Is there a thing called hope?

It's been two years...
Two years since her first cornea transplant.  All of her procedures have gone smoothly. She healed really well. 
Her vision....incredible! She can now read her favorite books to me at night; she can do her math facts even after fighting with me not to do them because she is afraid of not being smart enough. She no longer struggled every morning to get out of bed because the sunlight hurt her eyes. 
There for a short time was no more pain, no more suffering...
She could be like every other kid with no restrictions! She played t-ball this year! The first year she has been able to play sports! She learned to swim this summer! No more safety gear, just free cannon balls into the pool. 
It all seemed to be coming to an end; the countless change in medications, the long exhausting road trips, the days missed from my boys, the hours missed at work...

A week ago. Her left eye became a little red and irritated, which can usually be helped with an increase in her lubricant drops. So for two days that's what I did. It usually disappears and she has no worries. But...it wasn't going away...it was worse. So I called her surgeon, who also recommended increasing her lubricant drops. Its how we spent the weekend. 
Sunday ~ The redness had gotten worse and I noticed her cornea had become blurry. 
 She never once complained, winced, cried. 
                She was in pain, and everything was blurry. 
I called her surgeon again on Monday. We increased her corticosteroid eye drops and planned for an appointment the next day. 
A trip we normally do in two days was done in one...six hours down and six hours back home...
It was a necessary trip. I was hoping that it was just a simple infection that would be healed within a few days of some antibiotics and everything would be ok....
I'm still hoping that everything will be ok...
         It was the worst news, she could have gotten....                  

She was having an early rejection episode....

the words hit me like a brick wall...I felt like I was on the outside looking in...
    Raeya was twirling around in the chair with a smile on her face and trying to get sneak peeks into the microscope that was on the table, the doctor was nervously giving me orders for more steroids and appointments...and I was just sitting there...trying to hear everything but not understanding anything.

We had done everything...so why??? Why does she have to go through this again....?

I am at home giving her medicine once an hour...still not understanding....but going through the motions. 

It's hard to have hope. But being strong for her is more important than anything else in the world. 

             It's been a tough journey already and we continue to fight. She continues to shine.

 Her spirit is not broken. 

 

November 19, 2014 ~ My One Year Blog Anniversary

November 19, 2014 ~ Marked the one year blog anniversary for my daughter, Raeya. It has been over a year since she has begun her journey to see the world again. It has been such a wonderful transformation for her! It has been a very long year full of surprises, disappointment, and overcoming obstacles. She has come so far and with just her second transplant only a few days ago...our journey is still not over.

This trip was incredibly stressful with myself being eight and a half months pregnant, and a daughter who was nervous and not so crazy about traveling anymore. Our last trip to Westchester Hospital had not been a pleasant one for her. Unfortunately when she went to have her stitches removed from her right eye, the anesthesiologist was anything but patient and forced the oxygen mask onto her face. My daughter fell asleep crying and woke up afterwards in a panic crying. It took us a half hour to calm her down and to trust us that nothing else would be done to her. 

May 15, 2014: The beginning of seeing...

May 15, 2014: The beginning to seeing...

Raeya was scheduled for her first cornea transplant. For the days and weeks that led up to her surgery we couldn't help but feel scared about the rejection possibilities, anxious about what her response would be and excited for her to finally be able to really see. 

She was scheduled to go into the OR at 2:00 pm. She was unable to eat or drink anything until she had come out of surgery.   Now for anyone else this would be a nuisance.  Your stomach begins to make those recognizable gurgling noises...you notice the people sitting near you nibble on a snack and licking and smacking their lips together...
For our four year old...this must have been unbearable...
On an everyday basis if she does not get that snack that she insist on that very second she feels she may shrivel up and die. But on this day, our four year old only questioned once why she was unable to eat. After explaining to her the side effects, just as I would any patient I would take care of, she appeared satisfied with the explanation and never asked again. 
My husband and I made sure that we did not eat without her. Which I think was more difficult on my part; being two months pregnant and dealing with the oh-so-wonderful "morning" sickness. We kept her and ourselves entertained while we watched others get ready to go into their procedures...

 Finally at 4:00 p.m., Raeya was brought into the prep room where she was gowned, vitals assessed, monitors applied and excited about the rubber gloves that the nurses had given her. She appeared pretty relaxed as if this was all something she had done before. My husband on the other hand questioned every click on the monitor, every rate being taken, and his patience was wearing thin. We both had a hard time waiting...
The hospital staff was amazing though and extremely accommodating. The anesthesiologist sat at her bedside asking her questions about home and showing her pictures on his iPhone from his recent medical trip to Peru. I think he was her favorite. It was not until 5:00 p.m. that she was taken into the OR. I was gowned up and rode along with her down her speedy race to her room. There they had set up an air pillow for her comfort. She never got nervous, or at least she never showed it. 
I believe that children have a greater sense at knowing people and she could tell by my watery eyes, and shaky voice that I was a little nervous. I held her a little tighter and a little longer...I think she knew how we were feeling and didn't let it show that  she was just as nervous as we were. I laid her on the table, sang her a lullaby...only a minute later was she fast asleep and ready for what was next. 

We were initially told that her surgery would last an hour without complications. The plan was to hopefully only remove a few layers of her cornea and do a partial transplant instead of a full transplant. Unfortunately we waited a little over two hours before she came out of surgery. Those were the longest two hours of our lives. The nauseous nagging feeling at your stomach was horrid. Nobody coming out to tell you whether everything was ok. We were the only ones left in the waiting room. 
The scarring had been so extensive that they had to remove the full cornea. Raeya was still fast asleep on the stretcher as we followed her down the hallway to the recovery room. The IV was still in place in her left hand with normal saline running to keep her little being hydrated. She had a patch placed over her right eye with gauze wrapped carefully around her head. Her surgery had been complete. We would find out within days how well it would work. 
We were just excited to see her face, to see the rise and fall of her chest. 
An hour later in the recovery room, she finally started to wake up. The first thing she wanted was some popcorn. Kids will be kids, and she was hungry! It was now 8:15 p.m. She drank a small juice from the kitchen and practically inhaled a lemon Italian ice; she probably didn't even know what flavor it was. 
After getting her cleaned up and into her pajamas, we carried her out to the vehicle to head back to the hotel room. She was exhausted but extremely hungry. We gave her some snacks, but within a half hour of being back in our room and in bed she was fast asleep. 

 Early the next morning was her first of many follow-up appointments. She never once pulled at her bandages or asked to take them off.   She waited patiently between the two of us in her seat taking pictures of herself with my phone so she could see what she looked like.  A little unsure...a little goofy...her normal inquisitive self. We were asked to take the bandages off before she went into the back private room. A couple pulls of some tape and there she was with her husky eyes...one that deep dark mysterious brown and the other a hazy ashy blue from the fresh new cornea. Not a word was said. She just glanced...everywhere...
We knew that results would not be immediate but her speechless reaction was just enough. The visit with the doctor told us that everything went well, her cornea looked perfect, and that her vision was already improved from 20/800 to 20/600.  It was a small step, but a step never the less in the right direction. 

 It has been three months since Raeya's surgery. her vision has improved from 20/800 to 20/80. We could not be happier with her results and with the surgeon, Dr. Zaidman. He is an amazing doctor, who has given our little girl another chance to see the world again. It is the first of two surgeries that will completely change her life. We are not aware of who the donor was or will be but we are extremely grateful for the gift of sight that was given to Raeya.

As a parent it is amazing to see the slow transformation that has occurred for our daughter. During Pre-K if we had asked her to color a picture, it would have been scribbles and all over the page. Her name would have been large enough to cover a majority of the paper...and now...
She can color in the lines and write her name at a mostly average size. I know this seems like something small, but to someone who has watched her suffer in pain, hating to color or write and wanting to wear her sunglasses indoors as well as out this is a tremendous achievement. 
As the end of September comes close, Raeya will go under general anesthesia again to get her stitches out of her right eye. We will follow up appointments, more medications, and another eyeglass prescription. But all this work, all this tiring traveling and fast food eating will all be worth it in the end!! She has come so far, and her journey is not quite over. 
Much love to all who support us and encourage us in our journey for our little Raeya "Sunshine". 

April 11, 2014 Blue & Green Day ~ Donate Life

Today, April 11, 2014, we celebrate across the nation those who were registered donors and gave the gift of life and those that were saved by their wonderful gifts. Today we wear blue and green to represent the Donate Life campaign. 
~ Over 27,000 a year are saved due to organ transplants.
~ Yet, an average 18 people die each day waiting for an organ. 
~ Every ten minutes someone is placed on the organ donation list.
~ An estimated 130,000 are currently waiting for an organ.

April 11, 2014 also was our daughters last appointment before her cornea transplant surgery. She sported the blue and green with pride. 
We were expecting to hear that we would have to leave at any moment, that it would be a rushed procedure, that we would be put on a list and have to wait....2 days...2 weeks...2 months....
What we found out was actually one of the better appointments we have had since this whole thing began!
Raeya will have her cornea transplant surgery on her right eye (which has the worst vision 20/700) on MAY 15, 2014!! We have a date! We can now plan! We can now begin to see!!
We discovered that because the cornea is a non-blood tissue it is easier to preserve for a longer period of time than other organs. Dr. Zaidman receives his donations from the New York Eye Bank for Sight Restoration. What happens is that any organ donors eye tissues get sent to this institute where they can preserve them for the time allotted and use them when needed. This means that corneas are almost readily available to those who need them. It is easier to schedule surgery because of this. The only reason that Raeya would not be able to have her surgery on May 15, would be 1. The doctor has an emergency that can not be postponed, and 2. The Eye Bank is out of corneas.

We also found out that her follow up appointments are not going to be as strict as previously thought. She will go in early that morning, and will be able to go back to the hotel with us that night. The next day she will go back to see Dr. Zaidman and will be able to come home for the weekend! She will have a follow up appointment the next week, and every couple weeks after. 
At the 3 month mark, she will go back under anesthesia to have her stitches removed. Between 4-6 months after she will have the surgery done on her left eye. Somewhere in between all these checkups and what not she will be fitted for glasses in hopes that her vision will get better. 

 Of course with all good things there is always a bit of bad news...
Even though the surgery may be successful, we can not tell how long the scarring has been on her corneas. We do not know how long her vision as been effected. Even though she will be getting a clear view it may not be enough to help her vision. Her eye may have become lazy, and uncorrectable. 
But we have HOPE! We are remaining positive and are trying to believe that after her surgery she will be able to see the world again!!!

Adding a little fun to every "field trip"

Excited to go swimming in a hotel pool for the first time!

Watching some morning cartoons before her appointment

She loves to capture every moment we are on the road with her camera!

Tired out from a long trip!

To See the World Again...youcare.com 

Hope to Dust

We took our Miss Raeya down again in the beginning of February for another checkup to the doctors. We really didn't know what to expect on this trip. There were nervous butterflies, and lack of conversation from not knowing what to say...(you don't want to discuss the possibilities cause it will just make you that much more anxious)

Although we were preoccupied, Raeya was quite entertained with the large amounts of toys she felt was necessary to take with her in the back seat....

She is hardly aware of what is going on besides the fact that we go on "field trips" and the doctors have to examine her eyes to make them not hurt anymore.

 

Her check up with the cornea surgeon in Albany went quite well. He was happy to see that her eyes are clear of infection and irritation. Also, we don't have to visit with him until after her surgery. Which means less traveling for us!

After meeting up with the doctor in Albany we headed immediately down to Valhalla. The day also happened to be my husbands thirtieth birthday! We celebrated once we reached Valhalla by getting bakery cupcakes and taking him to dinner.

Mmmm...delicious cupcakes!

The next morning was the most important doctor visit...he would determine what our next step would be in the process of Raeya getting her vision back. After carefully examining her eyes, he was also very happy to see how great her eyes looked. They are bright and beautiful, clear of infection and inflammation. She is no longer photo-phobic and looks up at us. He felt at this point that we may be able to fix the vision in the left eye with glasses. He thought that the scarring was low enough out of her line of vision that this may be possible...HOPE...

Hope that she would only need surgery in the right eye...Hope that she would only have to suffer through the surgery once...Hope that she would only hurt from the healing once...

You feel so much lighter after hearing a little news of hope. A smile crosses your heart and you hold on to it as long as you can. Something was finally working out for her. I smiled for days...we talked the whole way home about how wonderful this news is for us...for HER!!

I called her pediatric ophthalmologist right away..that day on the way home to set up an appointment for eye glasses. We told our family and friends about the exciting news. 

We definitely had our hopes high!

~                ~                 ~                ~               ~               ~                  ~                ~                 ~

We returned to Albany on the 5th of March. We had a complete plan for her glasses. We had told bus drivers and teachers so that they were aware of the changes. We were going to let her pick out her own glasses so she would want to wear them and not take them off. We were going to buy two pairs just in case she lost one...

The eye doctors spent two hours examining Raeya. After the anticipation and wondering how they were going to work it all out with her vision being 20/70 (left) and 20/700 (right)....I was told that after looking over her thoroughly...glasses would just not be able to help her...our only option at this point is surgery...for both eyes...

I could feel my chest tightening and my eyes starting to sting...

but 

you take a deep breath because standing in front of you watching you is your beautiful four year old daughter who has no idea whats going on...and you need to be strong...

you can't cry...

you can't shed a tear...

because children more than anyone else can sense when something is wrong...

That little bit of hope that we had...had just been crushed and turned into dust...

Hope is a horrible thing...it lifts you up and brings you to an extreme high...but as soon as that hope fades...you drop from terrible heights...

We have another appointment in Valhalla the beginning of April...and what we were hoping was to be just a routine check-up just may be the beginning of placing her on the transplant list and her journey to see the world again...

Starting out a new year...

Starting out a new year....
    This year has already started with doctor appointments. The last day of 2013, Raeya woke up with a full body rash and a temperature of 101.1. The poor baby was itching like a fiend! As soon as we were dressed we were off to the hospital clinic. My worst fear was that she was having an allergic reaction to her medications. She is beginning her third month of oral antibiotics...which can do so much to a tiny little body...(all I can think about is they are going to switch her meds again...she's developing a super bug...its going to lead to the extreme: Stevens Johnson syndrome)
    According to the clinic physicians assistant, Raeya had developed an allergy to her medications, and to stop giving her the oral antibiotic. We switched for the third time to another antibiotic...
     

   She was sick for three days straight....on the beginning of her third day the rash on her face had gotten stronger and she was throwing up. I had called the doctor after hours, and talked to a nurse far away in another state...I took her to her regular physician's office, but he wasn't in. She saw the physicians assistant who said that Raeya was fighting a viral rash and it was nothing to worry about and that her body would fight it off on its own. We were to stop the oral antibiotic that was just prescribed and go back to the original...
   How do we know what is right for her if we are constantly getting different answers....

Going to the Doctor's

We were worried if she was going to get better....She was worried that she would miss her "celebration".  Our family and friends knowing how much traveling, medications, and doctors bills that we have ahead of us put together a benefit for our daughter. Raeya was very excited about her "party" 
         The morning of the benefit her rash had just about disappeared, but the area around her eyes started to get red...she was well enough to go...bouncing off the walls excited! 

She had such a wonderful day! We could never express our gratitude for the hard work that was done to put together a fantastic spaghetti dinner, with a Chinese auction, bake sale and live music. Words to describe our feelings, a wave of emotions...burst of energy in highs and lows. To see familiar faces in our everyday lives working for our daughter, to watch a person we haven't seen in months or years walk in to support our family...how do you explain the surprise, the happiness, the excitement of everyone there coming together to make a difference for my Raeya. 
At a moment you want to cry and you hold back the tears...not tears of sadness, not today...but from joy, the happy fluttering butterflies that float in the middle of your chest that leave you breathless without words...
 

Doctor visits and Fun inbetween...

A very long three day "field trip"...
   Unfortunately began by leaving our son behind. The time on the road is too long for our very active 1 1/2 year old,  who gets very antsy and uncomfortable in his seat. It hurts to leave him behind, but he's much happier staying with family. 

We had our four hour ride to Albany, extremely uneventful, especially since we had two doctor appointments to get to. 
      ~The first doctor appointment went well. We got some good news pertaining to her vision.  Since her eyes have been clear for the last couple months they were better able to check her vision. It has slightly improved; 20/70 in the left, and 20/700 in the right. Even though it has improved it does not mean though that she will not have surgery. The doctor was good enough to offer to take on some of her follow up appointments and jokingly said to us "You had better start looking for jobs down here..."
      ~The second doctor appointment we sat for an hour at just to be told "I have nothing new to add". But also good news...we don't have to return to this doctor for quite some time!

Its a long and stressful day to sit in a vehicle for four hours and then three more hours at doctor offices with a four year old who just wants to play and move around. We brought her to Macaroni Grill, so she could eat a favorite food (spaghetti) and draw on the table. She had fun and filled her belly. 

Ready for the ride!

Enjoying her new portable DVD player!

One of many phone calls back to family for updates

The next day we got up early, drove two hours down to Valhalla where her next appointment would be to meet with her surgeon. We took the train station from Valhalla into NYC Grand Central Station. Raeya was extremely excited that she got to ride the train. She is definitely not a shy child and wanted to sit next to a couple of women my age. She kept asking me if they would talk to her and play with her. Luckily for Chad and I it was a very quick 45 minute ride into the city. 

We walked around the city first taking her to FAO Schwarz. She LOVED it!!! She wanted to see everything and touch everything. The best part of all was that she got to meet her favorite super hero....Spider-man! Raeya has always had an infatuation with him...she was him for Halloween last year.  As soon as she saw him her jaw dropped and her eyes enlarged to the size of saucers. For the first time in her life she was speechless and didn't move. You could see in her eyes the glitter of excitement and the twitch of happiness. She had met her hero. To us its just some guy dressed up in a toy store waiting for the next kid to have his picture taken with, but to a four year old with a large imagination its the guy who climbs buildings and swings from his web strands to save the people in the city. 

Everything that day was large and exciting; the buildings, the honking horns of traffic trying to pass thru, people crossing streets, construction, chattering of cellphones, flyers being handed out, Christmas music in the background of every store.

Being told "You cannot cross the chain and play in the waterfall"

But the most exciting moment of all was when she saw the angels and the lighted Christmas tree in Rockefeller center. How do you explain the excitement of a four year old...by the ooo's and aaa's whistling out her teeth, by the light in her eyes flickering the different colors of the city, or by the grin from ear to ear that won't disappear...

....at the surgeons office the next day we waited 2 1/2 hours to have a ten minute meeting. We were told in the ten minutes that we weren't even going to discuss surgery. We were told that Raeya has pediatric acne. The bacteria gets into her eyes and since her oil glands are not producing enough her eyes are unable to clean out the bacteria. The bacteria is what has been causing the styes, inflammation and irritation. It had also been causing some of her eyelashes to grow inward. He put her on three different medications to first get the initial cause of all her scarring under control. Then we must go back in two months to reexamine her eyes and discuss further treatment. We have no answers as to when her surgery will occur until we fix the cause of the problem first...so we are left with more questions and more waiting...

The waiting is the worse....I feel like we've been waiting long enough...