to me).  I'm ready for bed.  And that's how I am doing at this moment.

Friday, April 22, 2011

Good Friday Thoughts

Fitting that my reading this morning should include Isaiah 53.  Fitting to read these words on Good Friday:

But he was wounded for our transgressions; he was crushed for our iniquities; upon him was the chastisement that brought us peace, and with his stripes we are healed.  
Isaiah 53:5

A lot of emotion comes with contemplating the significance of this day.  Many men and women more eloquent than I have written words of wonder, amazement, grief, and gratitude.  These are some of my favorite:

My sin, oh, the bliss, oh the glorious thought, 
My sin, not in part, but the whole, 
Is nailed to the Cross and I bear it no more, 
Praise the Lord, Praise the Lord, oh my soul!
-Horatio Spafford

And as my precious little gift calls out to me from the other room that nap time is officially over, I'll carry these thoughts with me as I go about this {sunny, beautiful} Good Friday.

Thank You for the cross.

Wednesday, April 20, 2011

Let's take a walk

The 1st annual Seattle Hydrocephalus Walk is Saturday, July 30th in Magnuson Park.  Aurelia and I will be there, and we hope you'll be there too!  Our Team Hawk goal is to raise $3000 and recruit 30 walkers.  Of course, we'd be happy with a larger team and a larger fundraising amount, but this is where we'll start out.  Gig Harbor Crossfit has already said they're in if they can run it for time.  Those guys are hardcore.

Here's our little team blurb:
Baby Hawk was diagnosed with congenital hydrocephalus when Mama Hawk was 28 weeks pregnant. The last year has been a whirlwind of tears and triumphs for Team Hawk. So many friends and family have walked with us as we've journeyed this sometimes rocky road. Now we ask our friends and family to WALK with us as we raise money and awareness for hydrocephalus! 

You'll be hearing about this event a lot in the next few months.  And I look forward to many of you joining us!  For more information, click on the links above or contact me in the comments section or on facebook.

Friday, April 15, 2011

Progress Report: Part 2

A few weeks ago I detailed our goals for Aurelia's Individual Family Service Plan.  In short, our hopes is that Aurelia would explore, tolerate tummy time, eat, and sleep.  Here's where we are with each of those goals:

A picture's worth a thousand words, right?

This may not look like much, but Aurelia just started reaching and touching things in the last two weeks. She's very tentative with her reach, she rarely looks at the things she's reaching for (this is typical of CVI), and her favorite color to reach for is yellow.  These are the first steps towards exploring her world.

Sometimes I feel like our apartment looks like a physical therapy gym.  We have an exercise ball, a tummy time surf board, mats, and all kids of equipment to encourage Aurelia to tolerate tummy time.  As we learn more about her vision and sensory needs, we adapt to help her.  For example: Aurelia gets overwhelmed when there is too much to process.  If she's working on tummy time, it's hard for her to work on vision.  Therefore, I never put Aurelia on her tummy on anything that's not a solid color (she prefers bright blue).  I only offer her one toy that is either black and white or a solid contrasting color.  And she loves tummy time on the exercise ball.  She fully extends her arms, has great extension, and even laughs.  Again, we're on our way towards achieving our goal!

This is where we're having the biggest strides towards goal accomplishment.  After I figured out the texture, temperature and taste that Aurelia prefers, she no longer chokes on her food!  We have a nice little routine that we do every time she eats, and that has helped her anticipate the spoon (which she can't always see).  She's still figuring it all out, but she's figuring it out quickly.  Oh, and she loves pears.

Ok, confession time.  We found a loophole in the sleep goal.  The actual goal states that Aurelia would sleep in her crib for 5-6 hours at a time.  Two weeks ago she fell asleep in our bed and I didn't have the heart or energy to move her (this is what comes of 7 months on 2 hour increments of sleep for Mama Hawk).  She slept for 7 hours.  Since then, she's been sleeping in our bed for most of the night.  The past few nights she's been getting up 3 times again, so I think I'm ready to transition her back to the crib.  This would be the goal that seems the least attainable to me.

I feel like every week I'm amazed at how far this little lady progresses.  She's doing so well at working towards her goals.  She's also getting closer and closer to sitting unsupported (she loves to arch back when she's sitting up, but it's getting better).  She is on track verbally with all kinds of consonants.  She babbles b's, m's, d's, y's, g's, and I think I heard a p today.  Joey is convinced she said "Dada" to him over skype the other day, and I'm pretty sure that will be her first word.  She loves blowing raspberries and making noises with her mouth.  Her specialty therapist and I did a milestone assessment for children with visual impairments and moderate disabilities yesterday and she does almost all of the 0-3, about half of the 3-6 month milestones, and even a few 6-9 month things.  It's nice to look at milestones on a scale that better fits her needs and takes the CVI into account.  All in all, I feel like we're making lots of forward movement.

Monday, April 11, 2011

Progress Report: Part 1

6 month follow-ups are now complete!  We saw lots of specialists, got lots of good news, and any bad news was wait and see news.  We spend a lot of time in wait and see, and I'm ok with that.  Here is a brief summary of our follow-ups and the info gathered:

6 Month Well Child
Pretty standard visit to the pediatrician.  We went over her upcoming appointments, did all the weights and measurements, and talked through questions.  The biggest news to report from this appointment is that with the guidance of our pediatrician we have decided to postpone (not cancel) our trip to Central Asia from this May to hopefully this October or November.  The logic behind this decision is that Aurelia still has a fairly frail immune system and is still not completely out of the woods for infection.  Technically she is never out of the woods, but eventually the trees will thin out. . . does that make sense?  She has one more blood reinfusion at Duke, so we'll wait until after that.  And as always, trips to Central Asia are tentative until the plane touches the ground.  But we'd love to show our little lady off to our friends and loved ones over there.  So, instead of Central Asia, we will be traveling to SWITZERLAND for a week in June!  Can't wait to see some of our dearest friends and Joey's goddaughter.

Let me start by saying that I LOVE our new neurologist.  I didn't feel quite comfortable with our old neurologist, so this is a welcome change.  Dr. Makari was very impressed with Baby Hawk.  He repeatedly told me that she is doing so well considering what she's been through and what she's up against.  He says she's got a lot of fight in her, and thinks she will overcome a lot of her delays.  And he decided to put off doing an MRI until her brain matures a little more or a need arises.  He also decided to put off doing an EEG (a test that looks at brain activity, specifically looking for seizures) because there hasn't been a need.  A lot of this appointment was education on what to look for in terms of shunt malfunction and seizure activity.  All of that can be scary stuff, but I am glad to feel prepared.  The only negative report was a wait and see type thing, and for now we've decided to wait and see if we want to share it.

Aurelia is still very small.  She is still slowly gaining weight, but she is not growing in height fast enough.  At endocrinology they take very specific measurements, and according to their charts, she is falling off her growth curve.  With that info, her endo doctor had her growth hormones drawn again (blood draws + missing nap time = traumatic experience for mom and baby).  Unfortunately, they came back very low.  At this point her doctor has decided to wait and see for another four months.  If her hormones are still low, we'll start talking about growth hormone treatments.  Please pray for growth!

Geneticists are smart.  They are very good at looking at the whole picture.  In Aurelia's case, they are more interested in looking at the septo-optic hypoplasia than the hydrocephalus.  Aurelia's last set of genetic testing came back normal (YEA!).  There is one more test they would like to do and we're waiting for the approval to go ahead with it.  After that test is done, Aurelia should be done with genetic follow-up!  Oh, and they said we have "a very impressive baby."  I feel like they know what they are talking about.

I love this appointment.  It's quick, our doctor is very no nonsense, and it's usually good news.  Dr. Morris thinks Aurelia looks great.  Her head is becoming more proportional to the rest of her body and her shunt looks great.  He ordered a cranial ultrasound so that we have a record of what her ventricles look like right now in case something ever comes up.  And that was it.

Try saying that 5 times fast, or just 1 time even.  I'm pretty sure our GI doc has a crush on Aurelia.  He is such a sweet doctor and is so good with our little lady.  Aurelia is still having some stomach issues and her reflux has gotten worse in the last few weeks.  Unfortunately that means big changes for Mama Hawk.  After months of putting it off and trying different treatments, I am now dairy and soy free for my baby.  It's been almost a week and I think I can see a difference.  This is great, but I'm also a little disappointed.  I love cheese.  I miss it.  And it seems like everything has soy or dairy in it.  I know I'll get used to it, but I'm still feeling a little grumbly about it.

All in all, I feel pretty good about all these follow-ups.  We have follow-ups to the follow-up for four out of six appointments (endocrinology, genetics, neurosurgery, and GI), but it's always a good feeling when something doesn't need immediate attention.  And Aurelia is making huge steps towards reaching her goals.  We'll save that for Progress Report: Part 2.