Isabella's surgery went over without any issues. They got in there, found exactly what Dr. Grin had been talking about which really made me feel better after the first appointment that we had. Dr. Russell said that they were going to remove it and it shouldn't take too long at all. For over anxious parents, long is a very relative term and for the next hour or so, Misty and I spent our time trying to read, play solitaire or just talk. None of it worked; we were too preoccupied. Dr. Russell came out and told us that everything had gone fine and that Isabella was in first stage recovery and that they were going to let us go back shortly. No too much longer went by when one of the recovery nurses came in and called our name. Misty rushed out the door and down the hall and I tried to keep up carrying everything that was left in the waiting room. As soon as we turned the corner into the recovery area, we could hear Isabella screaming. Misty rushed in and got Isabella and, just like it always has, the screaming stopped.

First stage and second stage recovery went quickly. The doctor came by to tell us that they had only shielded her so she would still be able to see and when we were ready, we could take the shield off and put on her glasses. Not too much longer and they sent us back to the Ronald McDonald House for what we figured was going to be a long day. It wasn't too long after we got in that Isabella started fussing. I wasn't to surprised because it had been 14 hours since she had eaten anything. We got out some snacks and took off her arm splints and let her start eating. She wasn't doing any of it visually, so we decided it was time and took off her shield. At that point, other than looking like she had been in a bar fight, she started acting normally. Crawling around, playing and singing; just like normal. We actually had people ask when her surgery was scheduled for after we had told them she was there for surgery.

This week she has been just like normal. Being herself and doing her therapies. We have to keep telling ourselves, and everyone else, that she just had surgery. Not that I'm complaining that this has been easy, its just odd to have one that is this easy.

Since we had some time, our first stop was Iowa Eye Prosthetics to see if Vaugn could work her magic on Isabella's eye. She took it out, put it under a magnifying glass and then looked at us like we were nuts. She said that Isabella probably would have been more comfortable with a rock in her eye and then went back and polished all the tooth marks and scuffs off of it. She put it back in and then we discussed our options for a new eye. Isabella has had this one for about seven months and she is starting to grow out of it a bit. Based on that, and the fact that they are going to be dropping our insurance at the end of June, we decided that we should make an appointment pretty soon to get a new eye made. We'll be back up here for another two day fitting and painting session in the middle of June.

After we were done there, we went over to the hospital for our next set of appointments. The first thing they had us do was to go through the standard pre-op procedures... height, weight, etc... After that, we went back to see Tom, the ocular stenographer. Isabella was very good and let him get all the pictures that he needed to take of her retina, ocular nerve, shunt and bleb. We could see that her retina was attached and sitting pretty at the back of her eye. At this point, we went to the retina clinic to meet with the doctor that was going to be handling all the pre-op work on that side. The important thing here is that this is not the same doctor that will be doing the surgery tomorrow. This was one of his colleagues.

This is where the first came in... This was the first time that I have been less than impressed with how things have been handled with Isabella's case at the University of Iowa. The doctor that came in was not familiar with her case, so I can understand that it would take a few minutes to get up to speed. I also know that they were understaffed and he was rushed to get through his caseload today.

The doctor came in, looked through Isabella's chart and began to dictate to a med student that was with him at the time. During all of his dictation, I heard him say that Isabella had a detached retina. Now, I'm not expert, but I'm pretty sure that we saw the ultrasound and saw that her retina was exactly where it was expected to be. In fact, Tom even gave us a print out of her retina and pointed out where it all was. At this point, the doctor did a binocular indirect exam (the one where the doctor puts on the mining helmet thing and looks through a very big lens to see the back of your eye). He dictated to the student what he was seeing and told him that he saw a possible shallow detachment. At this point, I confronted the doctor to ask what he was talking about. He told me that Isabella had a detached retina, but he could not see where she had any choroidal swelling. It was at this point that I figured out he was looking at the report from back in October and told him that. At that point, he said, "Oh, you are right" and changed his notes to say that there was no detachment. From there on out, it went downhill. He told us that he really didn't see any reason for them to do anything more than the exam under anesthesia tomorrow and that they wouldn't do anything else. I asked him about the membrane that we know is there and he said that there wasn't anything there and that was pretty much the end of the conversation.

We left the hospital and my first reaction was to call Dr. Grin's office and let her know what was going on. She was out of the office, but they called her to let her know what was going on and very shortly thereafter she called me. I gave her the whole story about what was going on and she said that she needed to call and talk to them. About 15 minutes later, I got a call back and she said that she had spoken to the doctor to find out what the story was. She explained to me that she had previously spoken to the doctor that was going to be doing the procedure and that he was fully aware of the situation and that this doctor wasn't looking for what she was looking for. I got the distinct impression that she may have given this doctor a piece of her mind and I can honestly say if that is what happened, I don't envy him at all. Dr. Grin gave me some advice on how to handle things tomorrow and then told me that if anything at all comes up tomorrow that we need her assistance on, to call her and she will do what needs to be done.

So, we are approaching tomorrow with some additional trepidation... That's nothing completely new, there is always something. I'll be sending out text messages tomorrow to keep everyone posted and will make sure to post a complete writeup of what goes on during surgery tomorrow.

Lets start with Noah. Fourteen months ago, he was just getting rolling in kindergarten. He sprinted through kindergarten and is almost done with the first grade. He really enjoys school and, for the most part, continues to stay out of trouble. He is seven, so "out of trouble" is a relative concept, but we haven't been pulled aside by the teacher or principle too many times. Despite the general insanity that occurs in our house, he has turned out to be a pretty typical seven year old. He loves Spongebob and Guitar Hero and tries to get out of his homework as much as possible. He has definitely taken on a lot of curiosity from me, which I dearly love to watch. He experiments with new things all the time. Last summer, he was convinced he wanted to be a biologist when he grew up, so we spent a good chunk of time wading through puddles and turning over rocks looking for anything creepy and crawly. He still maintains a healthy collection of toads in his room as well as a skink and a hermit crab. If it were up to him, he would have thousands of critters in his room and I would probably let him do it. Misty has set him to a maximum limit of cages in his room, so we are stuck for now. Recently, he has gotten interested in electronics. We have built a few projects and he is constantly on the lookout of bigger and better things to try out. The only minor mishap was when he decided to find out how hot a soldering iron really was after I told him it was too hot to touch... one small burn and blister later, he now knows that its not something to touch. Natural consequences.

Isabella... Now, she has turned out to be a handful. When we last left the saga, she had slightly elevated ocular pressure, but everything was on a pretty smooth course. By now, I should realize that any time I feel like things have smoothed out, its time to start looking for the next shoe to drop. Isabella's ocular pressure continued to creep up to the point that she was in the glaucoma range. We started drops for that and everything levelled off for a while. Then, her pressures started back up again. At that point, we were on for another trip to Iowa to have a shunt installed in her eye to help alleviate the pressure. It worked well and it seemed we were back on the smooth course. Then, the shunt started to work to well, which dropped the pressures way too low and allowed the internal structures of her eye to swell up and completely block off her sight. Another trip to Iowa, some change in her medication and after a few weeks, things mellowed out and her sight came back. That was back around Thanksgiving. Since then, things were improving... We were down to one drop a day and it seemed like we were charging forward. That was until about two weeks ago. During a routine eye appointment, Dr. Grin told me that there appeared to be a membrane that had grown across her visual axis and that it was restricting her vision. The impact on her vision would be similar to driving down the interstate a few days after a snowstorm without and washer fluid. You can see, but it isn't that great and it gets really annoying. Isabella has been very annoyed recently... She tells us by taking her glasses off and handing them to us as if to tell us that they aren't working the way she wants them to. So, tomorrow morning, we are going to be back on the road to Iowa for yet another surgery. We have been told that this should be a pretty simple surgery and we should expect her to recover pretty quickly.

Aside from all of the eye things, the changes in Isabella have been amazing. She is very close to walking right now and was put into orthotics last week to help straighten out her ankles. That has helped her take a few independent steps. She gets so excited that she is walking that she falls down, but its a start. She isn't really talking yet. Well, not English anyway. She speaks Isabella and Misty and I are her translators. She loves to sing and probably spends more time singing than she does talking.

Misty and I spend our time directing traffic, making sure everyone gets where they need to be when they need to be with the right clothing and full bellies and in general trying to organize chaos. Misty and I get a lot of comments about how strong we are in dealing with all of the stress that has been dumped upon us... I don't think either of us feel particularly strong, we are just doing what we need to do to make sure that both of our kids get what they need... They don't see what happens when we finally get a chance to slow down and consider what all is going on; there is usually at least one of us losing it at the time. Misty is amazing... She keeps everything held together while we deal with the insanity. All while working, going back to school and making sure that we all have clean underware. She hasn't changed much in the last 14 months; she is still the same amazingly strong woman.

As for me, I'm getting older and greyer. Eventually, we will reach a truly smooth path, but until then we'll keep running at full speed regardless of how we feel.

Me, I'm tired...

A lot of things have happened since I last updated. Isabella has another surgery to resolve the secondary cataract that developed after the transplant. That surgery went without issues and all of her follow up appointments have been pretty painless. Her ocular pressure has creeped up a little bit, but it is still below the glaucoma threshold, so we are very lucky there. She has been in glasses for about 2 months now and she is doing pretty well with them. You can tell a definite difference in how she reacts to things when she is wearing them and, for the most part, she does pretty well with keeping them on. The biggest problem to keeping them on is when she is bored. Off the glasses come and into her mouth they go. She only has two teeth, but she can really tear up a pair of glasses pretty quick. We were warned about this, but I wasn't thinking it was going to be this bad. We will be replacing her glasses at the end of this month.

Aside from her eyes, Isabella has started doing all kinds of new things. She is rolling over a lot and starting to use rolling as a way to move around. She doesn't sit up all that well yet, but I think that is getting close. And as for food... this girl can eat. No question about it. She hasn't met a food that she doesn't like yet and I'm not forseeing that happening. At her 6-month appointment, she was 19lbs 11oz and 27.5 inches long. That puts her in the 97% percentile for both height and weight. She is also cooing up a storm and loves to sing and play. It won't be too much longer before she is crawling and talking.

Noah started kindergarten back in August. He is doing really well. Aside from a few trips to the office to talk with the principle, that is. He is already reading some common words and trying to sounds things out that he can't figure out. He gets frustrated when he can't figure it out quickly, but he is trying. His birthday is coming up and he has decided he wants to have a party this year. I think he invited the entire kindergarten class at his school. I'm OK with that because this is the first year that he has actually wanted to have a party.

Aside from that, there hasn't been a ton going on. We stay busy just keeping on top of things. Since I know that people are reading, I'll get back to posting. And, I will get photos up here as soon as I can get them off the camera.

Today, Isabella had a pretty extensive examination. They did the exam under anesthesia and, while he was in there, Dr. Goins was going to remove any stitches that needed to be taken out. We went to the hospital at 6:30 and they took her back to the operating room at 8:00. After about 45 minutes, Dr. Goins came out to the waiting room to fill us in on the details.

First of all, he is very happy about the health of the graft. He said that it was crystal clear and that she is healing very quickly. Based on the progression of the healing, he decided to take out all of the stitches that were in there.

Secondly, her occular pressure was fantastic. One of the biggest complications with Peter's Anomaly is glaucoma and so far, Isabella is far below the threshold before they start worrying about that.

The last bit of news was the bump... When Dr. Goins did the transplant, he also did a lensectomy and removed the lens capsule to resolve the cateract. In Isabella's case, she has started to regrow some lens material and other membrane behind the iris. This has reduced the size of her pupal opening from 5mm right after the transplant to 1mm - 2mm currently. Dr. Goins was surprised that this has occured, but said that it wasn't completely uncommon with infants. The good news is that this is repairable. The bad news is that it is going to require two more anesthesia trips. One to do the actual surgery and one to remove the stitches from that surgery.

So, overall, the news was mostly good. Just a small bump in the road.

More to come soon... Pictures too.

In the case of a transplant, the recipient is given a very small amount of information about the donor. For some people, what they give you is more than enough and they want to continue to live in anonymity. I can understand that, but I wanted to know more. Without crossing any lines, I wanted to find out as much as I could. I wasn't able to find much about the donor, but what I was able to find gave me tremendous insight into his life.

I'm not sure all of this information should be available for public consumption, but I'd like to the donor of Isabella's cornea to know that I'm going to drink a beer in his honor on his birthday and on the anniversary of his donation.

Knowing what I do know, I'm sure he will appreciate that.

More to come soon...

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...

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...

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...

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.

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.

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:

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

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.

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...

We got back from Iowa on Friday night. Isabella got a new conformer while we were there. It was about three sizes larger than the one that she had originally had in there and it looks a lot more natural than the other one did. Since she went up so many sizes, we don't have to go back until we go back for her corneal transplant. I'm really happy about that... It is going to allow us to try to get back into some sort of a routine.

One exciting thing about our trip out was our stay at the Ronald McDonald House. The Ronald McDonald House is a non-profit organization that is designed to help families with a place to stay while their children are in treatment. This was our first time staying and I have to say that it exceeded expectations. The room itself was nicer that most hotels. There was also a well stocked pantry and a kitchen area. The excitement came when I mentioned to the night manager, Kira, that there was a small issue with the sink in our room. It wasn't draining properly. Kira first offered to put some Drano down the sink, but they had run out, so I offered to clean it out. She brought in a bucket and some gloves and I pulled off the trap and out came a big nasty hair ball. Unfortunately, that wasn't the end of the clog. The drain still wasn't working right, so I asked Kira for a hanger and I bent it up and pulled out the rest of the clog. Kira was mortified, but I really didn't mind... The fact that we were able to stay at the house was more than a trade for a little plumbing work.

Aside from that, it was a pretty uneventful trip and uneventful weekend.

More to come soon... Pictures, too.