Today, I heard a radio advertisement telling men to buy their women jewelry so as to be "your wife's hero." It struck me - is that really our definition?? Our husbands are heroes if they buy us pretty baubles? It immediately made me think of what happened at dinner last night.
We were wrapping up our favorite family tradition - Pizza Night. Every Friday we go to the same mom-and-pop pizza buffet. We've been going there now for over two years, and it's like being with family. Last night, we were gathering the kids and leaving around at around 7:15. I started hustling the kids out to the car while hubby paid the tab and chatted with the owner.
As I was loading kids into the mini-van, a homeless man walked past. I'll be honest, I tensed up. He was older, he looked to be drunk, he was disheveled and sporting a pretty mean black eye. He looked tough, desperate, and not in his right mind. As he was walking past, my husband came out of the restaurant. The guy turned to him and said "Hey, could you spare some change?"
Hubby said "What do you need it for?" "I'm trying to get a bus ticket so I can go apply for a job," the man said. "I don't think anyone's hiring at this hour," hubby replied. "Well, it's for tomorrow morning," the man said.
My husband looked at him and said "I don't have any change, but how about I set you up with some food? Are you hungry?" "Well, yeah," the guy said, sounding incredulous. My husband took him into the restaurant and paid for him to get the buffet and a drink. He asked his name, asked him about his shiner, set up one of the cooks to help him, then paid his meal and told him "God bless you, stay safe" before leaving. And when we got home, he said to me "It makes me so sad. Sure, he got to eat tonight, but he's going to be sleeping on the streets and it's cold and dangerous and I wish I could have done more." He's prayed for the man that night and again today.
I'm proud to have such a compassionate, loving, caring, selfless man as my husband. I told him later that I am so proud of him, to see him be an example of Christ's love like that. He shrugged it off. He'll probably be embarrassed that I'm telling this story, because he didn't do it to brag or boast or show off.
This is why I love my husband. Who he is inside is worth more than a million pretty pieces of jewelry. You can't get true character by spending money. You get it by treating others with decency and value, no matter what. By having respect and honesty and compassion. By shining the light of Christ into this world in action and deed. That's a real hero to me.
Saturday, December 15, 2012
Thursday, December 13, 2012
The Plague of Tics
I alluded to the fact that Geri has some "tics." I sometimes call them "-isms", because some of them seem to be "blindisms" or "adoptedisms", but they boil down to uncontrolled, repetitive behaviors that she has a hard time reigning in. I suspect lots of adopted kids, who have suffered neglect or trauma, have some of these types of behaviors, and I know for a fact that a lot of blind or otherwise disabled kids have them, too. That's without throwing the Autism spectrum into the equation, which is characterized, in part, by the tics.
I wanted to share our experiences with Geri's tics because I think it does two things - 1) gives people in our circle of life a platform for understanding our daughter, so they don't think she's nuts or having a seizure or something and 2) gives a bit more info to people who might be dealing with something similar, as I can share what we have found that works for her and possible interpretations. There's a lot more to these behaviors than meets the eye.
When Geri came home, she had some tics. Over time, with lots of sensory input and PT and sensory therapy and brushies and squishees and redirection from us, that stuff subsided a great deal. However, following her cornea transplant, a lot of it has come back. We've seen this before, actually, that a change in her vision leads quickly to an uptick in tics. This time, it's been fairly marked and dramatic.
She has started rocking again. No, not blasting White Snake in her room late at night. It's more like she's throwing herself against her seat for the sensation of smacking into it. She hits herself in the head. She squeals and shrieks. She pulls at her clothing, flails her arms and contorts. She pulls at her tongue and lips. Shoves both hands into her mouth. Honestly, it can look pretty fricking weird. I suspect that people who see this think she's either possessed or massively autistic/retarded. Maybe they think she's psycho.
Then they think I'm psycho, because my response is to tell her to go pick up my bag and bring it to me. Then I tell her to put it back. Then I ask her to bring it to me again. Then I hand her something to throw in the garbage. Or I throw out something random like "Say 'mommy, I'm hungry.'" and proceed to give her crackers.
Here's what we've figured out about these fits. First, there's always a trigger. It's almost never totally random or out of nowhere. It may look that way, but that's until you decode it. When she's messing with her mouth, it's because she's hungry. Sometimes, when she starts rocking in her seat it's because she wants to get down. Much of the time, it's linked to overstimulation. There's too much input, often visual input, for her to process. Many times, it's linked to a specific frustration, like being told "no" or that she can't have or do something she wants. It's her way of throwing a fit, the equivalent of laying on the floor and screaming and kicking her feet. It just looks a hell of a lot more bizarre.
Geri's sensory system is, to say the least, ill equipped for the world in which she lives. She started off at a deficit, because of her blindness, and then she was severely understimulated in the orphanage. We also suspect that she was quickly moved from almost zero stimulation in the infant room to the highly stimulating environment of six or seven toddlers running around in the toddler room at about the age of three. So after three years of nothing, she got tossed right into the deep end. Blind. She has every right to have a sensory processing deficit, honestly.
Which is where carrying my diaper bag around comes in. There are lots of ways to deal with a sensory problem, depending on the nature of the problem itself, and "heavy work" is a good one. Moving, lifting, carrying, pulling or pushing something heavy provides tons of proprioceptive input that stabilizes and calms the sensory system. It releases endorphins, which give a kick of feel-good to the brain, and gets some of that energy worked off. When she is spun up, it's the best possible response. It also calms and focuses her almost immediately to be given a simple, easy-to-understand task. When she's feeling loopy, it seems to ground her and give her a sense of purpose that settles her mind to be given something to do. I kid you not, telling her to throw something away for me can end a fit instantly.
And, to be honest, I'm already seeing the tics begin to subside. If we were consistently using brushies and squishies it might be moving faster, although I somewhat doubt that. She doesn't respond to the brushies and squishies as if they are helpful. One of her therapists told me that, in the world of sensory integration, you can tell if you are doing what your child needs because they respond happily. "If she's smiling, you are giving her exactly what she needed." When I brush her, she just seems to tolerate it. But as soon as I hand her something heavy and tell her where to take it, she grins from ear to ear.
So, if you see us out and about and I'm pulling all the chairs out from the table and making her push them back in, there's a reason. And it's not just because I'm some sadist who likes to give her child a Sysiphean task.
I wanted to share our experiences with Geri's tics because I think it does two things - 1) gives people in our circle of life a platform for understanding our daughter, so they don't think she's nuts or having a seizure or something and 2) gives a bit more info to people who might be dealing with something similar, as I can share what we have found that works for her and possible interpretations. There's a lot more to these behaviors than meets the eye.
When Geri came home, she had some tics. Over time, with lots of sensory input and PT and sensory therapy and brushies and squishees and redirection from us, that stuff subsided a great deal. However, following her cornea transplant, a lot of it has come back. We've seen this before, actually, that a change in her vision leads quickly to an uptick in tics. This time, it's been fairly marked and dramatic.
She has started rocking again. No, not blasting White Snake in her room late at night. It's more like she's throwing herself against her seat for the sensation of smacking into it. She hits herself in the head. She squeals and shrieks. She pulls at her clothing, flails her arms and contorts. She pulls at her tongue and lips. Shoves both hands into her mouth. Honestly, it can look pretty fricking weird. I suspect that people who see this think she's either possessed or massively autistic/retarded. Maybe they think she's psycho.
Then they think I'm psycho, because my response is to tell her to go pick up my bag and bring it to me. Then I tell her to put it back. Then I ask her to bring it to me again. Then I hand her something to throw in the garbage. Or I throw out something random like "Say 'mommy, I'm hungry.'" and proceed to give her crackers.
Here's what we've figured out about these fits. First, there's always a trigger. It's almost never totally random or out of nowhere. It may look that way, but that's until you decode it. When she's messing with her mouth, it's because she's hungry. Sometimes, when she starts rocking in her seat it's because she wants to get down. Much of the time, it's linked to overstimulation. There's too much input, often visual input, for her to process. Many times, it's linked to a specific frustration, like being told "no" or that she can't have or do something she wants. It's her way of throwing a fit, the equivalent of laying on the floor and screaming and kicking her feet. It just looks a hell of a lot more bizarre.
Geri's sensory system is, to say the least, ill equipped for the world in which she lives. She started off at a deficit, because of her blindness, and then she was severely understimulated in the orphanage. We also suspect that she was quickly moved from almost zero stimulation in the infant room to the highly stimulating environment of six or seven toddlers running around in the toddler room at about the age of three. So after three years of nothing, she got tossed right into the deep end. Blind. She has every right to have a sensory processing deficit, honestly.
Which is where carrying my diaper bag around comes in. There are lots of ways to deal with a sensory problem, depending on the nature of the problem itself, and "heavy work" is a good one. Moving, lifting, carrying, pulling or pushing something heavy provides tons of proprioceptive input that stabilizes and calms the sensory system. It releases endorphins, which give a kick of feel-good to the brain, and gets some of that energy worked off. When she is spun up, it's the best possible response. It also calms and focuses her almost immediately to be given a simple, easy-to-understand task. When she's feeling loopy, it seems to ground her and give her a sense of purpose that settles her mind to be given something to do. I kid you not, telling her to throw something away for me can end a fit instantly.
And, to be honest, I'm already seeing the tics begin to subside. If we were consistently using brushies and squishies it might be moving faster, although I somewhat doubt that. She doesn't respond to the brushies and squishies as if they are helpful. One of her therapists told me that, in the world of sensory integration, you can tell if you are doing what your child needs because they respond happily. "If she's smiling, you are giving her exactly what she needed." When I brush her, she just seems to tolerate it. But as soon as I hand her something heavy and tell her where to take it, she grins from ear to ear.
So, if you see us out and about and I'm pulling all the chairs out from the table and making her push them back in, there's a reason. And it's not just because I'm some sadist who likes to give her child a Sysiphean task.
Tuesday, December 11, 2012
Only I Manage This...
What other adult gets tested for whooping cough twice in a four month period??? Seriously. This is the second time in a short while that I have come down with a crazy chest infection and ended up at urgent care. Both times they've had to test me for Pertussis because my cough was so bad that it sounded like that! sigh.
I'm still waiting on test results to find out if that's what I have. So here's my PSA... don't smoke, kids. I smoked for 13 years, total. I started at the tender age of 13, stopped for about two years when I got pregnant with and gave birth to TJ, then picked it up for another year before quitting for good. I smoked heavily, often times clove cigarettes, and I believe I am paying for it now. Every time I get sick, it goes straight into my chest and takes hold. Don't smoke, kiddos. Even if you quit, you'll pay for it later.
In other news, Geri's eye is healing very well. The new input seems to be getting her spun up, but that has been settling down recently and I'm happy about that. I'll have to write more about it, because I think there's some useful info in this whole story to put out there. But not tonight.
For tonight, I will leave you with this fun image from food shopping today...
I'm still waiting on test results to find out if that's what I have. So here's my PSA... don't smoke, kids. I smoked for 13 years, total. I started at the tender age of 13, stopped for about two years when I got pregnant with and gave birth to TJ, then picked it up for another year before quitting for good. I smoked heavily, often times clove cigarettes, and I believe I am paying for it now. Every time I get sick, it goes straight into my chest and takes hold. Don't smoke, kiddos. Even if you quit, you'll pay for it later.
In other news, Geri's eye is healing very well. The new input seems to be getting her spun up, but that has been settling down recently and I'm happy about that. I'll have to write more about it, because I think there's some useful info in this whole story to put out there. But not tonight.
For tonight, I will leave you with this fun image from food shopping today...
 |
| Yoda and Luke go grocery shopping... |
Tuesday, December 4, 2012
Diet Update
Thank you, all, for your encouragement and advice after my first post about this. It was scary to make a big change to something as fraught as our diet, and I was scared, so your kind words helped a lot.
I'm pleased to report that all is going really well. I was very very worried about how Geri would do, with her feeding issues, and I'm a little ashamed now that I underestimated her so much. I was scared she would reject all the new foods and convinced she wouldn't tackle all that chewing, but I was so wrong. She's munching on meats and veggies and fruits and doing great. I have to cut it into smaller pieces for her, but that's to be expected. Sometimes, she gets a little overwhelmed because she forgets to swallow what she's been chewing and then her mouth gets too full, but event hat turns out okay. Gross as it may sound, she just spits the mass out on her plate and then takes a little bit of it back fro round two. With all the feeding issues, our family has utterly nasty table manners, but oh well. It works, and that's what matters.
In addition to all the great input I got from y'all, I also got a chance to pick the brain of one of my favorite therapists from Geri's old feeding group. She gave me some tips and idea, and also pointed out something very important for our miss Mera. Many moons ago, when Mera's dairy intolerance first cropped up, we figured out that the culprit is not lactose, but dairy protein. What I didn't know is that soy protein is almost identical to dairy protein, so if someone is intolerant of dairy protein they will find no relief in switching to soy! Well, crap... that takes that soy yogurt off the menu. Just as well, it was runny and Mera wasn't impressed. But it leaves me with a conundrum... how to replace yogurt? And should I even bother? I could use almond milk yogurt, but it tastes weird and has a bizarre consistency. I could use sheep's milk yogurt, but it's $3 per cup! I could use coconut, but it's super thin. I could thicken it with protein powder, but that usually has whey in it and that's a no-go. I'm thinking I might just let it go.
The therapist also recommended I not take Geri down to 100% carb free. She pointed out that carbs are essential for processing protein in the body, and that they provide complex sugars that give longer lasting energy than fruits. She wants to see Geri on some amount of whole-grain carbs. Honestly, I was never really thinking of going totally carb-free. I just wanted to reduce it a whole lot and I figured shooting for none but knowing I can't control everything would land us at an actual reduction closer to 70%. I aim high, knowing I'll never make it but figuring that will get me closer to where I need to be. Does that make me a pessimist? At any rate, I bought some quinoa and I'm working more barley into the mix.
Another thing that the feeding therapist suggested was adding a probiotic to both girls' diets. I can't believe I didn't think of that, since I used a probiotic when Mera's dairy thing first popped up. She said it's a god idea when making a diet change to add a probiotic to keep everything working properly and your immune system functioning during the change. I found a dairy-free kids probiotic powder at King Soopers, so I'm working it in for both girls.
So, what about results?? Without going into too much disgusting detail, it's working. Geri's moving again, and since I dropped the soy I have seen some improvement in Mera. They both seem to be moving their bowels more regularly and with less difficulty. TMI, I know, but at least I'm not posting pics or something. Stroll on over to STFU, Parents and this won't look so bad.
| Don't try to act innocent, soy! |
In addition to all the great input I got from y'all, I also got a chance to pick the brain of one of my favorite therapists from Geri's old feeding group. She gave me some tips and idea, and also pointed out something very important for our miss Mera. Many moons ago, when Mera's dairy intolerance first cropped up, we figured out that the culprit is not lactose, but dairy protein. What I didn't know is that soy protein is almost identical to dairy protein, so if someone is intolerant of dairy protein they will find no relief in switching to soy! Well, crap... that takes that soy yogurt off the menu. Just as well, it was runny and Mera wasn't impressed. But it leaves me with a conundrum... how to replace yogurt? And should I even bother? I could use almond milk yogurt, but it tastes weird and has a bizarre consistency. I could use sheep's milk yogurt, but it's $3 per cup! I could use coconut, but it's super thin. I could thicken it with protein powder, but that usually has whey in it and that's a no-go. I'm thinking I might just let it go.
The therapist also recommended I not take Geri down to 100% carb free. She pointed out that carbs are essential for processing protein in the body, and that they provide complex sugars that give longer lasting energy than fruits. She wants to see Geri on some amount of whole-grain carbs. Honestly, I was never really thinking of going totally carb-free. I just wanted to reduce it a whole lot and I figured shooting for none but knowing I can't control everything would land us at an actual reduction closer to 70%. I aim high, knowing I'll never make it but figuring that will get me closer to where I need to be. Does that make me a pessimist? At any rate, I bought some quinoa and I'm working more barley into the mix.
Another thing that the feeding therapist suggested was adding a probiotic to both girls' diets. I can't believe I didn't think of that, since I used a probiotic when Mera's dairy thing first popped up. She said it's a god idea when making a diet change to add a probiotic to keep everything working properly and your immune system functioning during the change. I found a dairy-free kids probiotic powder at King Soopers, so I'm working it in for both girls.
So, what about results?? Without going into too much disgusting detail, it's working. Geri's moving again, and since I dropped the soy I have seen some improvement in Mera. They both seem to be moving their bowels more regularly and with less difficulty. TMI, I know, but at least I'm not posting pics or something. Stroll on over to STFU, Parents and this won't look so bad.
Tuesday, November 27, 2012
Diet Debacle
We're going on a diet! *grinds face into corner of table for an hour* No, really, I'm so excited.
Mera and Geri have both been suffering from (TMI warning) terrible constipation for so long I honestly am not sure when it started. I've been dosing them with Miralax recently, just to make them comfortable, but I know this treatment ought not to be done forever. Something has to change, and it has to happen in their diets.
Geri, I already kinda knew her diet needed tweaking. She would live on nothing but carbs if I let her. Mac and cheese, spaghetti, bread, graham crackers... I could keep her fed for a year without ever making anything that grows touch her lips. I know that isn't a good plan, but with her feeding problems I have felt that my hands were tied. I was also concerned because, aside from the obvious potty problem, there is also an issue with normal weight obesity. What's that? Apparently, when a child has been nutritionally deprived and malnourished for a long period of time (oh, say, about 4 years) their body behaves as if it is obese at a normal weight. The heart, liver, kidneys, etc. all get affected at what would be, on any other child, a pretty average weight. Right now, Geri is in about the 75th percentile for weight and height. On any other kid, that would be just fine and dandy, but on her it's possibly dangerous. Her doctor also specifically warned us about carbs for her, simply because her metabolism is so messed up at this point.
Mera is another fun study. When she was born, she was severely dairy sensitive. Not just lactose, but all dairy. I was nursing her, and I couldn't even eat bread because of the whey used in it. I could not have a glass of cow's milk, but I could have goat's milk. Which, by the way, is not really the "gimme" it might sound like. Stuff tastes weird. The cheese from it is great, but the actual milk tastes a little like feet smell. Just saying, is all.
So here we are, two members of our family have specific food exclusions. Mera has to be "no dairy" and Geri needs to be "low carb," but she is also "doesn't enjoy chewing solid foods." Nick is "please don't make me change my diet" and TJ is "wanna ride bikes?" I'm trying to figure out how the heck I'm going to feed them all.
For now, I'm cutting the milk and milk products for Mera. I'm not yet making her totally give up anything with whey in it, because I think her system is stronger now and I want to see if just taking out the milk will do it. However, I'm trying to make sure Geri doesn't get all those carbs and the girls are always together at meal times and I can't give one girl one thing and another girl another because that would start all sorts of hell breaking loose. Here's where I am so far.
1. Vanilla Almond Milk. I tried giving both girls fruit and applesauce for breakfast. Geri hardly ate anything and I hate to send her to school so hungry. She loves cereal, which has carbs but if I make the rest of the day carb-free I feel like it's ok, but if Mera sees her eating some then she'll want it too and that. mean. milk. Now I can give them both cereal, mera with almond milk and Geri with cow's milk, and no one is the wiser.
2. Goat's Milk and Soy Yogurt. The girls also love yogurt. If I give Geri the dairy version and Mera the non-dairy, it should be ok. Or I could just give them both non-dairy, but it's real expensive.
3. Chicken Nuggets. No, not a health food. I get that. But it's very low carb, no dairy (I'm not counting whey, remember) and easy to eat. It also gets Geri in a chewing frame of mind, so she'll attempt he fruit and veggies I give her.
4. Applesauce. I buy the Buddy Fruits, which have no sugar or preservatives. Just apples and other fruit. A serving of fruit, something in the tummy, no chewing. Works for everyone.
5. Fish. Geri loves fish, so I'm praying that will bring us through a lot of mealtimes.
Today was the first day, and I'm not sure how long it will take for their "systems" to improve if I'm on the right track. Anyone have any educated guesses? Any tips or advice for a changed diet? Recipes? Want to come and cook for us while I go have a good cry? Seriously, this is such a huge change and it feels like I have SO MANY hurdles to deal with in all of it. Money (have you SEEN how much quinoa costs?!?!), time, feeding difficulties, taste buds that have a lot of programming in their history... This is a lot. The things we do because we love our kids and want them to be able to poop. Hallmark should put that on a card. Your welcome.
Mera and Geri have both been suffering from (TMI warning) terrible constipation for so long I honestly am not sure when it started. I've been dosing them with Miralax recently, just to make them comfortable, but I know this treatment ought not to be done forever. Something has to change, and it has to happen in their diets.
| I'm French, so this one hurts. |
| Don't try to look all innocent, Cow. You know what you did. |
So here we are, two members of our family have specific food exclusions. Mera has to be "no dairy" and Geri needs to be "low carb," but she is also "doesn't enjoy chewing solid foods." Nick is "please don't make me change my diet" and TJ is "wanna ride bikes?" I'm trying to figure out how the heck I'm going to feed them all.
For now, I'm cutting the milk and milk products for Mera. I'm not yet making her totally give up anything with whey in it, because I think her system is stronger now and I want to see if just taking out the milk will do it. However, I'm trying to make sure Geri doesn't get all those carbs and the girls are always together at meal times and I can't give one girl one thing and another girl another because that would start all sorts of hell breaking loose. Here's where I am so far.
| Pick me! Pick me! |
2. Goat's Milk and Soy Yogurt. The girls also love yogurt. If I give Geri the dairy version and Mera the non-dairy, it should be ok. Or I could just give them both non-dairy, but it's real expensive.
3. Chicken Nuggets. No, not a health food. I get that. But it's very low carb, no dairy (I'm not counting whey, remember) and easy to eat. It also gets Geri in a chewing frame of mind, so she'll attempt he fruit and veggies I give her.
4. Applesauce. I buy the Buddy Fruits, which have no sugar or preservatives. Just apples and other fruit. A serving of fruit, something in the tummy, no chewing. Works for everyone.
5. Fish. Geri loves fish, so I'm praying that will bring us through a lot of mealtimes.
Today was the first day, and I'm not sure how long it will take for their "systems" to improve if I'm on the right track. Anyone have any educated guesses? Any tips or advice for a changed diet? Recipes? Want to come and cook for us while I go have a good cry? Seriously, this is such a huge change and it feels like I have SO MANY hurdles to deal with in all of it. Money (have you SEEN how much quinoa costs?!?!), time, feeding difficulties, taste buds that have a lot of programming in their history... This is a lot. The things we do because we love our kids and want them to be able to poop. Hallmark should put that on a card. Your welcome.
Saturday, November 24, 2012
Beautiful Eyes
Today we were driving and Geri looked at me (I wasn't operating the vehicle, don't worry) and the light hit her just so and I could see the outline of her new cornea. There was this amazing circle of white light in the middle of her right eye. It was sort of breathtaking, really. So clear and vibrant, lit so it appeared to almost be glowing. I wonder if that outline will persist after the cornea heals in place and the stitches are removed.
Her right eye will be rather remarkable in the end. Before the cornea transplant, the stretching in her cornea gave it a milky, blue-white color. There was a wide area of this coloring around the edge of her iris, and it streaked across the middle. Now, there is this clear field in the middle with a ring of milky blue-white around it.
I've often wondered what exactly is her eye color. It's hard to be certain, because it's a real trick getting her to make good eye contact with you for any amount of time, but it appears they are an incredible dark blue. It feels like there is something important to be learned from this - the "defective" part of her is utterly gorgeous. So much beauty is found in our flaws, if we only know how to look and see them differently.
Her right eye will be rather remarkable in the end. Before the cornea transplant, the stretching in her cornea gave it a milky, blue-white color. There was a wide area of this coloring around the edge of her iris, and it streaked across the middle. Now, there is this clear field in the middle with a ring of milky blue-white around it.
I've often wondered what exactly is her eye color. It's hard to be certain, because it's a real trick getting her to make good eye contact with you for any amount of time, but it appears they are an incredible dark blue. It feels like there is something important to be learned from this - the "defective" part of her is utterly gorgeous. So much beauty is found in our flaws, if we only know how to look and see them differently.
Thursday, November 22, 2012
The Cornea Transplant
Yesterday Geri got he new cornea. I honestly still don't truly believe it happened, because she's recovering so well that you can't hardly tell it happened. If she weren't wearing a clear eye shield, you'd never know that she had her eye cut up just yesterday.
The morning of the surgery started with a 4:45am departure for Denver. Our pastor met us as the surgical center, and we got her paperwork completed and brought her back for prep. Pastor waited in the lounge area until she was prepped and ready to go back.
It's sort of sad how good we've gotten at anesthesia. We know every in and out of Geri's surgical prep. At this point, I can tell the nurses exactly when and where they can check her vitals and how in order to keep her calm. Blood pressure on the leg, not the arm. Pulse ox on the toe, not the finger. Change her into the hospital gown as late as possible. I'll do the eye drops myself, thanks. And it's sad when you can tell the anesthesiologist that she does really well with propofol, the Midazolam seems to really screw her up in recovery, skip the laughing gas because it really doesn't help, and you know exactly how to hold your child so that when they go totally limp you are ready. We are pros at anesthesia at this point, and sometimes that makes my heart hurt a bit.
The staff at Harvard Park Surgery Center were really great. They were very nice, very cooperative, very reassuring. They made Geri's prep as easy as possible, and I really appreciated that. Closer to surgery time, Pastor came back and we prayed over her. Then Dr. R showed up and talked to us a bit before the main event. He told us that we were really lucky, the "tissue" was very good, very healthy. He said that it came from a 2 year old, which sort of floored me for a moment. He double-checked a few things, we put on our bunny suits, and we headed back to the OR. There was a funny moment when we walked in the OR and there was no bed in the room because the nurse was bringing it in and I looked at the anesthesiologist and said "So, are you just gonna hold her the whole time?" The bed was right behind us, and soon Geri was on it getting the gas and being super brave and then she was out. We kissed her, prayed over her, and on the way out I prayed over Dr. R.
An aside, I do this EVERY TIME she has an operation. Dr. B is getting used to it, I think, but it seems to surprise docs when the mom says "May I pray over you?" on the way out to the waiting room. So far, everyone is really cool about it. I have not had any doctor or nurse refuse my offer, I think because they realize that they don't have to be a Christian for me to be one and it matters to me so they let it fly. Which I appreciate, because if a doctor ever said no I think I'd just do it anyway. I really only ask first because I put my hand on them when I do it, and I try to announce myself before touching strangers. Just a policy I have.
We headed out to the waiting room and Pastor was still there. He hung out with us, watching TV and discussing comic books (we have a really cool pastor) until Dr. R came out about an hour later to talk to us. Of course, he comes out while I'm in the bathroom but he was still there when I got back and there really wasn't much to discuss anyway. We would be seeing him in his office at 1230, so he was going to give us the after-care details there. He said that the surgery went fantastic, that everything was in place and it looked great. We thanked him and he left. Pastor said his goodbyes and we prayed with him and then he left, too, and we went back to see Geri in post-op.
Wow, this is turning into a loooooong post. Oh well, if you're still here then I guess you're in it for the long haul so I'll keep trucking. Perhaps all this detail is boring for most people (it's ok, I understand) but I suppose if anyone ever has to go through a cornea transplant for their kid and they want to know about how it all works, this could be useful.
Anyway, when we got back Geri was still mostly out but starting to become more awake. Her eye was thoroughly bandaged and covered with a clear plastic shield. Another benefit of being very used to anesthesia - I know exactly how to handle her when she wakes up! I told the nurses to remove all the stickies from her chest while she was still groggy, that was it pisses her off only briefly. Same thing for the IV, although some nurses don't like that idea. They want to keep the IV in just in case the kid won't take fluid orally. They need to make sure the child stays hydrated. However, I've done this enough times to know that she will take the oral liquids more readily if there isn't an IV in her hand or arm pissing her off. This nurse was awesome and took out the IV when I told her that. I also got them to take off her blood pressure cuff and bring over a comfy chair so I could sit in the chair and hold her in my lap. At this point, Geri was rousing and starting to be pretty pissed, but as soon as we got into the chair she laid her head on me and fell asleep again. She slept for another hour or so. The nurse was great about checking her blood pressure on her leg, to avoid ticking her off again. It worked like a charm.
When Geri woke up she was hungry, so we gave her some vanilla pudding and a BUTTLOAD of graham crackers. Here's another point of interest. When Geri comes out of anesthesia, she gets something I like to call "Drunk Face." Ever get drunk and your nose and mouth area seems to feel numb? Yeah, when Geri is coming off the anesthesia she rubs her nose a lot and won't drink from a cup or a straw. I think it's because her nose and lips feel numb and awkward. She drank apple juice off a spoon, but wouldn't touch it from a straw or cup. Poor thing. But she was loving those graham crackers.
She was in surprisingly high spirits, so when she finished her crackers we changed her and packed up and left. On the way out we knew it was lunch time so we mentioned pizza and she got all sorts of excited. We hit Anthony's Pizza and she ate a huge slice of cheese pizza. She was in an unbelievably good mood. After that, we headed to Dr. R's office.
Another piece of useful post-op info... it's totally normal for your child to run a low-grade fever after surgery. We didn't know this, and it hadn't happened before, so we freaked. Oddly enough, Dr. R's office did not have a single thermometer. I guess with his specialty, it just doesn't come into play. She felt warm, and we were nervous, but he reassured us and recommended we get with her primary care doc to be sure. He was certain, however, that this was not a danger to her eye and the new cornea. He removed the padding, and from what he was able to get a look at he said the eye looked "perfect." He sounded super confident and was very pleased with the results. He said again that the tissue was just unbelievably good and healthy, so he had total confidence that the transplant would be a success and bring a huge improvement to Geri's vision in that right eye.
We headed home, with a pit-stop at her pediatrician's office to find out her temp was 99.2 and she was fine, and then I ran out to fill her prescriptions. The post-op care for this procedure is not terribly complicated, but there's SO MUCH of it. In addition to her normal medications, she now is getting steroid eye drops 6 times daily (works out to every two hours while she's awake) and antibiotic eye drops 3 times. This is the regimen for the first two weeks, until we see Dr. R again and he revises the schedule based on how well she's doing. The eye shield stays on 24/7 for probably a month or so, then she'll wear it when she sleeps for another 3-4 months. She can't be permitted to rub or press on the eye at all. She will have EUAs every 6 weeks until about the 9 months mark, depending on how everything is healing. The stitches stay in for about 6 months, I think. Again, it depends.
What is most amazing about this surgery is how well she is doing. She's had far less of a developmental setback than we had feared. She's being rather clingy with Nick, and she's no eating as well as normal, but otherwise she is doing great. She's still using her words as much as before, so no verbal setback. She's walking around just fine, no gross motor setback. With the clear eye shield we are not seeing a huge setback visually, but she can't wear her glasses right now because they don't fit over the shield, so she seems to be seeing less clearly as a result. Still, she's playing and laughing and there are moments when I look at her and say "Did I imagine that whole surgery thing?" It's really surprising, and I know this is a blessing from God. He has smiled on this process and made it smooth for her, and I'm so grateful.
If you actually read this entire post, thanks. I appreciate it. I hope it gave you some insight into this type of surgery, what all it entails, and perhaps that info might be useful to you or someone you know. Honestly, that's the only reason I do this blog. I hope that our experiences might be helpful for someone else, in the form of info or encouragement, and that's why I overshare so much. Thanks for listening, I hope it was of use to you. :)
The morning of the surgery started with a 4:45am departure for Denver. Our pastor met us as the surgical center, and we got her paperwork completed and brought her back for prep. Pastor waited in the lounge area until she was prepped and ready to go back.
It's sort of sad how good we've gotten at anesthesia. We know every in and out of Geri's surgical prep. At this point, I can tell the nurses exactly when and where they can check her vitals and how in order to keep her calm. Blood pressure on the leg, not the arm. Pulse ox on the toe, not the finger. Change her into the hospital gown as late as possible. I'll do the eye drops myself, thanks. And it's sad when you can tell the anesthesiologist that she does really well with propofol, the Midazolam seems to really screw her up in recovery, skip the laughing gas because it really doesn't help, and you know exactly how to hold your child so that when they go totally limp you are ready. We are pros at anesthesia at this point, and sometimes that makes my heart hurt a bit.
The staff at Harvard Park Surgery Center were really great. They were very nice, very cooperative, very reassuring. They made Geri's prep as easy as possible, and I really appreciated that. Closer to surgery time, Pastor came back and we prayed over her. Then Dr. R showed up and talked to us a bit before the main event. He told us that we were really lucky, the "tissue" was very good, very healthy. He said that it came from a 2 year old, which sort of floored me for a moment. He double-checked a few things, we put on our bunny suits, and we headed back to the OR. There was a funny moment when we walked in the OR and there was no bed in the room because the nurse was bringing it in and I looked at the anesthesiologist and said "So, are you just gonna hold her the whole time?" The bed was right behind us, and soon Geri was on it getting the gas and being super brave and then she was out. We kissed her, prayed over her, and on the way out I prayed over Dr. R.
An aside, I do this EVERY TIME she has an operation. Dr. B is getting used to it, I think, but it seems to surprise docs when the mom says "May I pray over you?" on the way out to the waiting room. So far, everyone is really cool about it. I have not had any doctor or nurse refuse my offer, I think because they realize that they don't have to be a Christian for me to be one and it matters to me so they let it fly. Which I appreciate, because if a doctor ever said no I think I'd just do it anyway. I really only ask first because I put my hand on them when I do it, and I try to announce myself before touching strangers. Just a policy I have.
We headed out to the waiting room and Pastor was still there. He hung out with us, watching TV and discussing comic books (we have a really cool pastor) until Dr. R came out about an hour later to talk to us. Of course, he comes out while I'm in the bathroom but he was still there when I got back and there really wasn't much to discuss anyway. We would be seeing him in his office at 1230, so he was going to give us the after-care details there. He said that the surgery went fantastic, that everything was in place and it looked great. We thanked him and he left. Pastor said his goodbyes and we prayed with him and then he left, too, and we went back to see Geri in post-op.
Wow, this is turning into a loooooong post. Oh well, if you're still here then I guess you're in it for the long haul so I'll keep trucking. Perhaps all this detail is boring for most people (it's ok, I understand) but I suppose if anyone ever has to go through a cornea transplant for their kid and they want to know about how it all works, this could be useful.
Anyway, when we got back Geri was still mostly out but starting to become more awake. Her eye was thoroughly bandaged and covered with a clear plastic shield. Another benefit of being very used to anesthesia - I know exactly how to handle her when she wakes up! I told the nurses to remove all the stickies from her chest while she was still groggy, that was it pisses her off only briefly. Same thing for the IV, although some nurses don't like that idea. They want to keep the IV in just in case the kid won't take fluid orally. They need to make sure the child stays hydrated. However, I've done this enough times to know that she will take the oral liquids more readily if there isn't an IV in her hand or arm pissing her off. This nurse was awesome and took out the IV when I told her that. I also got them to take off her blood pressure cuff and bring over a comfy chair so I could sit in the chair and hold her in my lap. At this point, Geri was rousing and starting to be pretty pissed, but as soon as we got into the chair she laid her head on me and fell asleep again. She slept for another hour or so. The nurse was great about checking her blood pressure on her leg, to avoid ticking her off again. It worked like a charm.
When Geri woke up she was hungry, so we gave her some vanilla pudding and a BUTTLOAD of graham crackers. Here's another point of interest. When Geri comes out of anesthesia, she gets something I like to call "Drunk Face." Ever get drunk and your nose and mouth area seems to feel numb? Yeah, when Geri is coming off the anesthesia she rubs her nose a lot and won't drink from a cup or a straw. I think it's because her nose and lips feel numb and awkward. She drank apple juice off a spoon, but wouldn't touch it from a straw or cup. Poor thing. But she was loving those graham crackers.
She was in surprisingly high spirits, so when she finished her crackers we changed her and packed up and left. On the way out we knew it was lunch time so we mentioned pizza and she got all sorts of excited. We hit Anthony's Pizza and she ate a huge slice of cheese pizza. She was in an unbelievably good mood. After that, we headed to Dr. R's office.
Another piece of useful post-op info... it's totally normal for your child to run a low-grade fever after surgery. We didn't know this, and it hadn't happened before, so we freaked. Oddly enough, Dr. R's office did not have a single thermometer. I guess with his specialty, it just doesn't come into play. She felt warm, and we were nervous, but he reassured us and recommended we get with her primary care doc to be sure. He was certain, however, that this was not a danger to her eye and the new cornea. He removed the padding, and from what he was able to get a look at he said the eye looked "perfect." He sounded super confident and was very pleased with the results. He said again that the tissue was just unbelievably good and healthy, so he had total confidence that the transplant would be a success and bring a huge improvement to Geri's vision in that right eye.
We headed home, with a pit-stop at her pediatrician's office to find out her temp was 99.2 and she was fine, and then I ran out to fill her prescriptions. The post-op care for this procedure is not terribly complicated, but there's SO MUCH of it. In addition to her normal medications, she now is getting steroid eye drops 6 times daily (works out to every two hours while she's awake) and antibiotic eye drops 3 times. This is the regimen for the first two weeks, until we see Dr. R again and he revises the schedule based on how well she's doing. The eye shield stays on 24/7 for probably a month or so, then she'll wear it when she sleeps for another 3-4 months. She can't be permitted to rub or press on the eye at all. She will have EUAs every 6 weeks until about the 9 months mark, depending on how everything is healing. The stitches stay in for about 6 months, I think. Again, it depends.
What is most amazing about this surgery is how well she is doing. She's had far less of a developmental setback than we had feared. She's being rather clingy with Nick, and she's no eating as well as normal, but otherwise she is doing great. She's still using her words as much as before, so no verbal setback. She's walking around just fine, no gross motor setback. With the clear eye shield we are not seeing a huge setback visually, but she can't wear her glasses right now because they don't fit over the shield, so she seems to be seeing less clearly as a result. Still, she's playing and laughing and there are moments when I look at her and say "Did I imagine that whole surgery thing?" It's really surprising, and I know this is a blessing from God. He has smiled on this process and made it smooth for her, and I'm so grateful.
If you actually read this entire post, thanks. I appreciate it. I hope it gave you some insight into this type of surgery, what all it entails, and perhaps that info might be useful to you or someone you know. Honestly, that's the only reason I do this blog. I hope that our experiences might be helpful for someone else, in the form of info or encouragement, and that's why I overshare so much. Thanks for listening, I hope it was of use to you. :)
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