We have done a lot in the last two weeks. We went to visit uncle Wes, Aunt Ashley, and baby Caleb last weekend. We had a great time. The drive down was pretty rough from the state line to their house but overall it was okay.
mommy did have a moment of sadness when I realized just how much he should be saying and doesn't. But I also saw just how much he does do that just a few months back he couldn't/ didn't do. We went to the train museum and he of course loved it. Both kids love trains but Dacotah shakes with excitement over and over again. But guess what he now points and says look!!!!!!!!!! Eeekkkk. Later Saturday evening we went to the Duke vs. Wake Forest game (this was Dacotah's second game). Dacotah did good about 3 minutes into the game but then he wanted to walk and run around the concession stands. I am thankful for his backpack monkey. He stayed outside until the end of the first quarter and his daddy took him inside the Players Lounge so he could run and play while daddy watched the game on the big screen. I offered to switch out at halftime but daddy said they were both comfortable and to enjoy the game with sissy, Ashley, and Caleb outside. If you had told me four years ago I'd love football I would say you were crazy, now I can't wait until Saturday's to watch both TN and Duke play. Unfortunately Wake Forest won and Duke lost. After the game we went inside to visit Uncle Wes and even though it was loud and a lot of strange people Dacotah stayed calm! Another plus. He interacted and played with Caleb when we got back home, they had so much fun and love one another a lot. We left early Sunday to come back before the sun headed West. Dacotah rode the entire five hours back with barely a whimper.
Dacotah had OT and Speech this week. We get to keep his speech therapist Katie (the other one is named Katie also, but he related so well with this one so we requested to keep her even though the first Katie was coming back from maternity leave). Katie is very excited to see him trying to talk more! This week we tried putting him in underwear because he kept taking his pullups off. I came home from work and said "Dacotah do you have paw patrol" he nods his head yes and then gets excited and says "mommy, look"!!!!!!!!!!!!!! He said two words without prompting!!!!!!! I cannot begin to tell you how amazing that is to hear... Oh wait you already know that :) He's trying and hadn't given up so that's a great feeling.
His preschool teacher also notes that other than his speech he seems as normal as any other 2.5 year old she has seen. When we first put him in preschool we weren't sure how it would go I knew how he was at home, when we would go out, and how he was in a structured environment and honestly she and I were both wondering how it would work. I'm thankful for the leaps and bounds he is taking, I don't care how he's done it, I'm just thankful. I'm thankful that he tries to interact with his friends, that he is trying to talk, and that he is making progress. He still has moments when he isn't quite sure what to do but he figures it out.
He's playing peek a boo and he's chasing his sister and loves being chased! His eye contact has increased exponentially. His sleeping is not the greatest but I'll take 80% as a huge step forward. His immune system is still growing and he is no longer breaking out from a cooked egg!!!! So every small step we are making progress!
I found a Klinefelter's support group for kids, it has been so full of useful information. If I were coding his diagnosis the Klinefelter's is most than likely the reason behind his speech delay and is confirmed the reasoning for the low muscle tone and over pronated feet. (We see the orthotics specialist next Thursday to get his feet measured for braces). He still has moments where he doesn't like touch but is more towards a normal two year old in that area.
I don't care if it's a crawl ahead one day at a time, I can see the overwhelming progress he is making, the eye contact and the interaction that at one time none of us knew for sure if it would ever happen! He is making progress and we will keep pushing forward one day at a time!
Saturday, September 17, 2016
Friday, September 9, 2016
The past week and a visit to UVA + another week!
The last week has been crazy and busy. Dacotah enjoyed two more days of preschool, and made progress both days. We told him bye on Thursday instead of sneaking out, he looked right at us and matter of factly says "bye". His teacher sent photos and messages on him deciding he would try painting with his classmates but would need his special chair! It is made of wicker and is great for his sensory! He is talking more at home and saying at least 1-2 new words a week! The speech therapist says he is definitely not "severe" anymore.
Sunday we tried going out. He did great in the restaurant, did okay in the car but ran and screamed in the mall. Not sure if it was too much stimulation or what but he was not a happy shopper. He may be 2.5 but let me tell everyone he can destroy a room in five minutes or less. Daddy gets cranky because he never gets to stop picking up. Mommy says forget it until after he goes to bed. Makes clean up easier!
We changed his medicine to a topical that's applied to the bottoms of his feet after he goes to sleep. He is sleeping much better and he is more interactive during the day. On a super positive note, we have confirmed this multiple ways but he is no longer breaking out if we touch him with milk. Life is so much easier! We can skip eggs but milk is on/in absolutely everything. So far with just touch he is no longer breaking out. However, if he eats a bite (we tried under doctors supervision) he still vomits within 2-4 minutes. :( We think as his sleep builds up his immunity will get stronger and he will "outgrow" both. Please keep praying!
As I'm typing this we are on our way to UVA for the dental appointment and the feeding/speech eval. Yep as parents we are both nervous. I will update the post and publish it once we are done.
Okay sorry it's been another week since I started the last post. Life is crazy and super busy. UVA went well, it actually went better than expected. Dacotah does have to have dental surgery but it won't be until November 22! He does not have to have all of his teeth capped in fact only 5-6 are any concern, but this eval was done with four adults holding him down to see what they could see. The dental is caused by his genetic disorder and not lack of dental care (despite not being able to brush) the dentist said Klinefelters have dental issues even with the utmost dental hygiene! *makes me feel like a better mom*
The feeding/speech evaluation went great as well. He is now 9-12months delayed in speech putting his speech at the 18-21 month range!!! Woot woot go Dacotah! The sleep is MAKING A HUGE difference in his alert level and his willingness to talk more!!! We are going to do a follow up with them on Nov 21st just for updated progress.
He has adapted well to preschool and enjoys going. We have had a few tears but his teacher Ms. Monica is fantastic at redirecting and comforting him!!!
This past Monday Physical Therapy came to our house (Pat or Pam, I am horrid with names) said that we need to add PT a minimum of twice a month. She has also advised we consult Orthotics for ankle braces. She was so helpful with providing knowledge to let me know what we could expect with Klinefelters. He walks on the insides of his feet which bow his knees outwards so when he walks it's not like a duck per se but that's how his hips move. As he grows taller super fast it would put more stress on his ankles, knees and hips, so we need to correct the alignment as soon as possible.
The topical Visteril is working great, there isn't any meltdowns on taking medicine orally, and I just attach it to him once he goes to sleep!
This weekend we are going to see Uncle Wes, Aunt Ashley, and cousin Caleb and try doing a football game at Duke. Do I expect he will make it through the game, nope. Thankfully we have access to a calm down room that has the game on a huge tv, should we need it. Let's go Duke!
Sunday we tried going out. He did great in the restaurant, did okay in the car but ran and screamed in the mall. Not sure if it was too much stimulation or what but he was not a happy shopper. He may be 2.5 but let me tell everyone he can destroy a room in five minutes or less. Daddy gets cranky because he never gets to stop picking up. Mommy says forget it until after he goes to bed. Makes clean up easier!
We changed his medicine to a topical that's applied to the bottoms of his feet after he goes to sleep. He is sleeping much better and he is more interactive during the day. On a super positive note, we have confirmed this multiple ways but he is no longer breaking out if we touch him with milk. Life is so much easier! We can skip eggs but milk is on/in absolutely everything. So far with just touch he is no longer breaking out. However, if he eats a bite (we tried under doctors supervision) he still vomits within 2-4 minutes. :( We think as his sleep builds up his immunity will get stronger and he will "outgrow" both. Please keep praying!
As I'm typing this we are on our way to UVA for the dental appointment and the feeding/speech eval. Yep as parents we are both nervous. I will update the post and publish it once we are done.
Okay sorry it's been another week since I started the last post. Life is crazy and super busy. UVA went well, it actually went better than expected. Dacotah does have to have dental surgery but it won't be until November 22! He does not have to have all of his teeth capped in fact only 5-6 are any concern, but this eval was done with four adults holding him down to see what they could see. The dental is caused by his genetic disorder and not lack of dental care (despite not being able to brush) the dentist said Klinefelters have dental issues even with the utmost dental hygiene! *makes me feel like a better mom*
The feeding/speech evaluation went great as well. He is now 9-12months delayed in speech putting his speech at the 18-21 month range!!! Woot woot go Dacotah! The sleep is MAKING A HUGE difference in his alert level and his willingness to talk more!!! We are going to do a follow up with them on Nov 21st just for updated progress.
He has adapted well to preschool and enjoys going. We have had a few tears but his teacher Ms. Monica is fantastic at redirecting and comforting him!!!
This past Monday Physical Therapy came to our house (Pat or Pam, I am horrid with names) said that we need to add PT a minimum of twice a month. She has also advised we consult Orthotics for ankle braces. She was so helpful with providing knowledge to let me know what we could expect with Klinefelters. He walks on the insides of his feet which bow his knees outwards so when he walks it's not like a duck per se but that's how his hips move. As he grows taller super fast it would put more stress on his ankles, knees and hips, so we need to correct the alignment as soon as possible.
The topical Visteril is working great, there isn't any meltdowns on taking medicine orally, and I just attach it to him once he goes to sleep!
This weekend we are going to see Uncle Wes, Aunt Ashley, and cousin Caleb and try doing a football game at Duke. Do I expect he will make it through the game, nope. Thankfully we have access to a calm down room that has the game on a huge tv, should we need it. Let's go Duke!
Tuesday, August 23, 2016
First day of preschool
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"!
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"!
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!
Friday, July 29, 2016
29 months and we meet the genetics specialist
To be honest I was going to go back and find my Facebook post but I don't have the brain power to search from my phone. So I'll retype it from memory.
Dacotah is 1 month away from starting preschool at the school where his sister goes. I'm both nervous and excited for him and have already talked to his teacher about his allergies and his basic needs. The biggest thing that will keep him the safest is making sure everyone washes their hands before entering the room.
I'm not 100% sure yet but he seems to be less sensitive to contact to milk. I've reintroduced small amounts of dairy in my diet outside of our house and I'll kiss him when I get home and he's not having lip prints in the form of hives like he once did. I'm paranoid of trying a skin test to confirm because the last time he ended up taking Benadryl for barely touching the tip of a chocolate bar. May be best to try it again when we are home and can keep a close eye on it and see how he does. Another option would be to repeat the blood test with Alcat... Something else insurance won't cover...:(
We debated a lot with Big sister she really wanted to go to public school this year. But honestly I do not like that the schools here only teach SOLs and they don't have textbooks at all in middle school???? We debated with ourselves if it was best to send her anyway or leave her where she's been since she was two and a half. We have compromised that at least one more year so Dacotah has someone at the school that he knows would be best. That way too she would be able to help spot if he needs mommy called in the event of an allergic breakout.
I need to contact the department of social services and see if they provide assistance in tuition for Dacotah since his ISFP states going to daycare/preschool would be a difference. That would help a lot with the cost and maybe he could go more than two days a week. So yeah lots of financial decisions on top of weekly OT and other specialist appointments.
He had an appointment with the ETSU pediatric specialist who confirmed Dacotah does have Klinefelters Syndrome which basically says he has an extra X chromosome in his DNA. Instead of 46 XY he is 47XXY. Klinefelters can cause learning disabilities and 27% of patients have Autism and 68% have or develop ADHD. The specialist made the comment "but he makes great eye contact which isn't autistic, but he doesn't like touch at all which is autistic"... I really wanted to say that's awesome that he does make eye contact and yes it is atypical but it doesn't not rule at autism... As much as I wish it did everything else from the touch, severe sleep disturbance, sensory overload etc confirm his diagnosis. With Klinefelters most men do not know they have it until they are married. They use to believe men with XXY were sterile and couldn't have biological children, thankfully with IVF options this is no longer the case. On a positive boys with Klinefelters tend to be taller, by age 5 he could already be off the growth chart for height!
This isn't a debate about what is or isn't it's just frustrating when I've heard but he's normal, yet again this week from family. NO HE IS NOT NORMAL, normal would be walking, talking, smiling, jumping, laying in the middle of the floor screaming terrible two year old!!!!!!! Normal would be him talking in 2-3 word sentences instead of needing to sign I love you, he would be saying it... So PLEASE FOR MY SANITY stop outwardly telling me he is normal because it sucks having to say "oh he doesn't talk" when you keep telling him to say something over and over expecting to make me look like an idiot...
I have to say the blog keeps me sane, I sometimes hesitate on putting my feelings out there but it helps deal with everything going on. It's easier to go back and say here is what is the same versus different.
OT is coming every week now. But I am getting super frustrated with Speech, the second therapist they assigned was due with her own son six weeks from the day we met her. Which is fine I have no problems with that, but he's not had speech since we came back from vacation. I'm going to find out what's going on there hopefully later today. I also need to get his ISFP with EI changed so they aren't
so focused on his feeding. He had an appointment at UVA for their feeding program in August some time. I don't know yet if we will keep that appointment. He eats other food, granted its chicken and French fries for breakfast lunch and dinner but he's not constantly nursing anymore :) we have gone to Walmart without massive meltdowns but he has to walk and had a habit of running off on the spur of a split second. :( He still isn't talking per se but on several occasions, he looks at us points to something and jabbers... He is getting closer every day and in his own time he will talk our heads off.
After more than 2 years we figured out a way to get his medicine down with him screaming and spitting half of it out but a fraction of the dose has helped him tremendously the last three nights. It may sound mean, disgusting, cruel but with the genetics being different he is not able to sleep on his own without waking every 2 hours all night long. With Doctor prescribed hydroxyzine (an antihistamine like Benadryl) he is sleeping!!!!!!!!!!! We give it to him when he says he is ready to go night night. He will point to the bedroom and say night night (it's not clear but we know what he is asking). I give him his medicine and he's sleeping at least 5-6 hours wakes up once to nurse and sleeps until 7-8am. The last three days he's smiling more and seems to be calmer with less screaming fits.
Update on 7/29 I started writing the top portion two nights ago, and just now got on the desktop so I can finish this post. Today Dacotah said "I love puppy" He signed it as he said it. I was beyond thrilled and the smile on his face let me know he was excited that we understood him. He is smiling so much the past four days, it's great to see him happy and interacting more.
I found out today that he will have speech with Early Intervention three weeks out of the month. The 4th week they will leave open so we can take him to Mini Miracles to have OT and Speech in their facility on the other day of the week. I'll need to set that up soon.
Honestly, this past week has been the most stressful that I have had and I am not sure why. It could be that we have gotten his nursing down to 3 times in a 24 hour period, but whatever is causing the mood swings it can disappear anytime.
Lets wrangle little man to bed thankfully once we get him down he is still sleeping 4-6 hours at a time. Which is amazing compared to every 1-2 all night for 2 years. :)
Dacotah is 1 month away from starting preschool at the school where his sister goes. I'm both nervous and excited for him and have already talked to his teacher about his allergies and his basic needs. The biggest thing that will keep him the safest is making sure everyone washes their hands before entering the room.
I'm not 100% sure yet but he seems to be less sensitive to contact to milk. I've reintroduced small amounts of dairy in my diet outside of our house and I'll kiss him when I get home and he's not having lip prints in the form of hives like he once did. I'm paranoid of trying a skin test to confirm because the last time he ended up taking Benadryl for barely touching the tip of a chocolate bar. May be best to try it again when we are home and can keep a close eye on it and see how he does. Another option would be to repeat the blood test with Alcat... Something else insurance won't cover...:(
We debated a lot with Big sister she really wanted to go to public school this year. But honestly I do not like that the schools here only teach SOLs and they don't have textbooks at all in middle school???? We debated with ourselves if it was best to send her anyway or leave her where she's been since she was two and a half. We have compromised that at least one more year so Dacotah has someone at the school that he knows would be best. That way too she would be able to help spot if he needs mommy called in the event of an allergic breakout.
I need to contact the department of social services and see if they provide assistance in tuition for Dacotah since his ISFP states going to daycare/preschool would be a difference. That would help a lot with the cost and maybe he could go more than two days a week. So yeah lots of financial decisions on top of weekly OT and other specialist appointments.
He had an appointment with the ETSU pediatric specialist who confirmed Dacotah does have Klinefelters Syndrome which basically says he has an extra X chromosome in his DNA. Instead of 46 XY he is 47XXY. Klinefelters can cause learning disabilities and 27% of patients have Autism and 68% have or develop ADHD. The specialist made the comment "but he makes great eye contact which isn't autistic, but he doesn't like touch at all which is autistic"... I really wanted to say that's awesome that he does make eye contact and yes it is atypical but it doesn't not rule at autism... As much as I wish it did everything else from the touch, severe sleep disturbance, sensory overload etc confirm his diagnosis. With Klinefelters most men do not know they have it until they are married. They use to believe men with XXY were sterile and couldn't have biological children, thankfully with IVF options this is no longer the case. On a positive boys with Klinefelters tend to be taller, by age 5 he could already be off the growth chart for height!
This isn't a debate about what is or isn't it's just frustrating when I've heard but he's normal, yet again this week from family. NO HE IS NOT NORMAL, normal would be walking, talking, smiling, jumping, laying in the middle of the floor screaming terrible two year old!!!!!!! Normal would be him talking in 2-3 word sentences instead of needing to sign I love you, he would be saying it... So PLEASE FOR MY SANITY stop outwardly telling me he is normal because it sucks having to say "oh he doesn't talk" when you keep telling him to say something over and over expecting to make me look like an idiot...
I have to say the blog keeps me sane, I sometimes hesitate on putting my feelings out there but it helps deal with everything going on. It's easier to go back and say here is what is the same versus different.
OT is coming every week now. But I am getting super frustrated with Speech, the second therapist they assigned was due with her own son six weeks from the day we met her. Which is fine I have no problems with that, but he's not had speech since we came back from vacation. I'm going to find out what's going on there hopefully later today. I also need to get his ISFP with EI changed so they aren't
so focused on his feeding. He had an appointment at UVA for their feeding program in August some time. I don't know yet if we will keep that appointment. He eats other food, granted its chicken and French fries for breakfast lunch and dinner but he's not constantly nursing anymore :) we have gone to Walmart without massive meltdowns but he has to walk and had a habit of running off on the spur of a split second. :( He still isn't talking per se but on several occasions, he looks at us points to something and jabbers... He is getting closer every day and in his own time he will talk our heads off.
After more than 2 years we figured out a way to get his medicine down with him screaming and spitting half of it out but a fraction of the dose has helped him tremendously the last three nights. It may sound mean, disgusting, cruel but with the genetics being different he is not able to sleep on his own without waking every 2 hours all night long. With Doctor prescribed hydroxyzine (an antihistamine like Benadryl) he is sleeping!!!!!!!!!!! We give it to him when he says he is ready to go night night. He will point to the bedroom and say night night (it's not clear but we know what he is asking). I give him his medicine and he's sleeping at least 5-6 hours wakes up once to nurse and sleeps until 7-8am. The last three days he's smiling more and seems to be calmer with less screaming fits.
Update on 7/29 I started writing the top portion two nights ago, and just now got on the desktop so I can finish this post. Today Dacotah said "I love puppy" He signed it as he said it. I was beyond thrilled and the smile on his face let me know he was excited that we understood him. He is smiling so much the past four days, it's great to see him happy and interacting more.
I found out today that he will have speech with Early Intervention three weeks out of the month. The 4th week they will leave open so we can take him to Mini Miracles to have OT and Speech in their facility on the other day of the week. I'll need to set that up soon.
Honestly, this past week has been the most stressful that I have had and I am not sure why. It could be that we have gotten his nursing down to 3 times in a 24 hour period, but whatever is causing the mood swings it can disappear anytime.
Lets wrangle little man to bed thankfully once we get him down he is still sleeping 4-6 hours at a time. Which is amazing compared to every 1-2 all night for 2 years. :)
Thursday, July 21, 2016
End of vacation
Vacation was nice even though Dacotah slept horrible and by horrible he was waking up every 60-90 min, every single night we were away. The last two nights were the worst when he woke up every 30-60 minutes and had a hard time going back to sleep. Definitely made for some long days.
On Saturday we went to Wilderness with mamaw, papaw, uncle Wes, Aunt Ashley, and cousin Caleb. Dacotah and Caleb got along so well. Caleb is 16 months old and they created their own communication. I loved watching them play and getting along so nice!
The first night at Wilderness Travis and I watched as Dacotah's body language started going downhill, after his nap (laying in Mommy's arms) he was more irritable and we decided to leave the pool area and figure out dinner. As I've mentioned in previous posts I cringe at going out to eat with him, the allergies and the possibility of him going to the hospital is not worth it to me. By the time we got back to the room Dacotah was a screaming mess. So instead of joining everyone else we sent daddy to bring dinner back to the hotel. Dacotah started calming down when I took him out on the hotel deck for some fresh air. We sat in silence and finally he laid down on his stomach and started smiling again. By the time dinner was over he was ready to visit again before going to bed.
Dacotah has his good days and his bad, but his good moments are starting to get a little longer. I think him being able to communicate yes and no has made a HUGE HUGE difference. Now when he points he will say "dis or dat". He's started saying papaw again, beep beep, and his new favorite is bus. Daddy had worked with teaching him to say I love you with their own sign language. Travis will get Dacotah's attention and point to his eye, then his heart, and then to the person or thing. If you sign I love you to Dacotah he giggles and the smile melts the room. So even though he's not talking yet, I know he will.
He is starting preschool in August about a week after his dental work. He is going to have Montana's preschool teacher Mrs. M. I am still nervous but she was amazing with Montana (sissy had separation anxiety). We have gone over what to do when rashes occur and when it's a Epi-pen concern. It's my hope with it only being half days everything is smooth as he will get the interaction with other kids his age (hoping this leads to an explosive language boost) and it keeps him away from food at school.
So as you can imagine with the Austic Disorder we are meeting with other professionals to rule out any other issues. Today I'm taking him to have his hearing checked. We are positive he can hear but we are ruling it out for the speech delay. It's possible he may hear too well. My fear honestly is he won't be still or quiet enough for the ear phones. Fingers crossed he will watch a silent video of himself long enough for an accurate reading.
Dr. Cook had ordered a genetics test on Dacotah. While this is not a debate I will say at this point we are looking for any answer as to why Dacotah has sensory issues. If there are other problems along with ASD we need to know so he can get the best help possible. The results came back while we were on vacation and he has Kleinfelters Syndrome he has an extra X chromosome in one of his DNA strands. I've read what little information is out there and only one symptom currently seems to affect Dacotah and that's the learning delay. Long term I don't know what it means...sooooo he goes Monday morning to see a genetics specialist with ETSU who will be able to tell us more and what we can expect as he gets older.
Eating textured food or new foods as I have mentioned before is an issue. Dr. Cook has set up a feeding evaluation at UVA in Charlottesville. They called Tuesday and set him an appointment for the end of August.
So as you can expect it has been very busy trying to keep all of his appointments in order. I'm hoping by September to repeat the Alcat test to see where his allergies are at that point. Please pray that he can outgrow the big ones like the milk and eggs! I'm still hopeful his immune system will build up immunity after we find a sleep solution.
We start the 1x a week OT today. I haven't heard from speech, I guess that's my biggest issue right now is everyone is focused more on his nursing than on his speech. I had one doctor tell me he'd never sleep through the night as long as he nursed (yet I have a friend who's 4 month old doesn't nurse at night), I think that makes the point that each child's needs are different.
It gets overwhelming at times especially when I want to know what's going on in his world, I want him to talk so much and I know he will in his own time! My prayer is that by the time he is five you'd never know we had any concerns.
On Saturday we went to Wilderness with mamaw, papaw, uncle Wes, Aunt Ashley, and cousin Caleb. Dacotah and Caleb got along so well. Caleb is 16 months old and they created their own communication. I loved watching them play and getting along so nice!
The first night at Wilderness Travis and I watched as Dacotah's body language started going downhill, after his nap (laying in Mommy's arms) he was more irritable and we decided to leave the pool area and figure out dinner. As I've mentioned in previous posts I cringe at going out to eat with him, the allergies and the possibility of him going to the hospital is not worth it to me. By the time we got back to the room Dacotah was a screaming mess. So instead of joining everyone else we sent daddy to bring dinner back to the hotel. Dacotah started calming down when I took him out on the hotel deck for some fresh air. We sat in silence and finally he laid down on his stomach and started smiling again. By the time dinner was over he was ready to visit again before going to bed.
Dacotah has his good days and his bad, but his good moments are starting to get a little longer. I think him being able to communicate yes and no has made a HUGE HUGE difference. Now when he points he will say "dis or dat". He's started saying papaw again, beep beep, and his new favorite is bus. Daddy had worked with teaching him to say I love you with their own sign language. Travis will get Dacotah's attention and point to his eye, then his heart, and then to the person or thing. If you sign I love you to Dacotah he giggles and the smile melts the room. So even though he's not talking yet, I know he will.
He is starting preschool in August about a week after his dental work. He is going to have Montana's preschool teacher Mrs. M. I am still nervous but she was amazing with Montana (sissy had separation anxiety). We have gone over what to do when rashes occur and when it's a Epi-pen concern. It's my hope with it only being half days everything is smooth as he will get the interaction with other kids his age (hoping this leads to an explosive language boost) and it keeps him away from food at school.
So as you can imagine with the Austic Disorder we are meeting with other professionals to rule out any other issues. Today I'm taking him to have his hearing checked. We are positive he can hear but we are ruling it out for the speech delay. It's possible he may hear too well. My fear honestly is he won't be still or quiet enough for the ear phones. Fingers crossed he will watch a silent video of himself long enough for an accurate reading.
Dr. Cook had ordered a genetics test on Dacotah. While this is not a debate I will say at this point we are looking for any answer as to why Dacotah has sensory issues. If there are other problems along with ASD we need to know so he can get the best help possible. The results came back while we were on vacation and he has Kleinfelters Syndrome he has an extra X chromosome in one of his DNA strands. I've read what little information is out there and only one symptom currently seems to affect Dacotah and that's the learning delay. Long term I don't know what it means...sooooo he goes Monday morning to see a genetics specialist with ETSU who will be able to tell us more and what we can expect as he gets older.
Eating textured food or new foods as I have mentioned before is an issue. Dr. Cook has set up a feeding evaluation at UVA in Charlottesville. They called Tuesday and set him an appointment for the end of August.
So as you can expect it has been very busy trying to keep all of his appointments in order. I'm hoping by September to repeat the Alcat test to see where his allergies are at that point. Please pray that he can outgrow the big ones like the milk and eggs! I'm still hopeful his immune system will build up immunity after we find a sleep solution.
We start the 1x a week OT today. I haven't heard from speech, I guess that's my biggest issue right now is everyone is focused more on his nursing than on his speech. I had one doctor tell me he'd never sleep through the night as long as he nursed (yet I have a friend who's 4 month old doesn't nurse at night), I think that makes the point that each child's needs are different.
It gets overwhelming at times especially when I want to know what's going on in his world, I want him to talk so much and I know he will in his own time! My prayer is that by the time he is five you'd never know we had any concerns.
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