For photos of the kids, feel free to view my Facebook photo album: http://www.facebook.com/album.php?aid=64662&id=826059556&l=e1d799cba8
We kind of had a "spread out" Christmas this year. We began giving/opening gifts at least a week before Christmas day actually arrived. I guess we were just so excited to get the ball rolling! We received some very generous and thoughtful gifts this year, but it was our children who really scored! lol
A couple of Macho's favorite gifts: a new remote controlled train set and a toy fire truck with rotating ladder, working siren and flashing lights. He's been playing with those non-stop, back and forth for the last 3 days.
A couple of Beauty's favorite gifts: a Minnie Mouse cheerleader doll and an aquadoodle mat. She loves taking the water pens and brush and drawing everywhere with the water.
The kid's ultimate favorite gifts: New Bicycles! Their aunt (my sister) bought Macho a new tricycle and she bought Beauty a new bicycle. Both have training wheels so they can't fall down anywhere. The kids just can't play with them enough! The hard part is teaching them how to steer. I imagine it'll be a while before they get the hang of it, especially since we can't practice outdoors because of all the snow, but they'll get it eventually.
My absolute favorite gift was a 100% Cashmere sweater (in red, of course) that Awesome Husband bought me. I absolutely love it! I don't know what Husband's favorite gift was, but I know he liked everything I gave him.
I have to say that the thing I was most grateful for happened a few days before Christmas. Beauty has recently been imitating everything we say, which is great because it's a form of talking, but since it's only imitating, it didn't demonstrate that she was capable of forming her own thoughts into sentences. About a week ago now, Husband and I were upstairs and I was putting on a pair of socks. Beauty looked right at me and said, "Mama sock." Neither one of us have ever said those words to her in that order before, so that was a spontaneous sentence from Beauty herself! This is frickin' fantastic!!! It's the first sign EVER that she is capable of putting her thoughts into a sentence. It's basically the first sign that one day, she will be able to really communicate. Beauty has said more sentences similar to this, such as "Dada eat," and everytime she does, I can't help but get a huge smile on my face. =D
I'm grateful for so many things this year, but overall, getting that first glimmer of hope that Beauty will one day be able to speak to me (and other people) was such a blessing. That was truly the icing on the cake!
Sunday, December 27, 2009
Thursday, December 24, 2009
EEG Details AND RESULTS
So last Thursday (the 17th) my little Beauty had an EEG done. Long story short: the pediatrician thinks the night terrors she's been having the last 8 months may actually be mini-seizures. The EEG had to be done to confirm this. Now, let me just say, whether you have an autistic child or not, no kid wants 23 wires stuck to their head. However, autistic children REALLY don't like it. Beauty's always had a hypersensitivity issue when it comes to her head (brushing her hair in the morning - every morning- results in screaming), so you can just imagine how unhappy she was to have this procedure done.
The fun began the night before, where I had to put Beauty to bed two hours later than usual, then I had to wake her 2 hours earlier than normal the next morning, plus I was not allowed to give her any food. The medicine used to sedate her could cause nausea, so they didn't want her to eat. We arrived at Primary Children's Hospital near the University of Utah, entered the building, and Beauty immediately became extremely tense. By the time we got inside the room where the hospital bed was, she was already throwing herself on the floor and trying to escape. She continued screaming for a solid 15 minutes. The procedure was a sedated EEG, meaning that she'd drink medicine to help her fall asleep. In other words, it does not completely knock her out.
She drank the medicine with no problems and the nurse told us (me and my sister) it would take up to 20 minutes for full effect. Ten minutes later, Beauty started to feel funny, and it made her panic. She started whining and she didn't want me to approach her, which was very odd because she usually allows me to try and comfort her. Then she tried leaving the room, but since she couldn't open the door, she just stood against it. About 30 seconds later, she fell. It was as if she had no feet and she just went limp. After that, my sister and I, despite the fact that Beauty didn't want us touching her, grabbed her and held her down so she wouldn't fall and accidentally hurt herself. This caused her to scream and she continued screaming for the next 10 minutes. A few minutes later, she was out like a light, sleeping in the bed.
Everyone came in to start hooking her up for the EEG. The doctor was able to attach about half the wires to Beauty's head before she woke up. Can you imagine falling asleep and waking up to a room full of strangers and weird colored strings attached to your scalp??? Yeah, it's freaky, and she was totally freaked out. The thrashing began and continued for about 10 minutes before the nurse decided it was time to give her another dose of the "sleepy medicine." The next twenty minutes consisted of me, my sister, and her doctor trying to keep Beauty still so the rest of the wires could be put in place. Now, in case you don't know how the wires are stuck on, they use 2 different types of pastes that stick the wire on, and then they use cotton tape to keep it in place. Her hair was a total disaster.
When she finally fell asleep again, the actual exam began. She slept for an hour while the computer monitored her brain waves. When the exam was finished, the doctor came in and quickly removed the wires from Beauty's head. "Quickly" is a relative term, considering that it took some doing to remove the wires without yanking all her hair out. She managed to fall asleep again for another hour, so my sister and I just sat there, waiting for her to wake up. Once she did, we fed her, they discharged her, and I carried her to the car.
The "fun" continued that night when I had to give her a bath and wash her hair. You had to see what her hair looked like; it was like Johnny Depp in "Edward Scissorhands," 'cause her hair was sticking up and sideways and every other direction imaginable, not to mention it was extremely knotted. After three shampoos and a half hours worth of brushing (let's not forget the piercing screams that came out of my beautiful little girl - as if I were ripping her limbs off), her hair was finally back to normal.
It has been such a horrible last three months for Beauty. She got a foot infection, an upper respiratory infection, she had the EEG, and now she has an eye infection. How? Because some stupid idiot (excuse my verbiage) brought their kid to nursery with a drippy eye and they said, "It's ok, it's just allergies." About an hour after we got home, Beauty's eye was drippy, puffy and red. It's hard enough having to put a special antibiotic creme on her feet 3x's a day (she hates people touching her feet), but now I have to put antibiotic eyedrops in her eyes 3x's a day as well. She screams so much now that by the end of the day, I usually end up with a migraine. Thank goodness Awesome Husband has the week off, 'cause I wouldn't be able to put her eyedrops in unless he restrains her.
It's times like this that I have to work really hard to remember that this too shall pass! This is just a small, microscopic moment in our short lives that we need to get through (although it feels like forever). I'm not quite sure what else to say, except that no matter what happens, I love my little girl. I'd rather go through these things and have her in my life than not. My world just isn't complete without her.
EEG Results: The doctor finally called me back today (12/28). Beauty's EEG results are "inconclusive." First, he said the "Beta Waves" that were recorded were considered high, but that could be because of the sedation medicine. Sometimes, that particular medicine can cause the beta readings to come out higher than normal. Second, he said there were "sporatic brain waves." Basically, some brain waves were slightly high, but they were so spread apart that the doctor could not conclusively say they were seizures. She could be having seizures, but they're not strong enough and frequent enough to be called seizures. So, basically that leaves us back at square one.
The doctor asked me how Beauty has been sleeping recently, and I mentioned that ever since she's been on the antibiotic to clear up her foot infection, she's been sleeping just fine. SOOO..... I'm wondering if the reason she's been waking up so much the last 3 1/2 months is related to the foot infection, because it took us a long time to figure out she had an infection. She might've been waking up a lot just because her foot was bothering her. What's the next step? Nothing. We're not going to do any more tests if she's sleeping just fine now. If she does start waking up a lot again, the pediatrician will refer us to a neurologist. I pray she continues to sleep well, 'cause I don't want to put her (and myself) through any more tests!
The fun began the night before, where I had to put Beauty to bed two hours later than usual, then I had to wake her 2 hours earlier than normal the next morning, plus I was not allowed to give her any food. The medicine used to sedate her could cause nausea, so they didn't want her to eat. We arrived at Primary Children's Hospital near the University of Utah, entered the building, and Beauty immediately became extremely tense. By the time we got inside the room where the hospital bed was, she was already throwing herself on the floor and trying to escape. She continued screaming for a solid 15 minutes. The procedure was a sedated EEG, meaning that she'd drink medicine to help her fall asleep. In other words, it does not completely knock her out.
She drank the medicine with no problems and the nurse told us (me and my sister) it would take up to 20 minutes for full effect. Ten minutes later, Beauty started to feel funny, and it made her panic. She started whining and she didn't want me to approach her, which was very odd because she usually allows me to try and comfort her. Then she tried leaving the room, but since she couldn't open the door, she just stood against it. About 30 seconds later, she fell. It was as if she had no feet and she just went limp. After that, my sister and I, despite the fact that Beauty didn't want us touching her, grabbed her and held her down so she wouldn't fall and accidentally hurt herself. This caused her to scream and she continued screaming for the next 10 minutes. A few minutes later, she was out like a light, sleeping in the bed.
Everyone came in to start hooking her up for the EEG. The doctor was able to attach about half the wires to Beauty's head before she woke up. Can you imagine falling asleep and waking up to a room full of strangers and weird colored strings attached to your scalp??? Yeah, it's freaky, and she was totally freaked out. The thrashing began and continued for about 10 minutes before the nurse decided it was time to give her another dose of the "sleepy medicine." The next twenty minutes consisted of me, my sister, and her doctor trying to keep Beauty still so the rest of the wires could be put in place. Now, in case you don't know how the wires are stuck on, they use 2 different types of pastes that stick the wire on, and then they use cotton tape to keep it in place. Her hair was a total disaster.
When she finally fell asleep again, the actual exam began. She slept for an hour while the computer monitored her brain waves. When the exam was finished, the doctor came in and quickly removed the wires from Beauty's head. "Quickly" is a relative term, considering that it took some doing to remove the wires without yanking all her hair out. She managed to fall asleep again for another hour, so my sister and I just sat there, waiting for her to wake up. Once she did, we fed her, they discharged her, and I carried her to the car.
The "fun" continued that night when I had to give her a bath and wash her hair. You had to see what her hair looked like; it was like Johnny Depp in "Edward Scissorhands," 'cause her hair was sticking up and sideways and every other direction imaginable, not to mention it was extremely knotted. After three shampoos and a half hours worth of brushing (let's not forget the piercing screams that came out of my beautiful little girl - as if I were ripping her limbs off), her hair was finally back to normal.
It has been such a horrible last three months for Beauty. She got a foot infection, an upper respiratory infection, she had the EEG, and now she has an eye infection. How? Because some stupid idiot (excuse my verbiage) brought their kid to nursery with a drippy eye and they said, "It's ok, it's just allergies." About an hour after we got home, Beauty's eye was drippy, puffy and red. It's hard enough having to put a special antibiotic creme on her feet 3x's a day (she hates people touching her feet), but now I have to put antibiotic eyedrops in her eyes 3x's a day as well. She screams so much now that by the end of the day, I usually end up with a migraine. Thank goodness Awesome Husband has the week off, 'cause I wouldn't be able to put her eyedrops in unless he restrains her.
It's times like this that I have to work really hard to remember that this too shall pass! This is just a small, microscopic moment in our short lives that we need to get through (although it feels like forever). I'm not quite sure what else to say, except that no matter what happens, I love my little girl. I'd rather go through these things and have her in my life than not. My world just isn't complete without her.
EEG Results: The doctor finally called me back today (12/28). Beauty's EEG results are "inconclusive." First, he said the "Beta Waves" that were recorded were considered high, but that could be because of the sedation medicine. Sometimes, that particular medicine can cause the beta readings to come out higher than normal. Second, he said there were "sporatic brain waves." Basically, some brain waves were slightly high, but they were so spread apart that the doctor could not conclusively say they were seizures. She could be having seizures, but they're not strong enough and frequent enough to be called seizures. So, basically that leaves us back at square one.
The doctor asked me how Beauty has been sleeping recently, and I mentioned that ever since she's been on the antibiotic to clear up her foot infection, she's been sleeping just fine. SOOO..... I'm wondering if the reason she's been waking up so much the last 3 1/2 months is related to the foot infection, because it took us a long time to figure out she had an infection. She might've been waking up a lot just because her foot was bothering her. What's the next step? Nothing. We're not going to do any more tests if she's sleeping just fine now. If she does start waking up a lot again, the pediatrician will refer us to a neurologist. I pray she continues to sleep well, 'cause I don't want to put her (and myself) through any more tests!
Monday, December 7, 2009
Heavy Thinking
I read this book my sister gave me about a mother's struggle to recover her son from Autism. One of the paragraphs really hits the nail on the head for me:
"He stares off into space for minutes at a time. I call his name and snap by his face only to be completely unnoticed. His forearms flap lightly at his sides as if his elbows are attached to his ribs. Then there are those extremely rare moments in which I catch a glimpse of the little boy who is hiding inside the furthest corner of a hollow shell: the look on his face when we hold hands and I spin him around, the way he briefly comes alive when we dance, or his exhiliration when I give him an underdog in the swing. My instinct as his mother tells me he's in there. But he's fading deeper into oblivion as times goes on - further from my grasp. The deep-set panic that he'll be beyond my reach is so severe it controls me. I focus all my time and energy on pulling out the boy I used to know - the boy who occasionally appears when we dance. I shadow his every move, hoping to stave off the monster that threatens to forever consume him."
Every minute of every day my prayer is the same, that one day, I'll be able to finally meet my little girl.
(BTW, check out my autism blog: http://speakingonthespectrum.blogspot.com/ )
"He stares off into space for minutes at a time. I call his name and snap by his face only to be completely unnoticed. His forearms flap lightly at his sides as if his elbows are attached to his ribs. Then there are those extremely rare moments in which I catch a glimpse of the little boy who is hiding inside the furthest corner of a hollow shell: the look on his face when we hold hands and I spin him around, the way he briefly comes alive when we dance, or his exhiliration when I give him an underdog in the swing. My instinct as his mother tells me he's in there. But he's fading deeper into oblivion as times goes on - further from my grasp. The deep-set panic that he'll be beyond my reach is so severe it controls me. I focus all my time and energy on pulling out the boy I used to know - the boy who occasionally appears when we dance. I shadow his every move, hoping to stave off the monster that threatens to forever consume him."
Every minute of every day my prayer is the same, that one day, I'll be able to finally meet my little girl.
(BTW, check out my autism blog: http://speakingonthespectrum.blogspot.com/ )
Thursday, December 3, 2009
The Fun Continues...
So both of my kiddies are now on a stronger antibiotic. The first round wasn't quite strong enough to wipe out the infection, but this new antibiotic seems to be doing the trick. Plus, the pediatrician wanted to see if a stronger antibiotic would work on Beauty's foot problem. What foot problem? Glad you asked...
A couple of months ago, Beauty stubbed her left toe and cut herself. Her foot seemed fine, but within a couple of weeks it started looking different. By the end of the month, both of her feet seemed to have developed an odd rash. The pediatrician gave me a cream for her, believing it was eczema, however the rash did not improve. Near the end of the second month since the incident, both her feet had developed these "hard shells" around her skin, which I then had to remove; Beauty did not enjoy that. Since her feet began getting worse around the same time she got her upper respiratory infection, the pediatrician decided to give Beauty a stronger antibiotic to see if it would also wipe out the foot problem, now believing it was an infection.
Well hallelujah! It seems the antibiotic is killing off whatever is going on with her feet. I took a look at them this morning and they are much improved. Finally! I'm so relieved because Beauty was waking up a lot at night complaining about her feet, and of course they bothered her during the day, too. So, with the help of modern medicine, both her upper respiratory infection and foot infection are finally clearing up.
Macho is doing much better on his medicine too. His diarrhea and vomitting have subsided and his congestion has cleared up. He is doing really great developmentally as well. He is beginning to say many words very clearly now. Macho has also learned how to go up and down the stairs by himself, which makes me extremely nervous, but he's growing up and I have to let him =( I'm also proud to report that he's learned his shapes, basic colors, and most of the alphabet in both upper and lower case. He can also pronounce all the letters except for 4 of them, but he's trying. Macho will be turning 2 yrs old next month, he's around 34 1/2 inches tall, and he weighs somewhere around 31 pounds. Husband and I often look at him and wonder, "How can someone who looks so small weigh so much?!" Macho just seems to be built like a little football player; wide shoulders, long torso and a lot of muscle. We'll see what happens in the future.
I'll try to make this short: Beauty has been waking up a lot at night due to night terrors, however the pediatrician now believes these are not night terrors but small, tiny seizures occurring in her brain. To confirm this, he has scheduled an EEG for her, but this won't happen until the 17th. She needs to be sedated since it requires the doctors hooking up wires on and around her head (which she would never allow). I'm very nervous about her being put under anesthesia, but I know it's the only way they'll be able to do the test on her. I just pray that she's not allergic to something I'm unaware of. I also hate that the test is scheduled for 11 am and she's not allowed anything to eat or drink except water!
Beauty, despite her medical issues, is developing quite well. She'll be turning 4 yrs old next month, she's around 40 lbs and is 39 inches tall. Despite the fact that her diet is extremely limited, she is very healthy (probably thanks to all the Pediasure she drinks). Beauty is now beginning to say multiple-word phrases and she is becoming more social with other children. She and Macho finally get along pretty well now. It used to be that Beauty would push and hit him a lot because he was always "in her space." Now they play and laugh together, which is really great to see. I'm also very happy to see that Beauty is learning how to write her letters. She writes them in upper-case form and there are about 10 letters that she still needs help with, but she can write the rest of them pretty much perfectly.
Quick update on my health - No, I do not have allergies. The doctor I saw at the Instacare truly believed I had allergies, but after 4-5 days of being on the allergy meds and seeing no results, I'm now being referred to an Ear, Nose and Throat doctor. My appointment is next week, so we'll see how that goes.
Well, this turned out to be a lot longer than anticipated. Sorry if I bored you. =)
A couple of months ago, Beauty stubbed her left toe and cut herself. Her foot seemed fine, but within a couple of weeks it started looking different. By the end of the month, both of her feet seemed to have developed an odd rash. The pediatrician gave me a cream for her, believing it was eczema, however the rash did not improve. Near the end of the second month since the incident, both her feet had developed these "hard shells" around her skin, which I then had to remove; Beauty did not enjoy that. Since her feet began getting worse around the same time she got her upper respiratory infection, the pediatrician decided to give Beauty a stronger antibiotic to see if it would also wipe out the foot problem, now believing it was an infection.
Well hallelujah! It seems the antibiotic is killing off whatever is going on with her feet. I took a look at them this morning and they are much improved. Finally! I'm so relieved because Beauty was waking up a lot at night complaining about her feet, and of course they bothered her during the day, too. So, with the help of modern medicine, both her upper respiratory infection and foot infection are finally clearing up.
Macho is doing much better on his medicine too. His diarrhea and vomitting have subsided and his congestion has cleared up. He is doing really great developmentally as well. He is beginning to say many words very clearly now. Macho has also learned how to go up and down the stairs by himself, which makes me extremely nervous, but he's growing up and I have to let him =( I'm also proud to report that he's learned his shapes, basic colors, and most of the alphabet in both upper and lower case. He can also pronounce all the letters except for 4 of them, but he's trying. Macho will be turning 2 yrs old next month, he's around 34 1/2 inches tall, and he weighs somewhere around 31 pounds. Husband and I often look at him and wonder, "How can someone who looks so small weigh so much?!" Macho just seems to be built like a little football player; wide shoulders, long torso and a lot of muscle. We'll see what happens in the future.
I'll try to make this short: Beauty has been waking up a lot at night due to night terrors, however the pediatrician now believes these are not night terrors but small, tiny seizures occurring in her brain. To confirm this, he has scheduled an EEG for her, but this won't happen until the 17th. She needs to be sedated since it requires the doctors hooking up wires on and around her head (which she would never allow). I'm very nervous about her being put under anesthesia, but I know it's the only way they'll be able to do the test on her. I just pray that she's not allergic to something I'm unaware of. I also hate that the test is scheduled for 11 am and she's not allowed anything to eat or drink except water!
Beauty, despite her medical issues, is developing quite well. She'll be turning 4 yrs old next month, she's around 40 lbs and is 39 inches tall. Despite the fact that her diet is extremely limited, she is very healthy (probably thanks to all the Pediasure she drinks). Beauty is now beginning to say multiple-word phrases and she is becoming more social with other children. She and Macho finally get along pretty well now. It used to be that Beauty would push and hit him a lot because he was always "in her space." Now they play and laugh together, which is really great to see. I'm also very happy to see that Beauty is learning how to write her letters. She writes them in upper-case form and there are about 10 letters that she still needs help with, but she can write the rest of them pretty much perfectly.
Quick update on my health - No, I do not have allergies. The doctor I saw at the Instacare truly believed I had allergies, but after 4-5 days of being on the allergy meds and seeing no results, I'm now being referred to an Ear, Nose and Throat doctor. My appointment is next week, so we'll see how that goes.
Well, this turned out to be a lot longer than anticipated. Sorry if I bored you. =)
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