Hazel is Two!

Man, time flies. Everyone tells you at each stage of life to slow down and enjoy the moments and I've found it to be exceptionally true for parenting. Our little baby girl is now a walking, talking, opinionated toddler who officially turns 2 on October 12.

There haven't been any surgeries in the past few months but we still have something for Hazel to do or get done to her just about every week. Last week it was a rapid MRI to do the annual check of her head tube...and later this week she will have speech therapy or physical therapy.  The week after it will be a trip to the cornea place, glaucoma place, visit from ECI or division for blind services.....  Life goes on. 

One thing I wanted to share is that we have some serious concerns over the health of her right cornea. It is getting more cloudy and it's really obvious that she favors her left eye. When Hazel had her first cornea transplant at 3 weeks old our surgeon was very realistic and said that if her corneas were accepted by her body for 2 years than that would be a major win. So I guess we should be happy with how it's gone so far but the thought of putting her through surgery....again...it just makes me sick. 

We have an exam under anesthesia scheduled for Monday 10/19 and we are anticipating that our doctor will recommend a cornea transplant in the coming weeks. So if you have an empty space on your prayer list please put Hazel's right eye cornea and left eye pressure on your list as we get closer to the exam. 

Exam Under Anesthesia Today

Today is going to be a live, last minute blog post from the Eye Institute of Texas as Aubree and I sit in the waiting room. So if you're driving down central on your way to downtown give us a wave!!  

Hazel is having an exam under anesthesia this morning to check her overall eye health, eye pressure and to ensure that the previous surgeries are still doing what they're supposed to do. Today was one of the easier transitions from the pre-op room to being away from Aubree and me...but Hazel is more aware than ever that we're at that place with all the doctors.  She has had 13 surgeries and has been under full anesthesia over 20 times (We lost track of the total). It's a lot for her tiny body to take in the first 22 months of her life. 

If you have a minute, we would appreciate prayers for no medical surprises today and steady hands for the medical team in the operating room. 

Overdue Update

After a 4 month hiatus the blog is back!   I owe it to everyone who has been praying for Hazel or wondered how she is doing to give an update, so apologies for the long absence.

A few medical things of note have happened in the last few months....

On May 13, Hazel went to the surgery center for an exam under anesthesia.  Her cornea surgeon and glaucoma surgeon got a great look at her eyes and confirmed what Aubree and I suspected...that Hazel is favoring her left eye and is not using her right eye often (if at all).  The issue for the right eye is the fluid in the back portion of the eye that is pulling on her eye and obstructing her vision.  She has had similar issues in the past where the doctors have removed excess fluid, but in this case the fluid is in the back of the eye it requires a new specialist, so now we have a retina surgeon!

After some initial check-ups and some back-n-forth with the surgery coordinator, we were able to get Hazel in for eye surgery #11 on June 4th.  The procedure went as well as we could expect and the reliable nursing staff of the Texas Eye Institute's surgery center were there to greet our frequent flier when she got out of surgery.  We are familiar with the routine at the surgery center, but we're lucky to have a nursing staff who knows our child and genuinely cares for her like they do.

I could probably expand more on the medical details of the surgery, but the questions everyone usually wants updates on are how Hazel is doing and if there are any more surgeries?  Hazel is doing really well, we still do eye drops 4 times each day and for the last few weeks we have been putting a patch over her left eye for a few hours each day to force the connection between the right eye and her brain to get stronger.  She tolerates the fashion-forward patches that Aubree ordered for her on Amazon, she's lucky to have a Mom with fashion sense....I'd probably end up making her look like a baby pirate.

We don't have any surgeries that we are anticipating right now, but Hazel's normal life will still include exams under anesthesia for her eyes, an annual MRI for her tube shunt to fight her hydrocephalus, regular eye exams for her glasses and regular check-ups with the ENT for hearing exams and to maintain her hearing aids.  All of that on top of the check ups that all other kids go through.

It's been an active spring and early-summer for our little girl.  Hazel is walking a lot more frequently on her own but still prefers to have a hand to hold since her vision is not great.  She has gone to Vacation Bible School at Park Cities Baptist, discovered that she loves the playground and enjoys the swimming pool, has learned some songs and loves music....seriously, she loves music...and will find any excuse to dance and force you to awkwardly dance with her.

It's been a while since I've posted and 4 months is a big chunk of her life...so here's a few bonus pictures for everyone.

Hope everyone is doing well and having a great summer to this point.  Until next time...

Post-surgery picture

Visit to see Gigi in Clifton

Posing at VBS

Swimming with the cousins

Pushing her cart, eye patch and all

Hanging with Yaya

Sporting new glasses with transition lenses

Fourth of July 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.  

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!!  

Weather Delay

This will be the shortest update ever, but Hazel's eye surgery that was scheduled for tomorrow has been moved due to the weather. 

The surgery is getting moved a week back and will now be on Monday, March 2 in the morning. 

Eye Surgery 10

I keep hoping that I won't have to post about upcoming surgeries, but unfortunately we just aren't there yet.  Our little Hazel is still squarely in the middle of the battle zone.  Every surgery that she's had for the last few months has not been planned out and this eye surgery is no exception.  But this war of attrition is just where we are right now and no one can say with any certainty when these battles will end.  

Next Monday, February 23rd we will go back to the surgery center for a procedure on her left eye.  The pupil in her left eye has started to migrate up (Or "north" as I keep saying) and her vision is being impeded by other parts of the eye.  The pupil is really important to the development of Hazel's eyes because it is where light enters the eye and helps it grow and develop.  At this point, the pupil is moving upwards and is being blocked by her iris...so the only solution in this case is an iridectomy to remove the iris.

I hate that this surgery has to happen but it does.  You don't think of the iris as something that the eye can afford to lose...and it has caught most people off guard when I've said what the surgery involves.  But when the choices are either: the left eye will stop receiving light OR you can remove the iris?  Not much of a decision to make.  

If I'm being honest, this surgery feels like Hazel is being forced to lose a part of her eye and not gaining better use of her pupil.  I still have trouble accepting why God allowed her pupil to move at all...she's been through enough already.  By this point we were hoping that Hazel would be in glasses with two prescriptions lenses and be working on improving her vision, not needing surgery to save it.  But Hazel has not had much (if any) vision from her left eye for several weeks.

Overall, Hazel is doing as well or better than many of her doctors thought she would do when she was born.  She gets a lot of help from physical therapist, two vision therapists and her team of doctors that monitor her vision issues, hearing loss and hydrocephalus.  Hazel is on the border of figuring out how to walk and still dislikes crawling (which is fine!), she actually enjoys wearing her glasses and is more accepting of her hearing aids every day.

If you have the time and are willing, we would appreciate your prayer this week.  Please pray that...

• The surgery goes as planned
• The examination would not find any more issues that will need more eye drops or surgery to correct
• This will be the last eye surgery for Hazel

Eye Surgery 9

Well, 2014 is in the rear view mirror but the new year is starting off in a familiar place for us -- back in for another eye surgery. Today is eye surgery number nine for Hazel and is currently underway as Aubree and I waste time in the waiting room.

I will update later, but today all three of Hazel's main doctors are in the house (Cornea, Glaucoma and primary Ophthalmologist).  

Thanks to everyone who has been praying!

Finding Perspective

My favorite course in college happened during the second semester of my freshman year at Baylor with my good friend (and freshman roommate) Jeff Kok.  Jeff and I were looking to take a few classes together and needed to fill a 4-hour lab course...the class we settled on was astronomy.  Astronomy is in no way associated with the major I choose or the life I had planned out after college, but for whatever reason it always appealed to my personality.  Jeff and I would stay up late before tests to study and would always find childish analogies or mnemonic devices to remember the features of our solar system.  Some of which we still joke about as 30-year old dads who haven't been in a dorm room since 2004.  We definitely had some good times in that 12 x 13 dorm room...  As part of the course, students were required to complete three hours of course work and one hour of "lab" which consisted of actual laboratory work or watching a video.  One night, I attended a one hour video that was narrated by Stephen Hawking; the video started at the base level of existence, the cellular level of our bodies and expanded out farther and farther into the universe to show the grand scale of existence.  It took less than 60 minutes of being in the right place, at the right time for me to realize that the world that we live in was made by a Creator that spoke into existence a universe that is beyond comprehension.  That random video which I'm sure other student were ignoring or sleeping through was life changing for me.

But this is The Hazel Report -- so what does this have to do with Hazel?

When we got the genetics report on Hazel, we learned that her micro-deletion on Chromosome 6 was approximately 1.2 megabytes.  Do you understand how small that is?  Please allow me to put this to scale: if you're reading this blog on a standard 16 gigabyte iPhone, than 1.2 megabytes is 0.008% of the capacity of your phone.  It's nothing.  It's tiny.  But it means a lot to our daughter's life.  For the last 14 months, Aubree and I have been trying to get a handle on every situation and all the variables that exist for Hazel's health...because frankly, there is a lot to process and do.  There are times that we feel confident and happy but there are also times (like earlier this month for me) where the weight of all these surgeries is overwhelming.  But recently I've tried to take time to find some perspective.

I have found myself thinking back to a class I took 10 years ago with a friend who I met because God planned for us to be potluck roommates.  I'm not focused on that fact that there are bigger problems in the world than Hazel having a micro-deletion in her genetic make up.  I'm focused on that fact that the God who I place my faith in is the creator of this immense and complex universe -- so how can He not be able to conquer 1.2 megabytes of missing DNA?

GOD IS IN CONTROL.

Eye Surgery 8: More Than Expected

I am blogging this afternoon from an office chair in our bedroom as Hazel continues to nap the day away on our bed.  It was a rough morning for our little girl, she's earned the right to stay in her footie-pajamas as long as she wants if you ask me.  

If you only have a moment to read this, I'll go ahead and give a Cliff Notes version of the blog: the procedures went really well and Hazel is doing fine this afternoon.  Unfortunately, we got more than we expected this morning.  There's not a good way to summarize everything, so you'll have to read on to see the big picture and details:

The scheduled procedures today included two things -- first, an evaluation under anesthesia to examine both eyes and secondly, to remove the lens in her right eye which has a cataract and is hindering her vision.  Going to the surgery center is getting tougher than it used to be for our tiny family.  Hazel is much more aware of where we are and recognizes the nurses and doctors when the start to take measurements and notes.  She already doesn't like when people pin her down or get in her face, so trying to take blood pressure, attach leads to her chest and do pre-surgery eye drops is more challenging than it used to be.  It's kind of a joke in movies and TV shows but its true...babies can be freakishly strong.

About a half hour after Hazel went back for the procedure, both her cornea surgeon (Dr Bowman) and glaucoma surgeon (Dr Smith) came to the waiting room and pulled Aubree and I into a consultation room.  We have been concerned about the size of Hazel's left eye and knew there was a very real possibility that the EUA would reveal that her eye pressure was up.  And it was.  I forgot to ask exactly how high the pressure was in her left eye, but it was high enough that Dr Smith wanted to move forward with placing an addition tube in her eye to relieve pressure.  We all agreed to do the surgery today and place another tube in her right eye.

Even though we knew this was the next step to fight the glaucoma, it still caught me off guard somehow.  I think I'm just tired.  I'm tired of the rug getting pulled out from under us every time we think we are on the last leg of this marathon of eye surgeries.  It is what it is, but we just want Hazel to have a break from all of this for once.  In a lot of ways, today is just one of those days where it gets me down that Hazel only knows this form of life where she averages a surgery a month and has multiple doctor appointments each week.  I'm sure that later tonight Hazel will be clapping and laughing and the glass will seem like it's half full again.  I'll remember that she is blessed to have doctors that can give her vision when she born blind and that there are kids out there who don't have the medical resources that she does.   It was just a really tough morning but tomorrow is a new day.

Hazel is nearly 14 months old and the on-going support from all our family, friends and various church bodies has really been unreal.  It's scary to think where we would be without all the words of encouragement, the prayer, the hugs and emotional support.  Everyone is probably tired of me closing the blogs by thanking everyone who is supporting Hazel...but I don't know how else to say how truly appreciative Aubree and I are for each and every one of you.

I hope everyone is having a happy and safe holiday season to this point.  I will blog more as updates are available.  The next steps for Hazel are a check-up next week on her surgeries from today and another visit to the surgery center in a month for an EUA.