We went to Walmart for some grocery shopping tonight, and Tate wasn't exactly on his best behavior. In his defense, he was probably pretty tired, as we'd had a long day, but nevertheless, misbehaving children don't get to buy the new Hot Wheels car they hand-picked. Of course, this denial-of-prize was followed with one of the worst tantrums he's thrown since his surgery. It's hard to believe that tantrums like this were a daily occurrence pre-op. I really am not sure how I dealt with it for so long without completely losing my mind. Or maybe I did lose my mind. Or maybe my mind just stepped away from the situation for a bit and went out for a drink. Yep, I think that's it. I went to my happy place (not literally of course, no need to call DSS and tell them I abandoned my child). But somehow, Tate and I both made it through all those kicking, screaming tantrums.
You know how they say that different kids have different personalities, even when they're related, raised together by the same parents, etc, etc? I never had the issues with Jake and Noah that I have with Tate. They were disciplined, but they obeyed well, and usually taking away a privilege or a toy was enough to make my point and get them to behave. Then came Tate. As he grew up and became more strong-willed and stubborn, I thought This one is my challenge. This one is going to be my willful (and incidently, last!) child. I really just thought he was a brat.... as in, that was his personality - BRAT. I never realized how much pain he was in until it was gone (I don't think he did either). I know I've said it before, but he really has completely changed since his surgery, and it gets better every day. EVERYONE has noticed it... everyone who spends any time with him has commented on how happy he is now. Days like today... (actually, I should say tonight, because I had the boys out ALL DAY, and they all did really well until tonight....) are few and far between. I think what's left of the tantrums and behavior issues are just him being 4 years old, and we'll keep working on discipline for that. But I'm so glad that it's so infrequent now. He's a sweet kid with a smile and a hug for all his friends and family, and that's the boy I always knew hoped was under that brat exterior.
So yeah, I have a point to my long-winded story. At some point during Tate's tantrum in the car on the way home from Walmart (did I mention I am glad he saved it for the car instead of the store, so I could avoid getting those stares from people?) he was crying a lot and must have rubbed his eye. Yeah, the fake one. So when we got home, I was holding him and talking to him about his terrible behavior while we were out. I kept getting distracted during our conversation by his "crazy eye". I wasn't sure why it was crazy, but it sure as heck didn't look right. So I laid him down on the couch and turned the light on. I pulled up his top eyelid... no red dot. Uh oh. You may remember from a previous post that dot marks the top of his eye so we know how to put it in correctly. So I pull his lower lid down. Yep, red dot. So I tell Todd.... Um, honey, Tate's eye is upside down. (There are certain things you never thought you'd have to say, that would be one of them.) So we take him upstairs to get our fancy suction-cup-on-a-stick to attempt to take his eye out for the first time.
Now, you've had the backstory... you do realize that this means that he's not exactly cooperative to the phrase Tate, we're just going to take your eye out because it's upside down. We'll clean it and put it right back in, ok? Yeah, notsomuch. He starts crying (without the kicking this time, thank goodness) but we can't exactly take his eye out with him fighting us and flailing his arms all around. Maybe when we're better at it, but remember, this is the first time. We try distracting him, being silly, giving him his stuffed animals to keep his hands busy, all to no avail. I told Todd that we needed to pray. That was all I could think of... that we needed to pray for him to be calm and to know that he wouldn't have pain, and that we were doing what was best for him. He really calmed down after we prayed, and with very little struggle from Tate, we got his eye out. I really expected to hear a POP! sound, but it didn't happen (yeah, I was a little bummed about that). I washed his eye while Todd comforted him, put some mineral oil on it, and after a few minutes of talking to him about it, promising him the car that he didn't get tonight, a bowl of popcorn and a family movie (hey, don't judge, you do what you gotta do when your kid needs his eye put back in), he agreed to let me put it back in. So all is well, we got over the obstacle that we were nervous about, and we all survived it. :)
Sorry I don't have any photos, I kinda had my hands full. Photos soon, though, I promise. I will hopefully have some to share soon from our trip to California earlier this week. We had a nice little 3 day mini-vacation for the boys' spring break, and let me tell ya, it was just what the doctor ordered.
This is going to be a short post... I'm exhausted. But this day was phenomenal. Tate got his new eye made today and he loves it! We all do. I'll do a more in-depth, tons-of-photos post in a day or two, but for now, I just wanted to let you know that it went very well! Thank you again for all of your support!
This is Tate with his ocularist, Michael Boyd! Thank you, Mr Boyd. We are so happy!
The appointment time has arrived. The surgeon has given the go-ahead, the bribes rewards have been decided, and the child is getting a good night's rest. We are leaving bright and early (7am) to head to Burlington for Tate's appointment to have his prosthetic eye made. It's an all-day appointment, but we won't have to stay in the office all day. There will be several stages to the appointment, and we'll be able to come and go between them. The part that I'd like to request prayer for, of course, is getting a good impression. This is where he has to be still for THREE WHOLE MINUTES. I bet most of you couldn't do that. Yeah, neither could I. So... prayers are appreciated (as always!) and I will keep facebook updated during the day. I have been given permission by the ocularist to bring my camera to the appointment and document the day for all of you. I hope that I'll at least be able to do a quick update tomorrow night, but I may not be able to do a full post on it until Sunday or so. For those of you who don't know, I'm back to working full-time nights now at the airline, so I keep really busy anyway, but we're planning to take the boys to the zoo on Saturday if the weather holds out, as an extra prize for Tate.
I can't believe this day is finally here. It's been such a whirlwind. It's hard to believe it's been 6 weeks since his surgery already, but on the other hand, it seems like it's been forever. We're getting used to seeing him without an eye now. I remember when he first started going without his bandage that I flinched a couple of times when I looked at him. Not because I was grossed out or anything, but just because I would forget for a minute. That's a good thing.... to not think about it all the time. He's such a happy, normal kid. And that's all I want for him. He's still not excited about getting his new eye. I asked him tonight if he wanted to bring his new sock monkey that his Nana got him... he said "No, Mommy, I don't want him to get hurt." That breaks my heart. We've reassured him again and again that it won't hurt. I told him a couple of weeks ago when he was worried about it hurting that it would hurt even less than his surgery did. He said "But my surgery didn't hurt!" I told him that was great and that everything would be easy-peasy then. I know he's scared. I mean, really... he's 4 years old. It has to be nerve-wracking... just the anticipation alone. He doesn't know what to expect (frankly, neither do I) but I really think he'll do great.
The timing seems good to get his prosthetic. He has a little cold, and apparently, that makes his eye socket pretty gunky. I was cleaning it today, and let me put it this way, I thought I'd never get all that stuff out through those little holes in his conformer. Sorry people, this is my new reality, so I'm sharing it with all of you. You're welcome. I'm hoping it will be easier to clean with an eye that comes out as opposed to a conformer that doesn't (or at least, it shouldn't).
I can't wait to see what Tate looks like with two eyes that look the same. That's something he's never had. I hear a lot from people who have prosthetic eyes, or who have kids that do, that no one can tell. But I know his eye won't move the same as his real eye, and it may have a different look to it, but I know that however it turns out, it'll be so much better than what he had before!
I want to thank all of you again for all the support and prayers we've received throughout Tate's journey. It means more to us than you'll ever realize. Hopefully we are towards the end of the dramatic portion of this journey, but of course, I'll keep you updated on him. Maybe I'll even blog about something else someday. Anyone want to see the letter I sent to Sprint's CEO? It prompted a call-back from the executive office....
Well, it's over. And I can't tell you how relieved I am! We didn't have internet access at the hospital (they have wi-fi, but we had a weak signal in our room, so I couldn't connect), so I couldn't blog yesterday. So this is how it all went down....
We were scheduled to arrive at the hospital at 7am for the surgery to begin at 830am. It was expected to last an hour and a half. We took Tate back to the pre-op area to get his hospital gown on (and he was NOT a fan, let me tell you!) and give him some cuddles before his surgery. We met with the anesthesiologist there, and got to sign the paper that says that I understand that a risk of anesthesia is death. I hate that form. I mean, I know I have to sign it, but I don't have to like it. Anyway, the nurse anesthetist brought Tate a cool little red wagon to ride to the OR in around 845am, but Tate wasn't having any part in that. So Rocker Birdie (Tate's hospital buddy) rode in the red wagon with his quilt, and Tate was carried off by a nurse, while yelling for his Mommy. Not my favorite part of the day. That, I am proud to say, is the only time I cried yesterday. I do admit to getting a little teary while waiting for his surgery to be over, but I wasn't the blubbering mess I was during his last surgery. Small victories, people... small victories.
This is the last photo I took of Tate's eye before surgery... The purple "K" above his eye marks the eye that they're taking out. I'm glad that's a system that works!
So we went to wait in the adult waiting area primarily because you can eat on that side. (Yes, I have my priorities.) My awesome mom made muffins, and brought apples and bottled water, so we wouldn't have to leave the waiting area to go get food. We got a call at 915am saying that they had just started, and that intubation and everything anesthesia-related went well.
My brother came to the hospital before work to wait with us for a while. My parents were also there waiting with us. This is my brother, Ted, on the left, Todd on the right.
I had been told that we'd get a call every hour to update us on the progress of the surgery, so when we were called to the pediatric waiting area at 1015am, I walked straight to the phone at the desk to wait for the call, barely noticing our surgeon standing there waiting to talk to us! I was confused as to why he was out there at first. I just remember saying "It's over? It's really over?" And I'm pretty sure I didn't mean the surgery. This long journey, this journey that we've been on for 4 1/2 years.... it's over. Finally. Ok, maybe not completely over, but this huge hurdle that I've been dreading for 2 months... this was such a big part of it. The beginning of the end. So our surgeon, Dr Y, proceeds to tell us that this is something we will never regret. The eye had degenerated so much, that he said that without a doubt, we had absolutely made the right decision. Phew. I mean, I knew that. You've seen photos... you've heard stories. You know what we were facing. But it gave me so much relief to hear it from the guy who saw his eye, the whole thing, that we had made the right gut-wrenching decision. Wow. Thank you, God. Dr Y told us that they were taking him to Recovery, and we'd get to see him soon. An extremely long HOUR AND 45 MINUTES LATER, we finally were told he was waking up and we could go see him. The extra long nap may or may not have been from us keeping him up til midnight the night before his surgery. I couldn't really say. But when we walked to Recovery, he was sitting up (kinda) and drinking Sierra Mist. He looked good. He had a bandage over his left eye. He was quiet, but responsive. His bed was then wheeled up to his room, and we followed along, praising God that his surgery went without complications!
Here is Tate, post-surgery, sporting the beautiful quilt that the sweet people over at Quilts of Compassion made for him before he went into the hospital back in August in Michigan. He was able to take the quilt and Rocker Birdie into the OR with him.
Getting some love and attention from his Nana right after we got settled into his room
The surgeon removed Tate's eye, inserted an implant behind the lining (the pink area like you see on the inside of your eye lid) and attached the muscles to it. They closed that lining, then inserted a plastic conformer in place of the eye (as a spaceholder while the eye socket heals). In 6-8 weeks, we'll travel to Burlington to visit the occularist to have his prosthetic eye made.
Tate had lots of visitors yesterday, and he enjoyed every minute of the attention. He even ventured to the playroom with his brothers and his best buddy Aiden for about 15 minutes. He was worn out after all the visitors came, so he finally dozed off around 530pm. His friend Bri's amazing mom, Lori, brought us dinner and some yummy cookies to the hospital room. Tate slept through dinner, but he enjoyed his Happy Meal for breakfast this morning. :) Todd and I watched a movie last night while Tate slept, then dozed off ourselves. Tate slept until 730am today. He hasn't had any pain meds since the IV bag around 1230pm yesterday. I was concerned that it would wear off at some point during the evening last night, and that he'd wake up screaming in pain, but that never happened. I had a feeling that whatever pain he was experiencing prior to surgery might be just as bad or worse than post-op pain, and it looks like I was probably right. He still hasn't complained of pain, and when I asked him earlier today if his eye hurt, his answer was "Just a tiny bit." I can live with that, especially considering that I was told to expect significant pain for 4 days, and also because we know that this pain will end.
Spoiled much? :) He got lots of fun gifts from friends who visited.
Chilling...
Grandma was making him peanut butter graham crackers on demand. He loved every minute of it.
Checking out the playroom... he only lasted about 15 minutes, but we were surprised that he was up for it at all!
We were discharged this morning around 9am, and we go back Saturday morning to have his bandage removed. I'm not looking forward to that. I can see some drainage on the bandage, so I can only imagine what his eye must look like. We'll learn how to take care of the eye area while it heals, and I'm assuming that we'll get more information about our upcoming visit to the occularist.
Overall, I'm relieved. That pretty much sums it up. I'm happy that the surgery went as well as could be expected, and that his pain level so far is so much better than I expected. As I was texting friends and family yesterday to let them know when he was out of surgery and that all went well, the response that I got most was "Yay!" I know why they were saying that. I really do understand. I was also super relieved that all went well... but I just felt like I couldn't celebrate that my kid's eye had just been surgically removed. I thank God that He was watching over my boy, and that we have gotten past this part of the journey. I don't want anyone to think for a second that I'm not thankful for Tate to be so close to pain-free, because I really am. And I'm hoping that very soon, I'll feel like REALLY CELEBRATING this part of the journey.
You would have thought I was a first-time mom the way I freaked out when I heard Tate cough this morning. No offense to first-time moms, of course, but you tend to be able to diagnose everything from strep throat to dehydration to stomach flu yourself by the third kid. You know the "vomiting protocol" by heart, and you only call the doctor if you think you need antibiotics. I woke up extra early this morning, unable to sleep because all of a sudden I was really nervous that Tate was going to get sick before Wednesday, and the surgery would have to be postponed. I got the boys ready for school, and as we got in the van (it didn't help my nerves that the back doors were frozen shut, despite the fact that I warmed up the car first), I heard him cough. 3 times. It sounded bad. Pretty rough, kind of croupy. So of course, I panicked. I took the boys to school, and came home and picked up the phone at 8am. Lucky for me, my best friend is a nurse. It's pretty nice to have your own personal Dial-A-Nurse when you have 3 boys. So I told her what happened.... "Sarah! Tate coughed this morning!" She promptly laughed. She knew right away why I was nervous, and more than that, she knew me well enough to know that I'd HAVE to be nervous about SOMETHING for the next 6 days. And she calmed me down, told me I didn't have to rush him to the pediatrician to get him on antibiotics this morning, and told me they'd check him out at his pre-op appointment this afternoon. Phew. That was close.
As it turned out, Tate didn't cough the rest of the day. At least not real coughs. He has been happy all day, and seemed to be in very little, if any, pain. He did great during his quick check-up at his pre-op appointment. We didn't have to meet with the anesthesiologist today... we'll do that the morning of the surgery, since Tate is a healthy child. And I took care of paying the deductible to the hospital over the phone on Tuesday to save us a stop in the Finance office. So after the exam and some paperwork, we went to a little room so the PA could take measurements of Tate's good eye, so they can make the conformer for his left eye socket. That was when it started to hit home. He was having such a good day and with so little pain, that if he didn't start to flinch and squint because of the bright lights in the office, I think I would have picked him up and carried him out right then and there. But I know he needs this. And I know he will be ok. He'll be better than ok. He'll be healthier and happier when his sick eye is taken out. I know it will be an adjustment for us, but I also know it will be worth it. It just has to.
I am SO thankful for my friends and family. I have gotten so much support.... prayers, hugs, phone calls, and offers to help. I worry (cause that's what I do - worry) that some of the people who I have only recently gotten to know since all this chaos has been going on might think I'm nuts. Well, you know... more than I actually am. I've been so spastic with my emotions all over the place, panicking every day about something, off the deep end, worrying ALL the time. So I just want to say that I'm not usually this bad. Well, not quite. I do worry (especially when it comes to my kids), and I can be a little crazy and emotional at times (can't we all?), and I can be a control freak (what???). And you're thinking "So how is that all different from how you have been lately?" Ok, yeah, nevermind.
And because I know you only really come here to see my cute little boy (not listen to my endless babble), I'll share one of my favorite photos of him... I took this in July, right after we were first told that his eye was degenerating and would have to be removed at some point. I didn't know how long it would be, so I had an urge to take some photos of him as he was then. He will ALWAYS be perfect in my eyes.
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.
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!
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).
