While a lot of awesome things have been happening in our house this last week, we were extremely saddened with some devastating news on Sunday. A dear friend of ours' little boy fell into a neighbors pool that morning. Since then, little Cooper Aucoin has been fighting for his life at Our Lady of the Lake Hospital. Please keep Cooper in your thoughts and prayers, as we all know the power of prayer has brought Lucas back to us, and it can also bring Cooper back to his parents.
So now for our awesome news...LUCAS IS EATING! That's right. About a week ago, he starting eating a little here and there, and since then, he's just taken off. He loves to eat. He eats a full jar of #2 for breakfast and lunch, and (2) jars for dinner. That's right, and his dinner is now at 4:30. Unless you want to hear him scream for 2 hours. And please don't think you can sit down at the table and NOT feed him! He's contorting his body toward the back of the chair looking for the jar of food. But I'm not complaining. I've been waiting for this day for a long time. But I'm not used to him eating so much. I went to the store today and bought about $30 worth of baby food. So what, that might last us a week now? Guess we'll see. :)
Lucas is also doing awesome in therapy. He even did great today when we went to Metairie. He's not quite used to the stander yet though. After about five minutes or so of straight standing, he's looking around for me, and when his eyes find mine, the screaming begins. I don't think he's hurting, he's just not used to all the weight bearing on his joints. He's been in the chair for about 30 minutes every day this week. (Except today, I was bad and didn't put him in..shame shame.) And it's already helping, because he actually pulled up on a toy to stand on Tuesday--with the therapist, not on his own, but he still gets all the credit!
His legs are getting so strong! And he's doing better building up his upper body strength. Today the therapist mentioned that he doesn't have "the fat hand" anymore. From not using his left side--especially his left arm/hand--his left arm was about twice the size of his right. It was puffy, almost looked like it had fluid around it or was swollen. But I actually think the arm was just fatter from not using it. Well now, both of his arms are skinny. It's so cute, but it's missing muscles. (No, not literally.) You can actually feel the weakness of his muscles if you touch it--hell you can see it if he's wearing a sleeveless shirt. But darn, it's the cutest weakest muscles you'll ever see! ;)
His weak muscles are making mine some strong. It's like carrying a bag of flour taped around one of your arms all day long. Today I had to pick up Joshua from preschool and couldn't get the stroller out of the back of the car. So I had to hold Lucas all the way from the car, to pick up Joshua, and walk back to the car with one arm. I felt like the muscles in my arm were just tearing away. It may not seem like much, but by the time I hold Lucas, Joshua's nap sack and hold Joshua's hand (dragging him to the car), and whatever else I need, it feels like I'm holding him forever!
And to top off our awesome week...Since Lucas is getting stronger and eating, he's also finding his voice. Which is both good and bad. Good because he's starting to try and mimic sounds and tones, but bad because he screams SO darn much. But it's mostly good. Joshua and Lucas are really bonding now. Joshua says.. "Gimme a kiss!" to Lucas just like I tell it to him. One of our friends gave us a walker, and while Lucas sits in the walker, Joshua stands in front of him showing him how to play with the toys. They have their own language. It's really exciting. I can't wait to see them continue to bond. Pretty soon they're gonna be plotting against me.
So on that note...I'm off to bed. Hope you're having as awesome a week as us.
Dear God, please protect my friend Cooper Aucoin. Please send him a miracle like you did for me. Help him to make a full recovery so he can live the rest of his life proclaiming your good works and your great name. Give him strength to keep fighting. Please Lord, take away his pain like you did for me. Give his parents the strength to keep fighting with him. Let them know that even though this is hard for them too, their reward will be great. And they will spend their days together, with each other and with You. Amen. Your miracle baby, Lucas
September 23, 2010
September 18, 2010
I Got my Lukie Back!
So I don't know what happened, but on Monday my old Lucas came back to me! He woke up smiling and when I got him out of bed, he was moving that left arm around. He did awesome at therapy and even ate a bit for the speech therapist on Tuesday. He didn't cry or complain when I made him sit up. He didn't even need his pacifier at 2 out of the 3 physical therapy sessions. He even did well (for 30 minutes anyway) with the OT we go to Ochsner to see every Thursday. That is until the "crying baby" came in and made Lucas cry too. --You see, there's this baby who usually works out on the other side of the room with another therapist that cries all the time. Lucas gets annoyed with him and eventually starts crying too. A lot of time the mother flakes out and misses their session, so I was hoping they'd miss since he was doing so good for 20 minutes. But they finally showed up...and Lucas got annoyed as usual, and stopped working out.
After therapy on Thursday we finally went pick up our sit to stander. You know, the one we ordered like 6 months ago. Well it's huge! And heavy. But Lucas likes it so far. I haven't put him in it too much because I don't want him to get burnt out on it already. But the few times I've put him in it so far, he's done pretty good. He starts sitting in it, then you strap him in and can raise him into a standing position by pulling up on a lever. It's really easy to work--thank God because I'm good at breaking stuff. :) It also has a HUGE clear tray that attaches to the front of it. So even if he is working out, he can play with his toys at the same time so he doesn't realize he's working. Of course, after a few minutes of straight standing, you can tell his legs get tired because he turns his whole body to look for me, sets his eyes on mine and starts whining. So I go let him back into a sitting position and he's happy again. I swear this little guy has got me wrapped around his little finger! And I love it!
Wait there's more good news! My man started eating. YAY! (Can you hear the stadium full of cheers for him?) And not just a bite here and there. He is seeing the spoon and opening his mouth and accepting the food! And he's swallowing it--and spitting some out because he thinks it's funny--but he's swallowing most of it. I can not tell you how proud I am of him. He sees the food and wants to eat. He's eating anywhere from a fourth of a jar, to half of it at every meal now. (#2 jar of baby food) If I don't feed him fast enough, he hollers at me and makes loud noises until I start feeding him. He's not only eating, but he wants to eat. I never thought this day would be anytime soon, let alone around the corner. But I'm so thankful, and so very proud of him. He's growing up so fast and wants to be just like his brother. He loves Joshua so much. Joshua taught him how to say "mmmm" when he takes a bite, and now they "mmmm" together!
And I want to give a special thank you to my friends Erin and Katie. I put up a request for some walkers and they both responded lightning fast! I have Erin's gift at the house--and he loves it. And I'm going to keep Katie's in the car so that when we travel he has something to play with. You guys are the best! I thank you so much!
So all in all, it's been a pretty good week. We had some big exciting things happen. We can't wait to see what else is coming. Before you know it, I'll be writing about his first steps! *sigh*
Here are two snippets of Lucas eating. He takes his pacifier out, takes a bite, and puts the pacifier back in. Such a cutie pie!
After therapy on Thursday we finally went pick up our sit to stander. You know, the one we ordered like 6 months ago. Well it's huge! And heavy. But Lucas likes it so far. I haven't put him in it too much because I don't want him to get burnt out on it already. But the few times I've put him in it so far, he's done pretty good. He starts sitting in it, then you strap him in and can raise him into a standing position by pulling up on a lever. It's really easy to work--thank God because I'm good at breaking stuff. :) It also has a HUGE clear tray that attaches to the front of it. So even if he is working out, he can play with his toys at the same time so he doesn't realize he's working. Of course, after a few minutes of straight standing, you can tell his legs get tired because he turns his whole body to look for me, sets his eyes on mine and starts whining. So I go let him back into a sitting position and he's happy again. I swear this little guy has got me wrapped around his little finger! And I love it!
Wait there's more good news! My man started eating. YAY! (Can you hear the stadium full of cheers for him?) And not just a bite here and there. He is seeing the spoon and opening his mouth and accepting the food! And he's swallowing it--and spitting some out because he thinks it's funny--but he's swallowing most of it. I can not tell you how proud I am of him. He sees the food and wants to eat. He's eating anywhere from a fourth of a jar, to half of it at every meal now. (#2 jar of baby food) If I don't feed him fast enough, he hollers at me and makes loud noises until I start feeding him. He's not only eating, but he wants to eat. I never thought this day would be anytime soon, let alone around the corner. But I'm so thankful, and so very proud of him. He's growing up so fast and wants to be just like his brother. He loves Joshua so much. Joshua taught him how to say "mmmm" when he takes a bite, and now they "mmmm" together!
And I want to give a special thank you to my friends Erin and Katie. I put up a request for some walkers and they both responded lightning fast! I have Erin's gift at the house--and he loves it. And I'm going to keep Katie's in the car so that when we travel he has something to play with. You guys are the best! I thank you so much!
So all in all, it's been a pretty good week. We had some big exciting things happen. We can't wait to see what else is coming. Before you know it, I'll be writing about his first steps! *sigh*
Here are two snippets of Lucas eating. He takes his pacifier out, takes a bite, and puts the pacifier back in. Such a cutie pie!
September 13, 2010
Family Time
Since my last entry on Thursday, we've been having lots of family time. Friday me and the kiddos spent the day in Lutcher with my mom and sister. Lucas and Joshua both did not take naps. Lucas was just rotten whenever I was in the room with him. If I wasn't sitting next to him or holding him, he was not happy at all. But of course, when I left to drive Brandi around for an hour he was great for my mom! (Brandi can't drive because she had surgery on her knee on Wednesday.) Joshua on the other hand was actually really good. He loved having the run of a different house all to himself, and had an even greater time when we brought Brandi's kiddos over for a couple hours before they had to go spend the night at their dad's. Joshua ended up falling asleep before six that night and would not wake up. That is until about 5:30 AM when he crawled in my bed and woke me up!
Saturday Lucas was pretty good. The miralax kicked in very quickly so I didn't give it to him for a couple days. So when I gave him the dose on Friday and Saturday, he had multiple explosions on Saturday. It was a mess!! But the guy was feeling great, so it's all worth it. We went to my parents that night to "watch the game." Josh got down an old walker that my mom had in the attic and Lucas got his first trip in the walker. Unfortunately it's a really old walker and Lucas is technically too big for a walker so he was a tad bit too tall for it. He couldn't stand up, but he did sit up in it very well. I even put his little feet up on the rail and pushed him around the kitchen--he loved that!
Yesterday we spent the day at my grandmaw's with my aunt and uncle. It's been a little Sunday tradition we started up again a couple of months ago. Lucas did great this time around. The last couple of times we went, Lucas was his old rotten self. But yesterday, he sat up in the chair like a big boy. Talked and laughed with everyone! And he didn't freak out my aunt and maw maw by having a seizure.
Speaking of seizures...I hate to even say this out loud and jinx us, but...since our hospital stay last week, Lucas has not had a seizure. At least not one that I've noticed. I usually wake up in the middle of the night when he has them, but haven't even done that. I don't know what is causing this to happen or not happen, but I think it may have something to do with his regular bowel movements now. I mean, he has been going regular since the hospital stay, so it's either that or just a huge coincidence. Time will tell I guess.
And lastly, I still haven't gotten my follow up appointment with the new neurologist yet. I sent the doctor an email over the weekend and told him about the change in the seizures and asked him how do I go about making an appointment if no one calls me back. But still, I haven't got a response from him or the nurse--and yes, I was a lot more polite in my email to the doctor. I just wish he'd call me back or something already. I'm dying to know what the EEG/sleep study results are already!
If anyone knows of someone who is getting rid of any baby walking devices--walkers, excersaucers, etc.--please let me know. I'm looking to get a few of these so when we go places (my moms, mother-in-laws, grandmaws, etc.), he won't have to either be held or lay down the entire time. And by the way, our sit-to-stander finally came in. We're getting fitted on Thursday! WE CAN'T WAIT!
And again, you can email me the pictures of you signing your special word to lindsey_preferco@yahoo.com
Thanks again guys!
Saturday Lucas was pretty good. The miralax kicked in very quickly so I didn't give it to him for a couple days. So when I gave him the dose on Friday and Saturday, he had multiple explosions on Saturday. It was a mess!! But the guy was feeling great, so it's all worth it. We went to my parents that night to "watch the game." Josh got down an old walker that my mom had in the attic and Lucas got his first trip in the walker. Unfortunately it's a really old walker and Lucas is technically too big for a walker so he was a tad bit too tall for it. He couldn't stand up, but he did sit up in it very well. I even put his little feet up on the rail and pushed him around the kitchen--he loved that!
Yesterday we spent the day at my grandmaw's with my aunt and uncle. It's been a little Sunday tradition we started up again a couple of months ago. Lucas did great this time around. The last couple of times we went, Lucas was his old rotten self. But yesterday, he sat up in the chair like a big boy. Talked and laughed with everyone! And he didn't freak out my aunt and maw maw by having a seizure.
Speaking of seizures...I hate to even say this out loud and jinx us, but...since our hospital stay last week, Lucas has not had a seizure. At least not one that I've noticed. I usually wake up in the middle of the night when he has them, but haven't even done that. I don't know what is causing this to happen or not happen, but I think it may have something to do with his regular bowel movements now. I mean, he has been going regular since the hospital stay, so it's either that or just a huge coincidence. Time will tell I guess.
And lastly, I still haven't gotten my follow up appointment with the new neurologist yet. I sent the doctor an email over the weekend and told him about the change in the seizures and asked him how do I go about making an appointment if no one calls me back. But still, I haven't got a response from him or the nurse--and yes, I was a lot more polite in my email to the doctor. I just wish he'd call me back or something already. I'm dying to know what the EEG/sleep study results are already!
If anyone knows of someone who is getting rid of any baby walking devices--walkers, excersaucers, etc.--please let me know. I'm looking to get a few of these so when we go places (my moms, mother-in-laws, grandmaws, etc.), he won't have to either be held or lay down the entire time. And by the way, our sit-to-stander finally came in. We're getting fitted on Thursday! WE CAN'T WAIT!
And again, you can email me the pictures of you signing your special word to lindsey_preferco@yahoo.com
Thanks again guys!
September 9, 2010
Hello Cold and Flu Season!
I just want to start out saying that I do realize that my last entry had no relation whatsoever with the title. I was trying to get a quick entry in before I left, but obviously I didn't finish writing what I was planning on telling you all. Josh was bugging me to leave so I just ended that entry and forgot to change the title. I'll try and do better next time. :)
I'm one of those people that write out what they're going to say, and read it back to myself a dozen times to make sure it makes sense or I don't stray too far off the path of reason. And while reading back on my old entries, I noticed that I start almost every single blog with the word "So...." So, from now on, I'm going to try and tame back on that a little. (Good luck with that since the first sentence I write after putting that out there began with so.)
What's been going on? Well, Friday night Josh's mom, his brother and the twins came for a long weekend visit. We all sat around the table talking until late Friday night talking and catching up. Then, about 1 a.m. that Saturday morning, I hear Lucas gasping for air. We bring him in our room and give him a breathing treatment and suctioned out his nose. Not long after the breathing treatment started, he was back to his good 'ole self, and was breathing just fine, so we put him back to bed. Well just after 4 a.m. he started gasping for air again. We started another breathing treatment, but that didn't seem to do anything at all so we made the decision to bring him to the hospital. (I know, we were doing so good up until now!) Well I didn't feel comfortable bringing him to the hospital by myself because he was retracting so bad--his arms and his legs were literally jumping up and down because he was using his entire body to breathe! It almost looked like he was having a seizure--so we ended up having to call the ambulance to pick us up.
This time around, the ambulance was there in minutes! The people were young, and weird. The lady working on Lucas used about every single supply they had in the back of the car. Well Lucas is an extremely hard stick (for an IV), but little miss enthusiastic said she "had" to try--but she was only gonna try once...while the car was moving at that! She then proceeds to tell me that if she can't get a line, then she will have to give him his medicine intravenously if he needs it. Now, I'm pretty good with medical terms, but I guess she could tell I had a blank look on my face. Either that or she just has no bedside manner, because she then looks at me with a straight face and says, "you know...like with a drill." I just said, "uh huh" and cursed her under my breath as I was rolling my eyes. If that little girl thinks she's getting anywhere near my boy with a drill, she's out of her freakin' mind!
It seemed to take forever to get to the hospital. Oddly enough, there weren't many people in the ER and they put us straight in a room. Within a couple of hours, we were admitted to the hospital. His lungs were SO juicy, I really thought he had pneumonia. But, as it turns out, my little guy had the croop! The doc said he probably caught it from Joshua's runny nose earlier in the week. He was on breathing treatments a few hours apart throughout the day, and they put him on steroids in case asthma played any part in this. They also gave him a prescription for Miralax (a stool softener) to help him have daily b.m.'s instead of weekly. **Angelic voices singing hymns** I can not tell you what a relief it is to have this. We just got it filled yesterday, but it's already working! And can you believe Walgreens refused to fill it for me since they carried it on the shelf. The woman told me that "most insurance companies won't pay for this anymore since they're cutting back and told me to go buy it off the shelf. What the heck! She didn't even try to get it approved! Good thing my awesome Godfather works for a pharmacy because it was approved. And thank goodness, because otherwise it would've cost me about $15 every 10 days. That adds up quick!
The Croop! That's the big thing with a "special needs child", a little thing like a common cold could put us in the hospital for a few days. I thank God that it was nothing serious--this time. And pray that we can stay healthy this winter. This is only the first week that summer's over and we're already in the hospital.
And on another note, last week Dr. Niyazov prescribed Lucas yet another vitamin to his daily regime. So I went to Whole Foods to pick it up, along with another vitamin we ran out of, and can you believe I spent $40 on two small bottles? The new bottle was on sale for $20 and will last me about a month and a half I think. But the other bottle will only last me 10 days. We had been getting the small bottle from a place online that carries it in bulk (that last for about two months or so) but that one costs about $100--and that's at a huge discount our doctor worked out for us. I have come to the conclusion that I hate money. If you think it's expensive to have kids these days, try having a special needs child. A lot of these medicines are just vitamins that are carried over the counter and not covered under our insurance so we end up paying for a bunch of his meds.
Well if you can believe it, I'm actually not finished with all what I have to say, but maybe if I wrote more often I wouldn't have such long entries and could fit all my thoughts onto the page nicely. But, Joshua started his first day of Pre-K at the Wee Care Center and it's time to go pick him up, so I have to go now. My little boys are growing so fast! Time is flying by.
I'm one of those people that write out what they're going to say, and read it back to myself a dozen times to make sure it makes sense or I don't stray too far off the path of reason. And while reading back on my old entries, I noticed that I start almost every single blog with the word "So...." So, from now on, I'm going to try and tame back on that a little. (Good luck with that since the first sentence I write after putting that out there began with so.)
What's been going on? Well, Friday night Josh's mom, his brother and the twins came for a long weekend visit. We all sat around the table talking until late Friday night talking and catching up. Then, about 1 a.m. that Saturday morning, I hear Lucas gasping for air. We bring him in our room and give him a breathing treatment and suctioned out his nose. Not long after the breathing treatment started, he was back to his good 'ole self, and was breathing just fine, so we put him back to bed. Well just after 4 a.m. he started gasping for air again. We started another breathing treatment, but that didn't seem to do anything at all so we made the decision to bring him to the hospital. (I know, we were doing so good up until now!) Well I didn't feel comfortable bringing him to the hospital by myself because he was retracting so bad--his arms and his legs were literally jumping up and down because he was using his entire body to breathe! It almost looked like he was having a seizure--so we ended up having to call the ambulance to pick us up.
This time around, the ambulance was there in minutes! The people were young, and weird. The lady working on Lucas used about every single supply they had in the back of the car. Well Lucas is an extremely hard stick (for an IV), but little miss enthusiastic said she "had" to try--but she was only gonna try once...while the car was moving at that! She then proceeds to tell me that if she can't get a line, then she will have to give him his medicine intravenously if he needs it. Now, I'm pretty good with medical terms, but I guess she could tell I had a blank look on my face. Either that or she just has no bedside manner, because she then looks at me with a straight face and says, "you know...like with a drill." I just said, "uh huh" and cursed her under my breath as I was rolling my eyes. If that little girl thinks she's getting anywhere near my boy with a drill, she's out of her freakin' mind!
It seemed to take forever to get to the hospital. Oddly enough, there weren't many people in the ER and they put us straight in a room. Within a couple of hours, we were admitted to the hospital. His lungs were SO juicy, I really thought he had pneumonia. But, as it turns out, my little guy had the croop! The doc said he probably caught it from Joshua's runny nose earlier in the week. He was on breathing treatments a few hours apart throughout the day, and they put him on steroids in case asthma played any part in this. They also gave him a prescription for Miralax (a stool softener) to help him have daily b.m.'s instead of weekly. **Angelic voices singing hymns** I can not tell you what a relief it is to have this. We just got it filled yesterday, but it's already working! And can you believe Walgreens refused to fill it for me since they carried it on the shelf. The woman told me that "most insurance companies won't pay for this anymore since they're cutting back and told me to go buy it off the shelf. What the heck! She didn't even try to get it approved! Good thing my awesome Godfather works for a pharmacy because it was approved. And thank goodness, because otherwise it would've cost me about $15 every 10 days. That adds up quick!
The Croop! That's the big thing with a "special needs child", a little thing like a common cold could put us in the hospital for a few days. I thank God that it was nothing serious--this time. And pray that we can stay healthy this winter. This is only the first week that summer's over and we're already in the hospital.
And on another note, last week Dr. Niyazov prescribed Lucas yet another vitamin to his daily regime. So I went to Whole Foods to pick it up, along with another vitamin we ran out of, and can you believe I spent $40 on two small bottles? The new bottle was on sale for $20 and will last me about a month and a half I think. But the other bottle will only last me 10 days. We had been getting the small bottle from a place online that carries it in bulk (that last for about two months or so) but that one costs about $100--and that's at a huge discount our doctor worked out for us. I have come to the conclusion that I hate money. If you think it's expensive to have kids these days, try having a special needs child. A lot of these medicines are just vitamins that are carried over the counter and not covered under our insurance so we end up paying for a bunch of his meds.
Well if you can believe it, I'm actually not finished with all what I have to say, but maybe if I wrote more often I wouldn't have such long entries and could fit all my thoughts onto the page nicely. But, Joshua started his first day of Pre-K at the Wee Care Center and it's time to go pick him up, so I have to go now. My little boys are growing so fast! Time is flying by.
September 2, 2010
Change is Coming
So...the sleep study went well. He had (at least) 2 seizures while the EEG was going. I heard the doc say that it looked like the seizures started in his right brain, but then moved to both the right and left, then the left side faded out and the right side would be the last to fade out. I also heard him say "..well that doesn't tell us much.." so I'm hoping with further studying of the EEG results, he will be able to pinpoint where the seizures are coming from.
Since the time got so screwed up that day, the doctor thought we weren't going in so he didn't bring the blood test results that measured the phenobarb levels. And of course, he couldn't remember the results, so he still hasn't switched him to another medicine yet. And I called the nurse for the follow up appointment today and still haven't heard back yet (go figure). So until then, we're having to ride the phenobarb out. :(
I swear, when you have an awesome doctor, you always have a shitty nurse or vice versa. This new doc gave me his email address and actually emailed me back. He also apologized profusely about the time mix up with the hospital and told me that the video I sent him was extremely helpful, and yet his nurse won't even return my phone calls.
This morning we had occupational therapy in Metairie. As soon as I got Lucas out of the stroller, he started screaming, swatting at my face and throwing himself around like a fish out of water. He got so worked up and would only calm down when he was lying on his back. He wouldn't even sit up. In fact, he screamed so much, I finally picked him up and he instantly went to sleep!! We're gonna give it a couple more tries before we change the time because I'm really hoping that the key is changing the medicine and getting rid of those seizures!
So today we had our follow up appointment with the geneticist. This visit actually went very well for a change. He said he is extremely happy with Lucas' physical appearance--he's a little tall for his age (no, I'm not kidding), but his weight is perfect and he is very alert! I told him about my concerns that his physical abilities may be regressing a bit, but he told me not to worry about that just yet. That sometimes after surgery, a child will regress a bit, and since even "normal" children do this sometimes, special needs children can be affected even worse by surgery. I also told him about my concerns that the phenobarb is affecting this and causing him to have extreme behavior, and he actually told me that he things it's great that Lucas is having temper tantrums. That this means he's trying to communicate with us and just gets very frustrated and will start these tantrums to get our attention, or so he can communicate to us what he wants. He says they may be worse that the average child's tantrums until he can communicate with us--either by speaking or signing. So people, send me your pictures so I can make that book already. Or I'll video tape a tantrum every day and post it on here.
Since the time got so screwed up that day, the doctor thought we weren't going in so he didn't bring the blood test results that measured the phenobarb levels. And of course, he couldn't remember the results, so he still hasn't switched him to another medicine yet. And I called the nurse for the follow up appointment today and still haven't heard back yet (go figure). So until then, we're having to ride the phenobarb out. :(
I swear, when you have an awesome doctor, you always have a shitty nurse or vice versa. This new doc gave me his email address and actually emailed me back. He also apologized profusely about the time mix up with the hospital and told me that the video I sent him was extremely helpful, and yet his nurse won't even return my phone calls.
This morning we had occupational therapy in Metairie. As soon as I got Lucas out of the stroller, he started screaming, swatting at my face and throwing himself around like a fish out of water. He got so worked up and would only calm down when he was lying on his back. He wouldn't even sit up. In fact, he screamed so much, I finally picked him up and he instantly went to sleep!! We're gonna give it a couple more tries before we change the time because I'm really hoping that the key is changing the medicine and getting rid of those seizures!
So today we had our follow up appointment with the geneticist. This visit actually went very well for a change. He said he is extremely happy with Lucas' physical appearance--he's a little tall for his age (no, I'm not kidding), but his weight is perfect and he is very alert! I told him about my concerns that his physical abilities may be regressing a bit, but he told me not to worry about that just yet. That sometimes after surgery, a child will regress a bit, and since even "normal" children do this sometimes, special needs children can be affected even worse by surgery. I also told him about my concerns that the phenobarb is affecting this and causing him to have extreme behavior, and he actually told me that he things it's great that Lucas is having temper tantrums. That this means he's trying to communicate with us and just gets very frustrated and will start these tantrums to get our attention, or so he can communicate to us what he wants. He says they may be worse that the average child's tantrums until he can communicate with us--either by speaking or signing. So people, send me your pictures so I can make that book already. Or I'll video tape a tantrum every day and post it on here.
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