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.


Jan Leigh said...

This is all so very interesting and so helpful in understanding everything you, Joey, and Aurelia are going through. Glad the helmet is working well and I LOVE the way you decorated it.

Courtney Dey said...

Always glad to hear the latest. I'll be praying!