Here I sit, blogging to distract myself from the fussing coming from Emma's room as she tries to nap with the bipap mask on. If I didn't get busy blogging, I'd either cave in, scoop her up, and snuggle with her, or just fall asleep on the couch myself to the gentle sound of her My First Hymns CD coming through the baby monitor.
So here I sit. Blogging to let you faithful blog-followers know that Emma does not have an MRI tomorrow as previously scheduled. Two doctors' appointments to prep for it and two missed therapies, but no MRI. Sheesh. Emma is on the downslope of a very minor cold, but that's enough to force Dr. Troup to postpone the MRI to some point in the next 30 days. Because Emma has to go under general anesthesia and be intubated, she has to be totally, completely healthy. Aside from the runny nose for the first three hours of the day, Emma has been choking a lot more in the last few days because of all the nasty stuff running down her throat. I can't imagine forcing even more choking on my daughter by making her little throat sore from the breathing tube :(
I ordered the last of Emma's Christmas gifts today, and I'm excited to see what she thinks of her toys. We've been encouraged in the last couple of weeks by what we hope is the beginning of a few words. We have been getting the occasional "bye-bye," and most recently "cake" and "wa-wa" for water. I was under the impression that you aren't supposed to teach kids baby words like wa-wa, but her speech therapist said that for now, it's more important for her to say a word and associate something with it rather than worry with the absolute correct word. Fine with me!
Ok, time to answer some emails and wrap some presents.
Maybe I'll nap on the couch after all.
Tuesday, December 20, 2011
Wednesday, December 14, 2011
Baby It's Cold Inside
As many of you know, Russell and I have faced an onslaught of problems with our new, old house, including natural gas leaks. Prior to last Wednesday night, we had had three leaks. On Wednesday night, I walked in and smelled a particularly strong gas odor in the den. I called the gas company, and...lo and behold....gas leak number four and (drumroll, please) a high carbon monoxide leak. The gas man turned off the gas to the furnace, and there we were. And there we left. We stayed at my parents' house Wednesday night and Thursday night, at the Traywicks' house Friday night, at the Knights' house Saturday night, and back at my parents' on Sunday night. Gypsies, I tell you. Gypsies. Except that we DID have a home to which we returned to unpack and repack. From Wednesday to Monday, we packed AND unpacked 3 people 5 times. I do not suggest that you try this. Especially with a small child.
Big fat THANK YOU THANK YOU THANK YOU to my parents, the Traywicks, and the Knights because this is how cold it was in our house over the weekend:
With the heat turned off completely, it got below 50 during the daytime, and who knows how cold at night. We have a home warranty, so it took a couple days for all that to be worked out, and then we couldn't get our new system until Monday. We didn't pay extra for the new thermostat, but it's the first one that the company has ever installed like this. Right now, the screensaver scrolls through nature and American city scenes, but you can put your memory card in the side and have it scroll your family pictures. Seriously? I was actually able to catch a shot mid-scroll, and the picture on the bottom shows the home screen.
Being warm and back in her own house must have inspired Emma to make a new L sound that she pretty much said all evening Monday night, Tuesday morning, and Tuesday evening. It's like she's trying to say lizard as fast as she can and imitate a lizard with her tongue at the same time. On Tuesday, she entertained various Stein Mart shoppers with this noise. They would look at her and say, "Ohhhh, look how cute! Hey darlin'! How are you?!" And she would answer like this, only l0 times longer and twice as loud:
Taking a look back at last year, Emma has progressed immensely. What a different Christmas we are having this year as opposed to last! Honoring the birth of Christ and the blessing of having Him here on Earth is a little different for me this year. I don't really know how to explain it. Last year, I remember thinking that when God blessed us with the birth of His Son, it had to be bittersweet - God knew what horrors His Son would eventually suffer. Our family also had a much more bleak outlook for our beloved child this time last year. Her prognosis wasn't all that great, and there was so much uncertainty surrounding her medical needs. Emma still has a long way to go, but she has also come so far...much farther than any doctor or nurse expected of her.
Emma has another MRI next Wednesday to compare to the MRI from June. We won't know until January what the results show. Best case scenario, Emma's Chiari malformation has lessened in severity on its own, and the large spinal-fluid-filled syrinx (cyst) along her spinal cord has drained itself. This is all very unlikely, but please pray for that outcome. Isn't it funny how we suddenly pray for results of medical tests to tell us positive news, when a condition or problem has actually been a certain way long before we started praying for results to tell us about it? Anyway, back on track....worst case scenario is that Emma's Chiari malformation has caused her brain stem to drop lower than her fourth vertebrae in her neck (where it was in June), and the syrinx has gotten significantly larger in length and width. They would pretty much schedule an immediate decompression surgery at that point. Literally, brain surgery. (Side note: you know how people say, "You don't have to be a brain surgeon to know that blah blah blah blah"? I'm dying to ask Dr. Troup how he responds if/when people say that to him. He's kind of a goofball and witty, so I'm sure he has a smart reply.) Again, back on track.....Emma's decompression will have to happen sometime. There's no escaping this reality. Apparently, the older she gets, the better she will be able to recover from the surgery. Which is a good thing, considering she will probably have to have more than one decompression. So do we just wish for it to happen in the next few months and get it over with or keep wanting to postpone the inevitable?
So let's take a look back at this time last year:
December 8, 2010
December 8, 2010
December 12, 2010
December 13, 2010
Big fat THANK YOU THANK YOU THANK YOU to my parents, the Traywicks, and the Knights because this is how cold it was in our house over the weekend:
With the heat turned off completely, it got below 50 during the daytime, and who knows how cold at night. We have a home warranty, so it took a couple days for all that to be worked out, and then we couldn't get our new system until Monday. We didn't pay extra for the new thermostat, but it's the first one that the company has ever installed like this. Right now, the screensaver scrolls through nature and American city scenes, but you can put your memory card in the side and have it scroll your family pictures. Seriously? I was actually able to catch a shot mid-scroll, and the picture on the bottom shows the home screen.
Being warm and back in her own house must have inspired Emma to make a new L sound that she pretty much said all evening Monday night, Tuesday morning, and Tuesday evening. It's like she's trying to say lizard as fast as she can and imitate a lizard with her tongue at the same time. On Tuesday, she entertained various Stein Mart shoppers with this noise. They would look at her and say, "Ohhhh, look how cute! Hey darlin'! How are you?!" And she would answer like this, only l0 times longer and twice as loud:
Taking a look back at last year, Emma has progressed immensely. What a different Christmas we are having this year as opposed to last! Honoring the birth of Christ and the blessing of having Him here on Earth is a little different for me this year. I don't really know how to explain it. Last year, I remember thinking that when God blessed us with the birth of His Son, it had to be bittersweet - God knew what horrors His Son would eventually suffer. Our family also had a much more bleak outlook for our beloved child this time last year. Her prognosis wasn't all that great, and there was so much uncertainty surrounding her medical needs. Emma still has a long way to go, but she has also come so far...much farther than any doctor or nurse expected of her.
Emma has another MRI next Wednesday to compare to the MRI from June. We won't know until January what the results show. Best case scenario, Emma's Chiari malformation has lessened in severity on its own, and the large spinal-fluid-filled syrinx (cyst) along her spinal cord has drained itself. This is all very unlikely, but please pray for that outcome. Isn't it funny how we suddenly pray for results of medical tests to tell us positive news, when a condition or problem has actually been a certain way long before we started praying for results to tell us about it? Anyway, back on track....worst case scenario is that Emma's Chiari malformation has caused her brain stem to drop lower than her fourth vertebrae in her neck (where it was in June), and the syrinx has gotten significantly larger in length and width. They would pretty much schedule an immediate decompression surgery at that point. Literally, brain surgery. (Side note: you know how people say, "You don't have to be a brain surgeon to know that blah blah blah blah"? I'm dying to ask Dr. Troup how he responds if/when people say that to him. He's kind of a goofball and witty, so I'm sure he has a smart reply.) Again, back on track.....Emma's decompression will have to happen sometime. There's no escaping this reality. Apparently, the older she gets, the better she will be able to recover from the surgery. Which is a good thing, considering she will probably have to have more than one decompression. So do we just wish for it to happen in the next few months and get it over with or keep wanting to postpone the inevitable?
So let's take a look back at this time last year:
December 8, 2010
December 8, 2010
December 12, 2010
December 13, 2010
Wednesday, December 7, 2011
Emma's latest and greatest toy
Finally, I have a video to show you of Emma's latest, greatest, and favoritest toy! Perhaps what makes it so totally wonderful is that my father-in-law made it with his own two hands, based simply on watching videos of two other kids who have these contraptions.
Let me make a few points about this video first. It was shot on a home improvement day at our house...interpret that to mean that the house is a mess, you will hear a drill in the background, and you will hear my in-laws....because no home improvement day is complete with my super-helpful and sweet mother- and father-in-law. You will also witness a slight temper tantrum that is quickly becoming a several-times-daily-occurrence in our house. Emma LOVES the video camera because it flips open, but we don't let it her play with it....because, well, it's a video camera. It's also a little bit nauseating because I had to keep moving things for Emma and help her over the rugs while filming at the same time. All that to say, if you let her loose with no rugs and no obstacles, Emma LOVES her wheels.
In this next video, Emma displays her awesome new eating skills. She still has a lot of issues that we have to deal with, but she is eating regular food better and better each day. And she's enjoying it more and more each day. She learned pretty quickly how to show us her empty mouth in order to get another bite. All that banging around in the background is Russell cleaning up from dinner. Notice that I'm still feeding Emma her dinner while he cleans up; it takes her FOREVER to eat, but we're seeing some improvement here, too! And poor Lola gets fussed at by all three of us, including Emma. I'm afraid Emma's first full statement will be, "No, Lola!"
Let me make a few points about this video first. It was shot on a home improvement day at our house...interpret that to mean that the house is a mess, you will hear a drill in the background, and you will hear my in-laws....because no home improvement day is complete with my super-helpful and sweet mother- and father-in-law. You will also witness a slight temper tantrum that is quickly becoming a several-times-daily-occurrence in our house. Emma LOVES the video camera because it flips open, but we don't let it her play with it....because, well, it's a video camera. It's also a little bit nauseating because I had to keep moving things for Emma and help her over the rugs while filming at the same time. All that to say, if you let her loose with no rugs and no obstacles, Emma LOVES her wheels.
In this next video, Emma displays her awesome new eating skills. She still has a lot of issues that we have to deal with, but she is eating regular food better and better each day. And she's enjoying it more and more each day. She learned pretty quickly how to show us her empty mouth in order to get another bite. All that banging around in the background is Russell cleaning up from dinner. Notice that I'm still feeding Emma her dinner while he cleans up; it takes her FOREVER to eat, but we're seeing some improvement here, too! And poor Lola gets fussed at by all three of us, including Emma. I'm afraid Emma's first full statement will be, "No, Lola!"
Sunday, December 4, 2011
Pictures, as promised
Most of these pics are of my darling goddaughter, Elsie.
Emma, entertaining herself while I get ready in the morning:
Emma's beautiful long, blonde, and curly-underneath hair:
And finally, a shot of the ACC Championship trophy being brought over to us on Saturday night in Charlotte:
I will have some videos to post soon, but that's for another night. Let me get you caught up on how far we've come in the last year:
November 7, 2010
November 8, 2010
November 15, 2010
November 23, 2010
December 3, 2010
Merry Christmas, and good night!
Emma, entertaining herself while I get ready in the morning:
Emma's beautiful long, blonde, and curly-underneath hair:
And finally, a shot of the ACC Championship trophy being brought over to us on Saturday night in Charlotte:
I will have some videos to post soon, but that's for another night. Let me get you caught up on how far we've come in the last year:
November 7, 2010
November 8, 2010
November 15, 2010
November 23, 2010
December 3, 2010
Merry Christmas, and good night!
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