Autism Speaks has partnered with HBO to make a movie about a woman with Autism, her name is Temple Grandin. The movie premieres on HBO on Feb. 6th.
http://blog.autismspeaks.org/2010/01/25/tune-in-temple-grandin-on-hbo-2/
Monday, January 25, 2010
Wednesday, January 20, 2010
Serious Venting!
So, there's this woman in my ward who is in charge of taking care of the kids in nursery for a couple of hours during church. She's a little weird; a little off, but she's nice enough. Anyway, in the past, she has made a couple of remarks about how difficult it is taking care of Beauty during those two hours. She's never flat-out complained about it, but Hubby and I could tell that she felt it was a burden. Since Macho turned 18 mo. old six months ago, Hubby or I have made it a point to stay in the nursery because Macho gets very upset if one of us isn't in there with him. Which means that for the last 6 months, one of us is always in there watching over BOTH kids. Surely, the nursery teacher shouldn't feel so "burdened" anymore, right? Well....
A few weeks ago, I believe it was the first Sunday of the month, someone came in to find out the new number of kids in the nursery. The nursery teacher said the number, and then she said, "Though, Beauty really should be in Primary, but, you know...." This remark bothered me, and mind you, both Hubby and I were standing right there. I spoke up and said, "Well, Beauty just can't be in Primary. She doesn't sit for very long and she wouldn't be able to understand the lessons and be quiet for long periods of time."
There is another boy in the nursery class who is also a special needs child (he's really sweet, btw, and his dad always stays in nursery with him too). I bring him up because the nursery teacher had the nerve to look at that boy's father (and mind you, this little boy is a whole year younger than Beauty) and she said, "So, when is he going to Primary?"
What the heck???? I mean, is her calling as teacher so terrible, so unbelievably more difficult by having these two special kids in the nursery? I mean, it's not like she's really even teaching a lesson anyway. The nursery has little kids in it and all they do is play with toys for two hours and eat snacks in the middle. That's it! Why is it so terrible for this woman to have to "put up" with my little girl? And on top of that, the parents are always in the class with their kids, so it's not like she's really watching them anyway!
Oh, and she even had the audacity to make a remark straight to Hubby's face a little later that same day. Hubby and I have been trying to gently ease Macho into staying in the nursery by himself, without one of us in the room with him. This particular Sunday, Hubby stepped out the room, but he continued watching the kids through the little window in the door. A little while later, Macho started crying, so Hubby went back inside immediately. The nursery teacher said, "He's crying because Beauty won't put the toys away. Something's gotta change." She was almost implying that we, Beauty's parents, were not doing a sufficient job with our daughter. RUDE!!!!
Even Hubby got upset about it, but he didn't say anything. I, on the other hand, would LOVE to lay into this woman and set her straight: "You think it's hard dealing with her for two hours? You have NO IDEA what we go through with her day in and day out, 24 hrs a day, 7 days a week. Let's see YOU do any better!" But no, I'm refraining because I know that if I did talk to her, even if I was polite about it, the message wouldn't get across. She's just one of those people who would shrug it off, or she'd say, "Oh, I didn't mean anything by it," but then she'd continue to make remarks anyway. She just doesn't get it.
So the question I face: What do I do about it? What can I do about it? Would anything I try work? People like her just make me so angry because they're so IGNORANT! And even more than that, they are completely unsympathetic and uncaring when it comes to children like Beauty. I just want to hit this woman over the head with a "CLUE BAT," you know - you hit them on the head and then all of a sudden, they get it? Yeah, someone needs to invent the Clue Bat.
Tuesday, January 19, 2010
I found this a while ago...
This was so funny I had to share it. Those of you with special kids will TOTALLY get it!
http://blog.autismspeaks.org/2009/12/23/the-12-days-of-autism-christmas/
http://blog.autismspeaks.org/2009/12/23/the-12-days-of-autism-christmas/
Thursday, January 14, 2010
What a week!
Things have been kinda crazy (and scary) the last few days. Since it's late though, I don't have the energy to lay out all the details, so here's a quick recap:
Macho got sick, then Beauty got sick, now they're both on antibiotics. They each have diarrhea now, since antibiotics cause diarrhea. I feel so bad for Beauty too, 'cause she's missed out on preschool this whole week. I can tell she's been restless.
Beauty's EEG bill came in. After insurance paid their part, we still had to pay nearly $550!!! Insurance coverage just isn't what it used to be.
We finally called an electrician to check out the wiring in our house. We've had a lot of lights flickering ever since we moved in, but we procrastinated and waited until yesterday to finally have someone come check things out. Also, fyi, we've never needed to change any of the light bulbs 'cause none of them have gone out. I bring this up because.....
Every single light bulb in the house was 100 watts, and every single wire in our house was burned and/or melted!!!! Even the screws or bolts that held the base of the light to the ceiling had gotten so hot that they welded together! The electrician looked at me and said, "I'm surprised there hasn't been a fire in this house yet." Thank you, Heavenly Father, for keeping us safe!
We now have new wires , a new outlet in our room (the wires for the outlet were completed melted too), and all the light bulbs in the house are no more than 60 watts. Do yourself a favor - CHECK YOUR LIGHTBULBS! The electric guy said that no bulbs inside a home should be more than 60 (except lights outside the door or in a garage).
After he spent 4 hours checking and replacing everything, we had to pay the nice man for his services. It was well worth the $300 bucks to prevent our home from going up in flames!
So, after the kids being sick, paying hospital bills, paying the electrician and buying a bunch of new light bulbs, we're a little poorer, but we're all safe and regaining our health again.
Like I said - What a week!
The one brightspot - I've lost another pound! =) Just 5 more pounds to go!
Macho got sick, then Beauty got sick, now they're both on antibiotics. They each have diarrhea now, since antibiotics cause diarrhea. I feel so bad for Beauty too, 'cause she's missed out on preschool this whole week. I can tell she's been restless.
Beauty's EEG bill came in. After insurance paid their part, we still had to pay nearly $550!!! Insurance coverage just isn't what it used to be.
We finally called an electrician to check out the wiring in our house. We've had a lot of lights flickering ever since we moved in, but we procrastinated and waited until yesterday to finally have someone come check things out. Also, fyi, we've never needed to change any of the light bulbs 'cause none of them have gone out. I bring this up because.....
Every single light bulb in the house was 100 watts, and every single wire in our house was burned and/or melted!!!! Even the screws or bolts that held the base of the light to the ceiling had gotten so hot that they welded together! The electrician looked at me and said, "I'm surprised there hasn't been a fire in this house yet." Thank you, Heavenly Father, for keeping us safe!
We now have new wires , a new outlet in our room (the wires for the outlet were completed melted too), and all the light bulbs in the house are no more than 60 watts. Do yourself a favor - CHECK YOUR LIGHTBULBS! The electric guy said that no bulbs inside a home should be more than 60 (except lights outside the door or in a garage).
After he spent 4 hours checking and replacing everything, we had to pay the nice man for his services. It was well worth the $300 bucks to prevent our home from going up in flames!
So, after the kids being sick, paying hospital bills, paying the electrician and buying a bunch of new light bulbs, we're a little poorer, but we're all safe and regaining our health again.
Like I said - What a week!
The one brightspot - I've lost another pound! =) Just 5 more pounds to go!
Thursday, January 7, 2010
New Jewelry from Zales for Autism
http://www.zales.com/category/index.jsp?categoryId=3573997&fbc=0&sr=1&origkw=shared%20heart
Zales has a new line of jewelry called "The Shared Heart." A portion of the sales goes to Autism Speaks for continued research. Their campaign ends in May. No matter how much they're able to sell, Zales is giving a minimum of $200,000 (which is so cool of them!). If you'd be interested in participating, go to the link above and have a look around.
It's crazy to hear the latest study that it's no longer 1 in 150 children will be born with Autism, but now it's 1 in 110!!! That is just insane!
Zales has a new line of jewelry called "The Shared Heart." A portion of the sales goes to Autism Speaks for continued research. Their campaign ends in May. No matter how much they're able to sell, Zales is giving a minimum of $200,000 (which is so cool of them!). If you'd be interested in participating, go to the link above and have a look around.
It's crazy to hear the latest study that it's no longer 1 in 150 children will be born with Autism, but now it's 1 in 110!!! That is just insane!
Monday, January 4, 2010
The New Year is starting well...mostly
One New Year's resolution a lot of people make is to take better care of themselves by losing weight and eating better, but I got a head start this year. I'm very happy to report that after watching what I eat the last 4 months (and not being on that horrible medication anymore), I've lost 24 lbs! I am now only 6 lbs away from reaching my normal weight. This also means that I'm finally back down to a size 12! YAY!!! Now all that's left is for me to continue doing what I'm doing so I can reach my ideal weight and be able to wear a size 10 again. I hope to reach this goal sometime in the next 4-5 months.
I mentioned this in a previous post, but it's worth mentioning again: Beauty is beginning to form her own sentences! Thank you, Heavenly Father! Beauty really has come a long way this past year. She's speaking more, having less tantrums, screaming less (although she still screams quite a bit) and she's much more social than she used to be. Husband and I are quite impressed with how well she's doing and how quickly she's achieving new goals. Mostly, we're just grateful that our daughter is making such huge strides in such a short time period. We really are very lucky that her autism is mild.
BTW, Beauty had another playdate Dec. 30th with her "boyfriend." When they drove up, she dashed up to the window to wave hello. When he and his mom came inside, she said, "When he saw Beauty, he said "Beauty! I love you!'" Ah, the romance continues! =)
Recently, Macho has not been sleeping very well. He hasn't been sick, he's not teething, and his diaper is always clean, so basically there's no obvious reason why he's not sleeping. During the last 2-3 months, Macho usually falls asleep around 8 pm, wakes up around 5 and then just stays awake. Somtimes he wakes up at 2 am and stays awake for the next 2 hrs. Some of you might say, "Hey, that's not bad!" Compared to how he used to sleep, however, it's not good at all. He used to fall asleep at 7 pm and wake up at 7 am the next day, without waking up once! I'd really like for him to sleep like that again! Now most people would tell me, "Well, don't let him take a nap during the day anymore" or "Put him to bed later." However, during Husband's research, he found that the most common reason why toddlers wake up during the night is because they need more sleep, not less. So, I'm not quite sure what to do to help him sleep better. Macho eats well before bed and he always has something to drink about an hour before bed so he's not thirsty. The only thing left to do is ask the pediatrician what he thinks.
I'm really hoping the New Year is kind to us. I'd like my kids to sleep better and be healthier. I'd like my husband to work less and be home more with his family. And for me, I'd really like to sleep 8 hrs a night! I'd also like my fibromyalgia to go away, but I just have to face reality and accept the fact that I'm stuck with this the rest of my life. Hopefully I can manage it better with my new medication. We'll see how it turns out.
Oh, I almost forgot...I've recently been released from my calling as Relief Society Secretary. The bishop released the entire presidency, which is good 'cause the RS President has had that calling for nearly 8 years! For me, I'm kinda bummed about it because I was only in my position for a little over a year. I'm really going to miss working with the sisters, but I'm sure I won't have time to miss it for long. Surely, the bishop will find something else for me to do!
I mentioned this in a previous post, but it's worth mentioning again: Beauty is beginning to form her own sentences! Thank you, Heavenly Father! Beauty really has come a long way this past year. She's speaking more, having less tantrums, screaming less (although she still screams quite a bit) and she's much more social than she used to be. Husband and I are quite impressed with how well she's doing and how quickly she's achieving new goals. Mostly, we're just grateful that our daughter is making such huge strides in such a short time period. We really are very lucky that her autism is mild.
BTW, Beauty had another playdate Dec. 30th with her "boyfriend." When they drove up, she dashed up to the window to wave hello. When he and his mom came inside, she said, "When he saw Beauty, he said "Beauty! I love you!'" Ah, the romance continues! =)
Recently, Macho has not been sleeping very well. He hasn't been sick, he's not teething, and his diaper is always clean, so basically there's no obvious reason why he's not sleeping. During the last 2-3 months, Macho usually falls asleep around 8 pm, wakes up around 5 and then just stays awake. Somtimes he wakes up at 2 am and stays awake for the next 2 hrs. Some of you might say, "Hey, that's not bad!" Compared to how he used to sleep, however, it's not good at all. He used to fall asleep at 7 pm and wake up at 7 am the next day, without waking up once! I'd really like for him to sleep like that again! Now most people would tell me, "Well, don't let him take a nap during the day anymore" or "Put him to bed later." However, during Husband's research, he found that the most common reason why toddlers wake up during the night is because they need more sleep, not less. So, I'm not quite sure what to do to help him sleep better. Macho eats well before bed and he always has something to drink about an hour before bed so he's not thirsty. The only thing left to do is ask the pediatrician what he thinks.
I'm really hoping the New Year is kind to us. I'd like my kids to sleep better and be healthier. I'd like my husband to work less and be home more with his family. And for me, I'd really like to sleep 8 hrs a night! I'd also like my fibromyalgia to go away, but I just have to face reality and accept the fact that I'm stuck with this the rest of my life. Hopefully I can manage it better with my new medication. We'll see how it turns out.
Oh, I almost forgot...I've recently been released from my calling as Relief Society Secretary. The bishop released the entire presidency, which is good 'cause the RS President has had that calling for nearly 8 years! For me, I'm kinda bummed about it because I was only in my position for a little over a year. I'm really going to miss working with the sisters, but I'm sure I won't have time to miss it for long. Surely, the bishop will find something else for me to do!
Sunday, December 27, 2009
Awesome Christmas! =D
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!
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!
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.
"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.
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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