In addendum to my last post, I have never been to an eye doctor because I've always had 20/20 vision, as did my parents until they were in their 40's. The glasses also did not get run over by the stroller because someone didn't/couldn't see them. So don't be afraid that I'm blind as a bat and driving around town with precious cargo. I'm not. And thankful for it. That being said, it scares the bejeebies out of me to look through Russell's glasses that he wears at work and then realize that he doesnt wear them to drive. He has astigmatism, which I realize is different from plain old near- or far-sightedness...but it still confuses me that he doesn't wear them to drive. That's ok - my medical knowledge has been expanded so much in the last year that I probably can't squeeze anything else in anyway.
Emma has been tricky with her naps here lately - she never has been one to nap, and certainly not nap easily. The last few days she seems to be boycotting naps altogether. And still managing to stay up until 7 or 8 at night. I don't know if this is true, but I have a theory. 14-month-old children are active - they are walking, running, crawling everywhere, getting into everything they possibly can. In theory, Emma has the equivalent amount of energy, but not the ability to expend it as well or as efficiently. I wonder if that translates into more awake time and less of that knock-you-down fatigue that results in other kids' nice, long afternoon naps. That's my theory. Perhaps this is a question for a fellow spina bifida mom...
Tomorrow is Emma's pre-op appointment for her MRI anesthesia. I have no idea what they'll do tomorrow, except maybe take some blood. Hopefully it will be a heel stick, which she can't feel. MRI's on Wednesday, Dr. Troup on Friday, June 9, and the neurologist, Dr. Morales, on Friday, June 17. I hope that these 4 appointments will spell the end of the brain/neuro testing for a while, but if I've learned anything, it's that most doctor's appointments lead to more testing and more appointments. In case you're wondering, the only way I'm able to work and also manage these appointments is MY MOM. She's wonderful. A life-saver, my heroine. Sure, I could work and have Emma in day care. But day care doesn't meet me at the hospital and at the doctors' offices and give Emma a bath and smother her in granny kisses.
Thursday, May 26, 2011
Wednesday, May 25, 2011
Somehow she knew
Emma had to make an emergency visit to the eye doctor on Monday afternoon after her EEG because she threw her glasses onto the asphalt while we were walking Sunday night. And then someone ran over them with the stroller. One lens in particular has a significant scratch across the front. Missy, our favorite...person (I don't know what her title is), at the eye doctor told us the scratches won't hurt her vision until we come back for our previously scheduled follow-up in a few weeks. If Emma needed a new prescription, we wouldn't have to pay for new lenses. However, if she DIDN'T need a new prescription, we'd be dishing out at least $140 for new lenses. We were able to get her appointment bumped up by a few weeks to this morning, and - joy! - she needs a new prescription. We really appreciate that the doctor is sensitive to family finances - just in case Emma decides to toss the glasses again (and they are run over by a stroller again) in the next month to 6 weeks, there's no point in getting the new glasses. She doesn't actually look out of the lens where the scratch is, and we can use them for another month or so because the necessary change isn't THAT drastic. Then they'll become the spares.
I guess Emma was trying to tell us she needed a new prescription...somehow she knew. The great news is that her eyes have gotten BETTER! Adults rarely get new glasses because their eyes have improved. On kids, improvement is more common, and it's definitely what you pray for. I've never been to an eye doctor, so every appointment Emma has usually contains some sort of new information for me.
I guess Emma was trying to tell us she needed a new prescription...somehow she knew. The great news is that her eyes have gotten BETTER! Adults rarely get new glasses because their eyes have improved. On kids, improvement is more common, and it's definitely what you pray for. I've never been to an eye doctor, so every appointment Emma has usually contains some sort of new information for me.
We did it!
Of course we did it. Things in life are hard, but you just DO them. Sometimes you don’t know how you did them, but you just did. I have found that some things are harder than you think they’ll be. But most aren’t.
May 20, 2010
May 22, 2010
May 24, 2010
Like sleep-depriving a 14-month-old baby by keeping her up until midnight (this deserves another WE DID IT!), waking her up at 7, getting her to the hospital at 9:30, waiting for an hour and a half in various waiting rooms with her, wrapping her in a bedsheet straightjacket while cleaning 25 spots on her head, affixing electrodes to said spots, and finally letting her sleep for a mere 30 minutes at 11:30 am. It sounds awful, but in all actuality, it really wasn’t THAT bad…because Baby Emma is a little angel.
I can’t imagine a more well-behaved baby. My mother has told me on several occasions that maybe we shouldn’t have another child because they don’t get any more well-behaved than this. It would be all downhill. After Monday morning’s EEG, I believe it. Emma was a doll, and we got such great smiles out of her while we waited at the hospital and even after her 30 minute nap during the EEG (and you don’t have to be a genius to figure out that 30 minutes isn’t enough restorative sleep for an exhausted baby).
In order to keep the electrodes on Emma’s head, they put some goop on her head. The tech said it has the consistency of shortening, but it felt more like homemade icing – greasy, grainy, sugar basically. And here’s the end result:
Emma smiled and talked the whole way home, even though she was still exhausted.
We’ll get the results in the next couple of weeks, I would imagine, although I’m not that worried about it. As I’ve mentioned before, the purpose of the EEG was just to rule out seizures as the cause of Emma’s left leg and foot twitches. I looked at the readings whenever her foot twitched, and nothing really changed. You know, with all my EEG-reading experience, I’m sure it’s fine. (coughsarcasmcough)
Sunday night Emma had a good time dismantling the Sunday sale papers, as she always does. But this time, there was the extra fun of pitching them over the side of the stander. (Note: some of you may find this video slightly boring. Some parts are funny…I hope some of you appreciate it. Just warning you.)
Let’s not forget to take a look at last year’s goings-ons:May 20, 2010
May 22, 2010
May 24, 2010
Thursday, May 19, 2011
Quick and (not) Easy
Around this time last year: May 18, 2010 and May 19, 2010
When we were at Dr. Troup's office on Tuesday, we learned that Emma will be having an EEG to ensure that she's not having seizures because she has some sudden, small but quick tremors/twitches in her left leg and especially her foot. He REALLY doesn't think she's having mini-seizures and that it's just an overactive reflex, but he has to be able to rule out the seizures. Dr. Troup ordered the EEG on Tuesday, and I received a call yesterday to have it scheduled. That's the quick of it.
The (not) easy of it is what it requires to GET the EEG. We knew that Emma would have to go in sleep-deprived because they need to see her brain activity both awake and asleep. Dr. Troup's scheduler questioned the EEG scheduler's instructions and still got the same answer: bring Emma in Monday morning (again, quick!) at 9:30 am, and do not allow her to sleep more than 4 hours the night before. You heard/read me. 4 hours. I could dangle Emma by her ankles in a hurricane, and she'd still be asleep. My conclusion: we'll do the best we can, even if that means being the trashy family who takes their 14-month-old to Waffle House in the middle of the night. After checking with Emma's sleep specialist on how to accomplish this impossible task, his nurse, Anne, said those instructions were incorrect. Two minutes after getting off the phone with Anne, I received a call from a veteran nurse in the neurology sleep lab with the instructions that we are to do what we think is best to bring Emma in sleep-deprived. She said that probably means depriving her of about 2 hours of sleep beyond her normal sleep time, but she doesn't know Emma. In order to get Nosy Rosy to go to sleep in a strange place with new people, her head coated in wires and goop and wrapped in gauze is going to require deprivation of about 3 to 5 hours. But still, that's heaven compared to the hell of no more than 4 hours of sleep! Praise God that we have nurses like Anne looking out for her and that I had the presence of mind to call Anne asking for help.
Yesterday was my dad's birthday, and we went to dinner at the Runway Cafe with my parents, Uncle John, Aunt Eva, Mama Jan, and John (Jan's husband, who clearly needs some sort of familial title). Emma loved on her Daddy like always, but she is getting awfully attached to Aunt Eva and Mama Jan. She played musical chairs for most of the dinner. I didn't get any pictures of Emma with the birthday boy, but she sure did enjoy herself. And she surely does love her Granddad.
When we were at Dr. Troup's office on Tuesday, we learned that Emma will be having an EEG to ensure that she's not having seizures because she has some sudden, small but quick tremors/twitches in her left leg and especially her foot. He REALLY doesn't think she's having mini-seizures and that it's just an overactive reflex, but he has to be able to rule out the seizures. Dr. Troup ordered the EEG on Tuesday, and I received a call yesterday to have it scheduled. That's the quick of it.
The (not) easy of it is what it requires to GET the EEG. We knew that Emma would have to go in sleep-deprived because they need to see her brain activity both awake and asleep. Dr. Troup's scheduler questioned the EEG scheduler's instructions and still got the same answer: bring Emma in Monday morning (again, quick!) at 9:30 am, and do not allow her to sleep more than 4 hours the night before. You heard/read me. 4 hours. I could dangle Emma by her ankles in a hurricane, and she'd still be asleep. My conclusion: we'll do the best we can, even if that means being the trashy family who takes their 14-month-old to Waffle House in the middle of the night. After checking with Emma's sleep specialist on how to accomplish this impossible task, his nurse, Anne, said those instructions were incorrect. Two minutes after getting off the phone with Anne, I received a call from a veteran nurse in the neurology sleep lab with the instructions that we are to do what we think is best to bring Emma in sleep-deprived. She said that probably means depriving her of about 2 hours of sleep beyond her normal sleep time, but she doesn't know Emma. In order to get Nosy Rosy to go to sleep in a strange place with new people, her head coated in wires and goop and wrapped in gauze is going to require deprivation of about 3 to 5 hours. But still, that's heaven compared to the hell of no more than 4 hours of sleep! Praise God that we have nurses like Anne looking out for her and that I had the presence of mind to call Anne asking for help.
Yesterday was my dad's birthday, and we went to dinner at the Runway Cafe with my parents, Uncle John, Aunt Eva, Mama Jan, and John (Jan's husband, who clearly needs some sort of familial title). Emma loved on her Daddy like always, but she is getting awfully attached to Aunt Eva and Mama Jan. She played musical chairs for most of the dinner. I didn't get any pictures of Emma with the birthday boy, but she sure did enjoy herself. And she surely does love her Granddad.
Tuesday, May 17, 2011
On the move, literally and figuratively
How do you entertain a child whose idea of entertainment is throwing down all her toys? (She really enjoys this while she's in her stander.)
We had a delightful Sunday - church, lunch from The Fresh Market (YUM), and relaxing at home. Well, Russell and Emma relaxed, while I went couponing at CVS (saved more than I spent, thank you very much). We had a church picnic Sunday night, which was delightful for everyone. During a pickup softball game, Russell hit a home run out of the t-ball field and had several church kids throwing their gloves at him - good fun for everyone, including Russell, whose only hope for hitting a home run is out of a t-ball field. Don't worry, he admitted as much to me last night. I do love him so much; what a funny guy.
BIG DAY TODAY! Emma fed herself! Emma struggles with textures, as many children with spina bifida do. She struggles a little bit more because of her unique swallowing problems, so getting her used to eating adult food is going to be a challenge. We have been starting with meltables - club crackers and some of the Gerber products designed to dissolve in babies' mouths. Emma does pretty well with these foods, but she just never had any interest in feeding herself, even when I guided her hand to her mouth. Until today! I guided her hand to her mouth a couple times, and voila! She did it herself three times after that. Baby steps. Delayed baby steps, but steps nonetheless.
We went to see Dr. Troup today for him to certify that yes, Emma's heart and lungs are fine to have general anesthesia and be intubated for her MRI. We got some more information about this procedure that will be coming up on June 1. I'm already nervous because they'll be sticking a giant breathing tube down her throat, which can make it scratchy and make her choke more. On top of that, the MRI will probably show Dr. Troup lots of things that have changed with her brain and her spine since the last one was done a year ago. Emma was a little doll at Dr. T's office, and she loved crawling up and down the exam table on the noisy paper towards Aunt Eva's cell phone.
Check out last year: May 16, 2010 and May 17, 2010
God has certainly blessed us with a smart, happy, and beautiful child. As if I didn't know it already, a sweet child is proof that God loves us.
We had a delightful Sunday - church, lunch from The Fresh Market (YUM), and relaxing at home. Well, Russell and Emma relaxed, while I went couponing at CVS (saved more than I spent, thank you very much). We had a church picnic Sunday night, which was delightful for everyone. During a pickup softball game, Russell hit a home run out of the t-ball field and had several church kids throwing their gloves at him - good fun for everyone, including Russell, whose only hope for hitting a home run is out of a t-ball field. Don't worry, he admitted as much to me last night. I do love him so much; what a funny guy.
BIG DAY TODAY! Emma fed herself! Emma struggles with textures, as many children with spina bifida do. She struggles a little bit more because of her unique swallowing problems, so getting her used to eating adult food is going to be a challenge. We have been starting with meltables - club crackers and some of the Gerber products designed to dissolve in babies' mouths. Emma does pretty well with these foods, but she just never had any interest in feeding herself, even when I guided her hand to her mouth. Until today! I guided her hand to her mouth a couple times, and voila! She did it herself three times after that. Baby steps. Delayed baby steps, but steps nonetheless.
We went to see Dr. Troup today for him to certify that yes, Emma's heart and lungs are fine to have general anesthesia and be intubated for her MRI. We got some more information about this procedure that will be coming up on June 1. I'm already nervous because they'll be sticking a giant breathing tube down her throat, which can make it scratchy and make her choke more. On top of that, the MRI will probably show Dr. Troup lots of things that have changed with her brain and her spine since the last one was done a year ago. Emma was a little doll at Dr. T's office, and she loved crawling up and down the exam table on the noisy paper towards Aunt Eva's cell phone.
Check out last year: May 16, 2010 and May 17, 2010
God has certainly blessed us with a smart, happy, and beautiful child. As if I didn't know it already, a sweet child is proof that God loves us.
Saturday, May 14, 2011
What I love about Saturday
My church
A dentist who's open on Saturdays
One of my very favorite stores
A delicious lunch, plus I found out they deliver!
Walking with Lola, Daddy, and my baby girl
A den littered with toys
A sweet puppy
Emma enjoying her stander
The picture Emma took of herself with my phone
14 oz of low-fat vanilla frozen yogurt for $1.47
A happy army-crawling Emma
A sleeping angel
Although this day, May 14, 2011 was a great day, May 14, 2010 wasn't so great.
Also, please, please keep my first cousin, Gina, and her daughters, Mary Catherine and Macon in your prayers. Gina's husband, John, passed away yesterday after a long and difficult battle with ALS, aka Lou Gehrig's Disease. John was an amazing person, and the world needs more people like him in it. He will be missed by so many.
A dentist who's open on Saturdays
One of my very favorite stores
A delicious lunch, plus I found out they deliver!
Walking with Lola, Daddy, and my baby girl
A den littered with toys
A sweet puppy
Emma enjoying her stander
The picture Emma took of herself with my phone
14 oz of low-fat vanilla frozen yogurt for $1.47
A happy army-crawling Emma
A sleeping angel
Although this day, May 14, 2011 was a great day, May 14, 2010 wasn't so great.
Also, please, please keep my first cousin, Gina, and her daughters, Mary Catherine and Macon in your prayers. Gina's husband, John, passed away yesterday after a long and difficult battle with ALS, aka Lou Gehrig's Disease. John was an amazing person, and the world needs more people like him in it. He will be missed by so many.
Friday, May 13, 2011
Deep breath, much better
So I've been pretty stressed out this week, and I can't really say that anything is better right at the moment. But I've felt a little bit more peace over my heart. I can partially attribute it to checking things off my to-do list, but mainly on the blessings in my life - a loving, devoted, and hard-working husband, a sweet, darling, beautiful little girl, and friends and family who care for us so much and make me laugh and smile every day.
Emma is getting SO GOOD at army crawling. She has figured out when there's something across the room that she wants, she can roll for fast action. Once she gets close to the object/person, she stops rolling and army crawls the rest of the short distance in the specific distance she needs to go.
As you've probably figured out, Emma is delayed in most areas of development. I'm going to go ahead and say all areas. For various reasons. She is babbling a lot, but I can't really say that she has said her first word. I think Russell and my mom have kidded themselves that Emma has said some meaningful words, but I seriously doubt it. Mom tells me quite often that Emma has said new words. The best was when Emma apparently said chicken like, 2 months ago. Really? Chicken? Anyway, I digress.....Emma repeats our words, but I don't think any specific words have meaning yet. Until yesterday! I'm pretty sure that "bye" is her first word. What that means to me is that she will be a mover, an achiever, an advancer, always looking ahead and saying goodbye to her past accomplishments. She's already pretty independent (when she's awake and alert...asleep and sleepy are two different stories). In the car with her, she doesn't allow you to have your elbow leaning on her car seat, nor does she want you holding her hand.
I really want Emma to be a water baby, and I think we're on our way! She doesn't mind water in her eyes, and tonight she figured out how to splash a whole lot in the tub, as opposed to just kind of touching and feeling the water.
Here's the difficult blog from this time last year: May 12, 2010
I'll leave you with this sweet picture of Emma enjoying the beautiful spring weather on my parents' porch in her birthday clothes from the Ricketts.
Emma is getting SO GOOD at army crawling. She has figured out when there's something across the room that she wants, she can roll for fast action. Once she gets close to the object/person, she stops rolling and army crawls the rest of the short distance in the specific distance she needs to go.
As you've probably figured out, Emma is delayed in most areas of development. I'm going to go ahead and say all areas. For various reasons. She is babbling a lot, but I can't really say that she has said her first word. I think Russell and my mom have kidded themselves that Emma has said some meaningful words, but I seriously doubt it. Mom tells me quite often that Emma has said new words. The best was when Emma apparently said chicken like, 2 months ago. Really? Chicken? Anyway, I digress.....Emma repeats our words, but I don't think any specific words have meaning yet. Until yesterday! I'm pretty sure that "bye" is her first word. What that means to me is that she will be a mover, an achiever, an advancer, always looking ahead and saying goodbye to her past accomplishments. She's already pretty independent (when she's awake and alert...asleep and sleepy are two different stories). In the car with her, she doesn't allow you to have your elbow leaning on her car seat, nor does she want you holding her hand.
I really want Emma to be a water baby, and I think we're on our way! She doesn't mind water in her eyes, and tonight she figured out how to splash a whole lot in the tub, as opposed to just kind of touching and feeling the water.
I'll leave you with this sweet picture of Emma enjoying the beautiful spring weather on my parents' porch in her birthday clothes from the Ricketts.
Wednesday, May 11, 2011
The delicate balance
Working mothers: do you ever have those days when you are 100% certain that God never intended for mothers to work or working women to have kids? I have been oh so carefully trying to balance friendships, a social life (both with and without Emma), family time, health, sanity, sleep, WORK, church and its associated obligations (yes, I said it: obligations. Today they are obligations.), Emma's appointments, errands, the bug man, the gutter cleaner, a needy dog with a UTI, Medicaid and health insurance, and a house clean and decluttered enough to make me actually want to live in it. And would you believe that the only reward I get for trying to balance these things is insanity (temporary, I hope)?
I just cannot go into all the things that have filled our lives over the past week since I last blogged, but I will try to give you the quick and dirty. Emma loves to army crawl and whimpers to be put on the floor. She had her first VitalStim therapy on Monday, and it went as well as could be expected considering she's supposed to eat for the whole 45 minutes while 4 electrodes feel like they're tugging on her throat muscles. But that therapy has come to a screeching halt after only one treatment, thanks to Medicaid, Nikki Haley, and Tony Keck. Emma's speech therapist is working on getting it started again, but it will be another at week at least. Which is a problem because the subsequent therapy is supposed to be done within 2 to 3 days of the last one.
Mother's Day was good, but a little bittersweet for me because I just kept remembering that Emma was home from the hospital last Mother's Day. Little did we know that she was about to go back into the hospital for the some of the worst news a parent could receive. I spent last Mother's Day happy and oblivious; this Mother's Day was happy and hopeful. With a dash of desperation.
Today I have been a little sad because it was this day last year that Emma started wheezing and we took her to the pediatrician, who sent us to the hospital. It was round about 7:00 pm at the hospital that Emma's eyes rolled back in her head and she turned blue in my arms. God was good to us, though, because she was in a hospital room surrounded by nurses when it happened. See the happy events leading up to this sad day below:
May 5, 2010
May 7, 2010
May 9, 2010
May 10, 2010
PS - Sorry for such a downer blog, especially because I know there are people out there who have it much worse than I do. Tomorrow, tomorrow will be better.
I just cannot go into all the things that have filled our lives over the past week since I last blogged, but I will try to give you the quick and dirty. Emma loves to army crawl and whimpers to be put on the floor. She had her first VitalStim therapy on Monday, and it went as well as could be expected considering she's supposed to eat for the whole 45 minutes while 4 electrodes feel like they're tugging on her throat muscles. But that therapy has come to a screeching halt after only one treatment, thanks to Medicaid, Nikki Haley, and Tony Keck. Emma's speech therapist is working on getting it started again, but it will be another at week at least. Which is a problem because the subsequent therapy is supposed to be done within 2 to 3 days of the last one.
Mother's Day was good, but a little bittersweet for me because I just kept remembering that Emma was home from the hospital last Mother's Day. Little did we know that she was about to go back into the hospital for the some of the worst news a parent could receive. I spent last Mother's Day happy and oblivious; this Mother's Day was happy and hopeful. With a dash of desperation.
Today I have been a little sad because it was this day last year that Emma started wheezing and we took her to the pediatrician, who sent us to the hospital. It was round about 7:00 pm at the hospital that Emma's eyes rolled back in her head and she turned blue in my arms. God was good to us, though, because she was in a hospital room surrounded by nurses when it happened. See the happy events leading up to this sad day below:
May 5, 2010
May 7, 2010
May 9, 2010
May 10, 2010
PS - Sorry for such a downer blog, especially because I know there are people out there who have it much worse than I do. Tomorrow, tomorrow will be better.
Wednesday, May 4, 2011
Anxiety
Before I forget, here's what happened last year on May 2: my dad and Larry got to see Emma for the first time! Definitely one of the best days of my life.
And here's May 3, 2010 and May 4, 2010.
The anxiety I'm referring to in the title of this blog is something that I shouldn't be worrying about right now...but I am. Some of you may remember that we banked Emma's cord blood that contains her stem cells. Sometime last fall I made contact with the mother of a 5-year-old child with spina bifida...we'll call the little girl Stella (this is one of my favorite little girl names, but Russell doesn't like it). Stella's parents banked her stem cells as well, and they finally found a hospital in northern Mexico (yes, Mexico - I don't know all the details of why) who would implant Stella's stem cells. Stella's mom keeps a blog, and this is the latest that she posted on April 15, 2011:
"I HAVE SOME GREAT NEWS!! "STELLA" IS POTTY TRAINED!! I TOTALLY ATTRIBUTE THIS TO THE STEM CELLS! Prior to stem cells "Stella" could feel her stool, but could not feel when she had to urinate. Since her stem cell procedure she can now feel when she has to pee. She has gone several days without an accident, and she can hold it until she gets on the potty. She can not fully void her entire bladder and has to push with her hand on her abdomen to help get it all out (a much better alternative to catheterizing). NO MORE DIAPERS!!!!!!!!!!!! I am so very proud of her, she works so hard. This is a MIRACLE!!!!!!!!!
Also, "Stella" has been working hard at strengthening her buttock and hamstring muscles. After a couple of weeks there is a definite difference. These are the muscles that "Stella" needs to strenghten in order to walk more. She still consistenly can take 4-5 steps on her own at at time."
So why does this stress me out a little? Because a long time ago, I felt led to bank Emma's cord blood for purposes just like this. Actually, I didn't feel led - God all but spoke aloud to me. Emma's neurosurgeon has told us that stem cells will not work on spina bifida kids' spinal cords because "that horse has left the barn," meaning that stem cells can only fix DAMAGED nerves, not nerves that were never in tact in the first place. Of course, the world used to be flat, too, right? We have many more critical hurdles to overcome right now before getting into this stem cell business, but it's in the back of my mind. I've gotten pretty good at only worrying about Emma's issues when I absolutely have to, but this one is getting to me because there's not a lot of guidance, support, history, standard operating procedure, or even geographical proximity for this particular "project"! Which means that so much of it would fall on my shoulders. And it sounds like getting support from Dr. Troup might be difficult - and that scares me because I trust him implicitly. My prayer for now is that a few more kids will get this treatment before Emma would be eligible so that there will be more results (and hopefully success!). Stella was the first one to receive the treatment in Mexico, and her mom was going to work on getting it several other kids involved. So anyway, that's what's been on my mind.
Monday night, Emma went to sleep at 8:45 and woke up at 5:30 am Tuesday morning. Not crying, not whining, but talkingtalkingjabberingjabberingtalkingtalking. With the BiPAP mask on, which I imagine can't be easy. I talked to my mom a little after 9:00 Tuesday morning, and she was still going strong. I'm afraid for me and Russell's sake that the mask is giving her better sleep, resulting in earlier wake times!
So, moving on to a much more pleasant topic: Emma crawled tonight! More than army crawling, but not quite up on her hands. She crawled on her knees and elbows, which counts, if you ask me. And I'm the mom. So I'm right.
We, unfortunately, didn't get exciting video because it totally came out of the blue. But we did get some video of something pretty funny that she has done for a while now, but she's been doing it with more gusto lately. My mom says she has a temper...and OF COURSE she has a temper. A few older family members who are no longer with us were notorious for their tempers....and they shall remain nameless. This 3-minute video is quite representative of a typical day with Emma - staring and waving at a camera (and Daddy), ignoring you when you want her to do something until SHE'S ready to do it, being inquisitive and determined, talking and grunting in her own language, clapping and doing touchdowns, and pushing Mommy/Nan/Daddy's face out of the way. All of that, in a 3-minute nutshell. And yes, that IS the Braves game in the background. I think it was the Braves. I was too busy taking care of our child to pay attention to baseball. If Russell really reads the blog like he says he does, that remark will get a rise out of him.
Tomorrow morning is Emma's swallow study to establish a baseline swallowing ability before she starts her VitalStim therapy. I feel like she's had 20 of these (I think it's actually only about 3), so I'm not all that nervous about the procedure...it's just hard to actually see liquid start to go towards her lungs in real time on a tv screen. So anyway, hopefully, she'll have improved a little on her own since the last swallow study.
That's it for tonight...long entry. That means it's bedtime.
And here's May 3, 2010 and May 4, 2010.
The anxiety I'm referring to in the title of this blog is something that I shouldn't be worrying about right now...but I am. Some of you may remember that we banked Emma's cord blood that contains her stem cells. Sometime last fall I made contact with the mother of a 5-year-old child with spina bifida...we'll call the little girl Stella (this is one of my favorite little girl names, but Russell doesn't like it). Stella's parents banked her stem cells as well, and they finally found a hospital in northern Mexico (yes, Mexico - I don't know all the details of why) who would implant Stella's stem cells. Stella's mom keeps a blog, and this is the latest that she posted on April 15, 2011:
"I HAVE SOME GREAT NEWS!! "STELLA" IS POTTY TRAINED!! I TOTALLY ATTRIBUTE THIS TO THE STEM CELLS! Prior to stem cells "Stella" could feel her stool, but could not feel when she had to urinate. Since her stem cell procedure she can now feel when she has to pee. She has gone several days without an accident, and she can hold it until she gets on the potty. She can not fully void her entire bladder and has to push with her hand on her abdomen to help get it all out (a much better alternative to catheterizing). NO MORE DIAPERS!!!!!!!!!!!! I am so very proud of her, she works so hard. This is a MIRACLE!!!!!!!!!
Also, "Stella" has been working hard at strengthening her buttock and hamstring muscles. After a couple of weeks there is a definite difference. These are the muscles that "Stella" needs to strenghten in order to walk more. She still consistenly can take 4-5 steps on her own at at time."
So why does this stress me out a little? Because a long time ago, I felt led to bank Emma's cord blood for purposes just like this. Actually, I didn't feel led - God all but spoke aloud to me. Emma's neurosurgeon has told us that stem cells will not work on spina bifida kids' spinal cords because "that horse has left the barn," meaning that stem cells can only fix DAMAGED nerves, not nerves that were never in tact in the first place. Of course, the world used to be flat, too, right? We have many more critical hurdles to overcome right now before getting into this stem cell business, but it's in the back of my mind. I've gotten pretty good at only worrying about Emma's issues when I absolutely have to, but this one is getting to me because there's not a lot of guidance, support, history, standard operating procedure, or even geographical proximity for this particular "project"! Which means that so much of it would fall on my shoulders. And it sounds like getting support from Dr. Troup might be difficult - and that scares me because I trust him implicitly. My prayer for now is that a few more kids will get this treatment before Emma would be eligible so that there will be more results (and hopefully success!). Stella was the first one to receive the treatment in Mexico, and her mom was going to work on getting it several other kids involved. So anyway, that's what's been on my mind.
Monday night, Emma went to sleep at 8:45 and woke up at 5:30 am Tuesday morning. Not crying, not whining, but talkingtalkingjabberingjabberingtalkingtalking. With the BiPAP mask on, which I imagine can't be easy. I talked to my mom a little after 9:00 Tuesday morning, and she was still going strong. I'm afraid for me and Russell's sake that the mask is giving her better sleep, resulting in earlier wake times!
So, moving on to a much more pleasant topic: Emma crawled tonight! More than army crawling, but not quite up on her hands. She crawled on her knees and elbows, which counts, if you ask me. And I'm the mom. So I'm right.
We, unfortunately, didn't get exciting video because it totally came out of the blue. But we did get some video of something pretty funny that she has done for a while now, but she's been doing it with more gusto lately. My mom says she has a temper...and OF COURSE she has a temper. A few older family members who are no longer with us were notorious for their tempers....and they shall remain nameless. This 3-minute video is quite representative of a typical day with Emma - staring and waving at a camera (and Daddy), ignoring you when you want her to do something until SHE'S ready to do it, being inquisitive and determined, talking and grunting in her own language, clapping and doing touchdowns, and pushing Mommy/Nan/Daddy's face out of the way. All of that, in a 3-minute nutshell. And yes, that IS the Braves game in the background. I think it was the Braves. I was too busy taking care of our child to pay attention to baseball. If Russell really reads the blog like he says he does, that remark will get a rise out of him.
Tomorrow morning is Emma's swallow study to establish a baseline swallowing ability before she starts her VitalStim therapy. I feel like she's had 20 of these (I think it's actually only about 3), so I'm not all that nervous about the procedure...it's just hard to actually see liquid start to go towards her lungs in real time on a tv screen. So anyway, hopefully, she'll have improved a little on her own since the last swallow study.
That's it for tonight...long entry. That means it's bedtime.
Sunday, May 1, 2011
A little farther each day
Here's a quick video of Emma's recent army crawling success. She's getting a little better at it every day. She gets kinda whiny and annoyed after covering ground but still not reaching her target, whatever that may be.
We took Emma back to church this morning, and I left her crying. I'm not sure how long she cried, but they eventually got her calmed down by strolling her outside. Then she would cry when they attempted to bring her INside. She finally took a nap for about 45 minutes outside in the stroller. So I guess you could say that she did better than last week, but not a whole lot.
Emma and Daddy are taking a nap together right now, and I'd love to join them. I'm actually getting sleepy just sitting here typing. Sweet Baby Emma awoke at 6:30 this morning jabbering from the moment her little eyes opened. But, alas, no nap for me - there are groceries to buy and errands to run. Thankfully, we have supper club tonight with 2 other couples in our Sunday School class - always a good time.
And on this date in 2010
We took Emma back to church this morning, and I left her crying. I'm not sure how long she cried, but they eventually got her calmed down by strolling her outside. Then she would cry when they attempted to bring her INside. She finally took a nap for about 45 minutes outside in the stroller. So I guess you could say that she did better than last week, but not a whole lot.
Emma and Daddy are taking a nap together right now, and I'd love to join them. I'm actually getting sleepy just sitting here typing. Sweet Baby Emma awoke at 6:30 this morning jabbering from the moment her little eyes opened. But, alas, no nap for me - there are groceries to buy and errands to run. Thankfully, we have supper club tonight with 2 other couples in our Sunday School class - always a good time.
And on this date in 2010
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