Before I take off on many, many Fourth of July weekend adventures, I'll throw up a picture of Emma - a rare moment of happiness at therapy.
Happy Fourth of July, everyone! Really, truly - God. Bless. America. We need it.
Thursday, June 30, 2011
Hooray for a long (too busy) weekend!
First of all, June 30, 2010
Before I take off on many, many Fourth of July weekend adventures, I'll throw up a picture of Emma - a rare moment of happiness at therapy.
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Happy Fourth of July, everyone! Really, truly - God. Bless. America. We need it.
Before I take off on many, many Fourth of July weekend adventures, I'll throw up a picture of Emma - a rare moment of happiness at therapy.
Happy Fourth of July, everyone! Really, truly - God. Bless. America. We need it.
Tuesday, June 28, 2011
Just trying to stay cool
It's been over a week since I last blogged, but not much has happened since then. We've just been trying to stay cool and keep Emma cool. She's a REALLY hot-natured baby, so she doesn't mind the pool at my parents' neighborhood at all. She enjoys it most when we take her out of her float and hold her in the water ourselves - then she can really splash it up.
Emma had therapy last week as usual, but with one major change - a man. The Care Center had to rearrange some of the therapists' schedules for the week because a couple of them were on vacation. That resulted in a little bit of a mixup for Emma's OT and PT, but it turned out to be a beautiful thing. We had Emma there for PT at 9:15, and she was a little fussy...but not as bad as she usually is. Forty-five minutes later, she was much calmer for Chris, her OT for the day. The next 45 minutes were complete bliss as she and Chris "played" quietly. Emma didn't fuss once, and...dare I say it...she enjoyed herself! Emma has always preferred men...and I mean, ALWAYS. It seems that therapy is no exception. We've had a really hard time getting Emma to behave/work during therapy because she gets cranky and just plain doesn't want to work. My mom said she did ok, but not great, yesterday with her regular therapists, but it was nothing compared to her new boyfriend, Chris. (Chris DID try to tell Emma that he's married, but she didn't care. Little homewrecker.) I'm very afraid we're going to have to make some changes in order to allow Emma to get the most out of therapy, but it makes me very sad. We like her OT a lot; if only Emma would work for her like she did Chris.
After Emma was done with therapy on Friday morning, I made a game out of pretending to toss her in the ball pit and then finally set her in it. The ball pit is used to help kids find and maintain their balance and also to develop the motor skills to catch and throw the balls. I didn't want to traumatize her, so I took her out after only a few minutes. Emma immediately wanted back in, and I grabbbed these shots:
If I hadn't had an appointment to get to, we would have stayed even longer and let Emma play. Maybe this Friday...
A look back at this week last year:
June 26, 2010
June 28, 2010
Do you ever have those days/weeks/whatever-period-of-time when you just feel blessed? I'm going through that right now, and it's wonderful. I'm stressed, and my summer work schedule doesn't allow me to do anything that I really want/need to WHEN I want to do it, our house hasn't sold, we don't have a house we want to move into, I wish Emma would stop choking, etc, etc, etc....but I just feel so loved. I feel surrounded by God's love.
This past Sunday's sermon was basically about joy vs. happiness. A light bulb came on in the middle of the sermon when I realized that Emma is proof of the Spirit living in us. Happiness is fleeting and temporary; joy is deeper and permanent and can only truly be found in the Lord. Children Emma's age are too young to knowingly seek the joy of the Lord, much less know the difference between happiness and joy. If true joy was fleeting like a temporary state of happiness is, Emma would not smile at us in the midst of choking, gasping for air, and even spitting up. That is an underlying sense of joy that can only be attributed to the Lord. I call Emma a happy baby all the time because she's so personable and loves to be out in public behaving herself yet being nosy at restaurants and shops. But she's not happy...she's joyful. I know the Holy Spirit is with her because of her permanent state of joy despite all her struggles. (Side note: our church's nursery workers probably don't believe a word of this, but I promise she will be joyful in the nursery one day. Soon? Probably not. But one day.)
Emma had therapy last week as usual, but with one major change - a man. The Care Center had to rearrange some of the therapists' schedules for the week because a couple of them were on vacation. That resulted in a little bit of a mixup for Emma's OT and PT, but it turned out to be a beautiful thing. We had Emma there for PT at 9:15, and she was a little fussy...but not as bad as she usually is. Forty-five minutes later, she was much calmer for Chris, her OT for the day. The next 45 minutes were complete bliss as she and Chris "played" quietly. Emma didn't fuss once, and...dare I say it...she enjoyed herself! Emma has always preferred men...and I mean, ALWAYS. It seems that therapy is no exception. We've had a really hard time getting Emma to behave/work during therapy because she gets cranky and just plain doesn't want to work. My mom said she did ok, but not great, yesterday with her regular therapists, but it was nothing compared to her new boyfriend, Chris. (Chris DID try to tell Emma that he's married, but she didn't care. Little homewrecker.) I'm very afraid we're going to have to make some changes in order to allow Emma to get the most out of therapy, but it makes me very sad. We like her OT a lot; if only Emma would work for her like she did Chris.
After Emma was done with therapy on Friday morning, I made a game out of pretending to toss her in the ball pit and then finally set her in it. The ball pit is used to help kids find and maintain their balance and also to develop the motor skills to catch and throw the balls. I didn't want to traumatize her, so I took her out after only a few minutes. Emma immediately wanted back in, and I grabbbed these shots:
If I hadn't had an appointment to get to, we would have stayed even longer and let Emma play. Maybe this Friday...
A look back at this week last year:
June 26, 2010
June 28, 2010
Do you ever have those days/weeks/whatever-period-of-time when you just feel blessed? I'm going through that right now, and it's wonderful. I'm stressed, and my summer work schedule doesn't allow me to do anything that I really want/need to WHEN I want to do it, our house hasn't sold, we don't have a house we want to move into, I wish Emma would stop choking, etc, etc, etc....but I just feel so loved. I feel surrounded by God's love.
This past Sunday's sermon was basically about joy vs. happiness. A light bulb came on in the middle of the sermon when I realized that Emma is proof of the Spirit living in us. Happiness is fleeting and temporary; joy is deeper and permanent and can only truly be found in the Lord. Children Emma's age are too young to knowingly seek the joy of the Lord, much less know the difference between happiness and joy. If true joy was fleeting like a temporary state of happiness is, Emma would not smile at us in the midst of choking, gasping for air, and even spitting up. That is an underlying sense of joy that can only be attributed to the Lord. I call Emma a happy baby all the time because she's so personable and loves to be out in public behaving herself yet being nosy at restaurants and shops. But she's not happy...she's joyful. I know the Holy Spirit is with her because of her permanent state of joy despite all her struggles. (Side note: our church's nursery workers probably don't believe a word of this, but I promise she will be joyful in the nursery one day. Soon? Probably not. But one day.)
Monday, June 20, 2011
A water baby
Before I move on, here's a bit from last year:
June 21, 2010
Russell loves all water - the pool, the lake, waterparks, the beach...well, the ocean at least. He's not so crazy about all the sand getting all over everything. Let's just say, like father, like daughter. When we took Emma to the beach for spring break, she did NOT like the sand on her hands. Not. At. All. Emma has now also been to the pool 4 times: twice at the beach, twice at Nan and Granddad's neighborhood pool. She has enjoyed it all 4 times and is getting more and more comfortable with splashing in the pool and splashing in her bath. With every bath, she gets a little more adventurous with the water. She doesn't mind getting it in her eyes or on her face. Then the training wheels came off while getting a bath at Nan and Granddad's after going to the pool on Sunday afternoon - she went buck wild. Another one of my mommy warnings: this could be boring to some of you. I think it's cute, and it's my blog.
June 21, 2010
Russell loves all water - the pool, the lake, waterparks, the beach...well, the ocean at least. He's not so crazy about all the sand getting all over everything. Let's just say, like father, like daughter. When we took Emma to the beach for spring break, she did NOT like the sand on her hands. Not. At. All. Emma has now also been to the pool 4 times: twice at the beach, twice at Nan and Granddad's neighborhood pool. She has enjoyed it all 4 times and is getting more and more comfortable with splashing in the pool and splashing in her bath. With every bath, she gets a little more adventurous with the water. She doesn't mind getting it in her eyes or on her face. Then the training wheels came off while getting a bath at Nan and Granddad's after going to the pool on Sunday afternoon - she went buck wild. Another one of my mommy warnings: this could be boring to some of you. I think it's cute, and it's my blog.
Friday, June 17, 2011
Good news and bad news
Yesterday we went to see Dr. Troup to get the results of Emma's MRI's. It has been a year since she last had MRI's of her brain and spine. It's been a long time because we weren't sure how Emma would handle a breathing tube during the procedure. So let me start with that. Yesterday's conclusion: she does fine with the breathing tube and she is, at least for now, out of the respiratory/pulmonary woods. A year ago, we weren't sure what was going on with her breathing. Over time, we determined that it was more of a throat issue, as opposed to lungs and brain, at least when she was awake. Now we are still dealing with throat issues. Next point.
The bad news: Emma's MRI's still look bad. The good news: Emma's MRI's still look bad, emphasis on the word STILL. Emma's compressed brain stem, low spinal fluid flow, and huge cyst in her spine haven't changed, but Emma has...she is army crawling, pushing with her legs, waving her arms everywhere, and basically doing everything that these clinical issues should prevent her from doing. So that's great news! For the time being, we're not going to do anything about it. Emma's brain decompression is very dangerous, and Dr. Troup says there's a 50/50 chance that the surgery may or may not help right now. She will have to have this surgery eventually we think, but for now it's just more wait and see.
Today we went to see Dr. Morales, Emma's newest doctor. He's the neurologist who looked at her EEG. Emma is not having any type of epileptic episodes that would be causing her left foot and leg twitching. His best guess is that the twitching is caused by issues on her spine, which we kind of anticipated. The cyst on Emma's spine runs the entire length of the longest section of her spine. It would make sense that the cyst's pressure on her spinal cord could be causing the twitching...but no neurosurgeon or neurologist can ever be absolutely sure about it. Whenever Emma has the Chiari decompression surgery, she'll also have a procedure done to drain the cyst, so that's when we'd really be able to tell if the cyst is causing any kind of issues for Emma.
It's been over a week since I last blogged, so I have some catching up to do from last year:
June 9, 2010
June 13, 2010
June 16, 2010
June 17, 2010
Tonight Emma was rolling and army crawling all over the den like she normally does, and in a just a few minutes did this with the Kleenex box:
The bad news: Emma's MRI's still look bad. The good news: Emma's MRI's still look bad, emphasis on the word STILL. Emma's compressed brain stem, low spinal fluid flow, and huge cyst in her spine haven't changed, but Emma has...she is army crawling, pushing with her legs, waving her arms everywhere, and basically doing everything that these clinical issues should prevent her from doing. So that's great news! For the time being, we're not going to do anything about it. Emma's brain decompression is very dangerous, and Dr. Troup says there's a 50/50 chance that the surgery may or may not help right now. She will have to have this surgery eventually we think, but for now it's just more wait and see.
Today we went to see Dr. Morales, Emma's newest doctor. He's the neurologist who looked at her EEG. Emma is not having any type of epileptic episodes that would be causing her left foot and leg twitching. His best guess is that the twitching is caused by issues on her spine, which we kind of anticipated. The cyst on Emma's spine runs the entire length of the longest section of her spine. It would make sense that the cyst's pressure on her spinal cord could be causing the twitching...but no neurosurgeon or neurologist can ever be absolutely sure about it. Whenever Emma has the Chiari decompression surgery, she'll also have a procedure done to drain the cyst, so that's when we'd really be able to tell if the cyst is causing any kind of issues for Emma.
It's been over a week since I last blogged, so I have some catching up to do from last year:
June 9, 2010
June 13, 2010
June 16, 2010
June 17, 2010
Tonight Emma was rolling and army crawling all over the den like she normally does, and in a just a few minutes did this with the Kleenex box:
Wednesday, June 8, 2011
That's cold!
TCBY is one of our family favorites. Emma and her entourage go there frequently as well, and Emma really enjoys frozen yogurt. We have a delicious quart of vanilla fro-yo in our fridge that we're slowly hacking away at, and tonight Emma gave us her little sign that means she wants to eat. And this is what happened when that cold yogurt touched her lips:
I know it looks like she didn't like it, but that's just the funny cold face. She kept coming back for more.
I know it looks like she didn't like it, but that's just the funny cold face. She kept coming back for more.
Tuesday, June 7, 2011
Surprise!
I love surprises. When people say they hate surprises, I really, truly, deep down judge them and believe that they are not human. Ok, maybe not that extreme, but close. I apologize if this is you...but I just don't know how you can't love surprises. And I love being the orchestrator of surprises just as much as, if not more than, receiving them. So when my friend/neighbor/college roommate, Holly's, birthday was looming, I couldn't help but get the wheels turning on a devious surprise for her birthday.
During my junior and senior years of college, I lived with three other girls in apartments at Furman. Holly and Abbey were two of those roommates for both years. We now know that a handful of our OTHER friends at that time were skeptical of the three of us living together. We are all three very different, yet all very strong-willed individuals. I honestly think that some people who ran in our circle of friends were a little afraid that Furman Housing would be cleaning up the tragic remains of an apartment that had fallen victim to end-all be-all of girl fights. Wrong.
Fast forward x number of years. (We're all 30 now, let's leave it at that. Some numbers are upsetting to someone who thinks she graduated from high school "just a few years ago.") I orchestrated a surprise visit from Abbey this past weekend for Holly's birthday. Of the three of us, Abbey is the most inaccessible for a couple reasons: she has a 3-year-old and an 18-month-old (the latter of which is becoming more and more hell on wheels with each passing day), and she lives in Jacksonville. I don't blame her for being physically inaccessible. If I were in her shoes, my friends would seriously begin to wonder if Russell had dumped my body somewhere. Abbey keeps in touch via blog, email, text, etc. much better than I would. ANYWAY, the timing was just perfect, and Abbey drove up to Greenville on Saturday. Holly and her husband met me, Russell, and Emma at dinner...and SURPRISE!!
We all had such a delightful time with Abbey this weekend, and Abbey is Emma's new best friend. Seriously. She fell in love with Abbey...and why wouldn't she? When my mom came to pick up Emma Monday morning, Abbey was still at our house. My mom and Emma were loving on each other as they always do on Monday mornings after a weekend away from each other when Emma turned away from my mom and reached for Abbey. Dogs and babies have a sixth sense about who the good people are. And Lola loved Abbey, too.
Emma was feeling much more like herself this weekend, and she slept much better with her new BiPAP mask. However, the mask is very prone to leaking because the part that covers her nose is just too big. So last night we went back to the old mask because the little knot on her forehead had gone down. I think we're going to have to alternate masks from now on. Sigh. Nothing's easy.
A look back at last year: June 6, 2010
I leave you with a video of Emma cracking up with me fake-dropping and actually dropping the pendant on my necklace. I knew that if I broke it, it wouldn't matter - it was worth the gut chuckles. Emma laughs like adults do when they get REALLY tickled - you know, the laughs that are so intense that you don't even make any noise. So make sure you turn up your sound.
During my junior and senior years of college, I lived with three other girls in apartments at Furman. Holly and Abbey were two of those roommates for both years. We now know that a handful of our OTHER friends at that time were skeptical of the three of us living together. We are all three very different, yet all very strong-willed individuals. I honestly think that some people who ran in our circle of friends were a little afraid that Furman Housing would be cleaning up the tragic remains of an apartment that had fallen victim to end-all be-all of girl fights. Wrong.
Fast forward x number of years. (We're all 30 now, let's leave it at that. Some numbers are upsetting to someone who thinks she graduated from high school "just a few years ago.") I orchestrated a surprise visit from Abbey this past weekend for Holly's birthday. Of the three of us, Abbey is the most inaccessible for a couple reasons: she has a 3-year-old and an 18-month-old (the latter of which is becoming more and more hell on wheels with each passing day), and she lives in Jacksonville. I don't blame her for being physically inaccessible. If I were in her shoes, my friends would seriously begin to wonder if Russell had dumped my body somewhere. Abbey keeps in touch via blog, email, text, etc. much better than I would. ANYWAY, the timing was just perfect, and Abbey drove up to Greenville on Saturday. Holly and her husband met me, Russell, and Emma at dinner...and SURPRISE!!
We all had such a delightful time with Abbey this weekend, and Abbey is Emma's new best friend. Seriously. She fell in love with Abbey...and why wouldn't she? When my mom came to pick up Emma Monday morning, Abbey was still at our house. My mom and Emma were loving on each other as they always do on Monday mornings after a weekend away from each other when Emma turned away from my mom and reached for Abbey. Dogs and babies have a sixth sense about who the good people are. And Lola loved Abbey, too.
Emma was feeling much more like herself this weekend, and she slept much better with her new BiPAP mask. However, the mask is very prone to leaking because the part that covers her nose is just too big. So last night we went back to the old mask because the little knot on her forehead had gone down. I think we're going to have to alternate masks from now on. Sigh. Nothing's easy.
A look back at last year: June 6, 2010
I leave you with a video of Emma cracking up with me fake-dropping and actually dropping the pendant on my necklace. I knew that if I broke it, it wouldn't matter - it was worth the gut chuckles. Emma laughs like adults do when they get REALLY tickled - you know, the laughs that are so intense that you don't even make any noise. So make sure you turn up your sound.
Saturday, June 4, 2011
Who needs a routine?
I both love and hate routines, for the reasons you'd probably expect. As an uptight accountant, I need order, structure, sequence, accomplishment, lists, and items checked off those lists. (This is why I hate laundry: you finish a load, check. And within hours you're no longer finished with the laundry; it has started all over with the first dirty sock. But I digress...) But as a person who also loves spontaneity (within reason), I need a shakeup - a routine gets old, boring, tired, lifeless. Boy, did we detour off the beaten path this week. I'll pick up from the last blog entry about the first MAJOR detour, Emma's MRI. And the week only got more interesting.
Detour #1: Emma woke up coughing, hacking, sniffling, and choking on Thursday morning. I stayed home from work for the morning and took her to the doctor, where we found out that she had an ear infection (first one!), in addition to some major teething, congestion from a cold or sinus infection and a sore scratchy throat from the breathing tube. The doctor said that once Emma got some Children's Advil and her antibiotic, she'd start acting like herself again. I don't know what she was talking about because was in a fantastic mood all day.
Detour #2: For about the last week, Emma hasn't been sleeping well with her BiPAP mask. It has a pressure point pad on her forehead that has left a knot that won't go away. We thought it probably hurt her, but you can't loosen the mask because air leaks out. So we got a new mask on Wednesday. Disaster. More sleepless nights, more crying. Emma's doctor on Thursday said that the air blowing through her nose probably hurts her infected ear.
Detour #3: Since Russell and Emma were both now sick, I slept on the couch Thursday night, hoping to get a little more sleep. Wrong. The sound of a crying baby in the night travels faster than the speed of light and louder than a sonic boom.
Detour #4: I worked until 6:30 Friday night, trying to get something accomplished since I was out more than I worked this week. This was the first of 11 weeks working 4 long days and off one day. I used to enjoy these summer hours, but I learned last summer that this schedule is not conducive to being a mommy.
Detour #5: Emma started acting like she felt bad on Friday - no whining or fussing (blessing!) but just lethargic. That has carried forward to this morning.
Detour #6: Emma hasn't been able to get baby food down without choking and spitting up mucus. Until FRIDAY NIGHT! Emma has started feeding herself very well, and whenever she sees someone eating and feels like trying it out herself, she puts her hands together in sign language to signify "more." Not quite the correct sign to indicate she wants to start eating, but we know what it means, as does she - and that's what matters. So she crawled up to Russell Friday night as he was eating some toast, and did the sign for "more." She cried until Russell could get another piece toasted for her, and then she devoured some toast like she had been eating normally all week. This morning she did really well with her baby food.
Detour #7: Emma slept with her new mask on like a champ last night. Sort of. She didn't cry, at least. She woke up at 2:00 am trying to get comfortable and tossed and turned for an hour without crying even one little tear. We turned the light on and realized that she couldn't breathe because her nose was congested, but she also had a throat and mouth full of saliva and mucus. Poor little girl. We took the mask off and let her sleep without it once we got her all cleaned up and suctioned out. Emma went right back to sleep, and we all slept until 7:00. So. thankful.
Emma still isn't feeling great today, and we thought she had been fighting sleep all morning. Fighting sleep is nothing out of the ordinary, but she's actually TRYING to go to sleep, but something just isn't letting her. We're not quite sure what's bothering her, but we hope she'll get a restful nap soon because we're taking her out to eat tonight. Despite all her illnesses and issues, she still manages a beautiful little smile, complete with bed head and some baby food smears on her lips. Bless her, her eyes even look tired.
Detour #1: Emma woke up coughing, hacking, sniffling, and choking on Thursday morning. I stayed home from work for the morning and took her to the doctor, where we found out that she had an ear infection (first one!), in addition to some major teething, congestion from a cold or sinus infection and a sore scratchy throat from the breathing tube. The doctor said that once Emma got some Children's Advil and her antibiotic, she'd start acting like herself again. I don't know what she was talking about because was in a fantastic mood all day.
Detour #2: For about the last week, Emma hasn't been sleeping well with her BiPAP mask. It has a pressure point pad on her forehead that has left a knot that won't go away. We thought it probably hurt her, but you can't loosen the mask because air leaks out. So we got a new mask on Wednesday. Disaster. More sleepless nights, more crying. Emma's doctor on Thursday said that the air blowing through her nose probably hurts her infected ear.
Detour #3: Since Russell and Emma were both now sick, I slept on the couch Thursday night, hoping to get a little more sleep. Wrong. The sound of a crying baby in the night travels faster than the speed of light and louder than a sonic boom.
Detour #4: I worked until 6:30 Friday night, trying to get something accomplished since I was out more than I worked this week. This was the first of 11 weeks working 4 long days and off one day. I used to enjoy these summer hours, but I learned last summer that this schedule is not conducive to being a mommy.
Detour #5: Emma started acting like she felt bad on Friday - no whining or fussing (blessing!) but just lethargic. That has carried forward to this morning.
Detour #6: Emma hasn't been able to get baby food down without choking and spitting up mucus. Until FRIDAY NIGHT! Emma has started feeding herself very well, and whenever she sees someone eating and feels like trying it out herself, she puts her hands together in sign language to signify "more." Not quite the correct sign to indicate she wants to start eating, but we know what it means, as does she - and that's what matters. So she crawled up to Russell Friday night as he was eating some toast, and did the sign for "more." She cried until Russell could get another piece toasted for her, and then she devoured some toast like she had been eating normally all week. This morning she did really well with her baby food.
Detour #7: Emma slept with her new mask on like a champ last night. Sort of. She didn't cry, at least. She woke up at 2:00 am trying to get comfortable and tossed and turned for an hour without crying even one little tear. We turned the light on and realized that she couldn't breathe because her nose was congested, but she also had a throat and mouth full of saliva and mucus. Poor little girl. We took the mask off and let her sleep without it once we got her all cleaned up and suctioned out. Emma went right back to sleep, and we all slept until 7:00. So. thankful.
Emma still isn't feeling great today, and we thought she had been fighting sleep all morning. Fighting sleep is nothing out of the ordinary, but she's actually TRYING to go to sleep, but something just isn't letting her. We're not quite sure what's bothering her, but we hope she'll get a restful nap soon because we're taking her out to eat tonight. Despite all her illnesses and issues, she still manages a beautiful little smile, complete with bed head and some baby food smears on her lips. Bless her, her eyes even look tired.
It's been a while since I've posted the links to last year. Here's what I've missed:
It hurts my heart to look back at where we were this time last year, but I just have to look forward. Looking back on all that Emma has been through is no way to go through life. God truly has blessed us this far, and I have to trust that He will continue to do so.
Wednesday, June 1, 2011
Lots to do means less time to post
It's been nearly a week since I've posted anything because our lives have been go, go, go!! Let me sum up each day since the last post:
Friday: anesthesia pre-op appointment, during which Emma pulled out all her tricks, smiles, faces, and waves to get people to pay attention to her
Saturday: chore day at home
Sunday: Russell left for the NASCAR race in Charlotte (blech. NASCAR.) Emma, my mom, and I visited relatives in Gaffney, shopped at the outlets, and ate at Cracker Barrel. At Cracker Barrel, Emma ate green beans (mashed up of course), small bites of grilled chicken tenderloin, and small bites of biscuit. She did such a great job eating adult food! Emma was exhausted but then got her second wind around 9 pm, after only napping a total of 45 minutes all day. She finally knocked out at 11:30...such an odd day for her, but she was an absolute delight nonetheless.
Monday: slept in with Emma since she was a night owl. More chores. Flipped out when Daddy came home.
Tuesday: work, work, work for me. My long summer days officially started today - around 9 or 10 hours every day for 11 straight weeks, with one day off. Play, play, play for Emma. Shriner's visit. See below.
Wednesday: BIG. DAY. MRI. See below.
As for the "see belows"...we thought Emma might have a bladder infection, which would be horrible news since one more bladder infection probably means that her bladder isn't fully emptying on its own. Emma was on antibiotics from sometime in the fall until April. If an infection came back, we were probably going to have to start cathing her every day to make sure her bladder empties. That was one thing I did NOT want to add to her list of problems. Many, many kids with spina bifida have urological issues, but so far Emma has dodged that bullet. The wonderful people at Shriner's got us in for a urinalysis (sp? too tired to look it up), which came up negative!! Jean Brown, nurse extraordinaire, commended us for calling them to check it out because overlooking a bladder infection can be catastrophic for kids with spina bifida.
Second "see below": Emma had 3 MRI's and a cerebral spinal fluid study in one visit this morning. These were scary tests not because of what they are, but because of what they required of Emma. She had to first be sedated with gas in order for an IV to be put in. That took 15 attempts. Yep, 15 red dots. 15 blue bruises. The top of both her hands, both her wrists, the inside of both her elbows, all over both her ankles. The final IV went in her right ankle. She had a breathing tube placed down her throat, and she was under anesthesia for about an hour while the MRI technicians did the scans. Then Emma was extubated and came out of the anesthesia. When they called me and Russell back to see her, she was crying and was having trouble getting a healthy breath. We could definitely tell she had had a breathing tube down her throat by the coughing, raspy crying, and sound of gook, for lack of a better word, in her throat. She got much better in about 30 minutes after being held by Daddy (probably the best medicine of all) and having a bottle. We were told she probably wouldn't be herself for 24 hours. Two hours after Emma came out of the anesthesia, she was definitely back to her old self - smiling, waving, flirting, talking, etc. What a little trooper.
We'll get the results of the MRI next Thursday when we visit Dr. Troup. He will tell us how her Chiari II malformation compares to last year, as well as the spinal fluid-filled cyst in her spinal cord. This may sound strange at first, but hear me out: my prayer is for the very dangerous, sometimes backward progress-inducing decompression surgery. I would LOVE for Dr. Troup to look at the MRI's and say, "Oh! I can solve her swallowing problems by decompressing her brain stem!" The odds of that actually happening are humanly slim, but God is the one in control of it all...so that is our prayer - that He would reveal something to Dr. Troup on those MRI films that shows Dr. Troup how to fix our sweet Emma's throat.
Oh, one more thing - Emma got a new sleep mask today because her old one has to be really, really tight to not leak any air. But now she has this little knot on her forehead from the forehead pad that won't go away :( She hasn't been as cooperative with the sleep mask in the last week, so we think it may have something to do with her bruised, knotted little forehead. Hopefully the new mask will help.
I feel as though 2 weights have been lifted: Emma doesn't have a bladder infection, and the scary experience of recovering from the breathing tube shoved down her throat is over, with a healthy baby at the end of it all. For today, at least. I know we don't have the MRI results yet, but as Matthew 6:34 says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. "
Friday: anesthesia pre-op appointment, during which Emma pulled out all her tricks, smiles, faces, and waves to get people to pay attention to her
Saturday: chore day at home
Sunday: Russell left for the NASCAR race in Charlotte (blech. NASCAR.) Emma, my mom, and I visited relatives in Gaffney, shopped at the outlets, and ate at Cracker Barrel. At Cracker Barrel, Emma ate green beans (mashed up of course), small bites of grilled chicken tenderloin, and small bites of biscuit. She did such a great job eating adult food! Emma was exhausted but then got her second wind around 9 pm, after only napping a total of 45 minutes all day. She finally knocked out at 11:30...such an odd day for her, but she was an absolute delight nonetheless.
Monday: slept in with Emma since she was a night owl. More chores. Flipped out when Daddy came home.
Tuesday: work, work, work for me. My long summer days officially started today - around 9 or 10 hours every day for 11 straight weeks, with one day off. Play, play, play for Emma. Shriner's visit. See below.
Wednesday: BIG. DAY. MRI. See below.
As for the "see belows"...we thought Emma might have a bladder infection, which would be horrible news since one more bladder infection probably means that her bladder isn't fully emptying on its own. Emma was on antibiotics from sometime in the fall until April. If an infection came back, we were probably going to have to start cathing her every day to make sure her bladder empties. That was one thing I did NOT want to add to her list of problems. Many, many kids with spina bifida have urological issues, but so far Emma has dodged that bullet. The wonderful people at Shriner's got us in for a urinalysis (sp? too tired to look it up), which came up negative!! Jean Brown, nurse extraordinaire, commended us for calling them to check it out because overlooking a bladder infection can be catastrophic for kids with spina bifida.
Second "see below": Emma had 3 MRI's and a cerebral spinal fluid study in one visit this morning. These were scary tests not because of what they are, but because of what they required of Emma. She had to first be sedated with gas in order for an IV to be put in. That took 15 attempts. Yep, 15 red dots. 15 blue bruises. The top of both her hands, both her wrists, the inside of both her elbows, all over both her ankles. The final IV went in her right ankle. She had a breathing tube placed down her throat, and she was under anesthesia for about an hour while the MRI technicians did the scans. Then Emma was extubated and came out of the anesthesia. When they called me and Russell back to see her, she was crying and was having trouble getting a healthy breath. We could definitely tell she had had a breathing tube down her throat by the coughing, raspy crying, and sound of gook, for lack of a better word, in her throat. She got much better in about 30 minutes after being held by Daddy (probably the best medicine of all) and having a bottle. We were told she probably wouldn't be herself for 24 hours. Two hours after Emma came out of the anesthesia, she was definitely back to her old self - smiling, waving, flirting, talking, etc. What a little trooper.
We'll get the results of the MRI next Thursday when we visit Dr. Troup. He will tell us how her Chiari II malformation compares to last year, as well as the spinal fluid-filled cyst in her spinal cord. This may sound strange at first, but hear me out: my prayer is for the very dangerous, sometimes backward progress-inducing decompression surgery. I would LOVE for Dr. Troup to look at the MRI's and say, "Oh! I can solve her swallowing problems by decompressing her brain stem!" The odds of that actually happening are humanly slim, but God is the one in control of it all...so that is our prayer - that He would reveal something to Dr. Troup on those MRI films that shows Dr. Troup how to fix our sweet Emma's throat.
Oh, one more thing - Emma got a new sleep mask today because her old one has to be really, really tight to not leak any air. But now she has this little knot on her forehead from the forehead pad that won't go away :( She hasn't been as cooperative with the sleep mask in the last week, so we think it may have something to do with her bruised, knotted little forehead. Hopefully the new mask will help.
I feel as though 2 weights have been lifted: Emma doesn't have a bladder infection, and the scary experience of recovering from the breathing tube shoved down her throat is over, with a healthy baby at the end of it all. For today, at least. I know we don't have the MRI results yet, but as Matthew 6:34 says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. "
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