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...

The Journey Begins...

Tomorrow marks the beginning of our journey...

Questions will hopefully be answered...and a timeline will be set-up....
            (hoping for after the holidays....)

Three appointments...
     ~two to make sure her medications are working and that her eyes are not inflamed.
             I already know the answer....they will need to change her medications...her eyes are getting slightly red again....She says they don't hurt, but I think she's used to the discomfort.
      ~the third to meet her surgeon in Valhalla (only 30 minutes outside of NYC)
              I have so many questions....I have them all written down....I was afraid that I would forget. I want to make sure everything is taken care of , and nothing is forgotten. I'm scarred of the answers I will get. 

I'm still holding it all in. I'm afraid to let it all go and just cry. I almost lost control the other day watching her dance. She was magnificent! 
Absolutely beautiful....

Over the past couple weeks, I have found ways to keep myself occupied and was trying to come with some things to make her trip easier...

I ended up making her a pillow to keep her comfortable. After I finished making it she asked if we could go camping. Funny girl, I told her "Sorry hunny, all the campsites are closed its way to cold to go camping, unless you want to sleep in the snow"
       Her response..."But I like the snow!"

I added something a little special....a super-girl emblem. My baby girl is Super~girl! She is the strongest, bravest, kindest person I know! Always concerned about others, always thinking of others, and she deals with the discomfort and pain everyday with no complaints. My heart breaks for her...I just want to be super too and make her better...




 

Becoming a parent is one of the most scariest adventures....
  You have doubts that you will be good enough, that everything will be alright. You worry about the right kinds of diapers, too much television and are they really getting everything they need. 
  Your children become your whole life and you hope to do everything you can for them. 

We had a beautiful baby girl on July 13, 2009. She was our world! The first year, we watched vigorously as she crawled, got her first tooth, walked, said her first words and more...

But as we got past her first year, she started to develop trouble with her eyes...
  She would get styes the size of the tip of my small finger, which have left some scarring on her eyelids. Her eyes would look red and irritated, quite like pink eye, very often. Its hard going into public places and being asked "What's wrong with her...", "Does she have pink eye", "Is she contagious..."
  

 We started taking her to specialist...
          The first one told us there was nothing wrong with her.... (idiot)
                 The second one told us it was dry eye and she would grow out of it. Our goal was to give her eye drops at night and twice a day...
                 Now those of you that have children know how hard it is to give medication. So imagine having to pin down your child twice a day to put drops in their eyes...

Her eyes would be good for a couple weeks, she would be able to see and to function like any other normal child. But during the time of her "episodes" it was very difficult. She became sensitive to light, so getting up in the morning took extra long because it hurt her to open her eyes. We keep sunglasses all year round in our vehicles and in the house. She would wear them to school, shopping and around the house. She would be in so much pain that it would hurt to brush her hair no matter how snarl free it was. 
My baby girl was in pain and it felt that there was absolutely nothing I could do about it...

We finally found a third specialist, because what we felt we were doing wasn't good enough...the "episodes" continued...

May 2012: The pediatric ophthalmologist in Albany, NY told us it was dry eye but gave us a different regimen for us to use to treat her. Our daily routine consisted of eye drops in the morning, evening and night, cleaning her eyes with baby shampoo every night before bed and a cream to keep them moist at night. Her vision at this appointment we were told was right where it was suppose to be, which was our biggest concern. 

For the next year, the time in between episodes was longer, but every now and then she was still dealing with pain, inflammation and light sensitivity. 

Eight weeks ago, we took her back to the ophthalmologist in Albany for a check up. She was going through an "episode" and I wanted to keep on track of her vision. So I drove four hours with my four year old, to find out that her light sensitivity had gotten so bad that we couldn't even make it through the initial exam to check the dilation in her pupils. Immediately they sent us to the cornea specialist across town. The same thing occurred there...
The only way to exam her eyes would be under general anesthesia. Hearing that my baby not only has been in pain, but will now have to go into "surgery" for her eye exam wrenched my stomach.
We would return in 2 weeks after being given a steroid to take away the inflammation for them to examine her eyes. We arrived at the hospital at 6 am, they took us in, explained everything in great detail, and carried her off...
It only took a half hour, but it felt like forever, wondering how she was doing...what would they discover...would we finally get some answers!!

The cornea specialist and the pediatric ophthalmologist came out and I could feel myself starting to shake, and my palms getting sweaty...
We learned in the next 10 minutes that "her oil glands are not producing enough oils to keep her eyes clean and moist, which is causing her eyelids to become inflammed and a great deal of irritation, because she as been through so many episodes of this she has scarring on her corneas." They were hoping that it hadn't effected her vision and that she would only need glasses...that was our hope, just glasses and some medication...

We returned again, in two weeks after the surgery to check her vision. She had been on the steroid for 4 weeks at this point. It was the first time since we can remember that she was actually looking at us, she was lifting her chin up to see around her. She hadn
't worn her sunglasses in 2 weeks. This was such a huge change for us! We just knew that all she would need was glasses!
 We met the cornea specialist first....
       She would need cornea transplants.....
 We then went to the pediatric opthalmologists....
       Her vision was 20/100, 20/800....She would need cornea transplants....  

How do you tell a child that this is what they need?? How do you explain that in just a couple months she will be going through surgery and wont be able to see for awhile...

How do you tell yourself that everything will be ok...that you did everything that was possible to help her out....
What if you had gone earlier...what if you had given her a different medication...what if...

The past couple weeks since we have been to the doctors this is all I can think about...

Can I take her place...can I take her pain...