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May 30, 2006

More Good News...

Isabella, Misty and Grandma got back from another whilrlwind trip to Iowa tonight. Isabella saw Dr. Goins today and also went to visit the ocularist to get a new conformer.

The news out of Iowa was fantastic. Dr. Goins said that her cornea is looking very good. She is healing up very quickly and he has scheduled an appointment for June 12 to take some, if not all, of the stitches out. At that point, they will refract her to determine how much correction she is going to need. If we are lucky, she will just need glasses. If we aren't as lucky, she will need contacts. I can't imagine putting a contact in her eye, but the doctor assures us that it is a lot easier than we imagine. I remember trying to put them in my eye and it wasn't easy at all... Dr. Goins told us to stop putting the antibiotic drops in for now and maintain the existing schedule of the steroid drops. We are at every three hours, which sounds pretty bad, but it is much better than the every two hours we were at.

One other interesting thing that we got this week was the post operative report. It was very interesting to read the how the procedure happened. Aside from that, though, there was some information about the donor. The donor was a 39-year-old man that died on May 10, 2006. We don't know anything more about him, but we owe him a debt of gratitude that most people can never understand. His decision to donate his cornea and his family's decision to support that has given Isabella the chance to see.

He is turning into a gaming monster... At least its not World of Warcraft. Yet.
We are getting more smiles... Now with bubbly goodness.
Another smile... Big brother not so much.
His first, and hopefully last, experience in jail.

More to come...

May 24, 2006

Armchair Quarterback

I am not a doctor. I don't play one on TV. I didn't even stay at a Holiday Inn Express last night.

Over the last week or so, I have allowed the limited knowledge that I have to stress me out because I thought I knew what I should be seeing.

Flash back about a week. We were taking new pictures to post up here. When I took this picture and blew it up to take a good look at here eye, I saw something that I didn't think should be there. Complete fear flooded my body. My fear was that she had started rejecting the cornea. And since I am a natural born worrier, my stress fed on itself until I was convinced that she was going to need another transplant. This was before we had even spoken to a doctor.

The next morning, I called Dr. Goins office and they told me to call Dr. Grin to take a look at Isabella. The were able to get us in right away and Dr. Grin looked in here eye and said that what we were seeing was her iris and that her cornea was still completely clear and looked very good. With a sigh of relief, we headed home.

Unfortunately, the relief only lasted about two days for me and I started to have doubts again. Things still just didn't look right to me. As the trip to Iowa got closer, my anxiety continued to rise. The morning of the appointment, it was so bad that I could hardly eat.

We went into the appointment and Dr. Goins asked us how things were going. I proceeded to tell him my concerns and told him what I thought I was seeing... Something reflected back where her cornea was supposed to be clear.

Dr. Goins just chuckled at me and said that it was probably light because her cornea was clear and that it was something that we hadn't seen before. He proceeded to start his examination, the whole time saying that things looked great. More doctors came in, performing more tests. The whole time, they kept saying very reassuring things..

Dr. Goins patiently answered all of my questions and then told us that everything is going fantastic. He changed around some of the medication schedule and told us to come back in a week. We walked out of that appointment and I felt the stress fall away as I realized that we were working with a lot of very smart people and I should not second guess any of them.

I am not a doctor...
I am not a doctor...
I am not a doctor...

More to come soon...

May 16, 2006

A Clear Window

They say that the eye is the window to the soul. After a one-month delay, Isabella's window is much clearer today.

Isabella's surgery was scheduled for 11:00 yesterday. We got to the hospital at 9:30 and ended up waiting for about an hour before we went back to the pre-op area. At that point, Isabella was weighed and the nurse started administering the antibiotic and dilating eye drops that she was going to need before the surgery. While we were waiting for the eye drops to take effect, the parade of doctors and nurses began. We met with two anesthesiologists, a doctor that was going to be observing, the surgery nurse and Dr. Goins. Dr. Goins is the surgeon that actually did the transplant. Everyone was very confident, which really helped put Misty and I at ease. After making sure that we had all of our questions answered, they took Isabella back to the operating room and we went out to the waiting room.

And we waited...
And waited...
And waited...

After about two hours, one of the other doctors that we had originally seen, Dr. Keech, came out to talk with us. He said that Dr. Goins had some concerns about some mucous discharge from Isabella's tear ducts and that he really wanted to take care of that while she was asleep. This is primarily because a blocked tear duct can lead to infection and that infection would be right next to the transplant site. To resolve this, they were gong to have to do an additional procedure in which the probe through the tear duct to make sure that it drains properly. We consented and off he went to take care of that.

And we waited...
And waited...

After an additional fourty-five minutes or so, Dr. Goins came out to talk to us. He said that the the transplant looked great and that there were no complications. He said that her retna looked fantastic and that we should have great expectations for vision. His only concern was the possibility of infection related to the mucous discharge. To counteract any possibility, he decided to put her on IV antibiotics while we were still in the hospital and then oral antibiotics after we got home. One thing I have to say about Dr. Goins is that he is ultimately confident and if he told me that they sky was green that day, I wouldn't have bothered to look.

He answered all of our questions and left and we had to wait a while longer before they took us back to the recovery room. Isabella was wide awake when we got back there and had already drank 4 ounces of pedialyte. From there, they took us up to the room and we were allowed to relax a bit.

This morning, Dr. Goins came in to look at her cornea and told us that her cornea still looked great and that we could go at any time. We were originally going to stay an extra day in Iowa and come back tomorrow, but we decided that we would much rather come home.

Now, the real fun has started. We have to give her two different eye drops every two hours. 24 hours a day. Every day. For a couple of weeks at least. Misty and I should be walking zombies in a couple of weeks.

Isabella chilling out right before surgery.
Noah and Isabella relaxing.
Isabella and Mommy in the recovery room.

More to come...

May 15, 2006

Short & Sweet

It has been a very long day and I was going to not post anything tonight, but since there are lots of people clamoring for an update, I figured that I had better post something...

Things went very well. The operation went smoothly and Dr. Goins said that Isabella's retna looked to be in great shape. In his opinion, she has a fantastic chance for usable vision.

I will post more information in the next couple of days. For now, its late and I'm tired.

May 14, 2006

Twelve Hours

In a little more than 12 hours, Isabella will be going in for her corneal transplant. At 11:00 tomorrow morning, she will be heading into the operating room.

Last week at this time, I predicted that I was going to be a basket case. Surprisingly enough, both Misty and I are pretty calm at the moment. I think that we have prepared ourselves as best we can for the surgery and are just waiting for the hour to come. Tomorrow at this time, the stress will come and Misty and I will rely on each other to maintain our sanity.

I will post updates and information as it comes.

May 11, 2006

Diverted

In the past few weeks, Misty and I have crossed paths with hundreds of people and we have told Isabella's story to many of them.

When we talk about the shock that we experienced when we first realized that there was something out of the ordinary, almost every one of them nods their heads and responds that they would feel the same way. There have been a couple that have asked if we had ever read the poem "Welcome to Holland" by Emily Perl Kingsley. Misty and I received a copy of the poem from her sister a couple of days after Isabella was born.

Welcome to Holland
Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills – and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things about Holland.

There isn't much more that I can say... We planned on going to Italy and ended up in Holland. Its not the end of the world; Its just different.

Onthaal aan Holland

May 07, 2006

One Week

One week and counting. In a little less than a week, Isabella is going to have her cornea transplant. And next week at this time, Misty and I are going to be complete basket cases.

On a daily basis, I go through thousands of scenarios in my head. When we spoke to the surgeon the last time, he spoke about the rewards of corneal transplant. That with care and follow-up, Isabella should be able to see better than I do without glasses. That with correction, Isabella should be able to see well enough to do everything that a completely normal sighted child.

On the flip side, he also mentioned the risks of corneal transplant. There are the normal inherent risks of any operation, such as infection. There are also additional risks with this particular surgery. Infants eyes are very difficult to operate on because of the size and elasticity.

As much as I try, it is hard to get those out of my head an concentrate on the good stuff. I know that the rewards outweigh the risks and I'm sure that everything will work out, but it has been hard to get the bad stuff out of my head.

I guess I'm already a bit of a basket case.

Now, for more photos...

Mommy and Isabella doing what Mommy and Isabella do best.
Mommy's little helper.
Is it a smile or just gas?
Protection will not be a problem...

More to come.

May 02, 2006

Angry Young Man

Those three words are the only way that you could explain Noah tonight.

Considering all of the changes that have gone on over the last few weeks, I am really surprised at how well Noah is taking things. There are two things that Noah doesn't handle all that well... invaders and change.

Recently, a small invader has appeared that has brought forth tons of change. We finally saw a little of that frustration boil this evening.

It all started out pretty simple. About 15 minutes before bed time, I asked Noah if he wanted a snack. He told me that he didn't want anything and that he just wanted to play. He and I went outside and kicked a ball for about 20 minutes before I told him it was time to go to bed. We came inside and at that point, he ran over the the freezer and said he wanted a popsicle. I told him no and the meltdown commenced. We took him to bed, gave him a kiss and told him good night and then left.

And 45 minutes later, he was still crying. He finally calmed down and crashed, but since he was up for almost an hour past his normal bed time, I am going to be prepared for more crankiness tomorrow.

Now... The promised pictures...

Isabella playing hard.
Isabella and Noah watching TV together.

More to come...