Monday, October 27, 2014
The things I'm supposed to do
Here are all those pictures of Reese I'm supposed to take. I forgot to take the ones with the 6-month sticker. It happens.
That's all I can muster up at this point. The facts will come soon, but for now, just enjoy the pics. I love that you can see her personality emerging over the last few months just in these pictures. Hmmm, too bad I don't have any 6-month pictures because she is REALLY coming into her personality!
So many days late and dollars short!
I'm sure that many of you think that I have given up posting on the blog. Of course you do, given that my last post was June 12.
The truth is, I have been forced to give up (or at least delay) quite a few things that have been important to me, one of them being the blog. I gave these things up with only 50% enthusiasm...the other 50% emotion was disappointment. I felt (and still feel) as though I was letting a lot of people down, including myself. But I also felt that before letting go of a few things, I was letting down my children and husband. I will never get these days back with my kids, and I didn't want them to remember me as being stressed (this might be unavoidable) and as a mother who put other activities ahead of the meaningful time we have together as a family.
The one thing I have been forced to give up that I would do anything in the world to get back is my darling Holly. She understands my soul like no one does. I've known her longer than Russell...so she understands the reasons I feel and think the ways that I do. She has held my hand, literally and figuratively, through the most difficult times of my life. She has also been with me during the most joyous times of my life. I can say anything without having to explain myself.
Why did I "lose" her? Because she made a similar, yet much bigger and life-changing, decision as I did. Her family came first. She and her husband, Kenny, want their children to grow up around as much of their immediate family as possible, and that just wasn't happening here in Greenville. They and Holly's parents made the decision to sell their homes in Greenville and Wingate, NC and move to Oklahoma. Kenny's parents, sister and brother-in-law, niece, and brother all live in Tulsa.
It sounds crazy, doesn't it? Most people think it is. But Holly didn't need to explain it to me. And I almost got a little offended and defensive when people tried to approach ME about the craziness of it. Ok, not a little. I got WAY defensive because I'll not have anyone second-guessing Holly's decisions. (So now I sound like the crazy one, huh?) What I wanted to say to these people: "Back off of Holly, FIRST OF ALL. Second of all, I will try my best not to belittle you when I explain to you that she and Kenny will do anything to raise their children in the most supporting, loving way possible, and I'm stunned that you don't get that since you have kids..." Instead, I said, "I know, it's so sad, isn't it? But family is absolutely the most important thing to them, and they want their kids to grow up with all their grandparents around, even if it means uprooting the lives they have here." Holly and Kenny were sad to leave, too. We cried many tears but then tried not to talk about the move very much. They had A LOT of goodbyes to say, and they said them all, somehow.
I actually just started to type that Holly and I one last hurrah, but duh. That's totally inaccurate. It was just one of our many adventures together that happened to signify the end of her life in Greenville and the beginning of her life in Tulsa. I drove out to Tulsa with Holly and her two girls while Kenny and two of his friends drove out together (much more quickly, sans kids). It was not the nightmare trip most of you are imagining, but I admit that I, personally, was about to just walk the last couple of hours. By that point, I was over it. So I can't believe how great her girls were. Not true, yes I can. Because they're awesome. Easiest kids ever. And worst kids to leave behind. The background on my work computer is a picture of Elsie holding Caroline right after Caroline was born in October 2013. Because most people know that I have an older daughter and a newish (that's newish, not Jewish) baby, there have been many assumptions that those two girls are mine. I see mine in person every day. And now I get to see Elsie and Caroline every day, too, just not in person. So here are some oddities/funnities from our trip at the end of June:
The Praying Hands. I can't even. I have no way to explain these, so I'll let others do the talking:
"These mighty haymakers stand 60 feet high and weigh 30 tons, the largest bronze sculpture in the world. One would like to imagine that they are strong, American hands, but evangelist Oral Roberts outsourced their casting to Juarez, Mexico in 1980.
The hands were originally called "The Healing Hands" and they stood in front of Oral's "City of Faith," a medical center devoted to faith healing. But the City of Faith wound up on the short end of a series of lawsuits and declared bankruptcy in 1989. The hands were then moved to the entrance drive of the university."
Also, this weird guy...in someone else's words:
"At one time, Tulsa, Oklahoma sat atop the world's largest-known ocean of oil. Drilling derricks were everywhere, even on the lawn of the state capitol. The city called itself "Oil Capital of the World."
But Tulsa did not build Tulsa's giant oil man. It was built by an oilfield supply company out of Texas, which set him up in 1953 for a trade show at the Tulsa State Fairgrounds. Dubbed "The Golden Driller"...The statue proved so popular that the Texas company returned six years later with a second temporary giant. A third giant, tallest of all at 76 feet, took up permanent residence at the Fairgrounds in 1966. This version still stands today. He's very different from the original Golden Driller, with a slender waist, muscles ripped on a bare chest, mustard-colored rather than gold, and a face that's a chiseled mask of Teutonic invincibility...the statue was declared Oklahoma's official state monument.
The Golden Driller is still the tallest free-standing statue in the U.S. He's so high that he rests his gloved right hand on a real Oklahoma oil derrick. Built of steel and concrete, he weighs nearly 22 tons and is expected to survive 200 mph tornadoes. The plaque at his base dedicates him "to the men of the petroleum industry who by their vision and daring have created from God's abundance a better life for mankind." There isn't much room between the Golden Driller and the parking lot, which means that visitors have to stand near his big boots, enjoying a heads-up view that is both steep and startling. To show how much Tulsa loves its mega-roughneck, in 2011 it gave the Golden Driller a thorough inspection (which found him to be in excellent shape), and coated him with a new layer of state-of-the-art mustard paint, which its suppliers said will last 100 years."
Please note that I am standing at the bottom of these enormous structures so that you can get an idea of how HUUUGE these things are! Sorry, Texas, but everything is actually bigger in Oklahoma.
Last "interesting" thing in Tulsa - these 3 buildings called the CityPlex Towers built by Oral Roberts University. The rumor was that one of them was the height of Noah's ark if you stood it on its end, one was the width, and one was the depth. Apparently, this isn't true but makes for a great story. Oral Roberts intended to build a hospital, and "according to a fundraising letter, on May 25, 1980 Roberts prayed for guidance in front of the unfinished hospital. Roberts envisioned a 900-foot Jesus encouraged him to continue the project. Jesus said according to Roberts 'I told you I would speak to your 'partners', and through them I will build it'. Roberts described the vision: "when I opened my eyes, there He stood... some 900 feet tall, looking at me; His eyes.... Oh! His eyes! He stood a full 300 feet taller than the 600 foot tall City of Faith. However his opponents were skeptical and suggested that Roberts imagined the vision. He raised the funds by appealing to his partners, by revealing inspiration from God instructing them how to finance the project. In a fundraising letter, Roberts instructed that if they pledge funds in multiples of $7, $77, $777 then God would bless them abundantly." The hospital lasted for 8 years and then went bankrupt. The CityPlex is now office space.
But now, the most interesting thing in Oklahoma is the Sharps. It's only a matter of time before everyone else out there comes to realize that fact.
So now in October, we will trick-or-treat for the first time in a few years without the Sharps. I volunteered and shopped at the Switcharoos consignment sale in August for the first time without Holly. We will attend the Young Life banquet without the Sharps being there. Our lives move on, but we already have all kinds of new adventures planned. The Sharps will be at the beach when we will each summer since Holly's parents kept their beach house. Holly and I will be going to New York together this Memorial Day (note: book flights). I am enjoying the decisions that I have made to be with my family more, and Holly is as well...no regrets for either of us. That being said, we still have those nagging little sorrows that sometimes are just a part of living a bigger life of love.
But don't despair - I haven't given up on the blog. I will play catch-up. I will post the amazing things that are happening in our lives, even if none of you are really keeping up the blog anymore. Every year, I publish the last year's blog postings in a book, so this life we live will be documented for all of us to look back on and enjoy, hopefully in many times spent together as a family.
The truth is, I have been forced to give up (or at least delay) quite a few things that have been important to me, one of them being the blog. I gave these things up with only 50% enthusiasm...the other 50% emotion was disappointment. I felt (and still feel) as though I was letting a lot of people down, including myself. But I also felt that before letting go of a few things, I was letting down my children and husband. I will never get these days back with my kids, and I didn't want them to remember me as being stressed (this might be unavoidable) and as a mother who put other activities ahead of the meaningful time we have together as a family.
The one thing I have been forced to give up that I would do anything in the world to get back is my darling Holly. She understands my soul like no one does. I've known her longer than Russell...so she understands the reasons I feel and think the ways that I do. She has held my hand, literally and figuratively, through the most difficult times of my life. She has also been with me during the most joyous times of my life. I can say anything without having to explain myself.
Why did I "lose" her? Because she made a similar, yet much bigger and life-changing, decision as I did. Her family came first. She and her husband, Kenny, want their children to grow up around as much of their immediate family as possible, and that just wasn't happening here in Greenville. They and Holly's parents made the decision to sell their homes in Greenville and Wingate, NC and move to Oklahoma. Kenny's parents, sister and brother-in-law, niece, and brother all live in Tulsa.
It sounds crazy, doesn't it? Most people think it is. But Holly didn't need to explain it to me. And I almost got a little offended and defensive when people tried to approach ME about the craziness of it. Ok, not a little. I got WAY defensive because I'll not have anyone second-guessing Holly's decisions. (So now I sound like the crazy one, huh?) What I wanted to say to these people: "Back off of Holly, FIRST OF ALL. Second of all, I will try my best not to belittle you when I explain to you that she and Kenny will do anything to raise their children in the most supporting, loving way possible, and I'm stunned that you don't get that since you have kids..." Instead, I said, "I know, it's so sad, isn't it? But family is absolutely the most important thing to them, and they want their kids to grow up with all their grandparents around, even if it means uprooting the lives they have here." Holly and Kenny were sad to leave, too. We cried many tears but then tried not to talk about the move very much. They had A LOT of goodbyes to say, and they said them all, somehow.
I actually just started to type that Holly and I one last hurrah, but duh. That's totally inaccurate. It was just one of our many adventures together that happened to signify the end of her life in Greenville and the beginning of her life in Tulsa. I drove out to Tulsa with Holly and her two girls while Kenny and two of his friends drove out together (much more quickly, sans kids). It was not the nightmare trip most of you are imagining, but I admit that I, personally, was about to just walk the last couple of hours. By that point, I was over it. So I can't believe how great her girls were. Not true, yes I can. Because they're awesome. Easiest kids ever. And worst kids to leave behind. The background on my work computer is a picture of Elsie holding Caroline right after Caroline was born in October 2013. Because most people know that I have an older daughter and a newish (that's newish, not Jewish) baby, there have been many assumptions that those two girls are mine. I see mine in person every day. And now I get to see Elsie and Caroline every day, too, just not in person. So here are some oddities/funnities from our trip at the end of June:
The Praying Hands. I can't even. I have no way to explain these, so I'll let others do the talking:
"These mighty haymakers stand 60 feet high and weigh 30 tons, the largest bronze sculpture in the world. One would like to imagine that they are strong, American hands, but evangelist Oral Roberts outsourced their casting to Juarez, Mexico in 1980.
The hands were originally called "The Healing Hands" and they stood in front of Oral's "City of Faith," a medical center devoted to faith healing. But the City of Faith wound up on the short end of a series of lawsuits and declared bankruptcy in 1989. The hands were then moved to the entrance drive of the university."
Also, this weird guy...in someone else's words:
"At one time, Tulsa, Oklahoma sat atop the world's largest-known ocean of oil. Drilling derricks were everywhere, even on the lawn of the state capitol. The city called itself "Oil Capital of the World."
But Tulsa did not build Tulsa's giant oil man. It was built by an oilfield supply company out of Texas, which set him up in 1953 for a trade show at the Tulsa State Fairgrounds. Dubbed "The Golden Driller"...The statue proved so popular that the Texas company returned six years later with a second temporary giant. A third giant, tallest of all at 76 feet, took up permanent residence at the Fairgrounds in 1966. This version still stands today. He's very different from the original Golden Driller, with a slender waist, muscles ripped on a bare chest, mustard-colored rather than gold, and a face that's a chiseled mask of Teutonic invincibility...the statue was declared Oklahoma's official state monument.
The Golden Driller is still the tallest free-standing statue in the U.S. He's so high that he rests his gloved right hand on a real Oklahoma oil derrick. Built of steel and concrete, he weighs nearly 22 tons and is expected to survive 200 mph tornadoes. The plaque at his base dedicates him "to the men of the petroleum industry who by their vision and daring have created from God's abundance a better life for mankind." There isn't much room between the Golden Driller and the parking lot, which means that visitors have to stand near his big boots, enjoying a heads-up view that is both steep and startling. To show how much Tulsa loves its mega-roughneck, in 2011 it gave the Golden Driller a thorough inspection (which found him to be in excellent shape), and coated him with a new layer of state-of-the-art mustard paint, which its suppliers said will last 100 years."
Last "interesting" thing in Tulsa - these 3 buildings called the CityPlex Towers built by Oral Roberts University. The rumor was that one of them was the height of Noah's ark if you stood it on its end, one was the width, and one was the depth. Apparently, this isn't true but makes for a great story. Oral Roberts intended to build a hospital, and "according to a fundraising letter, on May 25, 1980 Roberts prayed for guidance in front of the unfinished hospital. Roberts envisioned a 900-foot Jesus encouraged him to continue the project. Jesus said according to Roberts 'I told you I would speak to your 'partners', and through them I will build it'. Roberts described the vision: "when I opened my eyes, there He stood... some 900 feet tall, looking at me; His eyes.... Oh! His eyes! He stood a full 300 feet taller than the 600 foot tall City of Faith. However his opponents were skeptical and suggested that Roberts imagined the vision. He raised the funds by appealing to his partners, by revealing inspiration from God instructing them how to finance the project. In a fundraising letter, Roberts instructed that if they pledge funds in multiples of $7, $77, $777 then God would bless them abundantly." The hospital lasted for 8 years and then went bankrupt. The CityPlex is now office space.
But now, the most interesting thing in Oklahoma is the Sharps. It's only a matter of time before everyone else out there comes to realize that fact.
So now in October, we will trick-or-treat for the first time in a few years without the Sharps. I volunteered and shopped at the Switcharoos consignment sale in August for the first time without Holly. We will attend the Young Life banquet without the Sharps being there. Our lives move on, but we already have all kinds of new adventures planned. The Sharps will be at the beach when we will each summer since Holly's parents kept their beach house. Holly and I will be going to New York together this Memorial Day (note: book flights). I am enjoying the decisions that I have made to be with my family more, and Holly is as well...no regrets for either of us. That being said, we still have those nagging little sorrows that sometimes are just a part of living a bigger life of love.
But don't despair - I haven't given up on the blog. I will play catch-up. I will post the amazing things that are happening in our lives, even if none of you are really keeping up the blog anymore. Every year, I publish the last year's blog postings in a book, so this life we live will be documented for all of us to look back on and enjoy, hopefully in many times spent together as a family.
Thursday, June 12, 2014
It occurred to me...
...that God has been doing something with Emma I didn't quite recognize.
We have heard for a couple years now that kids in Emma's classes at school and at church just love Emma. They want to help her and play with her, and they pray for her during their nighttime prayers. We have always wondered if Emma is nice to other kids and if she talks to them a lot - we don't hear her have much interaction with them, but we also haven't been with in her classrooms, either.
In the last couple of months, Emma has come out of her shell big time. And she's hilarious. We continue to hear that other children love Emma. We've been hearing it more, actually. And seeing these pictures sent to me from her daily summer camp at our church, I realized something...God is blessing this sweet child of ours with a personality that draws kids to her. Because she can't walk, kids come to her. She asks/tells them to come play with her, and they willingly go. And if she takes off in her wheelchair, they follow.
Four square:
Water day:
I remember a high school soccer game recently when kids were running around Emma, and she was having a blast with them, laughing, even hugging them.
At a 4-year-old friend's birthday party recently, the birthday girl's 7-year-old sister drew Emma a picture that included Emma in her wheelchair, with a note across the top that said, "I love you, Emma!" Emma had never ever met this girl before.
At a party this past weekend, Emma invited herself to spend the night with a family she did not know, along with another boy she did not know. I couldn't believe it. Obviously, she didn't spend the night with them, but who is this child, and what did she do with my shy daughter? She actually approaches other kids now and asks them their names. At this same party, she didn't. watch. tv. (her favorite pastime). Instead, she engaged the other kids who weren't that interested in tv, either. It was miraculous and so heart-warming.
So God is teaching our child to be patient, kind, outgoing, fun, and funny so that other kids are drawn to her and want to play with her. Since Emma can't necessarily do all the things that other kids do and go to where they are, He's making sure that other kids want to come to where she is.
There is no better feeling than seeing God love your child.
We have heard for a couple years now that kids in Emma's classes at school and at church just love Emma. They want to help her and play with her, and they pray for her during their nighttime prayers. We have always wondered if Emma is nice to other kids and if she talks to them a lot - we don't hear her have much interaction with them, but we also haven't been with in her classrooms, either.
In the last couple of months, Emma has come out of her shell big time. And she's hilarious. We continue to hear that other children love Emma. We've been hearing it more, actually. And seeing these pictures sent to me from her daily summer camp at our church, I realized something...God is blessing this sweet child of ours with a personality that draws kids to her. Because she can't walk, kids come to her. She asks/tells them to come play with her, and they willingly go. And if she takes off in her wheelchair, they follow.
Four square:
Water day:
I remember a high school soccer game recently when kids were running around Emma, and she was having a blast with them, laughing, even hugging them.
At a 4-year-old friend's birthday party recently, the birthday girl's 7-year-old sister drew Emma a picture that included Emma in her wheelchair, with a note across the top that said, "I love you, Emma!" Emma had never ever met this girl before.
At a party this past weekend, Emma invited herself to spend the night with a family she did not know, along with another boy she did not know. I couldn't believe it. Obviously, she didn't spend the night with them, but who is this child, and what did she do with my shy daughter? She actually approaches other kids now and asks them their names. At this same party, she didn't. watch. tv. (her favorite pastime). Instead, she engaged the other kids who weren't that interested in tv, either. It was miraculous and so heart-warming.
So God is teaching our child to be patient, kind, outgoing, fun, and funny so that other kids are drawn to her and want to play with her. Since Emma can't necessarily do all the things that other kids do and go to where they are, He's making sure that other kids want to come to where she is.
There is no better feeling than seeing God love your child.
Thursday, June 5, 2014
It finally happened
A while back (no idea how long "a while" is), I posted that I have a fear of that moment when Emma realizes that she is different...and doesn't like that she is different. It happened tonight.
Emma has central sleep apnea, so she sleeps with a bipap mask. Today she saw her sleep specialist to hear about the results of her most recent sleep study. Side note: no major changes. The doctor did give us a new mask to try on Emma because the one she has puts more pressure on her forehead, and he doesn't like that it could slowly change the shape of her forehead bone(s?). Because, you know, we don't have enough to worry about.
Anyway, Russell tried the new mask on Emma way before bedtime, just to see how it would do, and she was sooooo upset about it. She hates the mask anyway (and why wouldn't she?), so putting on a new one when she wasn't going to bed wasn't her idea of a good time. And then she said several...I mean SEVERAL...times that she wanted to be plain.
I wanna be plain Emma. I just wanna be plain. I just wanna be plain Emma. I wanna be plain.
Over and over and over, through cries and sobs.
After very gentle questioning, I got her to tell me that she wanted to sleep plain. No mask. Just plain. She wants to be plain Emma.
What is plain Emma? No bipap mask, no "shield" (scoliosis brace), no nightly bowel program, no diaper changes for a 4-year-old, no AFO's, no twister cables, no eye patch, no glasses, no Miralax, no weight management, no crawling, no wheelchair, no stander, no physical therapy, no occupational therapy, no inability to swim, run, walk, or stand alone, no choking on her own spit, no daily vitamins, no sensitive gag reflex, no daily antibiotic, no daily fish oil, no relying on anyone to get in and out of the car, no fear of falling, no avoidance of stairs or curbs, no shunt, no surgeries, no MRI's, no neurosurgeon, no sleep specialist, no orthopedists, no urologist, no therapists, no nurses, no sleep studies, no scoliosis.
Of all these things listed above, Emma has only become aware of how different she is in one aspect: the mask. The rest of it will come.
Can I be honest? I want her to be plain Emma, too. Emma is extraordinary in spiritual and emotional ways, and she always will be. But my heart aches for the times now and in the future when all she ever wants is to be plain. If you're reading this, take a moment sometime today to thank God for making you plain. And if you're not plain, thank Him for the people who are, who take care of you. You see, we give God the glory whether we are plain or not: we should either be thankful that we can help the ones we love with our own abilities....or thankful that there are those will help us when we're not plain ourselves.
Emma has central sleep apnea, so she sleeps with a bipap mask. Today she saw her sleep specialist to hear about the results of her most recent sleep study. Side note: no major changes. The doctor did give us a new mask to try on Emma because the one she has puts more pressure on her forehead, and he doesn't like that it could slowly change the shape of her forehead bone(s?). Because, you know, we don't have enough to worry about.
Anyway, Russell tried the new mask on Emma way before bedtime, just to see how it would do, and she was sooooo upset about it. She hates the mask anyway (and why wouldn't she?), so putting on a new one when she wasn't going to bed wasn't her idea of a good time. And then she said several...I mean SEVERAL...times that she wanted to be plain.
I wanna be plain Emma. I just wanna be plain. I just wanna be plain Emma. I wanna be plain.
Over and over and over, through cries and sobs.
After very gentle questioning, I got her to tell me that she wanted to sleep plain. No mask. Just plain. She wants to be plain Emma.
What is plain Emma? No bipap mask, no "shield" (scoliosis brace), no nightly bowel program, no diaper changes for a 4-year-old, no AFO's, no twister cables, no eye patch, no glasses, no Miralax, no weight management, no crawling, no wheelchair, no stander, no physical therapy, no occupational therapy, no inability to swim, run, walk, or stand alone, no choking on her own spit, no daily vitamins, no sensitive gag reflex, no daily antibiotic, no daily fish oil, no relying on anyone to get in and out of the car, no fear of falling, no avoidance of stairs or curbs, no shunt, no surgeries, no MRI's, no neurosurgeon, no sleep specialist, no orthopedists, no urologist, no therapists, no nurses, no sleep studies, no scoliosis.
Of all these things listed above, Emma has only become aware of how different she is in one aspect: the mask. The rest of it will come.
Can I be honest? I want her to be plain Emma, too. Emma is extraordinary in spiritual and emotional ways, and she always will be. But my heart aches for the times now and in the future when all she ever wants is to be plain. If you're reading this, take a moment sometime today to thank God for making you plain. And if you're not plain, thank Him for the people who are, who take care of you. You see, we give God the glory whether we are plain or not: we should either be thankful that we can help the ones we love with our own abilities....or thankful that there are those will help us when we're not plain ourselves.
Two months, come and gone
So Reese is almost 3 months old, and I'm just now posting about her being 2 months old. It happens. I DID get the 2-month picture, just haven't blogged about anything. And since I'm so far behind on the 2-month update, you can probably guess that I'm not organized enough to know exactly what stats I'm supposed to be listing here. So I'll just go with some basics:
- Easing her way out of newborn clothes, but not really full-blown 3-month clothes
- Long and lean: at 10 1/2 weeks, she was 11 lb 2 oz (30-something percentile) and 23 inches long (80-something percentile)
- Still sleeping through the night (like, 10 hours), with or without a dream feed at 10ish, but we still give her the dream feed anyway...why take a chance?
- Graduated from newborn diapers to size 1's at about 9 weeks old because her hiney and waist are so narrow
- Started daycare this week and has had an excellent week!
- Is getting more into a swaddle-binky-mobile pattern to fall asleep in her crib and doesn't need us to rock her. Bedtime gets a little easier every night!
- Gets nosier every day - wants to be walked around, facing out so she can see what we see.
- Tolerates a wet diaper for about 1 second, and she makes sure you fully understand her discomfort
- Smiles a lot more at us and, recently, her crib mobile
- Finally growing some hair on the top of her head, and she loves to have her head rubbed
Wednesday, May 14, 2014
Post-op MRI results
A few weeks ago, Emma had a post-op MRI to compare to the one she had before all her big surgeries in January. We got the results from Dr. Troup this week. He feels that everything looks improved, and he was overall very pleased. Emma will go back for another MRI in 6 months, which will be 10 months after the surgery.
One disappointing thing about this visit is that, much to Dr. Troup's surprise, Emma's choking has been getting worse. Well, Russell thinks it's the same, but my mom and I think it's worse. And we're the ones with her all day, so we must be right...right? :) The severity of her episodes isn't worse, but the frequency definitely is. So disappointing. But who knows, maybe she has a little allergy drainage or something irritating her this time of year?
Emma also had another sleep study, and the results from it were positive as well. Her central apnea has improved, but it's still in the severe range. Not the best news, but I feel like we're due for at least a little good news with Emma's health.
Ok, enough about the medical stuff - pictures? Yes?
My girls
When Reese began rolling over at 4 weeks old (yep, 4 weeks) she really enjoyed it most in her crib. Well Emma decided that she and Reese both should roll over in the crib together. At the end of the video, Reese doesn't seem thrilled about this idea, so Emma tries to make her feel a little better.
And here's Reese rolling over REALLY early:
My mom, Emma, and Reese in their (coincidental) yellow attire - time for spring!
And here's Reese rolling over REALLY early:
My mom, Emma, and Reese in their (coincidental) yellow attire - time for spring!
Miss Emma - time for an update
I described in my last post how things are going for Emma with a new baby sister. And I'll leave it at that - time for a post dedicated to Emma.
She is thoroughly enjoying her new school. Finally. They sing all the time, and Emma comes home singing and doing all the motions. She will burst into spontaneous song and dance in the car, too - precious. She has learned how to write her name and really enjoys practicing her writing.
As for her surgery recovery, we still have not seen any improvements in her symptoms. A couple interesting things happened this morning, though. I have had my doubts about the orthopedist she sees at Shriner's - they basically missed her scoliosis at one visit and then had a very strong reaction to how bad it was at the next one. I asked why it had gotten so much worse by the second visit to see if he would be truthful with me...and he was. He basically told me they whiffed on the first one.
Even before that scoliosis debacle, we have been visiting another orthopedist for a second opinion. Boy am I glad we see him. This morning was a routine visit with doc #2, and when I expressed my frustrations about the scoliosis to him again, he decided to take some quick x-rays of Emma himself. Since Emma can't stand up, her x-rays at Shriner's had to be taken sitting with her back against a wall. Russell went back with Emma today, so I'm not sure how they accomplished it, but they got her x-rays today of Emma standing. Think about your own posture - aren't you more slouched and curvy when you sit? Duh. You need to be standing for a spine x-ray. So the orthopedist today told us that her scoliosis isn't as bad as we were led to believe it was. Instead of her spinal curve being 50-something degrees, he estimates it's actually closer to 30-something degrees. Still there, just not as bad. So what does that mean?
There's a surgery being done for kids with scoliosis that helps slowly straighten the spine through periodic adjustments to some implanted "ribs." It's called a VEPTR. Sorry to be rude and blunt, but you can look it up if you want. It's too much for me to go into right now. Anyway, if Emma is a good candidate for this procedure in the future, it won't be as intense or long-lasting if the scoliosis starts out at a milder level.
The other thing we found isn't as great. Emma had follow-up MRI's a couple weeks ago to provide comparative films to those taken in December. Dr. Troup will look at them and tell us what he thinks about the results of the surgeries. We haven't seen him yet, but since all these doctors are in the Greenville Health System, they can pull up anything in a patient's records. The orthopedist this morning pulled up the MRI's and told us what the radiologist's notes said. Cervical MRI (neck) - no change. Thoracic MRI (mid-back) - no change. Here's where I stopped him. No change? Does that mean the syrinx that was drained has already filled back up again? After more careful reading of the notes, the doctor confirmed that that's what the radiologist's notes say. He quickly abandoned the reading of the MRI's with a comment about Dr. Troup being the best at reading them, and we just moved on. Sigh.
If the syrinx fills up on its own, that means that we'll be looking at ANOTHER surgery. This one will involve putting a shunt on her spine to constantly drain the syrinx. I haven't looked into the specifics of this surgery yet, though - no need to worry about it now.
Ok, now for some fun stuff.
Being pampered at the salon:
Clemson baseball game:
Easter:
She is thoroughly enjoying her new school. Finally. They sing all the time, and Emma comes home singing and doing all the motions. She will burst into spontaneous song and dance in the car, too - precious. She has learned how to write her name and really enjoys practicing her writing.
As for her surgery recovery, we still have not seen any improvements in her symptoms. A couple interesting things happened this morning, though. I have had my doubts about the orthopedist she sees at Shriner's - they basically missed her scoliosis at one visit and then had a very strong reaction to how bad it was at the next one. I asked why it had gotten so much worse by the second visit to see if he would be truthful with me...and he was. He basically told me they whiffed on the first one.
Even before that scoliosis debacle, we have been visiting another orthopedist for a second opinion. Boy am I glad we see him. This morning was a routine visit with doc #2, and when I expressed my frustrations about the scoliosis to him again, he decided to take some quick x-rays of Emma himself. Since Emma can't stand up, her x-rays at Shriner's had to be taken sitting with her back against a wall. Russell went back with Emma today, so I'm not sure how they accomplished it, but they got her x-rays today of Emma standing. Think about your own posture - aren't you more slouched and curvy when you sit? Duh. You need to be standing for a spine x-ray. So the orthopedist today told us that her scoliosis isn't as bad as we were led to believe it was. Instead of her spinal curve being 50-something degrees, he estimates it's actually closer to 30-something degrees. Still there, just not as bad. So what does that mean?
There's a surgery being done for kids with scoliosis that helps slowly straighten the spine through periodic adjustments to some implanted "ribs." It's called a VEPTR. Sorry to be rude and blunt, but you can look it up if you want. It's too much for me to go into right now. Anyway, if Emma is a good candidate for this procedure in the future, it won't be as intense or long-lasting if the scoliosis starts out at a milder level.
The other thing we found isn't as great. Emma had follow-up MRI's a couple weeks ago to provide comparative films to those taken in December. Dr. Troup will look at them and tell us what he thinks about the results of the surgeries. We haven't seen him yet, but since all these doctors are in the Greenville Health System, they can pull up anything in a patient's records. The orthopedist this morning pulled up the MRI's and told us what the radiologist's notes said. Cervical MRI (neck) - no change. Thoracic MRI (mid-back) - no change. Here's where I stopped him. No change? Does that mean the syrinx that was drained has already filled back up again? After more careful reading of the notes, the doctor confirmed that that's what the radiologist's notes say. He quickly abandoned the reading of the MRI's with a comment about Dr. Troup being the best at reading them, and we just moved on. Sigh.
If the syrinx fills up on its own, that means that we'll be looking at ANOTHER surgery. This one will involve putting a shunt on her spine to constantly drain the syrinx. I haven't looked into the specifics of this surgery yet, though - no need to worry about it now.
Ok, now for some fun stuff.
Being pampered at the salon:
Clemson baseball game:
Easter:
One month...a little late
We're back. Reese is napping, and I'm taking a minute to blog. Phew. Time sure has flown by, and I'm behind on everything - blogging, thank-you-note-writing, birth-announcement-addressing, exercising (Ha. Priorities.)
Reese, however, is not behind - at her one-month checkup, she was 8 lbs, 5.5 oz and 21 inches long. She is in the 74th percentile for her height and 20-something percentile for her weight. At 6 weeks, she is STILL wearing newborn diapers and preemie pants, but she is definitely growing. She started sleeping through the night at 5 and a half weeks old...fluke? Maybe...but it's been 8 nights in a row, with the exception of one.
Here are the obligatory one-month shots, including one when Lola got jealous and Reese's facial expression seems to say, "Figures. The dog needs attention, as always."
For certain bottles, Reese is incredibly active afterwards - arms and legs flailing constantly. She loves to be on her back for those little intervals and gets pretty mad when she's held or restrained. If this happens at a restaurant, we put her on her memory foam changing pad on the table and let her go to town. Don't judge. You don't know. Notice the blur in this photo? Because she won't sit still:
And other times, she's completely milk drunk. Comatose, even.
And burping her when she's like this? Forget it. Sometimes it makes feeding her take FOR. EV. ER.
My mom was really great about saving some of the special things from my childhood, and this is one of them - the gown I wore home from the hospital. Reese is almost too long for it, so I'm glad she was able to wear it a few times.
That last picture above was the first smile I've gotten on camera. Reese started smiling around 5 weeks, and she's still not super generous with them, but we get about one a day. I also got her first bath on camera. It wasn't a happy time, but I managed to get a few shots before the real screams started.
Like most babies, Reese has a witching hour. It's later than most babies, around 7:00 or so. Some nights are agonizing for all of us, including Emma.
Speaking of Emma, she isn't crazy about touching Reese. I think she's scared to hold her or touch her. But she does NOT like it when Reese is upset. Emma will talk to Reese when she thinks we're not listening. Things like, "Close your eyes and take a nap. Just take a nap. It's the rules." Yep. It's the rules. I have no idea where that came from. She brings Reese toys - Reese's toys, NOT Emma's toys, and Emma thinks that Reese prefers the purple binkies over the pink ones. Emma has pink binkies for when she wants to sleep in the car...Emma is so particular. Pink is for Emma, purple is for Reese. Reese has her own toys, Emma has her own toys. Sharing might be an issue in our house.
That's a good little summary of where we stand with Reese. Next post - Emma!
Reese, however, is not behind - at her one-month checkup, she was 8 lbs, 5.5 oz and 21 inches long. She is in the 74th percentile for her height and 20-something percentile for her weight. At 6 weeks, she is STILL wearing newborn diapers and preemie pants, but she is definitely growing. She started sleeping through the night at 5 and a half weeks old...fluke? Maybe...but it's been 8 nights in a row, with the exception of one.
Here are the obligatory one-month shots, including one when Lola got jealous and Reese's facial expression seems to say, "Figures. The dog needs attention, as always."
For certain bottles, Reese is incredibly active afterwards - arms and legs flailing constantly. She loves to be on her back for those little intervals and gets pretty mad when she's held or restrained. If this happens at a restaurant, we put her on her memory foam changing pad on the table and let her go to town. Don't judge. You don't know. Notice the blur in this photo? Because she won't sit still:
And other times, she's completely milk drunk. Comatose, even.
And burping her when she's like this? Forget it. Sometimes it makes feeding her take FOR. EV. ER.
My mom was really great about saving some of the special things from my childhood, and this is one of them - the gown I wore home from the hospital. Reese is almost too long for it, so I'm glad she was able to wear it a few times.
That last picture above was the first smile I've gotten on camera. Reese started smiling around 5 weeks, and she's still not super generous with them, but we get about one a day. I also got her first bath on camera. It wasn't a happy time, but I managed to get a few shots before the real screams started.
Like most babies, Reese has a witching hour. It's later than most babies, around 7:00 or so. Some nights are agonizing for all of us, including Emma.
Speaking of Emma, she isn't crazy about touching Reese. I think she's scared to hold her or touch her. But she does NOT like it when Reese is upset. Emma will talk to Reese when she thinks we're not listening. Things like, "Close your eyes and take a nap. Just take a nap. It's the rules." Yep. It's the rules. I have no idea where that came from. She brings Reese toys - Reese's toys, NOT Emma's toys, and Emma thinks that Reese prefers the purple binkies over the pink ones. Emma has pink binkies for when she wants to sleep in the car...Emma is so particular. Pink is for Emma, purple is for Reese. Reese has her own toys, Emma has her own toys. Sharing might be an issue in our house.
That's a good little summary of where we stand with Reese. Next post - Emma!
Saturday, March 29, 2014
What we do
Reese and I were discharged from the hospital last Sunday, March 23, and we have pretty much been doing the same thing every day and every night. Throw in some appointments and errands to run, but still basically the same thing every day...and we couldn't be more grateful. We feed Reese on a schedule, and she even wakes up to that schedule at only 10 days old. And at nighttime, she goes right back to sleep. Glorious, I tell you.
So here's what we do:
Sleep, in varying positions, in varying places, but usually in the pack 'n play:
Stare:
Swing:
Snuggle:
Eat, sometimes loudly (but still turn up your volume):
I love this little girl so much.
Tonight, Emma kissed Reese for the first time. It was awesome, and I thought my heart would explode. The only thing that doesn't make me infinitely happy right now is the fact that I can't pick up Emma yet. She often says, "Mommy, I want to hold you," which in Emma-speak means she wants ME to hold HER. And I can't. But we did take a nap together the other day, and her snuggles and hugs reminded me that she will always want me to hold her, no matter how much I hold Reese.
So here's what we do:
Sleep, in varying positions, in varying places, but usually in the pack 'n play:
Stare:
Swing:
Snuggle:
This is my dad's football-playing, man-handling hand:
Eat, sometimes loudly (but still turn up your volume):
I love this little girl so much.
Tonight, Emma kissed Reese for the first time. It was awesome, and I thought my heart would explode. The only thing that doesn't make me infinitely happy right now is the fact that I can't pick up Emma yet. She often says, "Mommy, I want to hold you," which in Emma-speak means she wants ME to hold HER. And I can't. But we did take a nap together the other day, and her snuggles and hugs reminded me that she will always want me to hold her, no matter how much I hold Reese.
Subscribe to:
Posts (Atom)
