Some Words of Gratitude

"No person was ever honored for what he received. Honor has been the reward for what he gave." - Calvin Coolidge

On behalf of our family, we would like to thank everyone for all that you have done and continue to do for us. Many of you have been there supporting us from the day that Emily was born. Some of you we have just met and we are now here to give each other support. And yet we may never meet others who are reading this or who have reached out to us in other ways. Your kindness and generosity has overwhelmed us and we will be eternally grateful. We will never be able to say thank you enough.

"Kindness is the language which the
deaf can hear and the blind can see." ~ Mark Twain

Hope, Sacrifice, Fear and Compassion

Anyone who has a spouse, child, parent or sibling with a serious medical condition will understand the true meaning of the words hope, sacrifice and fear. Fear sets in immediately. It's ugly, painful and follows you around like the darkness of your shadow. But even on the darkest of days, there is a tiny light called hope. When hope comes knocking at your door, you hold on to it as tight as possible and never let go. It's a difficult balance because the fear never leaves, even when hope arrives.

The sacrifice that you make as a family becomes second nature. You find a way to provide the medical care for your loved one, there is no choice...you just do it. You make changes in your life to accommodate their needs without even knowing it. I, as a mother, have made a million sacrifices for my family. Don't ask me to name them all because I probably don't even know I'm doing any of them.

Being on the inside of the "bubble" I can only see what is right around me. Emily's immediate medical care, the needs of my two boys and the responsibility I share with my husband to raise a happy and healthy family. That is my bubble. If you aren't inside my bubble...how can you possibly understand what I am going through? Some people try, others are just glad they are on the outside.

Once you have a bubble of your own...you are no longer immune to other bubbles that are like yours. You find compassion for others who are dealing with the same fear and sacrifice that you are. Suddenly you understand things you didn't before. You no longer see a sick child and think to yourself "I can't imagine what that family is going through". You can imagine it because you are living it.

FIVE Hours?

This past week Emily had exams by both her doctors in New York. Dr. Zaidman was once again very pleased at how the left eye looks, but sadly he never really comments on the right one anymore. I guess he knows it's not doing well so he doesn't bother? I don't know. But all is well with the left one and he won't need to see her for another 4 weeks. My guess is because he knows we will be busy seeing Dr. Kane fairly often...

We saw Dr. Kane this past Wednesday and talked about her next surgery. She will be going in on Sept. 24th, next Thursday. Originally she was only going in for a short procedure to open the tube in the second glaucoma valve. But it has quickly turned into a major surgery on both eyes that will require 5 hours in the operating room. FIVE HOURS! I thought I had heard him wrong when he said that, but I didn't. He will be doing two procedures on each eye and his estimated time is 2.5 hours per eye. I really don't know what I am going to do. I think I will be going out of my mind with fear and anxiety. The longest she has been under was almost 4 hours, and that was because there was a last minute complication before the surgery and he didn't know how long it was going to take to fix.

Here is what she is going to have done:

Left - Open drainage tube on 2nd valve, which is behind the lens implant, and remove the original valve which is more towards the front of her eye. It is too close to the cornea and is not functioning so it will just be removed.

Right - Originally only an exam was to be performed on this eye. But because of recent high eye pressure, the valve is going to be removed and instead of replacing it with another one, she will have a procedure called a Trabeculectomy done. This is done to create another pathway for the eye fluid to drain from. Dr. Kane planned on just replacing the valve, but after talking with Dr. Zaidman he changed his mind and is opting for this other procedure.

I was told the success rate for the Trabeculectomy is about the same if not slightly higher than putting another valve in. It's the most common form of Glaucoma surgery. Dr. Zaidman wanted this done instead of another valve because he is planning on doing the partial transplant on the right eye. I didn't get specifics as to why it would be better, but all I was told was that this is what Dr. Z wanted.

Although the success rate may be slightly better, the post operative care may be more difficult. Emily's eye pressure will have to be monitored very closely for the first few weeks because if at any time her pressure is dangerously low, she will need to go back into the operating room and have fluid injected into her eye. Basically to prevent her eye from collapsing...I am not sure I like the sound of this. Can't we just do the valve surgery again?

If there is a silver lining to any of this, it would be that both eyes will be worked on that day instead of doing the left eye now and then going back to do the right eye. One less trip to the hospital, one less time she will be under anesthesia, one less traumatic experience for Emily. This will be surgery #15....with the impending transplant in the right eye as #16.

We do not go back to see Dr. Zaidman until Oct. 16th so at least I know she won't be having the transplant before her birthday. She has a little over a month until she turns 2 and I would rather not celebrate her birthday in the hospital if I can help it. She deserves to be a happy little girl on her birthday...with no black eyes.

But first we need to get through her five hour surgery. I know she will do fine, she is one strong little girl. But her mommy is starting to come apart at the seams.

My Week Off

September 13, 2009

For the first time in MONTHS I did not need to bring Emily to the doctor at all this week! Wow, I had an entire week off? What did I do with my free time? (umm....there is no such thing) Well I guess the timing was really good because most of the week was spent preparing for Tyler's birthday party and getting back into school routines.

Without this week off I would have been up until 3am every night rolling fondant and doing laundry.

However, Emily will be going to both doctors next week...Wednesday I will be in Manhattan and Friday I will be in Westchester. So on we go...

I Didn't Cry Today

September 2, 2009

It has been almost exactly 3 months since Emily had the second corneal transplant in her left eye. Today she finally had the stitches removed. The hospital had a warm, comforting feel to it today. I'm not sure if it was because the nurses all recognized us and were so amazed at how big Emily has gotten or the fact that we were only there for an EUA and removal of the stitches. Maybe it was a combination of both. The nurses couldn't stop commenting on how cute Emily was and were shocked to realize that the first time she was there was almost 2 years ago. That time span seems like a long time, but for us it has gone by in a flash. Because we are constantly at the hospital so often, each day/visit seems to just blur into the next. It's kind of dizzying now that I think about it.

Emily has definitely started to show her more independent side lately. While we tried to keep her entertained on the hospital bed while the nurse was asking us some questions, it was short lived. All she wanted to do was get down and explore. The nurse gave her a thermometer to play with, but in typical girl fashion she used it as a phone. I think she was talking to Tyler and Poppy (grandpa). But eventually she lost interest so we had to let her get down off the bed, or she would have started setting off heart monitors and pulling the oxygen tubes out of the wall! She walked all around the surgical area and up and down the OR Hallway. She would have walked herself right into the operating room if we let her!

When the time finally came for her to go into surgery, Jason suited up and walked her down. I followed them as far as I could, then I had to say goodbye. I kissed her and told her I loved her, just as I always do. "Be strong baby girl, Mommy will be here when you wake up". Then Jason took her through the double doors and out of my sight. This is usually the point in time when I get really emotional and cry. But for the first time I didn't. I was trying to be strong...I had to be strong. I didn't even have to fight back tears, they were simply not there. Was I scared for her? Of course...anytime she goes under anesthesia I am scared. But today she was not going to have anything major done. It was still surgery, but it was just to remove stitches. Oddly enough that seemed like a good reason for her to be in the hospital, if there is such a thing as a good reason.

It was a fairly short procedure, considering she's been in the operating room for upwards of 4 hours at some points. Jason and I went to get a bagel and drink and before we knew it she was in recovery. Dr. Zaidman had some good news for us. Her left eye looks great! The cornea is very clear and the lens implant is still in place. Her pressure was 21, but keeping in mind she had only had the 2nd valve implanted two weeks ago and was still on the Diamox, we knew why it wasn't as high as it had been. He suggested that when Dr. Kane goes back in to open the drainage tube on the 2nd valve that he removes the original valve because the tube is a little too close to the cornea for his liking. Dr. Kane had expected that he would suggest doing that.

But as I have learned to expect, with the good news comes the bad news. For some reason the pressure in the right eye was 30 today. Wow...30? I was really shocked at that number because her right eye has consistently been around 20 for quite some time now. Ok, lay it on me....let me guess...she needs more surgery on that eye? Ding Ding Ding! You are correct! I knew she was going to need a partial or possibly another complete corneal transplant in the right eye because of the scar tissue that formed in the center, but I was not anticipating anything related to the glaucoma. Dr. Z told us that he would leave it up to Dr. Kane to decide what he wanted to do about it, but he suggested that the valve be replaced or a second one put in. Great...once again, we can't just enjoy the good news can we?

He gave us a prescription for glasses, but told us not to fill it quite yet. We should wait until she saw Dr. Morgan and get his opinion first. She may need glasses for seeing close up because the lens implant allows her to see better far away, but causes the eye not to focus at close range.

We let Emily sleep for a while before really trying to wake her up and give her some juice. She was sleeping so peacefully...

Post Op Appointment With Dr. Kane

September 1, 2009

Today we saw Dr. Kane for his post op appointment. No infection....YAY! For a day or so Emily had been having some discharge in her left eye that caused some concern on my part, but he said it could have been some of the stitches causing irritation and thats how it works itself out. No sign of infection and her eye still feels fairly soft. He was glad to see that there was minimal redness and no bruising.

We are to continue the medications she is on and only change something if Dr. Zaidman feels its necessary. Emily has surgery tomorrrow with him to have her stitches removed. Dr. Kane also wants us to ask Dr. Zaidman if he feels the first valve and tube are too close to the cornea. If he feels it is, he will take it out when he goes in to open up the tube on the new valve. The placement of the second valve is much better for a variety of reasons, one of which is that it is no where near the cornea and shouldn't interfere with the health of the transplant. It's possible that the original valve and tube were too close and caused some of the rejection or other issues.

I am praying for more good news about the left eye. Tomorrow...stitches come out. Need to be at the hospital by 7:30 am.

Follow up With Dr. Schubert

August 25, 2009

Today we had a follow up with Dr. Schubert, the doctor who assisted Dr. Kane in Emily's last surgery. Her eye pressure wasn't tested with the machine, but he did feel her eyes and he can tell if the pressure is high or not just by how soft or firm her eyes feel. So far so good. The left eye still feels soft which is an indication of lower pressure. There was no sign of infection, which was one of our biggest concerns...infections in the eye are BAD...very bad. Her retina was still attached, I didn't know they were concerned about it not being attached so that was surprising for me to hear, but none the less good news. Her optic nerve looked ok, in comparison to how it looked 5 days ago in surgery I am not sure. Cornea and Lens Implant both looked very good and he was encouraged by how she was walking around and "seeing".

I think all her doctors are very surprised by how much vision she has right now, each doctor says the same thing. "Well she is seeing fairly well there is no doubt about that". Yes right now she is seeing well enough for her to get around and play, but her left eye has now become her better eye and shortly our focus will shift to the right eye in hopes that her vision will improve even more. Our ultimate goal is for her to have good usable vision in both eyes and to maintain low eye pressures.

We discussed options for starting the drops and Diamox again and he agreed that we should resume her medicine schedule as it was going to be about a month until the drainage tube could be opened and allow the valve to start working. I was actually relieved to hear that because although her pressure might be lower right now, it was only temporary. It would start to climb shortly and I wanted to try to get ahead of it with the meds if I could.

I left the office feeling good about how she was doing. There was minimal redness in her eye and no bruising which was nice because last time she had one wicked shiner going on. I would be seeing Dr. Kane the following week so hopefully we would continue to receive good news. Maybe this is the start of our lucky streak! Quick...lets go buy some lottery tickets! Strike while the iron is hot right? ! ? !