A new year often represents changes for all of us. Some make resolutions to lose weight, pay off debt, spend more quality time with loved ones, or quit addictions. I've never been one for resolutions, because when I "fall off the wagon", which I ALWAYS do, it would be too tempting to say "Well, maybe next year." Instead, I am constantly trying to improve on myself (and believe me, I have PLENTY to improve on!) and I don't put time restrictions on it. That way, when I mess up, I know that tomorrow is a new day. I always have a list of things I want to change, which gets to be overwhelming sometimes. I'm always trying to be more financially responsible, lose weight, and spend my time more wisely all at once. (Nope, that's not the whole list, just the ones I'm willing to admit to at the moment.) I keep saying that I'll just try working on one thing at a time until I've made it routine, then work on the next, etc. Am I the only one who is impatient? I want everything perfect NOW. If I just do one thing at a time, I might be ringing in 2012 before I even make a dent in my list! I wish you all the best of luck in attaining your goals, whether they're New Year's Resolutions, or just something you'd like to improve on one day at a time.
Tate will have some big changes very soon. His surgery is in just 12 days, and I'm sure there will be some adjustment period for us. I am looking forward to seeing how God uses this in Tate's life. I don't know if that will be anytime soon, but I know He has a plan. Thank you for loving him, supporting him, and praying for him. And thank you for carrying on with us into 2011.
If you missed Tate's front page news article today in our local newspaper, the Winston-Salem Journal, you can view the article here.
Friday, December 31, 2010
Thursday, December 30, 2010
letting my secret out
Tate's surgery was originally scheduled for January 21st. We booked that date back on November 17th. It was so far away... it was like a light at the end of the tunnel, but it was far enough away to seem like maybe it would never really happen. I guess that's my secret... hoping that it would never really have to happen. This has been such an emotional rollercoaster for the last few months. After 3 years of everything going smoothly, we figured that the possibility of eventual eye removal was just something they have to tell you so they don't get sued.
I know God will take care of us. I know people are praying for us... for peace, for comfort, for God to carry us through this. We had the absolute pleasure yesterday of meeting David and his family. They showed us that it will all be ok. Things will be normal again. A different kind of normal, but our new normal. I KNOW that with my brain. But my heart... it feels like it's breaking into a thousand pieces. I just want to make it all better. Not by having my son's eye surgically removed... I want him to keep it and still be pain-free. When I first told him a few months ago that we were going to have to have his eye taken out so it won't hurt him anymore, he said "Please, Mommy, don't let them take it out. I want to keep my eye, but I want to be able to see out of it!" That's what I want for my son. I haven't lost my mind, I know that isn't going to happen. I know that we will go through with the surgery, his pain will finally be relieved, and we'll get used to caring for him a little differently. It just SUCKS. Can I say that without worrying that people might think I'm not strong enough? I know that in the grand scheme of things, losing an eye isn't a huge deal. It's just an eye, it's only one of his eyes, his condition won't spread to other parts of his body, and it's not life-threatening. But he's my kid. And it sucks. When you're a mother, your whole world is turned upside down. As a mother, you love your children so much that sometimes it physically hurts. You are responsible for this beautiful work of art that God has given you to care for. He does not belong to you, he belongs to God. But God has entrusted you with this precious child, and you are there to love him, protect him, and raise him in a Christian home. And no matter what, you NEVER want to see him hurting. I wish this hadn't happened. But I think I know one reason why it has. It has forced me to lean on God more than I ever have in my life. I have needed God, been on my knees in His presence, talked to God, leaned on Him, collapsed into His loving arms more than ever before. I know God has more purpose in this than bringing me closer to Him, but God amazes me with the way He always gives us that bright side. When things seem like they can't get any worse, He shows us that His hand is always in it. And for that, I'll always be thankful.
In other news, it looks as if Tate's surgery is being moved up. For those of you praying for a cancellation, THANK YOU! I got a call from the hospital this afternoon telling us to prepare for January 12th. I was crying on the phone with the receptionist who called me (they're probably getting used to that by now) but I was relieved to know that my son's pain would be eased a little sooner than we originally thought. I called Todd at work to tell him... he seemed glad to hear the news. I remember saying, "This is good, right?" He said "Yeah, of course." I asked him, "Then why am I crying?" That's when I realized what my secret was. This rollercoaster journey went from surreal to very real in a flash. Hold on tight, it's about to get crazy.
I know God will take care of us. I know people are praying for us... for peace, for comfort, for God to carry us through this. We had the absolute pleasure yesterday of meeting David and his family. They showed us that it will all be ok. Things will be normal again. A different kind of normal, but our new normal. I KNOW that with my brain. But my heart... it feels like it's breaking into a thousand pieces. I just want to make it all better. Not by having my son's eye surgically removed... I want him to keep it and still be pain-free. When I first told him a few months ago that we were going to have to have his eye taken out so it won't hurt him anymore, he said "Please, Mommy, don't let them take it out. I want to keep my eye, but I want to be able to see out of it!" That's what I want for my son. I haven't lost my mind, I know that isn't going to happen. I know that we will go through with the surgery, his pain will finally be relieved, and we'll get used to caring for him a little differently. It just SUCKS. Can I say that without worrying that people might think I'm not strong enough? I know that in the grand scheme of things, losing an eye isn't a huge deal. It's just an eye, it's only one of his eyes, his condition won't spread to other parts of his body, and it's not life-threatening. But he's my kid. And it sucks. When you're a mother, your whole world is turned upside down. As a mother, you love your children so much that sometimes it physically hurts. You are responsible for this beautiful work of art that God has given you to care for. He does not belong to you, he belongs to God. But God has entrusted you with this precious child, and you are there to love him, protect him, and raise him in a Christian home. And no matter what, you NEVER want to see him hurting. I wish this hadn't happened. But I think I know one reason why it has. It has forced me to lean on God more than I ever have in my life. I have needed God, been on my knees in His presence, talked to God, leaned on Him, collapsed into His loving arms more than ever before. I know God has more purpose in this than bringing me closer to Him, but God amazes me with the way He always gives us that bright side. When things seem like they can't get any worse, He shows us that His hand is always in it. And for that, I'll always be thankful.
In other news, it looks as if Tate's surgery is being moved up. For those of you praying for a cancellation, THANK YOU! I got a call from the hospital this afternoon telling us to prepare for January 12th. I was crying on the phone with the receptionist who called me (they're probably getting used to that by now) but I was relieved to know that my son's pain would be eased a little sooner than we originally thought. I called Todd at work to tell him... he seemed glad to hear the news. I remember saying, "This is good, right?" He said "Yeah, of course." I asked him, "Then why am I crying?" That's when I realized what my secret was. This rollercoaster journey went from surreal to very real in a flash. Hold on tight, it's about to get crazy.
Wednesday, December 29, 2010
a glimpse of our new normal
When I heard about a local family who had gone through an enucleation (eye removal) with their young son, I passed my number along so that I could ask them some questions. There is something about being able to sit down and chat with someone who has been through what you're facing that is SO much better than just reading about it on the internet. Kim called me the weekend before Christmas and we talked for over an hour. We decided to get our families together so we could meet her adorable little guy, David. We thought it would be best for Tate to keep it casual by just getting a couple of pizzas and letting the kids play. We were so excited to finally get to meet them tonight!
We showed up with dinner a little after 7 (a little late, since Todd'spiece of junk car decided to break down on his way home from work!), and we sat down to eat. The kids were kind of quiet during dinner, but by the time they were finished eating, it was like they were all old friends. They ran off to play while Todd and I chatted with Kim and Rob. David lost his eye from retinoblastoma (cancer) when he was 2. He didn't get his prosthetic eye for several months afterwards because of the chemo and radiation he was undergoing. He is such a sweet boy, and so smart. He told us all about his prosthetic eye. It happened to be cleaning time while we were there, so we got to see how that works. Here are a few of the photos I took tonight:
David takes his eye out by himself.
It was quick!
The prosthetic eye isn't a ball-shape like you see in the cartoons. The underside is concave, so it's more like a really thick contact lens. They're made of acrylic. They're also hand-painted. It's amazing.
Still smiling!
And it's back in! David takes his eye out, but his mom puts it back in for him, with the assistance of some eye ointment and mineral oil to help it go smoothly. What a cutie!
They only take his eye out when it's irritating him, like when he gets an eyelash or something in it. There are telltale signs like redness around his eyelids or David rubbing his eye. (Kim warned us that when David rubs his eye, it will often get turned upside down!) A wash with warm water and Ivory bar soap, and a squirt of eye ointment and a little mineral oil on the back, and it's ready to slide back in. It had been a couple of weeks since they had to take it out last. The general rule is "Don't bother it unless it's bothering you." We looked through some photos of David before and after his surgery. His "before" photos were just pitiful. He had so much pain before his surgery, that he didn't even need pain medications post-op. I wonder how Tate will do.
I felt better than I expected about the whole thing. Everyone was waiting to see how Tate would do, and I was worried about how I would do! We talked a lot about God bringing us through trials, and always giving us enough strength to handle whatever it is that we're dealing with. There have been times that I have just wanted to throw a good old-fashioned temper tantrum and say "This is it, God! This is my limit!", but I know that He will carry me through these times. It's okay to grieve and cry and struggle, but in the end, we will lay it as His feet, and He will pull us through. Only God knows the plans that He has for us, and I know He has big plans for Tate! He has a reason. Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
All of the boys enjoyed meeting David and his family. Jake and Noah weren't afraid to get a super close look at David without his eye in. They both said later that they were surprised that the eye wasn't a ball shape, and that it didn't bother them at all to see David without his eye. I think Jake was more surprised than anyone that it didn't bother him. He was pretty nervous about it beforehand. Tate was really clingy to Todd while David took his eye out. He was facing away, but Kim said she saw him peeking some. I thought it would be best to tell Tate about David ahead of time, and that we'd get to see his super-cool eye, but I think he needs to get more comfortable before he's ready to really watch. We plan to get the kids together again soon to play, and they assured us that they're there anytime Tate decides he's ready to see what it's like to have a prosthetic eye. Tate might have his own before he decides he's ready to see it! :)
I talked to Jake and Noah when we got home, so I could answer any questions they might have. We talked about why David had to have his eye removed, and we talked about the bone growing in the back of Tate's eye. Jake and Noah both have a newfound sympathy for Tate. It might keep them from wrestling around with him so much. For a day or two, anyway. The boys decided that they didn't want to bring Tate's sick eye home from the hospital, that they'd rather donate it to science (um, yeah... good plan!). We prayed for David and Tate, and the boys went to sleep.
As far as Todd's car goes, we'll worry about that tomorrow. We're praying that it's something that isn't too expensive to fix since our funds are pretty much tapped out between having to use our emergency fund to replace our washer and dryer and the medical bills rolling in. When it rains, it pours, but God always provides. Philippians 4:19 And my God will supply all your needs according to His riches in glory in Christ Jesus.
We showed up with dinner a little after 7 (a little late, since Todd's
David takes his eye out by himself.
It was quick!
The prosthetic eye isn't a ball-shape like you see in the cartoons. The underside is concave, so it's more like a really thick contact lens. They're made of acrylic. They're also hand-painted. It's amazing.
Still smiling!
And it's back in! David takes his eye out, but his mom puts it back in for him, with the assistance of some eye ointment and mineral oil to help it go smoothly. What a cutie!
They only take his eye out when it's irritating him, like when he gets an eyelash or something in it. There are telltale signs like redness around his eyelids or David rubbing his eye. (Kim warned us that when David rubs his eye, it will often get turned upside down!) A wash with warm water and Ivory bar soap, and a squirt of eye ointment and a little mineral oil on the back, and it's ready to slide back in. It had been a couple of weeks since they had to take it out last. The general rule is "Don't bother it unless it's bothering you." We looked through some photos of David before and after his surgery. His "before" photos were just pitiful. He had so much pain before his surgery, that he didn't even need pain medications post-op. I wonder how Tate will do.
I felt better than I expected about the whole thing. Everyone was waiting to see how Tate would do, and I was worried about how I would do! We talked a lot about God bringing us through trials, and always giving us enough strength to handle whatever it is that we're dealing with. There have been times that I have just wanted to throw a good old-fashioned temper tantrum and say "This is it, God! This is my limit!", but I know that He will carry me through these times. It's okay to grieve and cry and struggle, but in the end, we will lay it as His feet, and He will pull us through. Only God knows the plans that He has for us, and I know He has big plans for Tate! He has a reason. Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
I talked to Jake and Noah when we got home, so I could answer any questions they might have. We talked about why David had to have his eye removed, and we talked about the bone growing in the back of Tate's eye. Jake and Noah both have a newfound sympathy for Tate. It might keep them from wrestling around with him so much. For a day or two, anyway. The boys decided that they didn't want to bring Tate's sick eye home from the hospital, that they'd rather donate it to science (um, yeah... good plan!). We prayed for David and Tate, and the boys went to sleep.
As far as Todd's car goes, we'll worry about that tomorrow. We're praying that it's something that isn't too expensive to fix since our funds are pretty much tapped out between having to use our emergency fund to replace our washer and dryer and the medical bills rolling in. When it rains, it pours, but God always provides. Philippians 4:19 And my God will supply all your needs according to His riches in glory in Christ Jesus.
Tuesday, December 28, 2010
puppy dog patches
I think I mentioned a while back that I ordered a cute little puppy dog paw print eye patch for Tate, per his request. Have I mentioned that he's refused to wear it? Yes, in perfect stubborn-4-year-old style, he has refused to put on his hand-picked eye patch. I'm not delusional, I know it's a big change. I have only encouraged him to wear it so far for a few minutes each day so he can get used to it... after all, he'll be wearing it quite a bit here in just a few weeks. We got cloth patches to avoid irritating his skin with the Orthopads or other similar sticky patches. You can tell him all day that he'll be cool like a pirate, but still no dice.
I blogged yesterday about being concerned about his sensitivity to light. We did start him back on the drops, and put a call in to the doctor's office to see if they have any advice on the issue, or if we can even move Tate's surgery up under "emergency" circumstances. I have a hard time feeling like it's an emergency, because it seems like more than half of his day, he is playing and having fun with his brothers. I do know he's in pain, even through those times, because of the way he's constantly messing with his eye, pushing his fingers into it, and leaning on his palm with it. But until it's affecting daily life, I don't know that it really constitutes an emergency. Not that it matters today... the surgeon is on vacation until next week. Maybe we'll get a call then that they can work him in... I definitely worry about it some days more than others.
ANYWAY... back to my point. Yeah, I tend to get off track sometimes. Since no one seems to have any good advice on dealing with light sensitivity, I thought this might be a good time to enforce patch-wearing... figuring that if anything helps, that will. So I explained to Tate last night that I expected him to wear his patch for at least 15 minutes today. I told him that I want to help his eye not hurt from the light. Hecomplained complied, of course. I put his patch on him at 11:30 this morning. We watched Jake play Epic Mickey on the Wii. I had to hold Tate's hands for a while, because his instinct is to pull it right off. After a few minutes, he wanted me to let go of his hands, which I did. And he was fine. He didn't mess with it, except to adjust it a little. I bribed rewarded him with brownies, and he got to help me make them. He kept his patch on during this adventure, so in typical photographer-mom fashion, I snapped a couple of quick photos for your enjoyment.
Please ignore the bed-head. It is still Christmas break, you know. So you want to know how long Tate wore his patch? TWO HOURS! Then he came to me right after he pulled it off and said "Mommy, is my 10 minutes up yet?" I really need to teach that kid how to tell time. Maybe later. :)
I blogged yesterday about being concerned about his sensitivity to light. We did start him back on the drops, and put a call in to the doctor's office to see if they have any advice on the issue, or if we can even move Tate's surgery up under "emergency" circumstances. I have a hard time feeling like it's an emergency, because it seems like more than half of his day, he is playing and having fun with his brothers. I do know he's in pain, even through those times, because of the way he's constantly messing with his eye, pushing his fingers into it, and leaning on his palm with it. But until it's affecting daily life, I don't know that it really constitutes an emergency. Not that it matters today... the surgeon is on vacation until next week. Maybe we'll get a call then that they can work him in... I definitely worry about it some days more than others.
ANYWAY... back to my point. Yeah, I tend to get off track sometimes. Since no one seems to have any good advice on dealing with light sensitivity, I thought this might be a good time to enforce patch-wearing... figuring that if anything helps, that will. So I explained to Tate last night that I expected him to wear his patch for at least 15 minutes today. I told him that I want to help his eye not hurt from the light. He
He really had to summon his Spidey strength to stir that brownie mix!
Please ignore the bed-head. It is still Christmas break, you know. So you want to know how long Tate wore his patch? TWO HOURS! Then he came to me right after he pulled it off and said "Mommy, is my 10 minutes up yet?" I really need to teach that kid how to tell time. Maybe later. :)
Monday, December 27, 2010
it's worth a shot...
Ok, so a while back, we made a conscious decision to stop giving Tate his eye drops that were prescribed to treat his glaucoma. They seemed to have become ineffective, as we were told they probably would, because he was still having pain despite the drops. The drops seemed to be doing more harm than good... he hated getting drops because they would sting his eye so bad. His eye got SO red afterwards... it was awful. So we stopped giving them to him. We didn't consult the doctor first, but at this point, we knew the eye was being removed soon, so we didn't sweat it.
Fast forward to today... he has been having a lot of trouble with light sensitivity, which can be caused by a few things, from what I've been reading, one of which is glaucoma. He also has been having pain much more regularly. As I've mentioned before, the pain can be caused from a few things that all have to do with the degeneration of his eye... his glaucoma, the band keratopathy (calcium deposits on cornea), or the calcium formation in the back of his eye, which has formed a bone. We assumed the bone in the back of the eye was the cause of most of the pain (sounds like it would be, right?), especially since the glaucoma drops didn't seem to be helping. But Tate actually asked for his drops today... he informed me that he should be getting those drops every day (if only he felt that way about his pain medicine!). Well, it wouldn't be the first time we let the 4-year-old call the shots. As soon as he said it, I got the drops out... I don't know how much it will help, but it's worth a shot. And I'm proud to say that he took them like a champ.
Fast forward to today... he has been having a lot of trouble with light sensitivity, which can be caused by a few things, from what I've been reading, one of which is glaucoma. He also has been having pain much more regularly. As I've mentioned before, the pain can be caused from a few things that all have to do with the degeneration of his eye... his glaucoma, the band keratopathy (calcium deposits on cornea), or the calcium formation in the back of his eye, which has formed a bone. We assumed the bone in the back of the eye was the cause of most of the pain (sounds like it would be, right?), especially since the glaucoma drops didn't seem to be helping. But Tate actually asked for his drops today... he informed me that he should be getting those drops every day (if only he felt that way about his pain medicine!). Well, it wouldn't be the first time we let the 4-year-old call the shots. As soon as he said it, I got the drops out... I don't know how much it will help, but it's worth a shot. And I'm proud to say that he took them like a champ.
Friday, December 24, 2010
finally!
So Tate was having some swelling and some pain this morning... enough to actually voice it. Although this is always a dead giveaway that he's hurting...
He presses the palm of his hand into his eye and leans on it that way. That's what helps to relieve the pain for him. This is what I noticed first this morning. So I asked him if he was ok... he said his eye was hurting. Not a good sign. His baseline of pain is quite a bit higher than you or me, so if it hurts enough for him to complain about it, it REALLY hurts. I offered him the bubble-gum flavored chewable Tylenol that he picked out at the store last week. Of course, he refused it. I finally got him to try one (his dosage is 3). He chewed for a few seconds, then made the face of disgust (completely intentional on his part. I really don't think he minds the meds, it's just one of his control issues). It was actually kinda cute. :) It took quite a bit of deal-making to get him to take the other two, but finally, he chewed them up (after I served them to him on a spoon out of his oatmeal bowl, per his request.) I asked him a little while ago if his eye was still hurting or feeling better... he said it was feeling better. I asked him if that meant that the medicine helped, and he said that it did. Yay! Hopefully this is a breakthrough that he will remember.
Here are a couple more photos from this morning...
Not feeling too good... :(
He still managed a smile for me though! I just love his sweet face...
He presses the palm of his hand into his eye and leans on it that way. That's what helps to relieve the pain for him. This is what I noticed first this morning. So I asked him if he was ok... he said his eye was hurting. Not a good sign. His baseline of pain is quite a bit higher than you or me, so if it hurts enough for him to complain about it, it REALLY hurts. I offered him the bubble-gum flavored chewable Tylenol that he picked out at the store last week. Of course, he refused it. I finally got him to try one (his dosage is 3). He chewed for a few seconds, then made the face of disgust (completely intentional on his part. I really don't think he minds the meds, it's just one of his control issues). It was actually kinda cute. :) It took quite a bit of deal-making to get him to take the other two, but finally, he chewed them up (after I served them to him on a spoon out of his oatmeal bowl, per his request.) I asked him a little while ago if his eye was still hurting or feeling better... he said it was feeling better. I asked him if that meant that the medicine helped, and he said that it did. Yay! Hopefully this is a breakthrough that he will remember.
Here are a couple more photos from this morning...
Not feeling too good... :(
He still managed a smile for me though! I just love his sweet face...
Thank you for praying for my boy! I hope you all have an amazing Christmas! We'll be spending time with family, enjoying His blessings, and celebrating Jesus! Merry Christmas!
Thursday, December 23, 2010
less than a month...
The big day is less than a month away now. I called to see if we could move up the surgery because Tate has had so much more pain lately. Of course, they are booked up through February, so we're keeping our date of January 21st. We have been added to the call list though in case of cancellations. I know there are several of you praying for a cancellation - thanks for that! Seems likely this time of year, right? If we do get to move it up, it would be a scramble... that scramble that we were trying to avoid by planning it out... of getting Todd's mom down here to help with the other boys, working out our work schedules, etc to accommodate a different surgery date, but if it relieves Tate's pain sooner, it would SO be worth it.
Tate is a tough little guy, and he is back to rarely admitting to pain. Some days are better than others, but overall, Tate's pain is showing through in his moods. He's really irritable these days, and who can blame the kid? I can be pretty irritable when I'm sick or in pain - just ask Todd. :) So I'm picking my battles. It ought to be interesting to see how my inconsistency in parenting adversely affects us down the road. Many of you know that Tate has always been stubborn... he only has a couple of things in his control, and he likes to KEEP control of those things... what he wears (or won't is more accurate - things with collars, buttons, and sometimes, bears!), and what he eats (again, won't eat is more appropriate here too - but this list changes daily). We have gotten past some of the issues with clothing, but on the days he doesn't feel well, it comes back with a vengeance. He's the first 4 year old boy I've ever known to care about what he wears! I discovered yesterday that the reason he won't eat green beans anymore (one of his previously favorite foods) is because of a certain song about beans that my older boys taught him. I had to explain that the song isn't talking about green beans. Oh boy. Haha. And on one recent particularly pitiful day, yep, he in fact DID have pudding for breakfast. He turned down his regular favorite (Gogurt) and when I saw that sad look on his face, I blurted out "How 'bout chocolate pudding, kiddo? Would that make you feel better?" It was SO worth the little smile on his face. I may not be Mom of the Year, but if pudding for breakfast helps my little man feel better for now, then I'm ok with it.
Some days are better than others for me, too. It's been an emotional rollercoaster. I've forgotten everything from the kids' dentist appointments to birthday parties, and most days, I'm surprised that I can form a coherent sentence. I know that part of this is the chaos of the holidays mixed with stress from what is coming up next month, but I had a huge To Do list for Christmas break, and with my increasing inability to stay on-task, not much is getting done. There are several things I want to have done before Tate's surgery, because I plan nothing but lots of cuddle time with my boys for at least a week or two afterwards!
Thank you all for the prayers. I know God is hearing them all, and we can certainly feel the love. Thank you for caring about us!
Tate is a tough little guy, and he is back to rarely admitting to pain. Some days are better than others, but overall, Tate's pain is showing through in his moods. He's really irritable these days, and who can blame the kid? I can be pretty irritable when I'm sick or in pain - just ask Todd. :) So I'm picking my battles. It ought to be interesting to see how my inconsistency in parenting adversely affects us down the road. Many of you know that Tate has always been stubborn... he only has a couple of things in his control, and he likes to KEEP control of those things... what he wears (or won't is more accurate - things with collars, buttons, and sometimes, bears!), and what he eats (again, won't eat is more appropriate here too - but this list changes daily). We have gotten past some of the issues with clothing, but on the days he doesn't feel well, it comes back with a vengeance. He's the first 4 year old boy I've ever known to care about what he wears! I discovered yesterday that the reason he won't eat green beans anymore (one of his previously favorite foods) is because of a certain song about beans that my older boys taught him. I had to explain that the song isn't talking about green beans. Oh boy. Haha. And on one recent particularly pitiful day, yep, he in fact DID have pudding for breakfast. He turned down his regular favorite (Gogurt) and when I saw that sad look on his face, I blurted out "How 'bout chocolate pudding, kiddo? Would that make you feel better?" It was SO worth the little smile on his face. I may not be Mom of the Year, but if pudding for breakfast helps my little man feel better for now, then I'm ok with it.
Some days are better than others for me, too. It's been an emotional rollercoaster. I've forgotten everything from the kids' dentist appointments to birthday parties, and most days, I'm surprised that I can form a coherent sentence. I know that part of this is the chaos of the holidays mixed with stress from what is coming up next month, but I had a huge To Do list for Christmas break, and with my increasing inability to stay on-task, not much is getting done. There are several things I want to have done before Tate's surgery, because I plan nothing but lots of cuddle time with my boys for at least a week or two afterwards!
Thank you all for the prayers. I know God is hearing them all, and we can certainly feel the love. Thank you for caring about us!
Monday, December 20, 2010
mixed emotions
I feel SO scattered these days. Within a day or two of my last post, our washing machine quit completely. We had to replace it, and went ahead and replaced the dryer, too. Not that we didn't enjoy running our jeans through 3 70-minute cycles to get them dry... we'll miss those days. So yeah, spending several hundred dollars just a couple of weeks before Christmas kinda stunk. But man... I LOVE doing laundry now. You know... when I have time and all.
Tate hasn't been feeling too hot lately. If you spend 5 minutes with him, you can tell he's feeling pretty puny. I have had lots of people asking about him lately, and we certainly appreciate all the prayers. Keep them coming. We have a month until his surgery, and his eye seems to be going downhill fast. I thought I'd add a couple of photos to show you what I'm seeing... keep in mind, although I'm a photographer, it's NOT easy to take a photo of a 4 year old's eye... especially when he pretty much never opens it anymore.
This first one was taken on November 15th...
The next 2 were taken on December 17th... shows the degeneration occurring over the last month...
I can't tell you how much this breaks my heart for my sweet boy. I know he's in pain. He squints all the time, and the light really hurts his eyes, too. He's had several moments in the last week that he's been in tears from the pain, but most of the time, he tells me that he's fine. I can tell that he's not, but I just keep remembering that we don't have much longer, and this trial will be behind us. The doctor has told us that we can give him ibuprofen to take the edge off the pain, but Tate refuses to take any meds. And when a stubborn 4 year old doesn't want to take meds, it's pretty much impossible to make him. We've tried every trick in the book. So please keep praying for him. Please pray that his pain is lessened, so that he is comfortable while we wait for the surgery date to approach. I never thought I'd say this, but I'm READY for this surgery. It has to be better than this.
There is something I've dreaded to add to my To Do list, but it's gotta go on there. I need to call the insurance company to see what we need to expect as far as bills go from his surgery and prosthesis. I like surprises, but not this kind. We have to budget for this, and I have to get an idea of where to start. We took Tate to a world-renowned specialist in Michigan in August, and we're STILL getting bills from that. I think we've hit somewhere just under $2k now (out of pocket), and he was only there a few hours, didn't have surgery, and didn't stay in the hospital. We thought we had seen the last of the bills from that visit a couple of months ago, but had a surprise in the mail today to the tune of $805. Yep, 5 days before Christmas. Awesome. So this time, I'm going to ask them to spell it out for me beforehand. One thing I want to be very clear about.... every penny is more than worth it to make my little guy feel better. I'm not upset about having to pay it. I just want to be prepared. Some of you know that we've been on the Dave Ramsey Total Money Makeover Plan since February. We've made a TON of progress in the last 10 months... but we're hitting about a $5000 setback from what we expect between these 2 medical bills. Having to replace our washer and dryer just before Christmas didn't help either. It's SO frustrating to bust your butt to get ahead, then hit brick walls. But I know we'll get through it. God will provide, He always does.
It's almost Christmas, when we celebrate the birth of our Savior. We celebrated my oldest son's 10th birthday today. We have so many blessings, so many wonderful friends, so much to be thankful for. I have been really distracted lately, and I have some days that I just want to crawl back into bed and sulk all day. I'm grateful to have friends who pull me out and keep me going. I have SO many emotions, I feel like I'm all over the place. I'm happy, sad, anxious, nervous, worried, excited, overwhelmed... so I apologize if you call/email/facebook and don't hear back from me right away. But don't give up. I still need you. Thank you for being a friend. (insert Golden Girls theme song here).
Tate hasn't been feeling too hot lately. If you spend 5 minutes with him, you can tell he's feeling pretty puny. I have had lots of people asking about him lately, and we certainly appreciate all the prayers. Keep them coming. We have a month until his surgery, and his eye seems to be going downhill fast. I thought I'd add a couple of photos to show you what I'm seeing... keep in mind, although I'm a photographer, it's NOT easy to take a photo of a 4 year old's eye... especially when he pretty much never opens it anymore.
This first one was taken on November 15th...
The next 2 were taken on December 17th... shows the degeneration occurring over the last month...
I can't tell you how much this breaks my heart for my sweet boy. I know he's in pain. He squints all the time, and the light really hurts his eyes, too. He's had several moments in the last week that he's been in tears from the pain, but most of the time, he tells me that he's fine. I can tell that he's not, but I just keep remembering that we don't have much longer, and this trial will be behind us. The doctor has told us that we can give him ibuprofen to take the edge off the pain, but Tate refuses to take any meds. And when a stubborn 4 year old doesn't want to take meds, it's pretty much impossible to make him. We've tried every trick in the book. So please keep praying for him. Please pray that his pain is lessened, so that he is comfortable while we wait for the surgery date to approach. I never thought I'd say this, but I'm READY for this surgery. It has to be better than this.
There is something I've dreaded to add to my To Do list, but it's gotta go on there. I need to call the insurance company to see what we need to expect as far as bills go from his surgery and prosthesis. I like surprises, but not this kind. We have to budget for this, and I have to get an idea of where to start. We took Tate to a world-renowned specialist in Michigan in August, and we're STILL getting bills from that. I think we've hit somewhere just under $2k now (out of pocket), and he was only there a few hours, didn't have surgery, and didn't stay in the hospital. We thought we had seen the last of the bills from that visit a couple of months ago, but had a surprise in the mail today to the tune of $805. Yep, 5 days before Christmas. Awesome. So this time, I'm going to ask them to spell it out for me beforehand. One thing I want to be very clear about.... every penny is more than worth it to make my little guy feel better. I'm not upset about having to pay it. I just want to be prepared. Some of you know that we've been on the Dave Ramsey Total Money Makeover Plan since February. We've made a TON of progress in the last 10 months... but we're hitting about a $5000 setback from what we expect between these 2 medical bills. Having to replace our washer and dryer just before Christmas didn't help either. It's SO frustrating to bust your butt to get ahead, then hit brick walls. But I know we'll get through it. God will provide, He always does.
It's almost Christmas, when we celebrate the birth of our Savior. We celebrated my oldest son's 10th birthday today. We have so many blessings, so many wonderful friends, so much to be thankful for. I have been really distracted lately, and I have some days that I just want to crawl back into bed and sulk all day. I'm grateful to have friends who pull me out and keep me going. I have SO many emotions, I feel like I'm all over the place. I'm happy, sad, anxious, nervous, worried, excited, overwhelmed... so I apologize if you call/email/facebook and don't hear back from me right away. But don't give up. I still need you. Thank you for being a friend. (insert Golden Girls theme song here).
Wednesday, December 1, 2010
complete chaos
Did you know that Christmas is here in just 24 days?!? I haven't finished my Christmas shopping, I'm working at the airlines all this week and next week (a rarity, I know), and I have like 6 photo sessions to edit and 3 more to shoot this week. I'm sleep-deprived (I work til 2am, in bed by 3am, up again at 645am), I'm worried about my little guy, my house looks like someone broke into it, and I haven't had time to unpack from our Disney trip OR Thanksgiving trip to Ohio. Even if I did bother to unpack, the spin cycle on our washing machine has to be started by hand because the motor has all but completely gone out in it, so laundry takes ALL. DAY. LONG. And with 5 of us, it piles up quickly. Alas, we are running out of clean clothes, so I'll have to choose soon... sleep, but smell like dirty socks, or wear clean clothes but have bags luggage under my eyes. Looks like more sleep-depravity coming right up!
Wednesday, November 17, 2010
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.
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.
Tuesday, November 16, 2010
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. :)
Monday, November 15, 2010
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.
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.
Thursday, November 11, 2010
#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!
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!
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