in an hour and forty-five minutes our baby will be 2.5 years old. He started preschool today and absolutely loved it! I loved that we didn't cry because we knew he was in excellent hands. Big sister Montana is in the same school and I think it made it easier. Of course with her I didn't cry until I took her for her first day of kindergarten even though it was at the same school! He wanted to go play on the playground first thing but he went inside without any fits! He stayed for three hours and when daddy went to pick him up, he didn't want to leave his teacher or his new friends! We got pictures and videos throughout the morning and I know in my heart we picked the right school for him too. I got a message from his teacher saying if she didn't know anything about him she would have only noticed that his speech wasn't super developed! For his daddy and me that's amazing news to hear, as only a month ago he wasn't interacting or wanting to play. The past month has been amazing.
I still believe in prayer and him sleeping has made a huge difference. We are to the point we are trying a topical medicine to prevent the spitting and pinning him down. Since we are only on night 2, we will see how it goes. We tried crushing the chewables up and hiding them in food but with the sensory issues he finds it in everything we have tried so far. But that's okay. His OT has said she can see a night and day difference in the past month in his interaction, he isn't screaming when we are out so long as we let him walk/run when he needs to. He follows sissy everywhere and she's to the point she says "he plays with me mommy"! I'll take the small steps! By the time he is 5, you won't know he's been behind... As we said one step at a time, he's getting there!
He will have a full evaluation to see if he needs and IEP through the public school system in the next 45 days, it will take effect when he turns 3, my hope is he won't need it. I hope when he goes back to see the developmental specialist she says any signs of autism are gone and he's fine in her opinion. Only time will tell. He won't outgrow the Klinefelters that's in his DNA, quite literally. We are seeing some issues from it:
His teeth are rapidly decaying (despite him attempting to brush) Klinefelters causes this
He is very flat footed and OT has suggested we may need to have a PT assessment done to see if he needs braces on his feet. I'm not opposed to it, but I have heard that the braces cause more damage later because it forces the knees and hips out. So we will at least talk to PT and then make a more informed decision.
We leave for UVA next week for his dental work and his feeding/speech evaluation I'm nervous for both, but maybe the dental issues is causing the lack of sleep, but then it could be from the autism or from something else.
Im not going to worry about it, honestly I know where we have been, I see the small steps and in the words of Evan Rasnick "God's Got This"!
Tuesday, August 23, 2016
Monday, August 15, 2016
The changes continue
The past week has been trial and error. We have not found the best way to get the medicine down and Dacotah has learned to spit it back out. *Bummer* so getting a full dose in him is impossible. But thankfully Anderson's Compounding Pharmacy in Bristol can make a chewable tablet of Visteril. (The drug manufacturer discontinued making Visteril years ago because of the cost. But some compounding pharmacies can make a topical and a chewable). The best part is they can flavor it grape like Benadryl and our hope is that he will chew it up and it wont' be a horrendous fight. Worst cause, we can grind it up and put it on an Oreo because the taste shouldn't be a nasty mint. We will know by Wednesday (HOPEFULLY) if it's going to work like we are hoping.
Dacotah continues to amaze us, it's almost like his brain woke up and he's interacting with everyone. Montana is even more open to playing with him whereas before she quickly became bored because he would ignore her. He works board puzzles and chit chats. we still can't understand everything he says but he is getting better. He added "up, down, and more this week alone" and he is starting to put two words together like "where go" for where did it go.
We took him to the preschool orientation at his school to be, and to start with he walked around in circles around the alphabet rug, then he went in and lined Ms. Monica's cars up. Even though there were other kids there he never got upset and just made him a place to play!!!
He had OT with Mel on Thursday and again it was night and day difference, he is using both hands and interacting very well. We were talking how just a month ago we were wondering if we'd ever get him to talk. We are making strides thanks to the sleep issues getting fixed.
We have his dental work scheduled at UVA on the 31st. Montana will be staying with a friend here in town so she doesn't have to miss school. I dread the trip up because he still doesn't travel the greatest but they can get the x-rays, and do everything needed possibly the same day or the next morning. I'd think it'd be the next morning since it'll be general anesthesia but we should be back home that evening. Please pray everything goes well.
The ride to mamaw and papaw's house on Friday was AWFUL.... it wasn't the worst one but I had loaned our van to my dad for his trip out west and so we had the car with three kids in the back and we left heading West... needless to say the SUN was right on him and he fussed and cried every 15-30 minutes until we could distract him with something just long enough to give us a break.... Sunglasses would be awesome right????? I wish he'd leave them on his head, trust me we have tried. He loves spending time with Mamaw and Papaw, and they love having the kids down to visit. As long as the drive is we still try to visit at least once a month.
Saturday he ate next to nothing, we forgot to pack his chicken fries and so we grabbed a bag at Kroger. He wouldn't touch them, Montana wouldn't eat them..... He wouldn't drink anything and didn't want to nurse either. By Sunday he was back to eating everything in sight. Who knows may have been a off day.
Sunday we all went to church, and I decided to let him stay in the sanctuary until it was time for the sermon to start to see how he would do. He walked up and down, drove his car around, laid on the floor, sat on all of us, and listened to the music. He even went up for Children's church to listen to Ms. Wanda's story, all without having a melt down..... IMPRESSIVE.... I took him back to the nursery with Ms. Anne and he did great with her this time too... See sleep helps.
The ride home wasn't as horrible as the way down. In fact it was 85% better. We stopped by Putt Putt to see Aunt Marcia and he threw a fit wanting to go out and play putt putt but the weather wasn't so nice.
We got home and he was ready for bedtime around 8, but as I mentioned earlier he's a spitter when it comes to giving him medicine. So he was waking up every 2-3 hours last night, but stayed in his bed, he would yell Mommy mommy mommy, I'd go lay with him and he would go right back to sleep. I'm debating with his growth spurt and weight increase if I need to make him a heavier blanket. Montana has been begging for her own as well, so maybe that'll be my Christmas gift that is homemade.
Dacotah continues to amaze us, it's almost like his brain woke up and he's interacting with everyone. Montana is even more open to playing with him whereas before she quickly became bored because he would ignore her. He works board puzzles and chit chats. we still can't understand everything he says but he is getting better. He added "up, down, and more this week alone" and he is starting to put two words together like "where go" for where did it go.
We took him to the preschool orientation at his school to be, and to start with he walked around in circles around the alphabet rug, then he went in and lined Ms. Monica's cars up. Even though there were other kids there he never got upset and just made him a place to play!!!
He had OT with Mel on Thursday and again it was night and day difference, he is using both hands and interacting very well. We were talking how just a month ago we were wondering if we'd ever get him to talk. We are making strides thanks to the sleep issues getting fixed.
We have his dental work scheduled at UVA on the 31st. Montana will be staying with a friend here in town so she doesn't have to miss school. I dread the trip up because he still doesn't travel the greatest but they can get the x-rays, and do everything needed possibly the same day or the next morning. I'd think it'd be the next morning since it'll be general anesthesia but we should be back home that evening. Please pray everything goes well.
The ride to mamaw and papaw's house on Friday was AWFUL.... it wasn't the worst one but I had loaned our van to my dad for his trip out west and so we had the car with three kids in the back and we left heading West... needless to say the SUN was right on him and he fussed and cried every 15-30 minutes until we could distract him with something just long enough to give us a break.... Sunglasses would be awesome right????? I wish he'd leave them on his head, trust me we have tried. He loves spending time with Mamaw and Papaw, and they love having the kids down to visit. As long as the drive is we still try to visit at least once a month.
Saturday he ate next to nothing, we forgot to pack his chicken fries and so we grabbed a bag at Kroger. He wouldn't touch them, Montana wouldn't eat them..... He wouldn't drink anything and didn't want to nurse either. By Sunday he was back to eating everything in sight. Who knows may have been a off day.
Sunday we all went to church, and I decided to let him stay in the sanctuary until it was time for the sermon to start to see how he would do. He walked up and down, drove his car around, laid on the floor, sat on all of us, and listened to the music. He even went up for Children's church to listen to Ms. Wanda's story, all without having a melt down..... IMPRESSIVE.... I took him back to the nursery with Ms. Anne and he did great with her this time too... See sleep helps.
The ride home wasn't as horrible as the way down. In fact it was 85% better. We stopped by Putt Putt to see Aunt Marcia and he threw a fit wanting to go out and play putt putt but the weather wasn't so nice.
We got home and he was ready for bedtime around 8, but as I mentioned earlier he's a spitter when it comes to giving him medicine. So he was waking up every 2-3 hours last night, but stayed in his bed, he would yell Mommy mommy mommy, I'd go lay with him and he would go right back to sleep. I'm debating with his growth spurt and weight increase if I need to make him a heavier blanket. Montana has been begging for her own as well, so maybe that'll be my Christmas gift that is homemade.
Sunday, August 7, 2016
Medicine, Sleep, and a night and day difference
So where do I begin? Let's start with a disclaimer: (We have tried everything we could try prior to resorting to prescription medicine. After a length discussion with one of his specialist we decided to give it go and the results are astounding).
I guess I should say I had finally had enough. I was tired of never sleeping through the night. I was tired of the constant whiny, screaming, and fighting. I was tired.... I was exhausted... and quite frankly I mentally got to the point I knew we had to do something. No, I am not selfish, but if you count my pregnancy (the up and down at night to go to the potty) I had not had a full night of sleep in 3 years. I still haven't had a full night but it's 95% better.
I had tried giving Dacotah prescription Hydroxizine (it's like Benadryl but different) I had used it for Montana and her night terrors/nightmares etc, and she still uses it on the rare occasion (she will ask for it) when she can't seem to fall asleep.
I talked to the pharmacists and we had tried a bunch of different flavors. They are all awful tasting and even the chocolate tastes super strong of mint and is disgusting. I tried the easy way of trying to get him to taste it, it doesn't work. So like most things we have to hold him down and forcefully get him to take it.
The first night he slept 5 hours woke up briefly to nurse and slept 3 hours.
Second night around the same thing
Thursday night last week he went to bed around 8:30 slept 7 hours, then got up for the day at 8am. IMAGINE THAT 1 wake up in 11.5 hours...
His naps in the day are longer without any extra medicine. (Here's the awesome kicker, he's prescribed 6ml up to 4x a day. He takes 2-3ml at night only).
Okay so now that I admitted we medicate our kid. Would I change it? No, I would not. You see with the extra sleep he is talking more. He's interacting, he's watching cartoons with his daddy, he's chasing his sister. He's calmer. We made it through Walmart today without a meltdown whatsoever. We went to Putt Putt tonight and stayed for 2 hours and he barely whimpered, even when we were outside with a hundred or more people!!!!
Oh did I mention his OT, Mel, was so amazed at his interaction and eye contact! It's almost as though we have a different kid with nothing wrong with him. It's night and day difference. In the past week, he's started to say the words he lost and appropriately. He worked a board puzzle that before he showed no interest in. We think with the extra sleep and him going to daycare he can make leaps and bounds. Is he talking in sentences? no. Is he saying two words or more? no. But you can see him trying to say new words....Do I think it's going to be a slow process, maybe, but we are making progress. The sleep is helping him stay focused for longer periods of time.
So on a lighter note, the other day Dacotah is in the den and hollers out "Da Dada" Travis said he went to see what he needed because he never says da da, and hadn't in months. He looks in the den and Dacotah is holding something brown in his hand. Travis said he was laughing and gagging so hard trying to get him cleaned back up and his diaper changed. As soon as they were done, Dacotah signed "I love dada, I love mommy" Not only did he sign it, he said it as he signed it.... He hasn't done it again, but he will in his own time.
Sorry, we didn't update sooner, but we were waiting to see if the medicine would work or if it would be good for a few night and he regressed. Thankfully not. The best part is as his body adjusts to sleeping, he should be able to learn to sleep through the night on his own!
I guess I should say I had finally had enough. I was tired of never sleeping through the night. I was tired of the constant whiny, screaming, and fighting. I was tired.... I was exhausted... and quite frankly I mentally got to the point I knew we had to do something. No, I am not selfish, but if you count my pregnancy (the up and down at night to go to the potty) I had not had a full night of sleep in 3 years. I still haven't had a full night but it's 95% better.
I had tried giving Dacotah prescription Hydroxizine (it's like Benadryl but different) I had used it for Montana and her night terrors/nightmares etc, and she still uses it on the rare occasion (she will ask for it) when she can't seem to fall asleep.
I talked to the pharmacists and we had tried a bunch of different flavors. They are all awful tasting and even the chocolate tastes super strong of mint and is disgusting. I tried the easy way of trying to get him to taste it, it doesn't work. So like most things we have to hold him down and forcefully get him to take it.
The first night he slept 5 hours woke up briefly to nurse and slept 3 hours.
Second night around the same thing
Thursday night last week he went to bed around 8:30 slept 7 hours, then got up for the day at 8am. IMAGINE THAT 1 wake up in 11.5 hours...
His naps in the day are longer without any extra medicine. (Here's the awesome kicker, he's prescribed 6ml up to 4x a day. He takes 2-3ml at night only).
Okay so now that I admitted we medicate our kid. Would I change it? No, I would not. You see with the extra sleep he is talking more. He's interacting, he's watching cartoons with his daddy, he's chasing his sister. He's calmer. We made it through Walmart today without a meltdown whatsoever. We went to Putt Putt tonight and stayed for 2 hours and he barely whimpered, even when we were outside with a hundred or more people!!!!
Oh did I mention his OT, Mel, was so amazed at his interaction and eye contact! It's almost as though we have a different kid with nothing wrong with him. It's night and day difference. In the past week, he's started to say the words he lost and appropriately. He worked a board puzzle that before he showed no interest in. We think with the extra sleep and him going to daycare he can make leaps and bounds. Is he talking in sentences? no. Is he saying two words or more? no. But you can see him trying to say new words....Do I think it's going to be a slow process, maybe, but we are making progress. The sleep is helping him stay focused for longer periods of time.
So on a lighter note, the other day Dacotah is in the den and hollers out "Da Dada" Travis said he went to see what he needed because he never says da da, and hadn't in months. He looks in the den and Dacotah is holding something brown in his hand. Travis said he was laughing and gagging so hard trying to get him cleaned back up and his diaper changed. As soon as they were done, Dacotah signed "I love dada, I love mommy" Not only did he sign it, he said it as he signed it.... He hasn't done it again, but he will in his own time.
Sorry, we didn't update sooner, but we were waiting to see if the medicine would work or if it would be good for a few night and he regressed. Thankfully not. The best part is as his body adjusts to sleeping, he should be able to learn to sleep through the night on his own!
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