Mom moved on Saturday. Five burly bikers and two young men and me all showed up early to help Mom and Bob with the big moving of furniture and remaining boxes. We worked for 12 hours (I left after 11) and the end result is that Mom and Bob have a house full of furniture and boxes...and there's still some that got left behind because we ran out of time.
I think the job was bigger than anticipated. Certain things weren't as well communicated as they could have been, so there's still quite a bit to move and do, which makes everything interesting. Since Mom's not fully out, and won't be for a while, our move has been postponed to a date to be determined. First, Mom needs to make arrangements for what's left, and she's pretty busy most of the week so that'll take a little time to do. After that, we can proceed.
The hope was for our family to be in before the end of the school year so I'd have a few days with no kids underfoot to work on unpacking and settling in and decorating. I'm thinking it'll be sometime in the summer before we're actually moved, so I'll have to get creative with child distractions. Hopefully we can have a safe room with a tv and toys for them.
Then, yesterday, Caleb had to have surgery to remove a ruptured appendix. He was in pain starting early in the afternoon on Sunday and it just lingered until he ended up in the ER (for the second time in two days) yesterday morning and in surgery last night at 7. He's doing better and will be there for a couple of days recuperating.
Then today, I called the doctor in Dallas to confirm a couple of things before the appointment in a week and they told me that he does NOT have privileges at Children's. So now I'm trying to work that out and figure out what happened.
I'm tired.
Wednesday, April 25, 2018
Friday, April 20, 2018
Then the other shoe drops
The last few weeks/months have been pretty good around here. We've had some illness, but a house full of young children goes through that periodically. We've had more ups than downs lately.
Then Monday happened.
For those who forgot, or maybe didn't know, on top of Eden's heart issues, she's also got ptosis, a droopy eyelid, on her left eye. She's been seeing a pediatric ophthalmologist since she was 6 months old since it's so low it obstructs the top of her pupil. Put your hand over the top of your eye and look around....that's her whole life. Back in December, her doctor went out of network so we had to find a new one. We saw him in February for a vision check, more than the eye exams we'd been having. Three is about as young as you can check vision.
She did great with her right eye, but was very uncooperative with her left. He managed to get enough of a check done that he estimated her vision at about 20/60. He sent us home with instructions to play "pirate" to get her used to covering her dominant eye for another exam in April. She got pretty good at it and had fun teasing us with how long she could do it.
Monday was that follow up exam. She, again, did great on the right eye but when it came time to check the left, she wasn't really working with us. When the doctor finally came in to do his part, he tested her using a card and said she's not being uncooperative, because she answered just fine when it was her right eye, she just couldn't see. He estimates her current vision in her left eye to be about 20/80. That much deterioration in two months leads him to believe that her brain has started to ignore her left eye.
People with ptosis usually adapt. Think about Forrest Whitaker. He's got it pretty severely and he does fine. I'm not sure if his vision is affected, but it's pretty likely. Eden should have begun to tilt her head back to see better under the eyelid. Her eye seems to be perfectly fine, it's just not being utilized.
So her doctor wants to move her ptosis surgery from summer of 2020 to .... now, essentially.
Not tomorrow, or even next week (thank god for small favors), but sooner rather than later. He sent us home with instructions to patch her for three weeks. We have a follow up appointment with him on May 7.
Because of her heart, this surgery has risks and can't be done in Abilene. She has to go to Dallas to have it done at Children's. So when I got home Monday afternoon, I emailed her cardiologist to fill her in and ask about next steps. She doesn't have an eye surgeon in mind, so our doctor here agreed (and even offered at the appointment) to find one for us. Wednesday we got a call that we have an appointment in Dallas with a pediatric eye plastic surgeon on May 8.
Because I want to do ALL THE THINGS the week after we move. Sounds fantastic.
That's why, if you've seen Eden this week, she's wearing an eye patch. She hates them, but at least she's quit pulling them off. It's a struggle to get them on, but once it's on she generally leaves it alone. Monday was rough, she kept pulling them off, but if we can get her distracted with tv or her tablet, she forgets she's wearing it. I got some pretty ones on Amazon with ladybugs, mermaids, stars, teddy bears, and mouse princesses on them. Amazon seriously has everything, you guys.
I did a little googling of what her surgery will probably be and it looks like it's a 45 minute to 2 hour procedure and we likely won't have to have a stay in the hospital. I'd love if we didn't have to stay overnight at all, but if we do, I'd rather stay in a hotel. Granted, what I read was about a normal pediatric ptosis surgery, not a cardiac patient.
I have every confidence this will go well and she'll regain her vision. We've caught it as early as we could and we're doing what we can. She's my and Austin's child, and no one in our families has good eyes, so it's a given our kids will need glasses at some point. 20/80 isn't terrible (I'm sure mine is worse since I can't even tell if there's a chart on the wall, let alone read any letters) so if it even stalls there, that would be ok with me. That's correctable. We just have to get her brain to use that eye.
And I think it is. She's been watching tv one eyed all week and she's tilting her head back and correctly answering questions the Bubble Guppies and UmiZoomi ask. She gets pretty close to things, but she IS seeing. So that's a relief.
No one likes hearing their child needs surgery, or for that surgery to be complicated. I did cry on Monday, even as I was telling myself it would be fine, that this was nothing, a routine, simple thing for these doctors. The tricky part is the anesthesia, and that's why she's going to Children's. And if anything were to go sideways, she's there at a fantastic hospital that is fully equipped to handle her special case.
But she's still my baby and she's having surgery. Possibly in as little as a month or so.
So, prayers, healing thoughts, etc, all are welcome. She's a fighter and she's strong and willful. She won't let this keep her down.
Then Monday happened.
For those who forgot, or maybe didn't know, on top of Eden's heart issues, she's also got ptosis, a droopy eyelid, on her left eye. She's been seeing a pediatric ophthalmologist since she was 6 months old since it's so low it obstructs the top of her pupil. Put your hand over the top of your eye and look around....that's her whole life. Back in December, her doctor went out of network so we had to find a new one. We saw him in February for a vision check, more than the eye exams we'd been having. Three is about as young as you can check vision.
She did great with her right eye, but was very uncooperative with her left. He managed to get enough of a check done that he estimated her vision at about 20/60. He sent us home with instructions to play "pirate" to get her used to covering her dominant eye for another exam in April. She got pretty good at it and had fun teasing us with how long she could do it.
Monday was that follow up exam. She, again, did great on the right eye but when it came time to check the left, she wasn't really working with us. When the doctor finally came in to do his part, he tested her using a card and said she's not being uncooperative, because she answered just fine when it was her right eye, she just couldn't see. He estimates her current vision in her left eye to be about 20/80. That much deterioration in two months leads him to believe that her brain has started to ignore her left eye.
People with ptosis usually adapt. Think about Forrest Whitaker. He's got it pretty severely and he does fine. I'm not sure if his vision is affected, but it's pretty likely. Eden should have begun to tilt her head back to see better under the eyelid. Her eye seems to be perfectly fine, it's just not being utilized.
So her doctor wants to move her ptosis surgery from summer of 2020 to .... now, essentially.
Not tomorrow, or even next week (thank god for small favors), but sooner rather than later. He sent us home with instructions to patch her for three weeks. We have a follow up appointment with him on May 7.
Because of her heart, this surgery has risks and can't be done in Abilene. She has to go to Dallas to have it done at Children's. So when I got home Monday afternoon, I emailed her cardiologist to fill her in and ask about next steps. She doesn't have an eye surgeon in mind, so our doctor here agreed (and even offered at the appointment) to find one for us. Wednesday we got a call that we have an appointment in Dallas with a pediatric eye plastic surgeon on May 8.
Because I want to do ALL THE THINGS the week after we move. Sounds fantastic.
That's why, if you've seen Eden this week, she's wearing an eye patch. She hates them, but at least she's quit pulling them off. It's a struggle to get them on, but once it's on she generally leaves it alone. Monday was rough, she kept pulling them off, but if we can get her distracted with tv or her tablet, she forgets she's wearing it. I got some pretty ones on Amazon with ladybugs, mermaids, stars, teddy bears, and mouse princesses on them. Amazon seriously has everything, you guys.
I did a little googling of what her surgery will probably be and it looks like it's a 45 minute to 2 hour procedure and we likely won't have to have a stay in the hospital. I'd love if we didn't have to stay overnight at all, but if we do, I'd rather stay in a hotel. Granted, what I read was about a normal pediatric ptosis surgery, not a cardiac patient.
I have every confidence this will go well and she'll regain her vision. We've caught it as early as we could and we're doing what we can. She's my and Austin's child, and no one in our families has good eyes, so it's a given our kids will need glasses at some point. 20/80 isn't terrible (I'm sure mine is worse since I can't even tell if there's a chart on the wall, let alone read any letters) so if it even stalls there, that would be ok with me. That's correctable. We just have to get her brain to use that eye.
And I think it is. She's been watching tv one eyed all week and she's tilting her head back and correctly answering questions the Bubble Guppies and UmiZoomi ask. She gets pretty close to things, but she IS seeing. So that's a relief.
No one likes hearing their child needs surgery, or for that surgery to be complicated. I did cry on Monday, even as I was telling myself it would be fine, that this was nothing, a routine, simple thing for these doctors. The tricky part is the anesthesia, and that's why she's going to Children's. And if anything were to go sideways, she's there at a fantastic hospital that is fully equipped to handle her special case.
But she's still my baby and she's having surgery. Possibly in as little as a month or so.
So, prayers, healing thoughts, etc, all are welcome. She's a fighter and she's strong and willful. She won't let this keep her down.
Her eye is as open as it ever gets. Her first eye patch. She didn't know what was happening so she didn't fight it.
We bought this one but it wouldn't stay in place very well and was constantly slipping over her left eye, so we quit that. It was soft, though, so she prefers it.
Watching tv with a mermaid eye patch. Apparently this is comfortable?
Thursday, April 12, 2018
Busy Busy Busy
We've been blowing and going around here for the past several weeks. packing and moving boxes and stacking boxes and repacking after the kids find the boxes and pull out toys they haven't played with in ages so I thought were safe to pack but OH NO IT'S ACTUALLY THEIR FAVORITE TOYS and.....
I'm a little stressed. And tired. Ok, very tired. I have a standing Monday night "Mom Date" and last week I nearly fell asleep whenever there were those regular comfortable lulls in the conversation. I was asleep within about 15 minutes of walking in the front door.
We have packed up nearly everything we don't use on a daily, or even weekly, basis and there's lots of empty places in our house. They're balanced by the giant pile of packed and labeled boxes by the front door which is balanced by the pile of empty boxes in front of the fireplace.
I didn't used to be claustrophobic or have a huge issue with clutter but this past month I've felt on edge about stuff everywhere. We moved a ton of boxes over to Orange to store in the garage and thank god for that because I have no idea where those boxes would be now if we hadn't had a place to move them to. Maybe we'd have put them in our storage building, but probably we just would have procrastinated packing even more.
Easter came and went with a stomach bug that wiped out half of the family and problems with an oven which resulted in the Walke family Easter being catered by Belle's and eaten in the Perry Center at the church. The kids were adorable, as usual, and enjoyed the egg hunt. I dutifully took the candy tax and they're quickly working their way through the rest, since I've declared whatever isn't eaten is being thrown away when we move.
Everyone is doing great. The kids are getting more and more excited about the move, Austin got a nice raise at work, and I'm feeling pretty happy, in spite of the stress. Having my mom dates really helps with de-stressing, both because I get to get out of the house and have adult conversations, but also because I get away from the clutter.
A couple of people have pointed out that I don't have nearly as much stuff as Mom, so the house will be somewhat empty, or at least emptyish. I reply "I know, it'll be great!" Don't worry, I'm my mother's daughter. I'll fill it up. Hopefully it'll take me 25 years.
The big happy news, though, is Rebekah. She had her cardiology appointment today to check her VSD. For those who forgot, or didn't know, she was diagnosed in the womb with a small intra-muscular ventricular septal defect (hole in the muscle tissue between her ventricles, the bottom chambers of the heart). It was one that is super common and lots of people are born with it and never know, because they close on their own as the child grows, usually by about a year old, if not sooner. It's nothing to Eden's holes, but it was so minor, the doctor wasn't concerned about the home birth and gave us the thumbs up for that (which was good since the diagnosis was at like 28 weeks or so). At her birth, no one cold detect anything. At her doctor appointments, the ped couldn't hear anything. In April of 2017, she had an echocardiogram and it was still there, but it hadn't changed in size. Still no concern, come back in a year.
Cut to today, a year later. Our regular cardiologist wasn't there, because she's changed how she does things, but the other doctor is great, too. He listened carefully to Rebekah's chest, looked at her vital signs (100% pulseox, great bp and EKG, slightly elevated heart rate, but she hated having things stuck to her) and declared that the VSD has closed.
We knew it would happen and we've had no concerns about her health any more than any normal baby, but still. It's such a relief to know that her body did what it was supposed to do and her heart is whole.
Now I just have one kid with a janky heart. But it's janky in the right ways. We don't really want that to mend itself. (It would probably kill her if it did.)
There's so much more going on. Painting the Orange street house and moving Mom and Bob and moving ourselves and finishing school and getting settled into our "new" home (is it a new house if I lived there for 10 years 15 years ago? and is also 100 years old?) and everything else. I'm sure I'm forgetting major stuff. I've got lists everywhere and still managed to forget about today's cardio appointment until yesterday afternoon when Austin asked me about it.
We'll make it. Three weeks to go.
I'm a little stressed. And tired. Ok, very tired. I have a standing Monday night "Mom Date" and last week I nearly fell asleep whenever there were those regular comfortable lulls in the conversation. I was asleep within about 15 minutes of walking in the front door.
We have packed up nearly everything we don't use on a daily, or even weekly, basis and there's lots of empty places in our house. They're balanced by the giant pile of packed and labeled boxes by the front door which is balanced by the pile of empty boxes in front of the fireplace.
I didn't used to be claustrophobic or have a huge issue with clutter but this past month I've felt on edge about stuff everywhere. We moved a ton of boxes over to Orange to store in the garage and thank god for that because I have no idea where those boxes would be now if we hadn't had a place to move them to. Maybe we'd have put them in our storage building, but probably we just would have procrastinated packing even more.
Easter came and went with a stomach bug that wiped out half of the family and problems with an oven which resulted in the Walke family Easter being catered by Belle's and eaten in the Perry Center at the church. The kids were adorable, as usual, and enjoyed the egg hunt. I dutifully took the candy tax and they're quickly working their way through the rest, since I've declared whatever isn't eaten is being thrown away when we move.
Everyone is doing great. The kids are getting more and more excited about the move, Austin got a nice raise at work, and I'm feeling pretty happy, in spite of the stress. Having my mom dates really helps with de-stressing, both because I get to get out of the house and have adult conversations, but also because I get away from the clutter.
A couple of people have pointed out that I don't have nearly as much stuff as Mom, so the house will be somewhat empty, or at least emptyish. I reply "I know, it'll be great!" Don't worry, I'm my mother's daughter. I'll fill it up. Hopefully it'll take me 25 years.
The big happy news, though, is Rebekah. She had her cardiology appointment today to check her VSD. For those who forgot, or didn't know, she was diagnosed in the womb with a small intra-muscular ventricular septal defect (hole in the muscle tissue between her ventricles, the bottom chambers of the heart). It was one that is super common and lots of people are born with it and never know, because they close on their own as the child grows, usually by about a year old, if not sooner. It's nothing to Eden's holes, but it was so minor, the doctor wasn't concerned about the home birth and gave us the thumbs up for that (which was good since the diagnosis was at like 28 weeks or so). At her birth, no one cold detect anything. At her doctor appointments, the ped couldn't hear anything. In April of 2017, she had an echocardiogram and it was still there, but it hadn't changed in size. Still no concern, come back in a year.
Cut to today, a year later. Our regular cardiologist wasn't there, because she's changed how she does things, but the other doctor is great, too. He listened carefully to Rebekah's chest, looked at her vital signs (100% pulseox, great bp and EKG, slightly elevated heart rate, but she hated having things stuck to her) and declared that the VSD has closed.
We knew it would happen and we've had no concerns about her health any more than any normal baby, but still. It's such a relief to know that her body did what it was supposed to do and her heart is whole.
Now I just have one kid with a janky heart. But it's janky in the right ways. We don't really want that to mend itself. (It would probably kill her if it did.)
There's so much more going on. Painting the Orange street house and moving Mom and Bob and moving ourselves and finishing school and getting settled into our "new" home (is it a new house if I lived there for 10 years 15 years ago? and is also 100 years old?) and everything else. I'm sure I'm forgetting major stuff. I've got lists everywhere and still managed to forget about today's cardio appointment until yesterday afternoon when Austin asked me about it.
We'll make it. Three weeks to go.
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