Wednesday, March 18, 2015

More To Do...

Well...it is an exciting time in Hazel's life right now.  Her last scheduled eye surgery was a great success and it was followed this morning by a post-surgery exam from her cornea surgery that had nothing but positive results.  In a way, this is uncharted territory for Hazel...and us.  Hazel still wears her glasses every day and she needs 2 steroid eye drops and 2 drops of Restasis each day...but it seems like a small price to pay.  It's funny how your perspective can change based on where you've been versus where you are.

But even though we don't have any scheduled surgeries, that doesn't mean that Hazel's medical journey is over.  Tomorrow morning Hazel is going in for an MRI that will focus on her ears and hearing.  In case you don't remember, Hazel suffers from three main ailments...she is visually impaired, has hydrocephalus and partial hearing loss.  Most people are familiar with her eyes, but forget that she has a tube shunt that runs from her skull to her stomach to control the fluid in her head....the same fluid that put too much pressure on her ear nerves and caused permanent hearing loss.  There is still a lot that we don't understand about Hazel's hearing, mainly because it's hard to give and get responses from a 17-month old who is only interested in walking and chasing the dog.  But the MRI should provide a lot more information about the structure of Hazel's ears and give us more insight to what our next steps are to help her speech development and hearing.

There is no surgical aspect to tomorrow's MRI, but going under anesthesia is always a risk.  We've been in this boat close to 20 times, but putting her under still makes me somewhat nervous.  We are praying for the anesthesia to go smoothly and that the MRI is clear and provides conclusive results.

If you have the time, I would appreciate any prayers for our little girl.  

Wednesday, March 4, 2015

Eye Surgery 10 Recap



Hopefully everyone is staying warm as another wave of winter weather hits north Texas.  The initial wave of snow and ice forced us to delay Hazel's 10th eye surgery, but we were able to make our way back to the surgery center this week to get her left eye taken care of.

I posted a few weeks ago about what this surgery would entail, but I need to clarify some of the details of what actually ended up happening.  The pupil in Hazel's left eye was receiving very little light because it was being obstructed by the eyelid and iris.  Originally, we thought this meant that Dr Bowman would need to remove part or all of her iris so that more light could enter her pupil -- this was not the case.  The procedure that was done is actually known as a vitrectomy, which means that excess vitreous fluid from the front of the eye would be removed with the goal of increasing her pupil size and removing unnecessary fluid.  I won't bore you details about what this fluid is, but (in this case) it was causing Hazel's pupil to become obscured.  Hazel's pupil is not nice and round like yours or mine, it is more of a disc shape, similar to the shape of a bean.  So by expanding the size of the pupil, part will still be blocked by the eyelid, but the part that is NOT blocked is similar in size to a regular pupil and is in the center of the eye.  I'm a visual learner....so hopefully that makes some sense.  Long story short....her eye now has a red reflex and can receive light, which is HUGE for her development.

Overall this was a very, very successful surgery.  The past few months there have been numerous eye surgeries and most of them follow a similar pattern....send Hazel back for surgery, kill time in the waiting room and then have a consultation with our surgeons that has both good and bad news.  This time there wasn't any bad news!!  There was no awkward pause following the good news or look of concern on the doctor's face...it was just GOOD news.  Sorry, I know that's repetitive but it's still an exciting situation for us.  The surgery went the way it should, her corneas look great, her eye pressures were low (8 in the right and 13 in the left) and everything else that we are monitoring was looking good.

So what does the future hold?  

There are still stitches in her eye that need to be removed, so we will go back in 6 weeks to get those taken out.  After that, we still have plenty of challenges on the horizon for Hazel but being able to take a break from eye surgery is a huge help.  For her eyes, we still need to get a prescription done for the lens in the left side of her glasses but that's it.  There are no more scheduled eye surgeries at this point.  Such a miracle...

We will still have plenty of appointments since Hazel has hearing loss, hydrocephalus and a mild heart condition...she also works with ECI (Early Childhood Intervention) and Division for Blind services to help her development through visual and physical therapy.  Oh...and all the other shots and things that kids need :)

As usual, the length of this post has gotten away from me.  I realize that most people are either reading this on a tiny iPhone screen or taking time out of their day to read these on the website, so please know that I appreciate that you've read this far!  It's been a long road to this point, mostly in uncharted territory for us....and we really appreciate everyone that has been there beside us along the way.

I'll be sure to post the next time Hazel has something important coming up!!