I don't belong in Vegas...

... I don't like to gamble. The thing about Tate's eye condition is that it's pretty rare... there is no "normal". I mean, they kinda know what to expect with a typical PHPV case, but when things go a little haywire like they have with Tate, it's hard to predict a timeline on the rest of it.


When we arrived at the surgeon's office yesterday, it was the first time we had met him. He began by telling us that he doesn't perform an enucleation (eye removal) on children unless it's absolutely necessary. He went on to explain how removing the natural eye can affect facial structure as he grows (I keep picturing the guy from The Goonies, which I know isn't realistic, but I just can't get past it). He also described the two methods of replacing the eye... either a plastic sphere or a butt-fat graft (yes, I'm aware that's not the technical term, but it's how I remember it) that would be sewn in and attached to the muscles, over which would fit his prosthesis. With the sphere, we risk Tate rejecting it since it's a foreign object, and "spitting it out". But with the butt-fat graft, even though it should be better accepted, we face a possibility of graft failure. So at this point, Dr Y asks, "So what would you like to do?"... hmmm... I think I'd like to jump of a cliff now, thankyouverymuch. 


We have hit brick walls every step of the PHPV path. Most PHPV kids have anterior or posterior... Tate has both. Most PHPV kids have at least some vision out of their PHPV eye. Tate has none, and no chance of regaining it. Most PHPV kids don't ever have a problem with pressure... Tate has neovascular glaucoma. Most PHPV kids don't experience eye degeneration... Tate's started with band keratopathy (the calcium deposit over the cornea that makes him feel like something is in his eye) and has a bone growing in the back of his eye from calcium deposits, which causes him pain. So forgive me if I'm not 100% confident that the enucleation and prosthesis will go on without a hitch. I have this "What else?" attitude right now, and I just can't seem to shake it.


So back to my gambling analogy.... as I said in a previous post, Tate hasn't been complaining of pain much at all in the last 2 weeks or so. As far as I'm concerned, that's a God thing.... an answer to hundreds of prayers. I don't believe Tate is completely pain-free right now though. I do believe that his baseline for pain tolerance is a lot higher than yours or mine. So since he's not having additional pain right now, he's happy. Considering it wasn't that long ago that he was in enough pain to say that it hurt a lot, I'm happy too. So with his pain being bearable at the moment, we had to decide if maybe we should wait on the surgery.... give him that extra time to let his facial structure develop, so any asymmetry that might result would be lessened. But if we wait, we risk having to do it in "crisis mode" in the middle of the school year, disrupting his life quite a bit more. Or we go ahead with the surgery now, to relieve the pain he has, and we risk my kid looking like the guy from The Goonies when he's 19, and hating me forever because we jumped the gun on the surgery. Ok, ok... I know that's a little extreme, but I'm feeling pretty extreme these days. The point is that we don't know how long we'd have before he'd lose the eye due to it shrinking up and having to be removed, or the pain being intolerable. We don't know, the doctors don't know, no one knows except God. I explained to the doctor that we knew that removing his bad eye was inevitable, and I'd just as soon have it over with before he starts school in August. The doctor agreed with me that that's a benefit to doing it when he's young... kids aren't quite as mean at that age. When I asked him at the end of our appointment what he recommended, he said "If I thought that my child was in any pain, enough to affect his quality of life, I'd take it out." I appreciated his answer and his honesty, but I was still torn about letting my kid look like Sloth.


So what do we do? Well, I take the advice from a friend and ask my four year old what he wants to do. Yes, I've resorted to leaving a life-changing decision to a guy who entertains himself with Mickey Mouse Clubhouse every morning. I asked him in a hundred different ways, and his answer remained the same... "I want the doctor to take my eye out because it's sick and it hurts me." Me: "But when I've been asking lately if it hurts, you keep saying no." Tate: "No.... I've been saying it always hurts a little bit." Me: "So it's hurting now?" Tate: "No, it's not hurting now." Yep, that's pretty much how it went. So I had Sarah talk to him today too... She had almost an identical conversation with him. But it did make me feel better to know that he's more than ok with this surgery, he's actually saying he wants to have it done. He tells me he doesn't want his eye to hurt anymore. That's all you had to say, Tate. His surgery is scheduled for January 21st.

Tate's Story... PART THREE

Tate was pretty good about taking his drops... most days. They seemed to take the edge off a little, but never really took the pain away. We continued to stay in close contact with our PO, and had to change drops after a while, trying to find something more effective. We also found out that he has calcium deposits forming a bone in the back of his eye, which we were able to see on an ultrasound. That is the cause of at least some of his pain. Tate was still constantly rubbing his left eye (which we are told relieves the pressure and pain), so after a week of being called by his preschool twice (like I had asked them to) because he was complaining of pain, I made yet another appointment with our doctor. 

At this appointment, I asked the big question.... If it is inevitable that he is going to have to have his eye removed at some point, what are we waiting for? After all, it's causing him pain. This may seem like an obvious question to some of you, but let me tell you... as his mom, it was not an easy one to ask. The PO then began to tell us that neither decision (having the enucleation performed or waiting) was a bad decision, but that there could be complications with a prosthesis, and that we might be trading one set of problems for another. He may be allergic to the material that the prosthesis is made of, his eye socket may not take well to having a "foreign object" in there and may become runny or excrete mucous. We realized we had not considered this when we were talking about how it might be easier to have the painful eye removed. So we had something else to work through. Our doctor made it clear that it was our call on whether to have the enucleation done now, or wait until the pain was worse and more constant. Because we really didn't know which way to go, he suggested we make a consult appointment with Dr Y, the surgeon. 

Since we couldn't get an appointment for four weeks, that gave us lots of time to think, talk, and pray (not necessarily in that order). We decided that if he was eventually going to have to have the eye removed, we'd like to do it on "our time". We are going to have to arrange help with the other boys (Todd's mom will be coming down from Ohio to help out), and we'd like to be able to prepare for this huge event, rather than have to do it all in "crisis mode". So we decided that when we meet with Dr Y, we would tell him that we'd like to go ahead with the surgery. 

So yeah, right around then, Tate stopped complaining of pain. You have no idea how much easier it is to say "Just take the eye out" when he's in pain, rather than when he's not. I questioned our decision that we had made. Did we still need to do it? Was this lack of pain a sign of God giving us the miracle we had prayed for four years about? Were we jumping the gun with this surgery, and not giving God time to heal Tate? We knew we couldn't control when Tate would need the surgery if we decided to wait, so we were hesitantly standing by our decision to go ahead with it. We wanted him to be used to his new normal in time for kindergarten in August. I trusted that Tate's lack of pain was from the hundreds of prayers that had gone up on Tate's behalf to relieve him of pain and discomfort. Because I was still hesitant about our decision as the days went by, and Tate was not complaining of pain or rubbing his eye, I prayed to God that we would have some sort of clear sign to point us in the right direction. The next day, I noticed Tate's eye looked worse. A lot worse. The whites were pretty red, the iris was a discolored grayish brown, even more cloudy than usual. It looked like it hurt. But it didn't. Not according to Tate. Of course, this is the kid who has a high pain tolerance, and who had an inkling that we were talking about having his eye removed, so he probably wouldn't admit that it hurt, even if it did. I appreciated God showing me that we had made the right decision without causing my sweet boy any more pain. That was exactly what I needed. 

Tate's Story... PART TWO

We saw our PO very often in that first few months of Tate's life. We were able to hold off on his first surgery until he was four months old. It was October 9, 2006. I remember the date because that's where Todd and I spent our 7th wedding anniversary. Our PO and a Retinal Specialist performed a vitrectomy (coring out the scar tissue to "clean up" his eye, and a lensectomy (removing the lens with the cataract). Tate did fantastic with the surgery. He wore a big metal shield over his left eye for a while, but healed up nicely. The hardest part was putting him in arm braces for the first week or so to prevent him from messing with his eye. After healing from his surgery, we only saw our PO periodically to make sure everything was well with Tate. We started him in the Early Intervention program with our local CDSA (Children's  Developmental Services Agency) and they set us up with a wonderful case manager, and had a therapist come once a week to work with Tate on fine and gross motor skills, and special things for kids with monocular vision, like his depth perception issues. We continued to see our PO and we were just to watch for the eye "deflating" or any signs of pain. But Tate was doing fantastic... 

Until this summer. A couple of days after we returned from our summer vacation, Tate was sick... vomiting, and generally not acting himself. He told me that his eye was hurting a little bit, and he was rubbing it a lot. I called the POs office, and we were able to get in that day. Tate's eye pressure was supposed to be 12-14. It was 40. The PO said that his eye was giving him more than "a little" pain with pressure like that. That's when we first realized what a high pain tolerance our little guy has. The vomiting was from the high pressure in his eye, so they immediately started him on drops, right there in the hospital. He had neovascular glaucoma. This was a bad sign for a kid with PHPV. I was also told that Tate had band keratopathy, which is calcium being deposited on the cornea, occurring in a band pattern. That's the day the doctor first told me that his eye was beginning to degenerate and it would eventually have to be removed. I will never know why I didn't think to have Todd go with me to that appointment. It was a difficult drive home, blinded by tears once again. 

We had been told that we didn't have to do anything right away... we were going to see how the drops worked out for him, but were warned that the drops typically eventually become ineffective. We were told that Tate's eye could last weeks or a decade before having to be removed. We just had to wait and see. Typically with a degenerating eye, the pressure would get really high (as it was), then drop really low, and the eye would begin to shrink, and have to be removed. 

On our yahoogroups PHPV support group, I had heard about a world-renowned specialist in Michigan, a little over an hour from where my mother-in-law lives. He is the go-to guy in this rare world of PHPV. People literally fly from around the world to come see him. When someone talks about removing your child's eye, it's hard to just take their word for it and not question it at all. We trusted our PO completely, had every confidence in him. I think the biggest reason that we went to see Dr T in Michigan is that I didn't want Tate ever to feel like we didn't do everything possible to save his eye. Dr T concurred with our PO completely and said that when the glaucoma was out of control, it wouldn't be a bad decision to remove the eye. He said there are some painful treatments we can try to treat glaucoma that might prolong the life of the eye, but he wouldn't blame us for not wanting to put our child through that pain in the hopes that science would develop something to help him regain vision while we were stalling. We also found out at that visit that Tate's right eye (yes, his GOOD eye) contains five meridional folds in his retina. These are basically holes in the retina that make it much easier for the retina detach with an impact. We're not signing him up for those boxing classes after all, I guess. :) 

everything you wanted to know... PART ONE

...and some that you probably didn't about PHPV (Persistent Hyperplastic Primary Vitreous). We are about to end a journey that we've been on for over four long years. Many of you have asked about Tate's eye condition, how we found out, how it affects him, etc... I don't mind at all when people ask about it. I wish I had started blogging or journaling about it from the beginning, but hey, hindsight is 20/20, right? No pun intended. Anyhow, I thought I'd give a little history on Tate's condition to catch us up to date, as we are meeting his surgeon tomorrow... the one who will be removing his eye.


When I was pregnant with Tate, we decided to sell our house and build a new one. Yes, I probably WAS crazy. We did things a little backwards, but it all worked out. We signed the contract on our new home, broke ground, and THEN we put the house up for sale by owner, stuck a sign in the front yard, and I had it under contract 26 days later. Too fast! We ended up in an apartment for three LONG months while they finished building our new home. So yeah, being in a temporary living arrangement isn't ideal when you're bringing a new baby home. Especially when it's already not under ideal circumstances.


I had Tate around 730am on a Monday morning after laboring all night. I was worn out and ready to get to our room in the mother/baby unit. I was happy to find a note from the pediatrician who had done rounds already, telling us that Tate was just perfect. So we enjoyed the day with our beautiful baby boy. Todd mentioned a couple of times that he wasn't opening his left eye much. I brushed it off with a "He was just born, give the kid a break." At around 1015 the following morning, we were called by a nurse to tell us that there was a problem with Tate's newborn eye exam, and that a doctor would be coming to speak with us, but to be ready to check out right away (a day early) and head to Baptist. The next couple of hours is a bit of a blur. I remember trying to joke around, saying "Hey, I have two little kids at home... I get another night here!".. but I quickly realized they weren't kidding. They did not get a red reflex in Tate's left eye during his exam, and I was told "It could be bad, or it could be worse." We were discharged by noon, and headed to Baptist Hospital to see Dr W (our Pediatric Opthalmologist) to find out what was wrong with our son's eye. I'll never forget how tiny he looked on that big hospital bed. I'll also never forget when Dr W told us that Tate was blind in his left eye, and he would not regain vision. They did an ultrasound on his eye, and confirmed PHPV. I don't really remember much else from that appointment, other than looking at my tiny day-old baby on that big bed, and crying my eyes out with my husband. Oh, I do remember one more thing... I remember when our PO told us not to worry, there is no surgery necessary right away... "We can wait a week or two," he said.


By the time we left Baptist, we couldn't remember the name or initials of Tate's condition. We had a checkup with the pediatrician the following day, and thankfully, the pediatrician called Dr W and asked for the name of the condition, and general information. The pediatrician had never heard of it, so she asked our PO how often he sees it, to which he replied "About once a decade." I knew that if I couldn't control what had happened to our son, I could at least arm myself with information. Google, here I come.


So here it is. When an eye is developing when the child is in the womb, temporary blood vessels develop to form all the parts of the eye, then the become clear and dissolve, becoming the vitreous. PHPV develops when the temporary blood vessels don't dissolve, therefore don't become clear, and that hazy vitreous blocks the light passing to the retina in the back of the eye. Most kids have anterior OR posterior PHPV. Tate has both. This stalk of scar tissue also detached his retina leaving him blind in his left eye. The retina was encased in scar tissue, eliminating the option to reattach it during his first surgery. He also had a cataract. There are no normal structures in Tate's PHPV eye. As Tate's mother, one of my primary concerns was, "What did I do wrong? Did I forget my prenatal vitamin one too many times? What did I do to cause this to happen to my sweet boy?"... the answer - nothing. The PO assured me that it's a complete fluke, and there is nothing I could have done to prevent it.

#amazonfail controversy produces twitterstorm

Really, where do you start on a subject like this? I was shocked to hear yesterday that amazon.com has been selling a book called "The Pedophile's Guide to Love and Pleasure - A Child-Lover's Code of Conduct".  REALLY??? This sickens me to even type out the title. As a mother of three boys, I feel extremely protective already, but when I read an excerpt from the book that includes what product works well as a condom on boys under the age of 13, I have to stifle my gag reflex. 


Obviously, I am not the only one who is disgusted, sickened, and offended by this filth and the fact that it's sold on amazon.com. So I also find out that I must have been hiding under a rock over the last few years, because this is not the only trash that amazon sells. You can also find titles such as "Understanding Loved Boys and Boylovers", "I Am the Market: How to Smuggle Cocaine by the Ton in Five Easy Lessons", "Grow Great Marijuana", and "Drunk Driving Defense: How to Beat the Rap". 


I am appalled at amazon's consistent bad decisions. This is how I know that I have been living under aforementioned rock because I had not heard about the other books, or I would have terminated my business with amazon and amazon's companies sooner. I find it interesting that they actually are acting against their own policies, in that they say they "prohibit content that includes offensive material" and "....that may lead to production of an illegal item or illegal activity", yet they have several books that are rock solid in that category. 


Amazon actually defends their decision to sell this pedophile how-to guide. They issued this statement... "Amazon believes it is censorship not to sell certain books simply because we or others believe their message is objectionable," it reads. "Amazon does not support or promote hatred or criminal acts, however, we do support the right of every individual to make their own purchasing decisions."  I find it ironic that they are all about the first amendment and free speech, until thousands of comments start to show up from angry customers on the book's review on amazon.com, which are then deleted by amazon. So... does that mean only the pedophile author gets the free speech right, and not those who are offended by what he has to say? After the RapeLay video game that they were selling last year (in which the protagonist stalks and RAPES a mother and her daughters), and the immoral and offensive trash they are trying to sell now (the pedophile guide and the man/boy love book, not to mention how to smuggle cocaine, grow weed, and get away with drunk driving), I am DONE with amazon. I am boycotting all of their companies, and will go directly to the retailers from now on. I'm willing to pay for shipping to avoid supporting their filth. 


Needless to say, there are thousands of people boycotting amazon.com (just in time for holiday shopping! WTG amazon!) until the company rethinks their priorities. There has been a twitterstorm over the last 2 days that has finally helped Amazon see some light. I keep hearing that Amazon has removed the pedophile how-to book, but until I've seen an official statement (apology) from Amazon, I'm not sure I'll believe that it's gone for good. I am putting my money where my big mouth is, and will be avoiding Amazon at all costs from now on, as I see now what an immoral company they truly are.  I'm sure that even if the twitterstorm had some effect on the pedophile how-to book, the man/boy love book will remain, as well as the other criminal-activity-encouraging books they sell. 


Oh, I nearly forgot to mention my new book’s subject… “Parent’s Guide : How to Kill a Pedophile and Make It Hurt Like Hell”. Find it on Amazon soon!