Saturday, February 7, 2015

Viseobook - Emily's Coolest New "Tech Toy"

I visited Emily's school and got to see the new Viseobook that the NJ Commission for Visually Impaired was able to provide for her.  Its Awesome!  Its a portable desktop version of the CCTV that she had been using.  I love it and wish she could have one for home!

Check it out here:

VisioBook pictured from different angles

VisioBook folded down

Why School Picture Day Is So Stressful

For the normal average parent, school picture day probably isn't very stressful.  The hardest part is deciding what outfit your child would wear, how their hair would be done and what backgroud to pick.  But for me, taking any kind of photo of Emily has always been a source of heartbreak and anxiety.  And school photos are the worst kind.

The stress of it all for me has deeply seeded roots that go all the way back to Emily's first Christmas in 2007. She was only about a month and a half old when we went for our traditional family Christmas photos. That year, the JCPenney studio we usually go to had hired new people to accommodate for the holiday busy season.  Normally it wouldn't have been a big deal, but when you combine an inexperienced photographer with an emotional postpartum mom and a newborn who can't see, the results were bound to be disastrous.  The raw emotion of our new baby's uncertain future always sat just beneath the surface of the "happy new mom" exterior that I tried to portray in public. Inside I was anything but happy.  A myriad of emotions ran through my veins at any given moment, not knowing when they would rear their ugly head and boil to the surface, spewing out for all to see. That day, in that happened.

I don't remember what her name was, but she was "older"...not a fresh young girl who would welcome the idea of working with a new baby and 2 boys under the age of 5. She was in a hurry, we were a number to her and she was definitly NOT a "kid friendly" person.  She had no idea how to get the boys to smile and I could feel my blood pressure rising as we came to doing shots of just Emily or the boys and Emily together. This precious little girl, all dressed up in her pretty dress, tiny shoes and matching beret hat could not see anything. She couldn't see the camera, she couldn't see the photographer and she couldn't see me.  Her eyes wandered all over the place, most of the time they were not even both open at the same time.  And even after explaining to the woman that she couldn't see, we just wanted a good photo of her looking "in the right direction"...they turned out terrible.  The girl in the photo was not my daughter, she wasn't the little princess I dressed up earlier than day. She didn't look....normal.  I stood there at the computer crying my eyes out while this insensitive woman kept trying to tell me they looked great, that she looked perfect. I remember being so heartbroken that I just kept crying and saying that I hated the pictures, all of them and that I didn't want to buy any of them.  Thats when another photographer came over and started trying to calm me down. I explained how unhappy I was with not only the photos but with the photographer herself, that she was so insensitive to our familys needs.  I took a deep breath and they reassured me that they would try again to see if someone else could get better photos.

After talking with Alyce, a sweet young girl named Rebecca came in and was very helpful in working with us in getting some better shots of Emily alone and with the boys.  I didn't expect a miracle, but for a professional photography studio I did expect some level of understanding that not every family can just walk in, smile, pose and be done.  Rebecca and Alyce went beyond their studio time limits for us, and in the end the photos came out much better than the first ones.  I was so grateful for the time and effort they took to help make our family photos memorable, in a good way. To this day, I am very close with Alyce and keep in touch with Rebecca through facebook.  Rebecca eventually moved on from the studio and now Alyce is the ONLY person I trust when it comes to taking Emily's professional photos,  She knows how to talk to her, help her look in the right direction and is patient, knowing that she is working with a child who literally cannot control where she is looking.  She has truly become part of our family!

Some people might think that a picture is just a picture, but to me its a moment in time that I cannot ever get back.  Its a memory of what was happening in my life at that time, and years down the road it would become the only memory I will have of those moments.  I refused to look back at Emily's first Christmas and feel even more heartbreak than necessary.  It was a difficult time in our lives and I didn't want to look back and not recognize my own daughter, nor did I want her to look back at those photos, if she would be able to see them at all, and feel bad about herself.

How does all of this relate to school pictures? Well fast forward about 5 years to when Emily was in preschool.  It was the year she lost vision in her left eye, and her eye began to shrink, cloud over and her eyelid no longer opened very wide.  The school photographer obviously had no sense of how to capture her in a aesthetically pleasing way because she wasn't smiling, looking at the camera and her good eye was turned very far inward.  Keep in mind that this was the BEST of the multiple shots they took of her that day.  When I got the photos back, I actually broke down in tears, it was so hard to look at because the girl in that photo was NOT my daughter.  It was the most visually disturbing image of her that I have ever seen.  A few days later I drove to the studio office and asked for my money back. They said I could look at the other images and see if one was better, but none of them were acceptable at all.  So they refunded me my money.

The next year, Kindergarten, I wrote her teacher an email asking if she could please accompany Emily to the photo area and help her know where to look and guide her in how and when to smile. I cried that morning, knowing that I wasn't there to help her. I had no control over how and when the camera shutter would click, how many shots would be taken and if she was smiling, eyes opened or closed or even looking in the right direction. Its something normal sighted parents take for grated. They send their kids to school and don't think twice about how their smile will be captured.  For me its a stressful and depressing unknown.  Its something I struggle with every time I try to take her photo myself...I want her to look her best, and I want her to look as "normal" as possible.  I have to take dozens and dozens of photos to just be able to pick out the best one or two that look "ok".  When we are with friends or in a group setting, my heart breaks because all those other moms are able to just say "smile" and they click once or twice and get a great photo of their child's beautiful eyes looking straight at them, often with a perfect smile to match.  Emily doesn't fit into that mold, and I often lose the photo opportunity that everyone else gets because it takes so long to get her to understand where to look and smile.

While her Kindergarten picture came out ok, it wasn't great.  But it wasn't terrible either.  So this year, first grade, I once again recruited her teacher to try and help her out.  This is how she looked before school that day. I posted it on facebook with the caption "school picture day for Emily, aka the most stressful day of September". A few people asked why it was so stressful, and I once again had to explain...

Hospital Follow Ups

Aug. 25-26, 2014

Emily did really well taking the oral antibiotics, steroids and eye drops.  By the time we headed to see Dr. Lalin, the retina specialist that Dr. Morgan had suggested, most of the redness and swelling had gone away. Dr. Lalin's office was in Morristown near the hospital and we had never been there before.  We waited a loooooong time. And as a new patient, they knew nothing about Emily.  Not a surprise that when we finally got called into the room for the nurse to talk to us and do the preliminary exam, that we left just a minute later...she was blind in the eye  we were there to examine. After what we had just been through the last thing I wanted to deal with were people who had no idea who Emily was or what her medical history entailed.  The girl in the first exam room was short with me, so I was short with her in return. No she doesn't see any light, shadows or objects. She's blind in that eye and we are just here as a follow up to make sure there is no infection inside. We left the room and I went back out to the waiting area where we once again...waited. Over all before we were actually brought back into a real exam room we waited a hour and a half.  Then we waited another 45 minutes before Dr. Lalin came in.  We quickly reviewed her latest issue and then were escorted to yet another room, where we, yep you guessed it, waited. He came into the room, did a quick ultrasound of her eye and confirmed that there was no infection inside the eye.  He also chimed in with a very condescending comment regarding her seeing eye saying "her cornea graft is failing, it should probably be replaced".  Thanks, I didn't notice that before.  I don't feel we needed to go see him at all...such a waste of my time and money.

The next day we went to see Dr. Kane, and he did a much more in depth exam of both eyes, as well as his own ultrasound.  He agreed, no infection inside or behind the eye which was good news. Also good news was that her pressure was still good in the right eye, maintaining at around 12.  However, he did feel that the cornea was starting to interfere with her vision, he couldn't really get a good look at the cataract or the retina because the cornea was so rough and hazy.  He agreed...she needed another transplant.

The infection was gone, but cornea surgery was once again on the horizon.  It wasn't a surprise, I knew it was coming...I just didn't know how soon it would be.

We were barely recovering from this crisis...I don't think I could tackle another one so soon.

Peri-Orbital & Orbital Cellulitis

Aug. 18 - 21, 2014

As hospital stays usually go, you don't get much rest...which seems counter intuitive because in order to heal or get well, rest is usually the first thing your doctor tells you you need. I get it, nurses have orders to take vitals and dispense meds at all hours of the day and night, its their job.  Christine always made sure she was super quiet and quick...letting us go back to sleep right away.  No bright lights switched on or loud sudden entrances into the room.  Most nurses just walk in like its 2:00 in the afternoon and everyone is wide awake! I truly appreciated how much she tried to avoid disturbing Emily.

When we woke up Monday morning, they brought us breakfast and we actually had to switch rooms. After we ate breakfast, Dr. Morgan came in to examine her and told us that he personally looked at the CT and in his opinion the pocket of fluid inside her eye was really the retina that had detached, not a sign of infection.  So it appeared, at least for the moment, that no surgery would be needed, THANK GOD.  However, once she was discharged we would need to see a retina specialist just to be sure.  He diagnosed her with Periorbital and Orbital Cellulitis, which is an infection of the interior and exterior skin surrounding her eye and inside her eye socket. I didn't get very much detailed information about what any of that means or what causes it, so I of course googled it.

Basically everything I read says that it can be caused by one of a few different types of bacteria, most commonly Haemophilus influenzae, Staphylococcus and Streptococcus. The first of these three , Haemophilus influenzae, is the common cause for sinus infections, but Emily wasn't sick prior to showing signs of the eye infection.  She also didn't have a Staph infection or Strep, although I was suspicious of Strep on the day this began because she had thrown up a few times.  So how else could she have gotten this? Other ways bacteria could infect the eyelid or skin around her eye include scratches, insect bites and other skin injuries...none of which she had.  I started thinking outside the box and only came up with one other possible reason...water. It was summer after all and she had been swimming in my in-laws pool 2 days before she showed any symptoms, and in the lake at my moms house a day or so before that.  I asked Dr. Morgan if bacteria from the water could have gotten into her eye and caused this infection, he said it was "possible"...but without a scratch or place for the bacteria to enter the skin, it wasn't likely.  We will never know how or why this happened, which is frustrating because we want to make sure it never happens again! 

One of the biggest risks involved with orbital cellulitis is that if it isn't treated quickly enough, it could cause permanent damage to her eye and cause blindness.  While the issue of vision loss wasn't a concern because she already had no vision in the left eye, I was scared out of my mind that it could spread to her good eye. I asked probably a half a dozen times and  I was always reassured that there was little chance of it spreading.  There is a "wall" so to speak (called the septum) that acts as a barrier between the eye sockets. I was of course relieved to hear that but still never know what can happen.  

Emily had been on very strong IV antibiotics, fluids to keep her hydrated and a round the clock series of eye drops.  Thankfully the nurses and doctors trusted me to give her the drops, it made me feel like I had some control over helping her get better.  The nurses had to scan her bracelet and then scan the drops so there was record of them being given, but they often scanned them all and left them with me to give to her 5 min apart.  Monday was rough, I could barely open her eyelid to get the drops in, and the swelling seemed to be continuing to get worse.  The infection wasn't responding to the antibiotics as quickly as we had hoped.  Jason and I had both stayed with her Sunday night, but there was only room for one of us to stay the next night, so Jason took the boys home and planned to come back the next morning.  Needless to say I didn't get much sleep. Nurses for both Emily and the girl she was sharing a room with were in and out all night and the awful chair that converts to a bed was ridiculously uncomfortable to say the least.  I tossed and (tried) to turn, but all I could do was worry about her.  I should have asked if they had any Xanex available for should come as an add on to your meal choices for each day.  Seriously.

When Dr. Morgan came in on Tuesday with the on call doctor who had seen her the day before, they both agreed she had begun to turn the corner. Yes, the swelling was bad, but it wasn't getting any worse and looked slightly less red.  She would remain on the IV antibiotics and eye drops, and stay overnight again that night, with hopes she would be able to go home the next day.  I wasn't prepared for more than 1 night in the hospital.  But to be completely honest, I would keep her in the hospital for weeks if its what was necessary to get rid of this infection.  I hated seeing her like this, but once again she proved to me that nothing will keep her down.  The child life specialists came to visit after the doctors left and brought her some paints and playdough to play with.  And the second she could get up out of her bed, IV attached of course, she wanted to walk down with her IV pole to the playroom and get back to being a kid.  It was so good for her, and us too.

Wednesday morning, things looked better, not drastically, but there were improvements. The on call doctor and all the residents made rounds in the morning, just as they had done everyday. I kind of felt like I was on Grey's Anatomy with the head resident presenting Emily's case and everyone else answering questions about her condition and meds.  I was able to be part of it and ask questions myself if I wanted to, but most of the time I just stood in the background and listened.  A decision had been made to transition Emily off of the IV antibiotics and onto oral medication to prepare her to be released.  But they agreed that she should be kept overnight once again so that they can monitor how well the oral meds are working. I agreed that it made sense to keep her one more night to observe how things went once off the IV.  She would be on 2 oral meds, an antibiotic and a steroid, plus all but one of the eye drops she had been on so far.  They stopped the Timolol since we knew it wasn't an issue of eye pressure.  

We made it though one more day, spending a lot of time outside the room, now that she was free of her IV it was easier to move around the floor.  Emily loved the playroom and even spent some quality time playing with a younger girl with cancer.  The simplicity of the two of them playing seemed so innocent, just two girls being kids, despite the difficult pain and suffering they both shared in their own way. It heartwarming and heartbreaking at the same time, very bittersweet. That night, just as she had previously, Em spent some time in the media room playing video games with Matthew and Tyler.  We even went back down to the playroom and had a family game of Sorry.  I could tell Emily was feeling a little better because she got bored and kept leaving the game to go play with other toys. So I won for both of us :)

 We ordered  just about the same things as we had been from the hospital cafeteria for every meal. Emily would only eat either the chicken fingers or mashed potatoes...she even asked for them at breakfast and I had to say no, even though I'm sure we could have gotten them if we really wanted to.  Thank god for the small snack room where we could replenish simple things like juice, soda, Lorna Doone cookies, crackers...and coffee.  Its basically what we lived on since the meals were, meals. I think that speaks for itself.  Sadly our days at the hospital were becoming more routine, and it almost felt like we were "settling in".  I hated feeling like that, it wasn't home, this place wasn't comfy or cozy.  It was designed to help kids feel more comfortable, but it shouldn't ever feel like home.  I had a feeling that the beautiful bald headed little girl in the playroom felt more settled in than we did and that makes me sad. This was hopefully our last night here and I was getting antsy to go home.  We lucked out and had our less than desirable roomate leave during the day and were able to move over to the larger side of the room, and hoped that we would be able to get a better nights sleep without noise from the other side of the curtain. Jason brought home alot of the bags of "stuff" we collected over the last few days including most of the stuffed animals and gifts friends and family brought her when they visited.  I couldn't fall asleep...too many things running through my mind, so I stayed awake watching TV until it automatically shut off around 11:00.  I eventually fell asleep but was woken up around 1am with the noise of another patient coming into our room...a baby, who was coughing and crying on and off all night.  The second I fell asleep...he'd cry and wake me up. Yes...I was ready to go home.

Thursday morning I was up and ready before I normally would have been.  Jason arrived and we were ready to go home...except we had to wait...and wait...and wait.  The doctors were later than normal for rounds, and we were helpless without discharge info and scripts for medication.  I was crawling out of my skin.  Emily's eye looked alot less swollen, still red, but not nearly as much.  If they didn't discharge her today I might have seriously lost my mind!

Eventually we were cleared to go home and no one was happier than Emily, she missed our two dogs, one of which we had just adopted days before she ended up in the hospital.  She was scared Cassie wouldn't remember who she was.  I assured her that no one, even puppies, could ever forget her!  We left with instructions to see a retina specialist, Dr. Lalin, in a few days and numerous scripts for meds. The nurses were kind enough to send us home with the remaining pre-dispensed dosages that she would have been given that day, which was a blessing since it meant we didn't have to rush to the pharmacy. We could just go home and rest.  

We hadn't planned on a 5 day hospital stay, but we got through it.  It wasn't easy on any of us, but Emily was probably the most tolerant of the situation.  She was the one going through this and incidentally was the one who complained the least.  God Bless Her. I wish I was as strong as she is.

The photo below shows a good side by side comparison of what her eye looked like on Monday, at its worst...and then on Thursday after we were discharged. On the left, she couldn't even open her eyelid it was swollen so much.  On the right, there was still some interior redness and swelling, but it was much, much better.

Needless to say, the puppies were super happy to see her when we got home :)