Wednesday, March 30, 2011

Before and During

Before Helmet

About a week ago

It was hard to get a bird's eye view of her head because she loves having her picture taken.

Tuesday, March 29, 2011

Put A Bird On It

Although the pink helmet was very cute, I decided to give Aurelia's new helmet a more personalized touch.  I ordered a plain white helmet and some decals from  

The new helmet is a snug fit and my baby gives me the stink eye a lot now.  Hopefully as she grows into it that will get better.

And for the decals, well I decided to take the advise of Fred Armisen and Carrie Brownstein from Portlandia (see clip at the end of the post).

And we can already see a huge difference in her head.  I've been taking weekly before and after pictures.   I'll try to post them later today or this week.  It's amazing how quickly her head is changing!

Monday, March 21, 2011

The Plan

We had another busy week full of appointments.  When I looked at my calendar the Friday before last, I breathed a little sigh of relief when I saw that we only had one appointment on deck for the next week.  Fast forward to later that night and we were up to four appointments.  The two biggies were endocrinology follow-up and a meeting to discuss Aurelia's Individual Family Service Plan (IFSP).  Endocrinology included some blood work with results still on the way, so I'll wait to update on that.  And can I just say that I truly hate blood draws?  It didn't help that the 30 minute wait at the lab was quickly butting it's way into nap time.  Poor Aurelia does not have good veins and sustained three pricks, precious little lamb.  There was a lot of calming and cuddling after that appointment.

The IFSP meeting was a lot more encouraging, productive, and exciting.  First, it was great because our Family Resource Coordinator, assessment therapist, and speciality service therapist came to our home.  Most of our early intervention services will be done in home.  It's nice to have one less appointment across the bridge.  Second, Joey was able to skype into the meeting and help make our plan.

We spent the first bit of time going through Aurelia's complete file and assessment.  She scored at 2-3 months in most areas and 4-5 in a few.  We were excited that she scored high on social-emotional and cognition sections.  Her lowest scores were in physical and adaptive sections.  Everyone agreed that a lot of her low scores were closely related to vision.  

After going over her assessment, Joey and I set our priorities and goals for the next 6-12 months of Aurelia's development.  So, here's the plan:

-Our first goal is that Aurelia would begin exploring the world around her.  This includes reaching for toys, people, things, food, etc.  Right now, Aurelia will only grab something if it's placed on her chest or in her hands.  If she drops the toy I've given her, it's like it never existed to her.  I dangle toys in front of her right out of her reach and she just smiles or looks to the side.  Our hope is that she will begin to reach for things around her when on her tummy, her back, sitting (which she isn't doing yet, but we're working on it), and all other positions.  We would like her to be able to entertain herself by picking up toys and playing with them.

-Our second goal is that she would tolerate tummy time for a longer period of time.  She doesn't mind being on her tummy for the first minute or two, but after that she gets a little agitated.  She has trouble pushing up on her arms and would much rather just lay her head down on the ground.  Getting better at tummy time will reflect a general strengthening of her entire body.

-Our next goal is that she would begin to eat solid foods.  We've tried some, but she pushes most of it out of her mouth and chokes on the rest of it.  Some of this may just be getting used to solids.  A lot of it is tied to her vision impairment.  She almost jumps every time the spoon hits her mouth because she doesn't see it coming.  But just 'cause she's so dang cute, here's a picture of her first day of solids:

-And our final goal is that she would sleep for five to six hours at night and take two or three 45 minute or longer naps again.  I can't wait for this goal to be achieved.  We're still getting up three or four times a night.  It's pretty exhausting.  

We'll have a therapist come to our house weekly to help us work on these goals.  And as once she achieves any of these goals, we'll go back to the drawing board and chose a new one to work towards.  We have our work cut out for us.  But Aurelia continues to show us that she is quite the little fighter.  

Wednesday, March 9, 2011

Aurelia's Newest Accessory

Plagiocephaly, yet another word I hadn't heard of before having our baby.  Add it to the list of hydrocephalus, torticollis, septum pellucidum, corpus callosum, cortical visual impairment, and optic nerve hypoplasia (which she does not have).  My medical vocabulary is growing.

Plagiocephaly means flattened head.  It most commonly occurs when a baby sleeps or lays in the same position.  Aurelia has never liked resting on her shunt, meaning the left side of her head is quite flat.  Luckily, this problem has a fairly easy, absolutely adorable fix:

She's smiling now, but the initial transition was ROUGH!  It didn't help that they cut the ear gaps in the wrong place.  Bless her pointy little head.  This pink helmet is a temporary fix.  I have something much more exciting planned for the real helmet, stay tuned.  

I took a birds-eye before shot of her flat little noggin.  But the camera is in the car and it's raining too hard.

In other news, our days have been filled with 6 month follow-ups.  We've seen her pediatrician and her neurologist already.  We still have endocrinology, genetics, GI,  and neurosurgery to go.  And weekly physical therapy sessions have commenced (including daily homework).   She also has a big assessment on Friday with a therapy place that has a few more specialists.  It's a busy time in the Hawkin's Household!