I've been sitting here, trying to figure out what to write..but I can't come up with anything meaningful.
It seems like I'm always just updating on the health of my kids. My mom told me the other day that she thought going to endless doctor appointments would get old. I don't know, it's been my life for the last 15 years, it's all I know, it's just life.
But it makes me think maybe it gets old reading about it.
The only thing I'll say right now is, Matthew's surgery went well, his pressure is, once again, down, and now we just wait again. Do I think it will work this time? Not really. It hasn't in the past. The doctor said she didn't blame me for being pessimistic about it, she said given his history, it's natural for me to be pessimistic. I hate feeling that way. I wish I could just say, "oh yeah, this will be it..it will be great". I've said that in the past, only to be let down, time and again. Once bitten, twice shy, and all that.
Fall has come to Ohio. It is so beautiful. I find myself wondering if the native Ohioans (is that what they're called?) realize how lucky they are. There are many places in this country that do not look like this in the fall. I've lived in plenty of those places. Anyway, I just love it. Of course, the leaves are falling faster than we can keep them raked up, and that's not too fun, but it can't all be roses, now can it?
Tomorrow, Dillon turns 13!! How can this be?? Two teenagers in the house! Weren't they just born? They are growing way too fast for me. I wish time could just slow down a wee bit. I know I'll blink and they'll be gone, and yet, I am so thankful to have all this time with them. I know too many people who have lost their children, so I'm not taking a minute for granted.
Well lookie there, I guess I did have something to say.
Showing posts with label Matthew. Show all posts
Showing posts with label Matthew. Show all posts
Tuesday, October 11, 2011
Wednesday, June 22, 2011
Nannie and Matthew update
I was sitting down to write this post about Nannie, and realized I haven't updated on Matthew. Let me do that first.
Matthew saw the doctor last week. His pressure is creeping back up. It is 24 right now, up from 12. That is to be expected. They dropped him down to one drop, but I don't quite understand why. She expects his pressure to keep creeping up, so if you expect it to keep going up, why stop a med?? Beats me, but I'm not the doctor. Anyway, he goes back in three months. Once it hits the 30s again, she wants to redo the surgery.
I know this sounds so bad, but it is so frustrating, I just wish they would leave him alone. We are just buying time till he loses his eye. I guess any time we can buy is worth it. It's just hard watching your kids go through this garbage!
OK so Nannie. Ever since she had RSV/pneumonia/bronchiolitis in March she has had a chronic cough and runny nose. They tried antibiotics on her, with no luck. She's been to the ER where they said she had asthma and needed to see pulmonary. I know ER docs are worthless and can't be trusted to diagnose anything, so we were just waiting to see pulmonary.
That appointment was today.
The doctor said on her x-ray in May, her lungs were very over inflated. What the heck does that mean? I have no idea, probably should have asked! Anyway, he said that RSV destroys the airway. I assume the cilia, but again, I didn't ask. He said that since her RSV was so severe it could take up to two years for her to fully recover from it! Holy cow, that's a long time! He commented on how atypical her RSV was, since it hit her so hard and she was already so old. He obviously doesn't know that my family is pretty atypical! HA!! He then went on to say he had never heard of siblings with TAPVR and went on and on about how unusual that is. Really? Never heard that before! Hehe!
So, all of that to say, we are starting her on inhaled meds (pulmocort) two times a day and singulair once a day. We go back after we get home from vacation in September to see how things are. At this point, there isn't a stop time for anything. I guess we play it by ear.
So that's that. Nothing too exciting, just too long for a status update!!
Matthew saw the doctor last week. His pressure is creeping back up. It is 24 right now, up from 12. That is to be expected. They dropped him down to one drop, but I don't quite understand why. She expects his pressure to keep creeping up, so if you expect it to keep going up, why stop a med?? Beats me, but I'm not the doctor. Anyway, he goes back in three months. Once it hits the 30s again, she wants to redo the surgery.
I know this sounds so bad, but it is so frustrating, I just wish they would leave him alone. We are just buying time till he loses his eye. I guess any time we can buy is worth it. It's just hard watching your kids go through this garbage!
OK so Nannie. Ever since she had RSV/pneumonia/bronchiolitis in March she has had a chronic cough and runny nose. They tried antibiotics on her, with no luck. She's been to the ER where they said she had asthma and needed to see pulmonary. I know ER docs are worthless and can't be trusted to diagnose anything, so we were just waiting to see pulmonary.
That appointment was today.
The doctor said on her x-ray in May, her lungs were very over inflated. What the heck does that mean? I have no idea, probably should have asked! Anyway, he said that RSV destroys the airway. I assume the cilia, but again, I didn't ask. He said that since her RSV was so severe it could take up to two years for her to fully recover from it! Holy cow, that's a long time! He commented on how atypical her RSV was, since it hit her so hard and she was already so old. He obviously doesn't know that my family is pretty atypical! HA!! He then went on to say he had never heard of siblings with TAPVR and went on and on about how unusual that is. Really? Never heard that before! Hehe!
So, all of that to say, we are starting her on inhaled meds (pulmocort) two times a day and singulair once a day. We go back after we get home from vacation in September to see how things are. At this point, there isn't a stop time for anything. I guess we play it by ear.
So that's that. Nothing too exciting, just too long for a status update!!
Saturday, June 4, 2011
Matthew's Surgery
I totally forgot to blog about Matthew's recent surgery. My dad has been galavantin around the world, and his recent comment on my status update reminded me that I should have updated him, and you.
In case you are new to my blog, Matthew is my eldest. He is 14. He was born with a congenital cataract which was removed at one month of age. Along with the cataract, his lens was removed. Keep in mind this was 14 years ago. His eye has some other issues and for reasons beyond our control, he went nearly blind in his right eye. By nearly blind I mean he can see shadows. I'm sure that, had he been born now, things would have turned out differently. We try not to think about that. We did the best we could. We saw an expert in the field and did all we could, 14 years ago.
Have I mentioned it was 14 years ago??
Anyway, due to the absence of a lens, he developed glaucoma in that eye.
Because he has almost zero vision in that eye, anything we do is just to keep him comfortable.
He has been fighting this for years now, and nothing we do seems to work.
The last time he saw the doctor, his pressure was an all time high, 48. Normal pressure is in the teens.
It was decided that we would try a laser surgery.
He has had this same exact surgery before. It brought his pressure down to the upper teens. A month later it was back to the 30s.
He uses 3 medications to try to keep the pressure down, but it obviously doesn't do too much.
The first time he had this surgery was pie.
This time was a different story.
The doctor told me Matthew would be out for the surgery, which we took to mean general anesthesia. Matthew was fine with that. This was surgery number 12 or 13 (I need to write them down so I have that info!!) and he is used to them gassing him to sleep, then starting the IV.
When we got to the pre-op holding area, they talked about starting an IV. Matthew was so nervous. We said we preferred he get the gas first. Then they explained that they would just be doing IV sedation this time around. No big deal, just the fear of the IV.
He did great and said it wasn't that bad. I was so glad they gave him lidocaine before doing it though.
They took him back, he remembers a bit, but not much.
It wasn't long and he was done.
By the time we got to the recovery room he was awake and loopy. It was hilarious, and we all laughed at him. How mean, huh? But, in our defense, he was so funny, and he laughed with us!
OK, so the next day, no pain. Surgery was on Tuesday and Friday we headed to Missouri to see my brother-in-law graduate grad school. Graduations was Saturday, and there was a tree outside that called way too hard to my boys to climb it.
Up they went. Matthew hung upside down, felt a "pop" and was in major pain. He said the pressure was terrible. We got home and he laid down and didn't want to move. We tried a cool compress, but the feeling of anything touching it was excruciating.
So here we are, middle of nowhere, Missouri, with no clue what to do. Oh, and that dad who was galavantin?? He's an ophthalmologist but was unreachable. Just our luck!
We gave him Tylenol throughout the weekend, and he was able to function. Oh, we also took it upon ourselves to increase his drops for pressure, because he said it was pressure pain. His eye also got very, very bloodshot after this. We knew it was supposed to get red, but it hadn't until that moment.
Monday finally came and we put a call into his doctor. Of course, we had to leave a message. The first call back said we needed to find an ophthalmologist and get him in asap.
Again, we were in the middle of nowhere!
As we started searching the phone book and trying to figure out what to do, his doctor called back.
We talked about everything and she told me what drops to increase to every other hour.
That did the trick and brought the pain down.
The white of his eye turned yellow and you could see every blood vessel, bright red.
He had pain until we got home and finally saw the doctor. A week after surgery.
She looked and said everything looked great. We have no idea what the "pop" could have been, or why the pain was suddenly so excruciating.
The big news is his pressure was down to 12.
This is great news, but I find it hard to get excited. The doctor says we will be cautiously optimistic. I just figure when we go back in a couple weeks, it will be creeping up again. I would LOVE to be surprised.
He continues to have pain off and on, which I don't understand. If it looks so good, why is it hurting him so much?
Also, something that is perplexing to me, that I didn't think about until after we left...Matthew has a thickened cornea, so they usually say the actual pressure is about 10 points lower. Does this mean his pressure is 0-2?? And is that bad? He keeps telling me his eye feels squishy. That freaks me out.
A danger of this surgery is doing too much of the laser and actually drying the eye up. I'm praying that isn't the case here!
So, time will tell. I think the pain is getting better every day. He continues to amaze me. My children are the strongest people I know. Matthew never, ever complains about all he has been through. I am so very, very proud of the man he is becoming.
In case you are new to my blog, Matthew is my eldest. He is 14. He was born with a congenital cataract which was removed at one month of age. Along with the cataract, his lens was removed. Keep in mind this was 14 years ago. His eye has some other issues and for reasons beyond our control, he went nearly blind in his right eye. By nearly blind I mean he can see shadows. I'm sure that, had he been born now, things would have turned out differently. We try not to think about that. We did the best we could. We saw an expert in the field and did all we could, 14 years ago.
Have I mentioned it was 14 years ago??
Anyway, due to the absence of a lens, he developed glaucoma in that eye.
Because he has almost zero vision in that eye, anything we do is just to keep him comfortable.
He has been fighting this for years now, and nothing we do seems to work.
The last time he saw the doctor, his pressure was an all time high, 48. Normal pressure is in the teens.
It was decided that we would try a laser surgery.
He has had this same exact surgery before. It brought his pressure down to the upper teens. A month later it was back to the 30s.
He uses 3 medications to try to keep the pressure down, but it obviously doesn't do too much.
The first time he had this surgery was pie.
This time was a different story.
The doctor told me Matthew would be out for the surgery, which we took to mean general anesthesia. Matthew was fine with that. This was surgery number 12 or 13 (I need to write them down so I have that info!!) and he is used to them gassing him to sleep, then starting the IV.
When we got to the pre-op holding area, they talked about starting an IV. Matthew was so nervous. We said we preferred he get the gas first. Then they explained that they would just be doing IV sedation this time around. No big deal, just the fear of the IV.
He did great and said it wasn't that bad. I was so glad they gave him lidocaine before doing it though.
They took him back, he remembers a bit, but not much.
It wasn't long and he was done.
By the time we got to the recovery room he was awake and loopy. It was hilarious, and we all laughed at him. How mean, huh? But, in our defense, he was so funny, and he laughed with us!
OK, so the next day, no pain. Surgery was on Tuesday and Friday we headed to Missouri to see my brother-in-law graduate grad school. Graduations was Saturday, and there was a tree outside that called way too hard to my boys to climb it.
Up they went. Matthew hung upside down, felt a "pop" and was in major pain. He said the pressure was terrible. We got home and he laid down and didn't want to move. We tried a cool compress, but the feeling of anything touching it was excruciating.
So here we are, middle of nowhere, Missouri, with no clue what to do. Oh, and that dad who was galavantin?? He's an ophthalmologist but was unreachable. Just our luck!
We gave him Tylenol throughout the weekend, and he was able to function. Oh, we also took it upon ourselves to increase his drops for pressure, because he said it was pressure pain. His eye also got very, very bloodshot after this. We knew it was supposed to get red, but it hadn't until that moment.
Monday finally came and we put a call into his doctor. Of course, we had to leave a message. The first call back said we needed to find an ophthalmologist and get him in asap.
Again, we were in the middle of nowhere!
As we started searching the phone book and trying to figure out what to do, his doctor called back.
We talked about everything and she told me what drops to increase to every other hour.
That did the trick and brought the pain down.
The white of his eye turned yellow and you could see every blood vessel, bright red.
He had pain until we got home and finally saw the doctor. A week after surgery.
She looked and said everything looked great. We have no idea what the "pop" could have been, or why the pain was suddenly so excruciating.
The big news is his pressure was down to 12.
This is great news, but I find it hard to get excited. The doctor says we will be cautiously optimistic. I just figure when we go back in a couple weeks, it will be creeping up again. I would LOVE to be surprised.
He continues to have pain off and on, which I don't understand. If it looks so good, why is it hurting him so much?
Also, something that is perplexing to me, that I didn't think about until after we left...Matthew has a thickened cornea, so they usually say the actual pressure is about 10 points lower. Does this mean his pressure is 0-2?? And is that bad? He keeps telling me his eye feels squishy. That freaks me out.
A danger of this surgery is doing too much of the laser and actually drying the eye up. I'm praying that isn't the case here!
So, time will tell. I think the pain is getting better every day. He continues to amaze me. My children are the strongest people I know. Matthew never, ever complains about all he has been through. I am so very, very proud of the man he is becoming.
Saturday, May 14, 2011
Crazy Busy
The problem with waiting for a while in between posts is I never know where to start again.
We have been so crazy busy that I could make multiple entries, and maybe I will. Or not. We'll see how things go.
Last week we, and by we, I mean me, decided that we would have a week of no TV, no iTouch, no DS, etc.
We also downloaded the geocaching app on my phone last week. It also happened to be the week that the weather finally warmed up.
We spent last Sunday traipsing around finding caches. It was a lot of fun, and I think it will help us learn where things are here.
Throughout the week, we stopped at multiple caches.
It was also a great week for playing at the park. We spent a lot of time at the parks this week.
What we didn't do was a whole lot of school. Shame on us. It was just too nice to be inside. I'm thinking school is about to end. We are at stopping points for everything except math. And I'm the boss, we can stop math when I say. Hehe. Besides all that, geocaching is educational!
Today, we decided to add Letterboxing. We spent a good chunk of the afternoon walking around.
Our first letterboxes were a series of 4 that told a bunch of history of the town near us. It was cool, we went around the cemetery where many of the founding fathers of the town are buried. When we were done, we checked out the first buildings in the town. Very cool.
I have always thought I wanted to explore cemeteries. There are so many stories buried in cemeteries.
I changed my mind today.
The final letterbox was right beside one of the baby cemeteries there. I wandered. Matt told me not to, but I just couldn't help it.
So much heartache. I shed a few tears for all the lost babies. All the hurting parents. I cannot imagine. There was a stone that simply said, "Williams Twins". Another was for twin, one lived 2 days, the other 7. Can you imagine? Losing two babies?? At the same time? There was a family plot in another part, from the 1800s. There were two stones for babies. They were both a year old. They passed about ten years apart. Still, the pain, ugh.
I wandered and couldn't help but wonder how many of the babies had passed from CHDs. The area we were in were all babies from about the 1950s-1960s. Surgeries weren't what they are now. I don't think they were even repairing TAPVR at that point. How many babies died from this horrible thing? It was all just too close for comfort.
Anyhow, we then roamed downtown looking for geocaches. We ended up along the bike path. We covered several miles today. We only found two caches, but it was so fun.
We have waited so long for lovely weather in which to spend time outside in.
OK, I am rambling. We also went to the doctor last week.
Matthew saw the new glaucoma doctor. His pressure was higher than ever before.
He is having surgery on Tuesday. This one has hit me hard. It was so unexpected. And while Matthew doesn't really complain, he has started saying that this week is going to be awful and not fair. We try to be upbeat, but he is right. It all stinks and I wish I could take it all away from him.
On Friday we are headed to my brother-in-laws graduation. He is getting his doctorate in physical therapy. We are all so proud of him and are looking forward to seeing all the family.
However, I am so overwhelmed with what needs to be done this week. My house is in such disarray right now, and honestly, we are going to be going, going, going.
It will all work out, I just feel way overwhelmed.
I guess I decided to write it all out right now, and if you are still around, thanks for reading!
We have been so crazy busy that I could make multiple entries, and maybe I will. Or not. We'll see how things go.
Last week we, and by we, I mean me, decided that we would have a week of no TV, no iTouch, no DS, etc.
We also downloaded the geocaching app on my phone last week. It also happened to be the week that the weather finally warmed up.
We spent last Sunday traipsing around finding caches. It was a lot of fun, and I think it will help us learn where things are here.
Throughout the week, we stopped at multiple caches.
It was also a great week for playing at the park. We spent a lot of time at the parks this week.
What we didn't do was a whole lot of school. Shame on us. It was just too nice to be inside. I'm thinking school is about to end. We are at stopping points for everything except math. And I'm the boss, we can stop math when I say. Hehe. Besides all that, geocaching is educational!
Today, we decided to add Letterboxing. We spent a good chunk of the afternoon walking around.
Our first letterboxes were a series of 4 that told a bunch of history of the town near us. It was cool, we went around the cemetery where many of the founding fathers of the town are buried. When we were done, we checked out the first buildings in the town. Very cool.
I have always thought I wanted to explore cemeteries. There are so many stories buried in cemeteries.
I changed my mind today.
The final letterbox was right beside one of the baby cemeteries there. I wandered. Matt told me not to, but I just couldn't help it.
So much heartache. I shed a few tears for all the lost babies. All the hurting parents. I cannot imagine. There was a stone that simply said, "Williams Twins". Another was for twin, one lived 2 days, the other 7. Can you imagine? Losing two babies?? At the same time? There was a family plot in another part, from the 1800s. There were two stones for babies. They were both a year old. They passed about ten years apart. Still, the pain, ugh.
I wandered and couldn't help but wonder how many of the babies had passed from CHDs. The area we were in were all babies from about the 1950s-1960s. Surgeries weren't what they are now. I don't think they were even repairing TAPVR at that point. How many babies died from this horrible thing? It was all just too close for comfort.
Anyhow, we then roamed downtown looking for geocaches. We ended up along the bike path. We covered several miles today. We only found two caches, but it was so fun.
We have waited so long for lovely weather in which to spend time outside in.
OK, I am rambling. We also went to the doctor last week.
Matthew saw the new glaucoma doctor. His pressure was higher than ever before.
He is having surgery on Tuesday. This one has hit me hard. It was so unexpected. And while Matthew doesn't really complain, he has started saying that this week is going to be awful and not fair. We try to be upbeat, but he is right. It all stinks and I wish I could take it all away from him.
On Friday we are headed to my brother-in-laws graduation. He is getting his doctorate in physical therapy. We are all so proud of him and are looking forward to seeing all the family.
However, I am so overwhelmed with what needs to be done this week. My house is in such disarray right now, and honestly, we are going to be going, going, going.
It will all work out, I just feel way overwhelmed.
I guess I decided to write it all out right now, and if you are still around, thanks for reading!
Saturday, April 16, 2011
I Won't Be Ready
Our eldest two are away at a Pathfinder lock in tonight.
I miss them!
They won't even be gone 24 hours, but it just isn't the same without them here.
I am going to be in big trouble when they grow up and begin to leave.
People have told me that when it's time for them to leave, I'll be ready.
I don't see it. I can't imagine ever being ready for them to leave.
I genuinely enjoy being with my kids.
Of course there are times when they drive me up the wall, but overall, I love having them around.
It just so happens that I have great kids, so it's easy to love having them around. ;-)
I had an old friend tell me the other day that I am crazy because I am with my kids all day, every day.
That makes me sad. Why does it make me crazy?
Oh well! I'll be crazy!
Hurry up Noon on Sunday...I miss my kids!
I miss them!
They won't even be gone 24 hours, but it just isn't the same without them here.
I am going to be in big trouble when they grow up and begin to leave.
People have told me that when it's time for them to leave, I'll be ready.
I don't see it. I can't imagine ever being ready for them to leave.
I genuinely enjoy being with my kids.
It just so happens that I have great kids, so it's easy to love having them around. ;-)
I had an old friend tell me the other day that I am crazy because I am with my kids all day, every day.
That makes me sad. Why does it make me crazy?
Oh well! I'll be crazy!
Hurry up Noon on Sunday...I miss my kids!
Thursday, September 9, 2010
Random Pictures
We have a fairly new camera. A DSLR. I've been reading a book to try to learn how to use it better. I was just going to upload these pictures to facebook, but it was being dumb, so I'm just going to put them here.
Tuesday, September 8, 2009
Dusting off the cobwebs
Once again, I've fallen off the blogging bandwagon. I don't know how I've managed to keep up a blog for almost ten years now..it's mind boggling to me.
So much has happened since the last time we spoke.
The big one is that Matthew had surgery. Surgery number ten, in case you're keeping count. The morning of surgery, I got a little teary eyed and asked Matt how this became our life. His answer, "because we are blessed". We'll blame my moment of weakness on hormones.
You can blame almost anything on pregnancy hormones, I've found.
So the surgery was kind of hard to explain, and I don't really feel like it, SO, I'll just tell you that is was a laser surgery that reduced the amount of fluid being produced in his eye. Thus, reducing the amount of pressure. His pressure was insanely low the day after surgery, but since then he has complained of pressure pain, and well, I'm not so hopeful anymore. He goes tomorrow for another follow up. We were told, however, that his pressure would spike for a month, and then go down, so maybe it's just spiking. We'll see.
Let me take this moment to tell you one of my pet peeves. I hate it when people (particularly those with a bit of medical knowledge) feel the need to tell me what we need to do for Matthew. Or how things could be improved. Or how there must be some way to get his vision back. You don't know the first thing about Matthew's eye. The doctors don't know much about Matthew's eye. You haven't been following him for the last 13 years and you don't know what's best for him. We, as his parents, are confident in his care, even if it doesn't seem to produce the ideal results. I am not dumb, nor is Matt. And my own dad is an ophthalmologist, so all of this is much more familiar to me than it would be your average Jane!
OK, stepping off my soap box now.
In other news, the boys all got parts in the play they are doing this year. Excalibur! It isn't your typical play though, so it would do me no good to tell you what parts they got because you wouldn't know who they were. Matthew got a pretty large role though, and I worry about him being dedicated enough to memorize his lines. I'm sure he'll be fine though. Dillon got a smaller role.
Collin and Zachary will be a tree and then knights who fight in the tournament. They are thrilled to not have to speak and to be able to sword fight. All's well.
Today, we started school. It went really well, and as usual, I'm thinking this will be the best year ever. This afternoon though, I'm exhausted. Oh well, this too shall pass.
Let's see, what else? Nothing that I can think of. And this is long anyway. Until the next time.
So much has happened since the last time we spoke.
The big one is that Matthew had surgery. Surgery number ten, in case you're keeping count. The morning of surgery, I got a little teary eyed and asked Matt how this became our life. His answer, "because we are blessed". We'll blame my moment of weakness on hormones.
You can blame almost anything on pregnancy hormones, I've found.
So the surgery was kind of hard to explain, and I don't really feel like it, SO, I'll just tell you that is was a laser surgery that reduced the amount of fluid being produced in his eye. Thus, reducing the amount of pressure. His pressure was insanely low the day after surgery, but since then he has complained of pressure pain, and well, I'm not so hopeful anymore. He goes tomorrow for another follow up. We were told, however, that his pressure would spike for a month, and then go down, so maybe it's just spiking. We'll see.
Let me take this moment to tell you one of my pet peeves. I hate it when people (particularly those with a bit of medical knowledge) feel the need to tell me what we need to do for Matthew. Or how things could be improved. Or how there must be some way to get his vision back. You don't know the first thing about Matthew's eye. The doctors don't know much about Matthew's eye. You haven't been following him for the last 13 years and you don't know what's best for him. We, as his parents, are confident in his care, even if it doesn't seem to produce the ideal results. I am not dumb, nor is Matt. And my own dad is an ophthalmologist, so all of this is much more familiar to me than it would be your average Jane!
OK, stepping off my soap box now.
In other news, the boys all got parts in the play they are doing this year. Excalibur! It isn't your typical play though, so it would do me no good to tell you what parts they got because you wouldn't know who they were. Matthew got a pretty large role though, and I worry about him being dedicated enough to memorize his lines. I'm sure he'll be fine though. Dillon got a smaller role.
Collin and Zachary will be a tree and then knights who fight in the tournament. They are thrilled to not have to speak and to be able to sword fight. All's well.
Today, we started school. It went really well, and as usual, I'm thinking this will be the best year ever. This afternoon though, I'm exhausted. Oh well, this too shall pass.
Let's see, what else? Nothing that I can think of. And this is long anyway. Until the next time.
Monday, August 24, 2009
Thirteen years ago
Thirteen very short years ago, my title went from being daughter, sister, wife, to the best title in the world. Mother.
I know it is cliche, but it feels like just yesterday that I was pregnant. Well, yesterday (and today) I was pregnant, but I mean heavily pregnant with my first child.
I had no idea what to expect. We were so naive. God sure had other plans for us! We wouldn't get to just play dress up with our new baby, the way most young parents expect to. No, our road would be much more difficult.
And it would change us. All for the better. Through the years, there has been much heartache. Many talks (one sided arguments) with God. Many, many tears.
But the joy that we have had through the years takes those times and fades them into distant memories.
Matthew is such an amazing person. He continues to be artistic and would prefer to draw than to read. He doesn't really like school, but what kid does? He loves the theater and would be in a play all the time if the opportunity presented itself. Just last week, he and his brothers started the audition process for Excalibur. Soon, we should know their parts. It doesn't really matter to Matthew, though, he just wants to be on stage. I wonder where he gets that??
He starts eighth grade this year, which baffles me. How did we already get here? The other day, Emily was doing her little hand in the air saying, "boo boo" (blue's clues) and it took me back to eleven years ago, when Matthew did the exact same thing. It's amazing how much she sounds like he did.
I could go on and on about him, but I think I'll close. I told him that the reason I'm pregnant right now is because when they turn thirteen, we trade them in for newer models. He doesn't seem to believe me..claiming I love him too much to get rid of him. When did he get so smart??
I love you Matthew!
I know it is cliche, but it feels like just yesterday that I was pregnant. Well, yesterday (and today) I was pregnant, but I mean heavily pregnant with my first child.
I had no idea what to expect. We were so naive. God sure had other plans for us! We wouldn't get to just play dress up with our new baby, the way most young parents expect to. No, our road would be much more difficult.
And it would change us. All for the better. Through the years, there has been much heartache. Many talks (one sided arguments) with God. Many, many tears.
But the joy that we have had through the years takes those times and fades them into distant memories.
Matthew is such an amazing person. He continues to be artistic and would prefer to draw than to read. He doesn't really like school, but what kid does? He loves the theater and would be in a play all the time if the opportunity presented itself. Just last week, he and his brothers started the audition process for Excalibur. Soon, we should know their parts. It doesn't really matter to Matthew, though, he just wants to be on stage. I wonder where he gets that??
He starts eighth grade this year, which baffles me. How did we already get here? The other day, Emily was doing her little hand in the air saying, "boo boo" (blue's clues) and it took me back to eleven years ago, when Matthew did the exact same thing. It's amazing how much she sounds like he did.
I could go on and on about him, but I think I'll close. I told him that the reason I'm pregnant right now is because when they turn thirteen, we trade them in for newer models. He doesn't seem to believe me..claiming I love him too much to get rid of him. When did he get so smart??
I love you Matthew!
Monday, July 20, 2009
Update
Edited to add: my sister told me this sounds like they will be removing his eye in September. No, they will be doing a surgery to help him be comfortable. The doc talked with him about removing his eye because, at some point, that is what will happen.
Today, Matthew had a follow up appointment with the glaucoma doc.
After adding another drop, his pressure was actually higher today than last week.
The doc said it was time to start making some hard decisions. The cornea doc decided it was too soon to say his cornea is failing. But they both agreed that it definitely will. And when it does, it will be painful.
But for now, we have decided to move forward with a laser surgery. It is a procedure that will cause his eye to stop making so much fluid. This will, hopefully, reduce the pressure.
The goal is to keep him as comfortable as possible for as long as possible.
The doctor talked him through the procedure to remove an eye, which made Matthew feel much better.
So, surgery is tentatively scheduled for the first week of September. I do hope it helps him be comfortable!
Today, Matthew had a follow up appointment with the glaucoma doc.
After adding another drop, his pressure was actually higher today than last week.
The doc said it was time to start making some hard decisions. The cornea doc decided it was too soon to say his cornea is failing. But they both agreed that it definitely will. And when it does, it will be painful.
But for now, we have decided to move forward with a laser surgery. It is a procedure that will cause his eye to stop making so much fluid. This will, hopefully, reduce the pressure.
The goal is to keep him as comfortable as possible for as long as possible.
The doctor talked him through the procedure to remove an eye, which made Matthew feel much better.
So, surgery is tentatively scheduled for the first week of September. I do hope it helps him be comfortable!
Friday, July 17, 2009
I'm angry
I am struggling to write this post.
The last thing I ever want to do is cause someone to struggle in their walk because of something I do or say. Please know that these are my own feelings and I do not want anyone else to feel them on account of me. Keep walking strong!
As for me...I'm angry. God and I are having a disagreement right now. And it's OK. He knows I get angry, and He loves me anyway.
Yesterday, Matthew had an eye appointment. If you are new to this blog, Matthew is 12 years old and has glaucoma in his right eye. The goal for the last several years has been to keep the pressure under control in an effort to 1)preserve the tiny amount of vision in that eye (he can see shadows only, which helps him to avoid running into things) and 2)keep him out of pain.
He has been on several different medications over the years. They start out great, but over time, stop working.
We knew we were getting to the end, we just weren't really ready for it.
His drop is no longer working. And now his cornea is swelling. The question is, is it swelling because of the pressure, or because it is failing? No one really knows.
The doctor mentioned a couple different surgeries that would probably destroy any vision, but may reduce the pressure, and possibly the swelling. It would basically be to ease any pain.
The doctor didn't seem to really think that surgery was worth doing because of the loss of vision.
So, if the pressure continues uncontrolled, it will hurt, and the cornea swelling will hurt.
Eventually, he will most likely lose his eye.
Matthew is growing up, and we've talked with him about what he wants. How much more does he want to be put through?
He has decided that he doesn't want to be in pain, and he doesn't want to lose his eye. He wants to do any surgeries, even if they fail, to try and avoid those two scenarios.
The doctor added another drop, I'm not sure why, and we go back on Monday to see how it's working. I think if it helps, it's just a matter of time before it stops, and the doctor said the same thing.
I feel like the last 13 years have been for nothing. All that he has been through, will he end up losing the eye anyway?? Why have we been put through this trial? For nothing.
OK. OK. I know there must be some reason. I just cannot understand how putting a child through so much for nothing, can possibly be God's will. But then, I'm not God, and I don't see the whole picture.
I know some of you are sitting there thinking, 'what's the big deal, it's just an eye, there are much worse things'. Believe me, I know first hand that there are much worse things, but he's my baby..and well, I'm pregnant so everything seems worse.
I think I'm not so upset by this latest appointment, but I feel like we've lost the battle we've fought for so long. The rotten eye won! We'll show it in the end though, when it's removed, never to torment us again!! HA!
I have always said I would gladly give both my eyes, to fix his one eye. I still mean it. What I wouldn't do to take this all away from him. *sigh*
If only it were that easy.
Let me just say though, that Matthew is the most amazing kid. He takes it all, and doesn't let it get him down. It's gotta be hard, but you'd never know it by looking at him. I'm so proud to be his mom.
The last thing I ever want to do is cause someone to struggle in their walk because of something I do or say. Please know that these are my own feelings and I do not want anyone else to feel them on account of me. Keep walking strong!
As for me...I'm angry. God and I are having a disagreement right now. And it's OK. He knows I get angry, and He loves me anyway.
Yesterday, Matthew had an eye appointment. If you are new to this blog, Matthew is 12 years old and has glaucoma in his right eye. The goal for the last several years has been to keep the pressure under control in an effort to 1)preserve the tiny amount of vision in that eye (he can see shadows only, which helps him to avoid running into things) and 2)keep him out of pain.
He has been on several different medications over the years. They start out great, but over time, stop working.
We knew we were getting to the end, we just weren't really ready for it.
His drop is no longer working. And now his cornea is swelling. The question is, is it swelling because of the pressure, or because it is failing? No one really knows.
The doctor mentioned a couple different surgeries that would probably destroy any vision, but may reduce the pressure, and possibly the swelling. It would basically be to ease any pain.
The doctor didn't seem to really think that surgery was worth doing because of the loss of vision.
So, if the pressure continues uncontrolled, it will hurt, and the cornea swelling will hurt.
Eventually, he will most likely lose his eye.
Matthew is growing up, and we've talked with him about what he wants. How much more does he want to be put through?
He has decided that he doesn't want to be in pain, and he doesn't want to lose his eye. He wants to do any surgeries, even if they fail, to try and avoid those two scenarios.
The doctor added another drop, I'm not sure why, and we go back on Monday to see how it's working. I think if it helps, it's just a matter of time before it stops, and the doctor said the same thing.
I feel like the last 13 years have been for nothing. All that he has been through, will he end up losing the eye anyway?? Why have we been put through this trial? For nothing.
OK. OK. I know there must be some reason. I just cannot understand how putting a child through so much for nothing, can possibly be God's will. But then, I'm not God, and I don't see the whole picture.
I know some of you are sitting there thinking, 'what's the big deal, it's just an eye, there are much worse things'. Believe me, I know first hand that there are much worse things, but he's my baby..and well, I'm pregnant so everything seems worse.
I think I'm not so upset by this latest appointment, but I feel like we've lost the battle we've fought for so long. The rotten eye won! We'll show it in the end though, when it's removed, never to torment us again!! HA!
I have always said I would gladly give both my eyes, to fix his one eye. I still mean it. What I wouldn't do to take this all away from him. *sigh*
If only it were that easy.
Let me just say though, that Matthew is the most amazing kid. He takes it all, and doesn't let it get him down. It's gotta be hard, but you'd never know it by looking at him. I'm so proud to be his mom.
Thursday, July 2, 2009
Maybe we are just too overprotective
So Matthew has swimmer's ear. I had to take him to the doctor to get some drops. I don't know if they do this at all military bases, but here they divide clinics up between pediatric and adolescent. At his last physical, we were told we could keep our same doctor or he could go up to the adolescent clinic. We had decided we would keep the same doctor.
When I called to make his appointment, they had one available, and only one, in the adolescent clinic.
Dillon had a Bible study to go to, so I had Matthew and the younger 3.
They called Matthew back for his vitals and I was in shock.
The huge bulletin board was covered with nothing but info on STDs. And condoms! Yes, condoms in packages hanging on the board. Even a cartoon of cookie monster holding a condom that said, "C is for condom".
There were statistics about if you have X amount of partners, then you are having sex with all these other people. I was really horrified.
How do they get to decide that it is ok to expose my kids to all that. I watched my kids closely and none of them paid attention to the board, but had Dillon been there, it would have been a different story.
There was a very disturbing picture of a guy with herpes all over his mouth. I can imagine Dillon would have been asking me about it.
When it was time to see the doctor, the bulletin board was covered with what to do if you are raped. And on the counter, instead of cotton swabs and tongue depressors was a huge box of condoms...and a diaphragm. OK, if the point is to prevent STDs, why the diaphragm? Matt says because they consider kids an STD.
Anyway, I was really, realy upset. WE should decide when our kids learn about sex and STDs, NOT the government.
I know it is much worse in schools and it reinforced our decision to homeschool.
And you know, it isn't just adolescents going to the clinic. It is younger siblings going with them. Who are they to expose that to my kids??
The doctor also told Matthew that from now on, they would be meeting with him alone in case he had any questions about anything regarding growing up. I don't know about that either. Matthew said there is no way he's talking to a complete stranger about anything personal!
Maybe we are just way too overprotective, I don't know. I just know that we are not comfortable with him going to the adolescent clinic again. Not yet, anyway.
When I called to make his appointment, they had one available, and only one, in the adolescent clinic.
Dillon had a Bible study to go to, so I had Matthew and the younger 3.
They called Matthew back for his vitals and I was in shock.
The huge bulletin board was covered with nothing but info on STDs. And condoms! Yes, condoms in packages hanging on the board. Even a cartoon of cookie monster holding a condom that said, "C is for condom".
There were statistics about if you have X amount of partners, then you are having sex with all these other people. I was really horrified.
How do they get to decide that it is ok to expose my kids to all that. I watched my kids closely and none of them paid attention to the board, but had Dillon been there, it would have been a different story.
There was a very disturbing picture of a guy with herpes all over his mouth. I can imagine Dillon would have been asking me about it.
When it was time to see the doctor, the bulletin board was covered with what to do if you are raped. And on the counter, instead of cotton swabs and tongue depressors was a huge box of condoms...and a diaphragm. OK, if the point is to prevent STDs, why the diaphragm? Matt says because they consider kids an STD.
Anyway, I was really, realy upset. WE should decide when our kids learn about sex and STDs, NOT the government.
I know it is much worse in schools and it reinforced our decision to homeschool.
And you know, it isn't just adolescents going to the clinic. It is younger siblings going with them. Who are they to expose that to my kids??
The doctor also told Matthew that from now on, they would be meeting with him alone in case he had any questions about anything regarding growing up. I don't know about that either. Matthew said there is no way he's talking to a complete stranger about anything personal!
Maybe we are just way too overprotective, I don't know. I just know that we are not comfortable with him going to the adolescent clinic again. Not yet, anyway.
Monday, April 13, 2009
This is not good, not good at all...
Yesterday was our nephew's birthday.
He is the eldest child of Matt's brother.
He turned five years old.
Five is a big milestone. It is going from little boy, to big boy. It's a rough one for many mommies.
As I was thinking about him and how his mommy must be feeling, this thought popped into my head...'he's five, they still get 13 years with him, that's good'.
OK, now, I realize this may sound illogical. But in my twisted little head, people grow up and get married when they turn 18. It happened that way for me, why not everyone? I realize that in reality, we are the minority. Oh, I hope so.
Because the very next thought in my head was, 'oh dear...Matthew is almost 13, leaving us a mere 5 years with him'
FIVE YEARS?!?!?!
NO!! This cannot be. That isn't long enough!!!
People used to say we would be so glad when our kids get to be that age, and we will want them to leave.
I cannot see that happening. I can't fathom it.
We only have five years to get things right. I worry every day about screwing up my kids, and somewhere in the back of my mind I figure we'll get it right...one of these days.
But one of these days is going to be here and gone before I get it right.
This isn't good. Five years?? Five more years to be able to fully enjoy my boy? The one who made me a mother? The one who means so much to me? The one who makes me laugh every. single. day?
I'm sure I'm overreacting, and maybe he won't fly the coop in five years. And even if he does, that doesn't mean our relationship is over. But it will never be the same. When he flies, he'll take a piece of my heart.
How did we get here?
One of my favorite songs has always been 'Beautiful Boy' by John Lennon. Mainly because of one line...
Life is what happens to you
while your busy making other plans.
Boy, isn't that the truth.
I'm vowing to embrace every moment with my kids, because they are gone, way too fast.
Can I just say that my biggest desire for him is that in five years, in twenty-five years, for the rest of his life that he is still unashamed to say he loves Jesus.
*yes, I realize this is all a bit dramatic, but it hit me like a ton of bricks, and I had to write it down.
He is the eldest child of Matt's brother.
He turned five years old.
Five is a big milestone. It is going from little boy, to big boy. It's a rough one for many mommies.
As I was thinking about him and how his mommy must be feeling, this thought popped into my head...'he's five, they still get 13 years with him, that's good'.
OK, now, I realize this may sound illogical. But in my twisted little head, people grow up and get married when they turn 18. It happened that way for me, why not everyone? I realize that in reality, we are the minority. Oh, I hope so.
Because the very next thought in my head was, 'oh dear...Matthew is almost 13, leaving us a mere 5 years with him'
FIVE YEARS?!?!?!
NO!! This cannot be. That isn't long enough!!!
People used to say we would be so glad when our kids get to be that age, and we will want them to leave.
I cannot see that happening. I can't fathom it.
We only have five years to get things right. I worry every day about screwing up my kids, and somewhere in the back of my mind I figure we'll get it right...one of these days.
But one of these days is going to be here and gone before I get it right.
This isn't good. Five years?? Five more years to be able to fully enjoy my boy? The one who made me a mother? The one who means so much to me? The one who makes me laugh every. single. day?
I'm sure I'm overreacting, and maybe he won't fly the coop in five years. And even if he does, that doesn't mean our relationship is over. But it will never be the same. When he flies, he'll take a piece of my heart.
How did we get here?
One of my favorite songs has always been 'Beautiful Boy' by John Lennon. Mainly because of one line...
Life is what happens to you
while your busy making other plans.
Boy, isn't that the truth.
I'm vowing to embrace every moment with my kids, because they are gone, way too fast.
Can I just say that my biggest desire for him is that in five years, in twenty-five years, for the rest of his life that he is still unashamed to say he loves Jesus.
*yes, I realize this is all a bit dramatic, but it hit me like a ton of bricks, and I had to write it down.
Wednesday, March 18, 2009
Yesterday
As you all know, yesterday Emily had an upper GI. What you may not know is that she is still nursing. She couldn't eat or drink after 7 am. If you've ever nursed a toddler, you know that the last times they give up are at night and first thing in the morning. I was so hoping she would sleep late and it wouldn't be an issue. We weren't so lucky. She woke right around 7. And she cried, and was so upset that she couldn't have her morning comfort.
By 8, I didn't know what to do to distract her, so knew we needed to get in the car and just drive. So, we did.
We made it down the road when Matthew announced that his eye was hurting. His good eye. He said it felt like it was exploding. Then he told me it felt like something was inside it, eating it. Lovely.
In case you don't know, Matthew has glaucoma in the other eye, and just has funky eye problems that pop up and surprise us.
So, we turned around and went home to get him some Tylenol. When I came back to the van, I thought he had gotten out, because I couldn't see him. He was curled up in pain on the passenger seat. I had never seen him in pain like this from his eyes.
Matt had gone into work, but finished up and came home and came with us to the hospital.
On our way there, we called the ophthalmologist to see if Matthew needed to be seen. Of course, he said yes.
Once we got to the hospital, I took Emmie, and Matt took Matthew and the boys to the ophthalmologist. Thankfully, they are about two doors down the hallway from each other.
I was nervous about the upper GI. But Emily did great. She was frozen and didn't budge the entire time. I had told her she was going to take some medicine. She opened her little mouth like a bird and drank that nasty barium.
All we found out is that yes she is refluxing. We already knew that. The pediatrician is concerned about a hernia being the cause of the reflux. So, I think she'll be scoped in the near future. Just have to wait and see.
As for Matthew, the pain went away, and they said it was probably an ocular migraine. But the pressure was way up in the bad eye. We stayed there for hours while they gave him drop after drop to try to get the pressure down. They never did get it down past 32. He'll see his glaucoma doc in two weeks. For now, though, the pain is gone.
Later I had the privilege of getting my temporary crown put in. It was horrible. I hate the dentist and am always in such pain afterwards. I just wanted to curl into a ball last night and run away from the pain.
Today is a new day, and it's sore, but nothing like yesterday.
I feel totally overwhelmed. We still have the science fair on Friday, the concert on Sunday, Matt is preaching in a different church on Saturday, and the dreaded VCUG is tomorrow. What I really want to do is clean out my house. Shovel out all the clutter. But that takes time, and I don't have a lot of that right now!
By 8, I didn't know what to do to distract her, so knew we needed to get in the car and just drive. So, we did.
We made it down the road when Matthew announced that his eye was hurting. His good eye. He said it felt like it was exploding. Then he told me it felt like something was inside it, eating it. Lovely.
In case you don't know, Matthew has glaucoma in the other eye, and just has funky eye problems that pop up and surprise us.
So, we turned around and went home to get him some Tylenol. When I came back to the van, I thought he had gotten out, because I couldn't see him. He was curled up in pain on the passenger seat. I had never seen him in pain like this from his eyes.
Matt had gone into work, but finished up and came home and came with us to the hospital.
On our way there, we called the ophthalmologist to see if Matthew needed to be seen. Of course, he said yes.
Once we got to the hospital, I took Emmie, and Matt took Matthew and the boys to the ophthalmologist. Thankfully, they are about two doors down the hallway from each other.
I was nervous about the upper GI. But Emily did great. She was frozen and didn't budge the entire time. I had told her she was going to take some medicine. She opened her little mouth like a bird and drank that nasty barium.
All we found out is that yes she is refluxing. We already knew that. The pediatrician is concerned about a hernia being the cause of the reflux. So, I think she'll be scoped in the near future. Just have to wait and see.
As for Matthew, the pain went away, and they said it was probably an ocular migraine. But the pressure was way up in the bad eye. We stayed there for hours while they gave him drop after drop to try to get the pressure down. They never did get it down past 32. He'll see his glaucoma doc in two weeks. For now, though, the pain is gone.
Later I had the privilege of getting my temporary crown put in. It was horrible. I hate the dentist and am always in such pain afterwards. I just wanted to curl into a ball last night and run away from the pain.
Today is a new day, and it's sore, but nothing like yesterday.
I feel totally overwhelmed. We still have the science fair on Friday, the concert on Sunday, Matt is preaching in a different church on Saturday, and the dreaded VCUG is tomorrow. What I really want to do is clean out my house. Shovel out all the clutter. But that takes time, and I don't have a lot of that right now!
Thursday, January 15, 2009
Hip Hip Hooray!
Matthew had an appointment with the glaucoma doc this morning. His pressure was down! HOORAY!!!
This is such great news. Last med we tried just kind of fizzled out, and it looked like this was going to also. But no! It's still working!
We get six months until the next trip back to see him.
The only downer of the appointment was that Matthew used to be able to make out how many fingers someone was holding up using his right eye. He can no longer do that. He could see the tech's hand waving, but couldn't make anything out. The doc says his eye is very damaged.
In six months they are going to try to do some sort of scan, and if I understand correctly it is to be able to keep track of the damage a bit better. Please correct me if I'm wrong, Papa.
But hooray! The pressure is down and he relatively pain free these days! WOOT!!
This is such great news. Last med we tried just kind of fizzled out, and it looked like this was going to also. But no! It's still working!
We get six months until the next trip back to see him.
The only downer of the appointment was that Matthew used to be able to make out how many fingers someone was holding up using his right eye. He can no longer do that. He could see the tech's hand waving, but couldn't make anything out. The doc says his eye is very damaged.
In six months they are going to try to do some sort of scan, and if I understand correctly it is to be able to keep track of the damage a bit better. Please correct me if I'm wrong, Papa.
But hooray! The pressure is down and he relatively pain free these days! WOOT!!
Wednesday, January 14, 2009
How did I survive all of this??
I've been tripping down memory lane, and got to thinking about when Matthew was first born.
The year was 1996, and I was mere 20 years old. We were surprised to find out he had a cleft nose, and later to discover he had a cataract in his right eye.
We were poor. Very poor. Matt worked 3 jobs for quite awhile to make ends meet for us. I had always planned on going back to work after Matthew was born (somehow I didn't know how much daycare cost!) but that would prove impossible, as you will see. This memory simply involves traveling. What it leaves out is the hard time we had with drops, and the terrible things that came with a baby wearing a contact. The good thing I will never forget about this time is how wonderful our family friend and optician, Gary, was to us. I owe that man so much, and will never be able to repay him for all he did for us. I remember many, many times, being in his office, him trying to get a contact in little Matthew's eye. He would always be wearing a sweater, it seems like. It wouldn't take long before he was stripping it off and working in a cooler shirt. He would be sweating up a storm. It was NOT easy, by any stretch of the imagination.
But again..this is about traveling, not those things.
Matthew's eye doctor was a 6 hour drive away. He started seeing him at 2 weeks old. Had his first surgery at one month old. After that, he wore a contact lens in his right eye because they had removed his lens during the first surgery. During his first two years, he would go on to have four more surgeries on his eye.
During the first year, while he wore his contact, we had to go to the doctor every two-three weeks. Well, we were poor and couldn't afford for Matt to take off. We had one car then, so Matt would arrange for people to take him to and from his jobs.
I would drive me and Matthew up there the day before the appointment, spend the night, and come home the next day after his appointment. Sometimes, he would have several appointments with different doctors. On those trips we'd have to stay the night a second night. Many of the appointments were sedated, so that would add another level to it. If they weren't sedated, they would wrap him in a blanket on a papoose board, then use a tiny little speculum to hold his eyelids open while he screamed. These were awful, awful times for me.
OK, so what is crazy to me is...we didn't even have cell phones back then! I would have to wait till I got home, or till that night to be able to call Matt, using a calling card, to tell him what transpired! Often, if I got bad news, I would call my mother-in-law from the hospital pay phone, collect,to tell SOMEONE what had happened.
Also crazy to me is that we toyed with the idea of getting a CB radio. A CB!!! CRAZY!! But there was a mountain pass I had to go over and in the winter it was white knuckle driving. The only reason we didn't get a CB was because we couldn't afford it.
Luckily, Matt was able to be with us for those first surgeries, but nothing else because we just couldn't afford it.
Apropos to nothing, Matthew started having his nose reconstructed when he was 6. He has had 3 surgeries to date on it, Matt has been there for one. The first one, he was in Spain. He was due to be home, but they changed the orders on us, so he was in Spain. The second, he was there for, and the third he was in school, I think it was probably finals week or something. Or else, as usual, we couldn't afford for him to take off from work and pay for a trip.
Somehow, I have managed to do all of this, and survive it! Through the years I have seen more medical procedures done on my children than I thought possible. And I have been there for every one. Holding that sweet child after the procedure.
I don't know how I managed to survive through the early years with Matthew. God was definitely watching out for us.
If I've learned anything through the years, it is that while I may feel weak, I am strong.
I AM A SURVIVOR!
The year was 1996, and I was mere 20 years old. We were surprised to find out he had a cleft nose, and later to discover he had a cataract in his right eye.
We were poor. Very poor. Matt worked 3 jobs for quite awhile to make ends meet for us. I had always planned on going back to work after Matthew was born (somehow I didn't know how much daycare cost!) but that would prove impossible, as you will see. This memory simply involves traveling. What it leaves out is the hard time we had with drops, and the terrible things that came with a baby wearing a contact. The good thing I will never forget about this time is how wonderful our family friend and optician, Gary, was to us. I owe that man so much, and will never be able to repay him for all he did for us. I remember many, many times, being in his office, him trying to get a contact in little Matthew's eye. He would always be wearing a sweater, it seems like. It wouldn't take long before he was stripping it off and working in a cooler shirt. He would be sweating up a storm. It was NOT easy, by any stretch of the imagination.
But again..this is about traveling, not those things.
Matthew's eye doctor was a 6 hour drive away. He started seeing him at 2 weeks old. Had his first surgery at one month old. After that, he wore a contact lens in his right eye because they had removed his lens during the first surgery. During his first two years, he would go on to have four more surgeries on his eye.
During the first year, while he wore his contact, we had to go to the doctor every two-three weeks. Well, we were poor and couldn't afford for Matt to take off. We had one car then, so Matt would arrange for people to take him to and from his jobs.
I would drive me and Matthew up there the day before the appointment, spend the night, and come home the next day after his appointment. Sometimes, he would have several appointments with different doctors. On those trips we'd have to stay the night a second night. Many of the appointments were sedated, so that would add another level to it. If they weren't sedated, they would wrap him in a blanket on a papoose board, then use a tiny little speculum to hold his eyelids open while he screamed. These were awful, awful times for me.
OK, so what is crazy to me is...we didn't even have cell phones back then! I would have to wait till I got home, or till that night to be able to call Matt, using a calling card, to tell him what transpired! Often, if I got bad news, I would call my mother-in-law from the hospital pay phone, collect,to tell SOMEONE what had happened.
Also crazy to me is that we toyed with the idea of getting a CB radio. A CB!!! CRAZY!! But there was a mountain pass I had to go over and in the winter it was white knuckle driving. The only reason we didn't get a CB was because we couldn't afford it.
Luckily, Matt was able to be with us for those first surgeries, but nothing else because we just couldn't afford it.
Apropos to nothing, Matthew started having his nose reconstructed when he was 6. He has had 3 surgeries to date on it, Matt has been there for one. The first one, he was in Spain. He was due to be home, but they changed the orders on us, so he was in Spain. The second, he was there for, and the third he was in school, I think it was probably finals week or something. Or else, as usual, we couldn't afford for him to take off from work and pay for a trip.
Somehow, I have managed to do all of this, and survive it! Through the years I have seen more medical procedures done on my children than I thought possible. And I have been there for every one. Holding that sweet child after the procedure.
I don't know how I managed to survive through the early years with Matthew. God was definitely watching out for us.
If I've learned anything through the years, it is that while I may feel weak, I am strong.
I AM A SURVIVOR!
Monday, November 17, 2008
The shining moment
Willy Wonka Jr ran this weekend. As you know by now, my eldest two were in it. Matthew (12) was Grandpa Joe and Dillon (10) was Mick TeaVee. They did so very well.
Every night, flowers and Wonka candy were sold. The actors were always given flowers or candy from their family and friends who came to see them.
Everyone, that is except for one girl. Caili, aka Mrs Bucket. She was the only other homeschooled kid and she is also a military brat.
So, like my kids, there wasn't anyone to see her. OK, as a side note here, the last day my kids did have friends see them, but that was it, us and them.
We had searched and found Wonka Bars at Toys R Us. Now, the Wonka Bars were prized candy. In fact, before the last performance, they auctioned off a bar for $35. Insane, right? All in the spirit though!
At any rate, the Wonka Bars didn't show up till the end, and we had already given bars to our kids.
What I didn't know, though, was that Matthew had saved his. The next day he said he needed to talk to me. I asked him what was up and he said, "I really appreciate that you got us Wonka Bars, but I'd like to give mine to someone" Me, "oh really? who?" "Caili, she never has anyone to watch her and she hasn't gotten anything after the play"
Oh my, I was so proud of him!
And so he did. Only the exchange was much less grand than one might think. He stopped her and said, "here, this is for you" She looked confused and said thank you and walked off. She'll never know how much thought went into that gesture, and how huge it is coming from him.
Yes, the kids were awesome. Many, MANY people told me how great they were and especially how wonderfully Matthew can sing. But this one act, that was seen by no one, was definitely the shining moment for me.
Every night, flowers and Wonka candy were sold. The actors were always given flowers or candy from their family and friends who came to see them.
Everyone, that is except for one girl. Caili, aka Mrs Bucket. She was the only other homeschooled kid and she is also a military brat.
So, like my kids, there wasn't anyone to see her. OK, as a side note here, the last day my kids did have friends see them, but that was it, us and them.
We had searched and found Wonka Bars at Toys R Us. Now, the Wonka Bars were prized candy. In fact, before the last performance, they auctioned off a bar for $35. Insane, right? All in the spirit though!
At any rate, the Wonka Bars didn't show up till the end, and we had already given bars to our kids.
What I didn't know, though, was that Matthew had saved his. The next day he said he needed to talk to me. I asked him what was up and he said, "I really appreciate that you got us Wonka Bars, but I'd like to give mine to someone" Me, "oh really? who?" "Caili, she never has anyone to watch her and she hasn't gotten anything after the play"
Oh my, I was so proud of him!
And so he did. Only the exchange was much less grand than one might think. He stopped her and said, "here, this is for you" She looked confused and said thank you and walked off. She'll never know how much thought went into that gesture, and how huge it is coming from him.
Yes, the kids were awesome. Many, MANY people told me how great they were and especially how wonderfully Matthew can sing. But this one act, that was seen by no one, was definitely the shining moment for me.
Friday, November 14, 2008
I'm so proud!
Last night was opening night!
I worked backstage so saw the whole thing from the wings.
For the first time I saw the show without Emily squawking in my ear. It was so great.
I've said it before, and I'll say it again...my boys can sing!
But aside from them, everyone did a great job. I was a bit concerned during dress rehearsal. I wasn't sure the younger kids could pull it together, but they did.
I felt bad for my kids though, because there was no one in the audience for them. After the show they said, "go out in the audience and see your family and friends" and my kids had no one. Oh well, Sunday their friends will be there.
Anyway, I'm pretty proud of them today.
I worked backstage so saw the whole thing from the wings.
For the first time I saw the show without Emily squawking in my ear. It was so great.
I've said it before, and I'll say it again...my boys can sing!
But aside from them, everyone did a great job. I was a bit concerned during dress rehearsal. I wasn't sure the younger kids could pull it together, but they did.
I felt bad for my kids though, because there was no one in the audience for them. After the show they said, "go out in the audience and see your family and friends" and my kids had no one. Oh well, Sunday their friends will be there.
Anyway, I'm pretty proud of them today.
Sunday, November 9, 2008
This is it!
Willy Wonka Jr runs this week!
I can't believe, after devoting all our time to rehearsals and tech days for the last two and a half months that it is finally here!
The kids are doing so great, and we are so very proud of them.
Last night, Matthew and Dillon put on a little performance for us. Dillon did his main song and Matthew sang and did the choreography of Dill's mother with him. Then Matthew did one of his big songs and Dillon played the part of Charlie during it.
My kids can sing! Not to brag, but they can. Which is huge to me, because I cannot. And I have always hoped that they would get their dad's musical ability. Thank goodness, they have!
I'm ready for the show to be done, but at the same time I'm not. It has been a great experience for the boys. We will be doing this more often, for sure.
But at the end of this week I'll be singing along with them..."no Willy Wonka just can't go!!"
I can't believe, after devoting all our time to rehearsals and tech days for the last two and a half months that it is finally here!
The kids are doing so great, and we are so very proud of them.
Last night, Matthew and Dillon put on a little performance for us. Dillon did his main song and Matthew sang and did the choreography of Dill's mother with him. Then Matthew did one of his big songs and Dillon played the part of Charlie during it.
My kids can sing! Not to brag, but they can. Which is huge to me, because I cannot. And I have always hoped that they would get their dad's musical ability. Thank goodness, they have!
I'm ready for the show to be done, but at the same time I'm not. It has been a great experience for the boys. We will be doing this more often, for sure.
But at the end of this week I'll be singing along with them..."no Willy Wonka just can't go!!"
Thursday, September 11, 2008
Drum Roll Please
We got the cast list today!
Matthew got the part of Grandpa Joe, and Dillon got Mike TeeVee.
They are both really excited about it!
And now, some pictures..that have nothing to do with any wonkaness, just pics I came across and are too cute to not share!
This picture makes me laugh. While she is thrilled to love on her brother, she's not so sure about the cousin hugs!! So cute!
Matthew got the part of Grandpa Joe, and Dillon got Mike TeeVee.
They are both really excited about it!
And now, some pictures..that have nothing to do with any wonkaness, just pics I came across and are too cute to not share!
This picture makes me laugh. While she is thrilled to love on her brother, she's not so sure about the cousin hugs!! So cute!
Tuesday, September 9, 2008
Willy Wonka Jr
Matthew and Dillon are taking an acting workshop.
They will be putting on Willy Wonka Jr in November, but besides just doing the play they are learning things. The first two nights they've learned how to do a proper audtion, how to project, and upstage, downstage, stage right, etc.
Sunday they auditioned. I think I'm more anxious than they are to see what parts they got. We have to wait till Thursday, and it's killing me!! I do hope they get good parts because they worked hard on their auditions.
You may recall them doing Charlie and the Chocolate Factory three years ago, and they were oompa loompas. I hope they don't have to be oompa loompas again, but they both said they would be happy even if they had to pull the curtain.
I'll keep you all posted!
They will be putting on Willy Wonka Jr in November, but besides just doing the play they are learning things. The first two nights they've learned how to do a proper audtion, how to project, and upstage, downstage, stage right, etc.
Sunday they auditioned. I think I'm more anxious than they are to see what parts they got. We have to wait till Thursday, and it's killing me!! I do hope they get good parts because they worked hard on their auditions.
You may recall them doing Charlie and the Chocolate Factory three years ago, and they were oompa loompas. I hope they don't have to be oompa loompas again, but they both said they would be happy even if they had to pull the curtain.
I'll keep you all posted!
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