I know I have mentioned that Emma's swallowing problems are due to the Chiari II malformation (compression) of her cerebellum. The plan is still on for decompression of this malformation sometime in the later spring. Children with this malformation respond differently - if the Chiari actually causes problems, the kids are called symptomatic. These symptoms can range from the most serious (episodes of severe central apnea where kids are completely unable to begin breathing on their own again) to mild (some swallowing and food texture issues that they generally grow out of). Emma's issues have landed somewhere in the middle.
Recently, I have read about some other kids' experiences with symptomatic Chiari, and one thing that stood out to me is called breath-holding. It's where kids sometimes stop breathing temporarily when they sleep (don't get it confused with sleep apnea - not really the same). Sometimes these kids start breathing on their own again with no assistance, some kids sleep with oxygen (how, I don't know, but it prevents them from having apneic episodes), and some kids start breathing again, but the whole to-do wakes them up. I have noticed in the past that Emma tends to...well, hold her breath. It goes something like this:
Inhale.
Exhale.
Inhale.
Exhale.
Inhale.
Exhalethentakeadeepbreath.
She doesn't do it all the time, but she's done it enough for me to notice it the last couple of months.
It wasn't until I read about breath-holding that it occurred to me that this could be what Emma is doing. She's not on an apnea monitor, so we don't actually know if this qualifies as an apneic episode. Apnea is one of the things Dr. Troup asked us to be on the lookout for. I called him today and spoke with his new nurse (we will miss Vicki, but she's moving on to bigger things for her career). His new nurse is NIKKI! She was one of Emma's nurses in the PICU, and we simply love her. She gave Emma her first tub bath. It's so wonderful to have someone who knows Emma taking care of her. When I said, "I may be paranoid, but I just wanted to check," Nikki replied, "Um, after what you've been through and everything Emma experienced in the PICU, you have every right to call." How reassuring to know that even with a major staff change, Emma is still so well cared for. I told Nikki that I didn't even know if it was enough to set off an apnea monitor, but she said it probably was because they're very sensitive. Great. ANYWAY. Dr. Troup wanted to make sure Emma didn't have a nasty virus or flu (this can cause apnea in babies, even ones without spina bifida); next step: Dr. Gault. I know nothing about Dr. Gault, except that Nikki said he's their referred sleep doctor, and he's a great person to have in our arsenal. I should be getting a phone call from his office soon about testing Emma. I sure hope he plans to come to our house at midnight, because that's about the only time he's guaranteed to find a sleeping Emma...CERTAINLY not during the day. If Emma has to sleep in a hospital crib again, sooner than I anticipated...ok, can't go there. One step at a time.
So I ask for your prayers - prayers that I'm being paranoid. Isn't it funny the things we ask God? God, please make me paranoid. I would rather over-analyze than my child be sick. Please let Emma's pauses actually be normal pauses in breathing. I can't find enough information to tell me exactly how long a breath-holding breath lasts.
And lastly, Emma cried for the entire 45 minutes at therapy today, with me holding her, sitting with her, walking out of the gym completely, sitting behind her where she couldn't see me, etc. You name it, we tried it. She's just got a MAJOR attitude and doesn't want to work...and occupational therapy is just playing with toys! After therapy was over and we were in the lobby, Emma was smiling and having a grand time. So she and I casually walked back into the gym. It took her about 4 seconds to look around before she started whimpering. Emma loves being outside, and the therapists said that they do therapy outside in the spring and summer. I've got news for them: we'll bundle that child up like an eskimo, and I'll drag every last one of them out there if it means we can actually get a real therapy session in. Attitude. Pure attitude. We've got our hands full already.
Monday, January 31, 2011
Sunday, January 30, 2011
Chuckles from heaven
I mentioned in my last post that Emma has been having some separation anxiety, especially at OT/PT. Russell and I both went to therapy on Friday to check out that particular situation, as well as to just check in on what they're doing with Emma now that she's a little older. Brief synopsis: Emma cried when she realized she was going to be sitting on the mat. She knew EXACTLY what she was there for. When I sat with her, she didn't reach for me, but cried. She cried huge tears and even lost her breath and turned blue. Then Russell said, here, let me try. She cried with him, too. Conclusion? It's not separation anxiety, it's attitude. And that's where our grandmothers come in. My mom's mom had more attitude than you can imagine. She was a tough, tough lady. Luckily, she loved her grandchildren, especially when we were well-behaved. Russell's Mama Dot had a good bit of attitude, too, but she wasn't quite as mean-spirited as my grandmother. So I'm sure the two of them are getting a kick out of Emma's moments of defiance. Eventually, Emma stopped crying and did her OT just fine. When it was time for a little physical therapy, she was really exhausted, so that part didn't go so well. So yes, maybe she does have some separation issues...but at therapy, she just doesn't want to work!
So far, we've had a nice relaxing weekend. We're going to get Emma's big girl car seats installed this week probably, and if I can get my act together this afternoon, I'm going to lug down her big girl high chair and assemble it. Here's a fun game: leave a comment with your guess at how long I'll be able to assemble it myself without Russell stepping in. He has really enjoyed assembling toys, strollers, chairs, etc., and I don't have a snowball's chance in you-know-where of getting to assemble something myself, haha. But that's ok, I love having a hands-on husband. What a blessing.
Oh, one quick note: there are numerous advantages to having a child become the love of your life, but this weekend we discovered a new one: the tax break! We did our taxes this week and weekend, and WOW! Much better than last year! Thanks, Emma :) Now, if that little angel could somehow get our house sold...
So far, we've had a nice relaxing weekend. We're going to get Emma's big girl car seats installed this week probably, and if I can get my act together this afternoon, I'm going to lug down her big girl high chair and assemble it. Here's a fun game: leave a comment with your guess at how long I'll be able to assemble it myself without Russell stepping in. He has really enjoyed assembling toys, strollers, chairs, etc., and I don't have a snowball's chance in you-know-where of getting to assemble something myself, haha. But that's ok, I love having a hands-on husband. What a blessing.
Oh, one quick note: there are numerous advantages to having a child become the love of your life, but this weekend we discovered a new one: the tax break! We did our taxes this week and weekend, and WOW! Much better than last year! Thanks, Emma :) Now, if that little angel could somehow get our house sold...
Thursday, January 27, 2011
A big day at Shriner's
I know it's been a while since I've blogged, but not much has been going on around here. Just Emma being her cute, smiley, funny, nap-fighting self. And then...BAM! We went to Shriner's.
Oh, quick note - when Emma went to therapy on Monday afternoon, they didn't let my mom or Mama Jan go back with her because she's going through some separation anxiety. So instead, Emma cried for 45 minutes. I'm not really sure how that's productive, but whatever. They apparently put Emma in a stander for a little while...and now on to the Shriner's appointment...
Emma's Shriner's appointment on Tuesday was supposed to be a pretty routine (or so we thought) appointment with Dr. Pete, the orthopedist. The primary reason we were there was for him to check on her right foot - it has the tendency to point down and in. He said the #1 thing we can do for it is to stretch it the opposite direction - up and out; #2 is getting her standing in AFO's (ankle-foot orthotics); #3 is surgery to clip the tendons along the back of her heel (surely not the big Achilles tendon, but no need to worry about that now). So #1 is accomplished easily enough. #2 is what occupied the rest of our day. (Emma's appointment ended up lasting 4 hours.) Dr. Pete thought at first that Emma would need a parapodium - I had never heard of this before, as most kids are in standers. I'm still not sure I know the precise difference, but I'm sure I will soon...I have some ideas, but, again, not something I need to worry about today. Here are pictures of the two...first, a parapodium:
Next, a stander:
No offense to those kids, but I'm pretty sure that these apparatuses look much cuter when there's a little blond-haired, blue-eyed girl with glasses and a bow in her hair standing in them.
Anyway, Dr. Pete had one of the Shriner's physical therapists come down to get her second opinion on whether Emma should have a parapodium or a stander. This therapist was WONDERFUL, and, long story short, she spoke with Emma's weekly therapist. The two of them decided that Emma should probably get a stander and that we need to wait a couple more months. Emma's not the best at sitting on her own, so she needs to be able to do that first. Part of her problem is that her fat knees won't bend, so it's a little harder for her to balance sitting down. Don't misunderstand me - she CAN bend them, but it's difficult when she sits because they're so chubby!
The other big event of our Shriner's visit is that we got Emma fitted for her AFO's, and they'll be in in two weeks. Here's a picture of what AFO's look like:
As you can see, they will fit over her feet like a boot to kind of bend her feet and ankles to the correct position for standing. However, Emma's will not be white - they will be dalmation print with pink straps, of course. They didn't have a great number of options to choose from, but my daughter HAS to have a little pizzazz.
I'm going to start going to physical therapy and occupational therapy once a week. Emma has it twice a week, and my mom and Mama Jan take her. But I think it's time that I start going, too, to keep an eye on things and see what exactly they're doing with her. I may be able to give them a little input on how she's developing, too. Now that things are getting serious (AFO's, stander, REALLY working on unsupported sitting), I just feel like I need to be there.
Ich, after all that medical talk, we need to lighten it up a little - Emma is babbling a lot now. All kinds of sounds are coming out of her mouth. The most common one is Mamamamamamamama. Ha. If she's going to be a daddy's girl, at least her first word will probably be Mama. She says Dada, Mama, Nanananananan (which we hope will be Nan), but she doesn't identify us with those words yet. She's semi waving (my mom believes more than I do that Emma knows what she's doing when she's waving), and she's pulling her glasses off the instant she realizes that they're there for her enjoyment.
Now I need to plug something. There's a school here in Greenville County called The Washington Center. This is a center for physically handicapped and/or mentally handicapped children in Greenville. Not ALL handicapped children go there, just the ones who need a special facility. And it. is. amazing. The staff are simply wonderful, and the kids are a true inspiration. You won't see as many smiles in a regular (and bigger) elementary school than you will see on the faces of the kids at The Washington Center. If you're from around here, you may know that our District's budget has been cut by 10's of millions of dollars over the past few years. That affects all kids, obviously, but it really makes me sad that it affects THESE kids. The Washington Center PTA has started an annual Walk N Roll event in April. This year it's April 9 at ICAR in Greenville. I assume it will be similar to Walk N Rolls of years past: (1) it's a one mile walk/run/roll, and all proceeds will benefit The Washington Center; (2) registration includes a t-shirt; (3) Carol Goldsmith hosted it last year. I'm not sure how much registration is. I am impressed by the transparency of the PTA - they actually announce the grand total of the funds they raised (believe me, this is rare for a PTA to do). Last year, they raised around $24,000! So please mark your calendars for April 9 and come walk a mile for a great cause...I promise you, seeing these delightful children is worth so much more than the money you pay and the steps you take. Keep going to The Washington Center website as it gets closer to April 9 for updates. They also accept corporate sponsors. We are planning on being there, too, of course, unless Dr. Troup decides it's surgery time. Here's a snippet from their PTA newsletter about the uses of the funds:
With last year’s success of its 4th annual Walk n’ Roll, we were able to supply crucial funding for our school this year. A record nine grants were awarded to teachers for special projects in their classrooms. We were also able to allot each classroom $150 for supplies for the new school year. In addition, the PTA board determined that each child’s class would receive a $40 per child funding allotment for activities throughout the school year. The PTA also provides funding for buses, staff appreciation, office support, and other vital and one-time projects. As you can see, our Walk n’ Roll event in April is of the utmost importance!
In closing, here are some pics of our little cutie:
Oh, quick note - when Emma went to therapy on Monday afternoon, they didn't let my mom or Mama Jan go back with her because she's going through some separation anxiety. So instead, Emma cried for 45 minutes. I'm not really sure how that's productive, but whatever. They apparently put Emma in a stander for a little while...and now on to the Shriner's appointment...
Emma's Shriner's appointment on Tuesday was supposed to be a pretty routine (or so we thought) appointment with Dr. Pete, the orthopedist. The primary reason we were there was for him to check on her right foot - it has the tendency to point down and in. He said the #1 thing we can do for it is to stretch it the opposite direction - up and out; #2 is getting her standing in AFO's (ankle-foot orthotics); #3 is surgery to clip the tendons along the back of her heel (surely not the big Achilles tendon, but no need to worry about that now). So #1 is accomplished easily enough. #2 is what occupied the rest of our day. (Emma's appointment ended up lasting 4 hours.) Dr. Pete thought at first that Emma would need a parapodium - I had never heard of this before, as most kids are in standers. I'm still not sure I know the precise difference, but I'm sure I will soon...I have some ideas, but, again, not something I need to worry about today. Here are pictures of the two...first, a parapodium:
Next, a stander:
No offense to those kids, but I'm pretty sure that these apparatuses look much cuter when there's a little blond-haired, blue-eyed girl with glasses and a bow in her hair standing in them.
Anyway, Dr. Pete had one of the Shriner's physical therapists come down to get her second opinion on whether Emma should have a parapodium or a stander. This therapist was WONDERFUL, and, long story short, she spoke with Emma's weekly therapist. The two of them decided that Emma should probably get a stander and that we need to wait a couple more months. Emma's not the best at sitting on her own, so she needs to be able to do that first. Part of her problem is that her fat knees won't bend, so it's a little harder for her to balance sitting down. Don't misunderstand me - she CAN bend them, but it's difficult when she sits because they're so chubby!
The other big event of our Shriner's visit is that we got Emma fitted for her AFO's, and they'll be in in two weeks. Here's a picture of what AFO's look like:
As you can see, they will fit over her feet like a boot to kind of bend her feet and ankles to the correct position for standing. However, Emma's will not be white - they will be dalmation print with pink straps, of course. They didn't have a great number of options to choose from, but my daughter HAS to have a little pizzazz.
I'm going to start going to physical therapy and occupational therapy once a week. Emma has it twice a week, and my mom and Mama Jan take her. But I think it's time that I start going, too, to keep an eye on things and see what exactly they're doing with her. I may be able to give them a little input on how she's developing, too. Now that things are getting serious (AFO's, stander, REALLY working on unsupported sitting), I just feel like I need to be there.
Ich, after all that medical talk, we need to lighten it up a little - Emma is babbling a lot now. All kinds of sounds are coming out of her mouth. The most common one is Mamamamamamamama. Ha. If she's going to be a daddy's girl, at least her first word will probably be Mama. She says Dada, Mama, Nanananananan (which we hope will be Nan), but she doesn't identify us with those words yet. She's semi waving (my mom believes more than I do that Emma knows what she's doing when she's waving), and she's pulling her glasses off the instant she realizes that they're there for her enjoyment.
Now I need to plug something. There's a school here in Greenville County called The Washington Center. This is a center for physically handicapped and/or mentally handicapped children in Greenville. Not ALL handicapped children go there, just the ones who need a special facility. And it. is. amazing. The staff are simply wonderful, and the kids are a true inspiration. You won't see as many smiles in a regular (and bigger) elementary school than you will see on the faces of the kids at The Washington Center. If you're from around here, you may know that our District's budget has been cut by 10's of millions of dollars over the past few years. That affects all kids, obviously, but it really makes me sad that it affects THESE kids. The Washington Center PTA has started an annual Walk N Roll event in April. This year it's April 9 at ICAR in Greenville. I assume it will be similar to Walk N Rolls of years past: (1) it's a one mile walk/run/roll, and all proceeds will benefit The Washington Center; (2) registration includes a t-shirt; (3) Carol Goldsmith hosted it last year. I'm not sure how much registration is. I am impressed by the transparency of the PTA - they actually announce the grand total of the funds they raised (believe me, this is rare for a PTA to do). Last year, they raised around $24,000! So please mark your calendars for April 9 and come walk a mile for a great cause...I promise you, seeing these delightful children is worth so much more than the money you pay and the steps you take. Keep going to The Washington Center website as it gets closer to April 9 for updates. They also accept corporate sponsors. We are planning on being there, too, of course, unless Dr. Troup decides it's surgery time. Here's a snippet from their PTA newsletter about the uses of the funds:
With last year’s success of its 4th annual Walk n’ Roll, we were able to supply crucial funding for our school this year. A record nine grants were awarded to teachers for special projects in their classrooms. We were also able to allot each classroom $150 for supplies for the new school year. In addition, the PTA board determined that each child’s class would receive a $40 per child funding allotment for activities throughout the school year. The PTA also provides funding for buses, staff appreciation, office support, and other vital and one-time projects. As you can see, our Walk n’ Roll event in April is of the utmost importance!
In closing, here are some pics of our little cutie:
Yep, still just two teeth since September.
Maybe I'm partial, but I think she looks like a china doll in this picture.
Wednesday, January 12, 2011
Happy birthday to me!
As many of you know, I had the day off on my birthday, due to a humongous snowstorm that we had here in South Carolina. A free day off with my hubby, puppy, and precious baby - now that's what a birthday's supposed to be. We started to get a little stir-crazy last night, and there weren't many places open for dinner, except for Old Faithful: Happy China on Verdae. They're always open in bad weather. Even though it's not far from our house, it wasn't easy. Parts of the road were pretty icy, but we made it ok. Before we got Emma totally bundled up, she looked confused as to why she wearing this huge bulky sweater and mittens.
And even more confused as to why it was so daggone cold outside and why she couldn't move her appendages...
When we got there, this is what the restaurant looked like:
Until I arrived with the children:
And even more confused as to why it was so daggone cold outside and why she couldn't move her appendages...
When we got there, this is what the restaurant looked like:
Until I arrived with the children:
Goofballs, both of them.
When we left Happy China, there were 5 other parties seated, and quite a few to-go orders had been processed. I'm glad that their hard work in the bad weather paid off - they're such nice people. Oh by the way, for those of you know who he is, I once saw George Stathakis eating there - if that's where he eats Chinese, you know it's good. Best egg rolls in town.
So anyway, I had the most tremendously blessed birthday. I am so happy to have 4 days off (so far) this week because of the snow and ice - I got to spend two of them with Russell and all of them with Emma. I keep thinking back to my birthday last year when I was pregnant and worried about Emma. I still worry about her, but if I'm going to worry on my birthday, at least God blessed with me a precious angel to laugh at, love, squeeze, and kiss this year. What a year it's been. So now on to the next decade...my thirties. The last time I celebrated a decade birthday I was in college...it's incredible to think of all the things that happened in my twenties. A LOT. It makes me realize that I have a lot of life left to live. God has blessed me and taught me more than I could have ever imagined. So where will I be ten years from NOW??
Well, enough pondering and deep thought. Russell was very upset to go back to work and leave Emma today after spending Saturday through Tuesday with her. When he came home from work, she was napping. She woke up crying a little, and we usually let her cry for a few minutes to see if she'll go back to sleep. Not tonight. Russell was certain she was up for good and promptly got the hug he'd been missing all day.
I officially said goodbye to Christmas (tissue, please) by making the gingerbread man that was gifted to us by Holly and Kenny.
And then I ate his head.
Monday, January 10, 2011
Wordless Monday
So it's not exactly wordless per se...other people with blogs have Wordless Wednesday. Well today is Wordless Monday. No alliteration, but just go with it.
Can you guess where I took this pic?
Hugging on Holly (that's alliterative! ok, now I'm just making up words...) Emma isn't as miserable as she looks - her hat is just creeping down into her eyes, and she was bound too tightly (like the kid in A Christmas Story) to be able to mess with it.
Word to your mom.
Russell's new cooler at the beginning of the snow day...
Russell's new cooler at the end of the snow day (please notice the big gash in the ice on the right where Russell thought he could walk on it..and promptly fell in it)
And finally - a video of Lola doing the bunny-hop in the snow.
Sunday, January 9, 2011
Snow for Emma!
So Emma's first Christmas was a white one, and now she's getting even more snow! They say it's going to be a big one, and we'll be sure to get pictures of Emma in it! Don't worry, we won't keep her out there that long - we certainly don't want a sick baby again. Emma has fully recovered from her recent cold, and she's back to her old self again. For some reason, she stopped drooling all the time when she was suffering from the cold, but the waterfall is back now. She's still only got 2 teeth, and there don't seem to be any more in our near future, despite the drooling.
Emma hasn't had any more of those scary episodes like I blogged about last time, but it did make me think a lot this week...and gave me a few more reasons to be afraid about our future with her. But I'm trying really hard not to dwell on all the what-if's - I could lose sleep for years thinking about all those what-if's. I truly am on an emotional roller coaster, and I'm currently on the way back up to the almost perfect days of optimism and enjoying each day on its own without worrying about the future.
On a lighter note, we went out to eat with Russell's family Saturday night, and Emma was a complete angel. She loves to be in public places, and she really enjoys sitting in a high chair. Her sweet 3-year-old cousin, Mason, wanted to sit next to her in both restaurants we went to (long story). I know I've said it before, but I can't say it enough - he is such a sweet little boy with Emma. He loves to watch her and kiss her cheek and pat her head. He was helpful whenever she dropped the block she was playing with, too. Emma is just so blessed to have such a precious cousin. Russell's grandfather also came to dinner with us, and he loved on Emma, too. She flashed him some adorable little two-toothed smiles, which I know warmed his heart a little. I hope that he enjoyed being with all of us, but especially with his great-grandchildren - he's had a rough time since losing Grandma before Christmas.
Emma is now saying all kinds of syllables, and it seems like she picks up a new babble every day. Today she decided to start popping her lips - putting them together and then smacking them apart. In addition to that, she's saying ma, da, ta, dee, hey, ha, kay, and all combinations of those individual noises. It cracks us up when it sounds like she's saying, "Hey Da!" to Russell. Sometimes she's quiet, sometimes she's loud...but they're all the cutest sounds I've ever heard. She can't identify me or Russell as Mama or Dada, but we all know that she will call Russell Dada first. She's a daddy's girl more than ever. One of these days Russell will learn that he can't come in the room after work or after being gone for a while without picking her up. If he doesn't love on her right then, Emma's cries are simply heartbreaking.
Well I'm off to bed now and excited to wake up to beautiful snow!
Emma hasn't had any more of those scary episodes like I blogged about last time, but it did make me think a lot this week...and gave me a few more reasons to be afraid about our future with her. But I'm trying really hard not to dwell on all the what-if's - I could lose sleep for years thinking about all those what-if's. I truly am on an emotional roller coaster, and I'm currently on the way back up to the almost perfect days of optimism and enjoying each day on its own without worrying about the future.
On a lighter note, we went out to eat with Russell's family Saturday night, and Emma was a complete angel. She loves to be in public places, and she really enjoys sitting in a high chair. Her sweet 3-year-old cousin, Mason, wanted to sit next to her in both restaurants we went to (long story). I know I've said it before, but I can't say it enough - he is such a sweet little boy with Emma. He loves to watch her and kiss her cheek and pat her head. He was helpful whenever she dropped the block she was playing with, too. Emma is just so blessed to have such a precious cousin. Russell's grandfather also came to dinner with us, and he loved on Emma, too. She flashed him some adorable little two-toothed smiles, which I know warmed his heart a little. I hope that he enjoyed being with all of us, but especially with his great-grandchildren - he's had a rough time since losing Grandma before Christmas.
Emma is now saying all kinds of syllables, and it seems like she picks up a new babble every day. Today she decided to start popping her lips - putting them together and then smacking them apart. In addition to that, she's saying ma, da, ta, dee, hey, ha, kay, and all combinations of those individual noises. It cracks us up when it sounds like she's saying, "Hey Da!" to Russell. Sometimes she's quiet, sometimes she's loud...but they're all the cutest sounds I've ever heard. She can't identify me or Russell as Mama or Dada, but we all know that she will call Russell Dada first. She's a daddy's girl more than ever. One of these days Russell will learn that he can't come in the room after work or after being gone for a while without picking her up. If he doesn't love on her right then, Emma's cries are simply heartbreaking.
Well I'm off to bed now and excited to wake up to beautiful snow!
Wednesday, January 5, 2011
Scary moment
Emma has been cruising the last few days, still suffering a little from the lingering effects of her cold, but nothing too bad. She's been VERY happy and chatty, and we couldn't ask for a better baby.
We did have a scary moment last night (followed by a scary comment today that I'll mention in a bit). I was at my parents' house right after work with just Emma and my mom. Emma was in my lap, and we were playing with a little purse toy. All of a sudden, out of the complete blue, Emma started crying like someone was trying to break her arm! My mom picked her up, and we could see her throat was going to close up like it used to do this summer. Emma's face and lips turned blue, and her eyes started rolling back in her head. We were talking to her and bouncing her and blowing in her face to try to distract her, and she came out of this little "fit" after about 10 or 15 seconds. (This doesn't sound like a very long time, but I hope none of you have to see how long it FEELS when it's your child.) She was a little woozy and then went right back to smiling again. Today Emma has been choking a lot more and hasn't been as chatty as usual. So we're keeping an eye on her and praying that tomorrow will be much, much better.
The comment that really sent me into a tailspin was from a nurse who came to visit her today at my parents' house. My mom explained the episode from last night, and the nurse said it sounded like she could be having petit mal seizures. I won't go into the details of what this particular type of seizure is like because...well, does it matter? No seizure is a good seizure. I have looked on the internet (your best and worst friend), and I've convinced myself that she is NOT, in fact, having petit mal seizures. If all those episodes with her this summer weren't seizures, last night's event certainly wasn't either. Still. Scary. And this isn't what I need after being with Emma for 3 weeks over Christmas - being without her this week is hard enough! If she doesn't seem more on the up and up tomorrow, I'll be calling the neuro.
So please pray that Emma improves this week and that whatever happened last night was some sort of isolated incident that we don't have to deal with again. God has blessed us tremendously with a sweet, happy little girl - life with her has been so delightful lately that I'm so afraid things are going to plummet. I know that's not how God works, but as the mother of a child with issues, your fears just get the best of you sometimes.
We did have a scary moment last night (followed by a scary comment today that I'll mention in a bit). I was at my parents' house right after work with just Emma and my mom. Emma was in my lap, and we were playing with a little purse toy. All of a sudden, out of the complete blue, Emma started crying like someone was trying to break her arm! My mom picked her up, and we could see her throat was going to close up like it used to do this summer. Emma's face and lips turned blue, and her eyes started rolling back in her head. We were talking to her and bouncing her and blowing in her face to try to distract her, and she came out of this little "fit" after about 10 or 15 seconds. (This doesn't sound like a very long time, but I hope none of you have to see how long it FEELS when it's your child.) She was a little woozy and then went right back to smiling again. Today Emma has been choking a lot more and hasn't been as chatty as usual. So we're keeping an eye on her and praying that tomorrow will be much, much better.
The comment that really sent me into a tailspin was from a nurse who came to visit her today at my parents' house. My mom explained the episode from last night, and the nurse said it sounded like she could be having petit mal seizures. I won't go into the details of what this particular type of seizure is like because...well, does it matter? No seizure is a good seizure. I have looked on the internet (your best and worst friend), and I've convinced myself that she is NOT, in fact, having petit mal seizures. If all those episodes with her this summer weren't seizures, last night's event certainly wasn't either. Still. Scary. And this isn't what I need after being with Emma for 3 weeks over Christmas - being without her this week is hard enough! If she doesn't seem more on the up and up tomorrow, I'll be calling the neuro.
So please pray that Emma improves this week and that whatever happened last night was some sort of isolated incident that we don't have to deal with again. God has blessed us tremendously with a sweet, happy little girl - life with her has been so delightful lately that I'm so afraid things are going to plummet. I know that's not how God works, but as the mother of a child with issues, your fears just get the best of you sometimes.
Saturday, January 1, 2011
A food she doesn't like
Chicken and chicken broth:
We smelled this nasty stuff again later when she threw up all over her naked self, right after her bath.
PS - She will only finish chicken if it's mixed with something else - tonight a mixture of pears and chicken did the trick. Gross, I know, but sometimes you're desperate.
We smelled this nasty stuff again later when she threw up all over her naked self, right after her bath.
PS - She will only finish chicken if it's mixed with something else - tonight a mixture of pears and chicken did the trick. Gross, I know, but sometimes you're desperate.
Learning how to put Emma into motion
So I'm learning a little more about using my camera, video camera, AND movie software. I figured out how to make a digital flipbook, basically, of some pictures of Emma that Russell took in quick succession, thanks to our new camera.
Oh by the way, one more thing about Emma's glasses. A lot of people have asked if they bother and if she takes them off all the time. They don't seem to bother her, but yes she does take them off all the time. Because she's busy. And gets bored easily. So if her hands aren't occupied with something else for one second, she reaches up, yanks off the glasses in a flash, and promptly plays with them (puts them in her mouth or runs the lenses along the countertop or tray because they make a cool noise).
Emma's enjoying her sports Saturday - while Daddy watches football, Emma's busy "reading" the latest issue of Sports Illustrated:
Oh by the way, one more thing about Emma's glasses. A lot of people have asked if they bother and if she takes them off all the time. They don't seem to bother her, but yes she does take them off all the time. Because she's busy. And gets bored easily. So if her hands aren't occupied with something else for one second, she reaches up, yanks off the glasses in a flash, and promptly plays with them (puts them in her mouth or runs the lenses along the countertop or tray because they make a cool noise).
Emma's enjoying her sports Saturday - while Daddy watches football, Emma's busy "reading" the latest issue of Sports Illustrated:
First Hair Cut
We took Emma to get her first hair cut yesterday. She just needed a trim here and there, and Russell and I both had the day off, so we thought it was a good time to go. My wonderful stylist, Holly, did a great job!
(Look at Holly's cute scissor handle bracelet in the above pic!)
Christmas with Emma
I'm going to do a few different blog entries to help organize my thoughts. Interesting how I haven't worked in almost 3 weeks, but I haven't had time to do much of anything...don't the holidays always seem to be GO, GO GO?!
Unfortunately, I don't have a lot of pictures of Emma at Christmas - the result of trying to be in too many places and do too many things in too short of a time. Here's what I've got:
Emma and her sweet cousin Mason:
PS - Mason LOVES Emma. You couldn't ask for a sweeter 3-year-old little boy. He is just so precious with her. I always ask him if he'll change Emma's diaper, and he's off to get the wipes and diaper to help me! He gives her sweet, surprise kisses and pats her gently. I will make sure that Emma knows what a special, loving cousin she has.
Hanging out on Aunt Kathey's bed:
Mason opening up his genawatah (generator) from Uncle Russ and Aunt MB (yes, they make toy generators that even power a light and a moving drill):
Reading with Granddad (sorry for the blurriness - Emma's an active baby):
Emma got tons of toys for Christmas and pretty much loves them all. I had to go buy her a new basket to put some of her toys in - that was MY Christmas present: organization. Her favorite so far is the simplest - hard plastic blocks that nest inside each other. She bangs them around on her Bumbo tray and grabs for them all the time - thanks, Aunt Anissa!
I got lots of awesome gifts for Christmas, but the one that YOU will care about most is my new Canon Rebel camera. It's an awesome professional camera, along with an extra zoom lens that that Russell bought for me. So hopefully the quality of the pictures on the blog will be much better. Again, due to extreme time restraints, I haven't been able to take the time to watch the tutorial DVD to learn how to use it properly and professionally.
The unfortunate side of Christmas this year was that we were all sick and got many of our family members sick as well. Emma woke up with a VERY runny nose the Wednesday before Christmas. Russell and I had sore throats Thursday night, and we were all deep in the throes of a terrible cold by Saturday, Christmas day. Emma is still suffering from the snots a little, 10 days later :( As I type this, she's taking a nap in her crib, and it sounds like she's snoring - but she's actually breathing through the mucus. She's choking and coughing a lot, but she's on the mend and getting a little bit better every day. A new trick she has learned is how to lick the mucus coming out of her nose if we don't wipe it fast enough. Gross.
Speaking of naps in cribs, there hasn't been much opportunity to train Emma to crib-napping, as I claimed I would try to do over this break. Not because I've given in, but because I haven't had a chance/time to "train" her. The blessed nap we're currently experiencing is only happening because she cried in her crib for about 20 minutes. You must be joking...I've jinxed us. She JUST woke up and started crying. Well that was a nice 25 minutes. Russell's on duty.
Emma got her glasses the day before Christmas, and I'm not crazy about them. She looks ok, but just as I predicted, all you really see is the glasses. Yes, she's still cute and pretty and smiley and sweet, but as she grows older, we're getting closer and closer to things about her disability standing out - not being able to sit on her own or crawl yet, not being able to pull herself up or stand, and not being able to walk on her own without a walker. It would be nice if it didn't look like something else was "wrong." In fact, we took her to Rite Aid yesterday, and a lady said, "Aww, look at those glasses! My granddaughter has a lazy eye, too!" Not that a lazy eye is the end of the world, but she doesn't have a lazy eye, thank you. That's what I'm talking about - a stranger sees her for the first time and (1) sees the glasses and (2) thinks lazy eye. I'm just not yet ready for people to see my daughter and first thing, immediately see problems.
On that note, here's a pouty shot of a glasses-clad Emma on her way to get her first hair cut...and see next blog entry for these pictures!
Unfortunately, I don't have a lot of pictures of Emma at Christmas - the result of trying to be in too many places and do too many things in too short of a time. Here's what I've got:
Emma and her sweet cousin Mason:
Hanging out on Aunt Kathey's bed:
Mason opening up his genawatah (generator) from Uncle Russ and Aunt MB (yes, they make toy generators that even power a light and a moving drill):
Reading with Granddad (sorry for the blurriness - Emma's an active baby):
Emma got tons of toys for Christmas and pretty much loves them all. I had to go buy her a new basket to put some of her toys in - that was MY Christmas present: organization. Her favorite so far is the simplest - hard plastic blocks that nest inside each other. She bangs them around on her Bumbo tray and grabs for them all the time - thanks, Aunt Anissa!
I got lots of awesome gifts for Christmas, but the one that YOU will care about most is my new Canon Rebel camera. It's an awesome professional camera, along with an extra zoom lens that that Russell bought for me. So hopefully the quality of the pictures on the blog will be much better. Again, due to extreme time restraints, I haven't been able to take the time to watch the tutorial DVD to learn how to use it properly and professionally.
The unfortunate side of Christmas this year was that we were all sick and got many of our family members sick as well. Emma woke up with a VERY runny nose the Wednesday before Christmas. Russell and I had sore throats Thursday night, and we were all deep in the throes of a terrible cold by Saturday, Christmas day. Emma is still suffering from the snots a little, 10 days later :( As I type this, she's taking a nap in her crib, and it sounds like she's snoring - but she's actually breathing through the mucus. She's choking and coughing a lot, but she's on the mend and getting a little bit better every day. A new trick she has learned is how to lick the mucus coming out of her nose if we don't wipe it fast enough. Gross.
Speaking of naps in cribs, there hasn't been much opportunity to train Emma to crib-napping, as I claimed I would try to do over this break. Not because I've given in, but because I haven't had a chance/time to "train" her. The blessed nap we're currently experiencing is only happening because she cried in her crib for about 20 minutes. You must be joking...I've jinxed us. She JUST woke up and started crying. Well that was a nice 25 minutes. Russell's on duty.
Emma got her glasses the day before Christmas, and I'm not crazy about them. She looks ok, but just as I predicted, all you really see is the glasses. Yes, she's still cute and pretty and smiley and sweet, but as she grows older, we're getting closer and closer to things about her disability standing out - not being able to sit on her own or crawl yet, not being able to pull herself up or stand, and not being able to walk on her own without a walker. It would be nice if it didn't look like something else was "wrong." In fact, we took her to Rite Aid yesterday, and a lady said, "Aww, look at those glasses! My granddaughter has a lazy eye, too!" Not that a lazy eye is the end of the world, but she doesn't have a lazy eye, thank you. That's what I'm talking about - a stranger sees her for the first time and (1) sees the glasses and (2) thinks lazy eye. I'm just not yet ready for people to see my daughter and first thing, immediately see problems.
On that note, here's a pouty shot of a glasses-clad Emma on her way to get her first hair cut...and see next blog entry for these pictures!
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