We had Dacotah's IEP meeting. I will say I am glad he still gets his Speech, OT, PT, and developmental therapy after he turns three. The meeting was okay but I realized everyone has their own opinion on our son and what his problem is.
I'll back up a bit. On Monday we went back to see the Developmental specialist, for those who are just now reading the blog, she was the one who did the test that found he had Klinefelter's. She was also the one who said he definitely had sensory processing disorder. She was also the one who did two different tests to confirm her suspicion of Autism mild to moderate level II. We had an in depth discussion about the progress Dacotah has been making and where he is still lacking. While we were there Dacotah threw his hands up and shook his up body as he said Nooooooooooooo, when something didn't fit back in the box the way it was suppose to. She asked if he did this normally and he does, quite a bit and more often now than he did. She said "That's part of his stimming". She asked some other questions and said she would see him back in a year, unless he starts to back track and stops talking completely.
Fast forward back to the IEP meeting. I was left feeling (I was not alone Travis said he felt the same way) that it was all in our imagination what we see at home, vs what someone saw him do or not do at school in the brief 30-60 minute glimpse into his life that they saw. I feel as though what we said and what the specialist said made no change, and we were handed a paper and told "they were not there to diagnose him medically, but educationally and on their scale he does not have autism".
I can say I was deeply heated and split. I am not trying to label our son. I am trying to find an answer.
Everyone agrees he is moderately speech delayed and talks on a level of a 1 year old 10 month. For easy math he is 10 months behind in speech. He is developmentally delayed, which everyone agrees. So from my medical background in the military, why does he have excessive speech delay despite having speech therapy on a weekly basis since April? Why did he lose the words he use to say? Yes, we made A LOT OF PROGRESS when we got him to say no that he didn't want something, or yes he did want this or that. IT MADE our lives 100x better. He sleeps... did I mention we went months without it, oh wait that was years, 2.5 years to be exact that he didn't sleep, didn't nap, and today I felt that everything I said was knocked down.
It came to the point where they said well we have to look at his behavior everywhere, not just how he does at home. Basically if he had autism he would do those things you say in all of his environments. Ummm.... Did they even hear me when I said his OT went out with us, and was not able to help that he lost it at Wal-mart???? I am glad he does amazing in preschool and that there does not seem to be any issues other than he doesn't talk in understandable sentences.
But please do not talk to me as though I have no idea what we have dealt with at home, in the car.... Oh, I was even told "my daughter bucks up when I go to buckle her in too" and several in the room laughed. I should have asked if her daughter screamed nonstop for hours on end in the car too. Does her child refuse to wear sunglasses to keep the sun out of her eyes so she's not screaming when it plays peek a boo. OH I have that on Video, in case anyone would like view our world. Have you seen him in a crowded room where he whimpers mommy while scratching his belly? Have you seen him scream at his sisters birthday party and wish he would stop screaming so you could clear your head and personally thank whoever took him outside so he could wander around and be happy.
I am so frustrated and the more I think about the events the more aggravated I am becoming. I can honestly see why parents give up fighting. They are made to feel like they have no clue, that they are stupid. I will take someone that went to Medical schools opinion over a psychologists opinion, but do NOT PLAY me as stupid and that I don't know my child. I know what HE use to do and what he does not do. Yes he is making progress, and for that I am thankful, but he is not "normal" in the sense of a normal child for his age.
I will backtrack in a blog in the next day or two the trip to Wal-Mart with the OT.
Friday, November 4, 2016
Monday, October 10, 2016
Leaps and bounds
Wow what a difference in the past three weeks. We started PT with Ms. Pat, she pointed out the low muscle tone and weakness that Dacotah has. He prefers his left side so we are working on "wheelbarrow" and dragging him across the floor in a seated position so he starts using his abdominal muscles more. This will help him be more comfortable sitting instead of leaning/laying down all the time. This is normal in kids with KS, so the good thing is we caught it early enough that there is still hope everything will get corrected.
He's talking!!! Not a lot but he's talking some more and repeating when we tell him he has to say something in order to get it. We had a day where he wanted cookies and the following "conversation took place"
D *points to the cookies on the shelf* Cookies?
M: How many do you want 1 or 2?
D: 2!
M: Say please
D: peas
M: *hands him 2, and he turns towards sissy and gives her one*
D: Sissy
M:Say thank you
D: tanks
Ms. Katie the speech therapist is happy with his progress, and while no it's not full on sentences they would expect it's progress. Somehow it wasn't communicated that he has KS, so when I brought it up last week, she was shocked but said it wasn't anything to worry about yet. Some kids with KS don't talk at all, or have a very hard time with socialization, we are working diligently each day to get him use to not only talking, but playing with his sister, and with us. He has show some great improvement.
Ms. Mel is coming tomorrow for OT, the past few times she has pulled him away into the den and worked one on one with him. She's able to maintain his attention for a longer time span. She thinks he is making more progress more rapidly to which we all contribute it to him sleeping.... Oh yes let me tell you the fantastic update
Dacotah sleeps..... without any medication to help him sleep!!!!!!!! I believe in short term medication use and after about four weeks of the visteril on a nightly basis, he started going to sleep with nursing, and then wasn't waking up again until around 6am to nurse again before the sun came up. Well..... I decided to do a trial of not going him the medicine to see how he does. We are at a week, not only is he sleeping okay *knock on the wood* we have cut out all nursing except the night time one for bedtime. He is taking naps during the day (I won't say he doesn't whine to nurse but I just tell him they are night night until bedtime). STEPS and BIG STEPS.... I am hopeful that it will continue.
We got news from the orthotics that his ankle braces are in. Mamaw bought him new shoes in two sizes (we are hopeful the braces will fit into the shoes). Honestly I dread Thursday, but he may surprise us and be very much okay with them. I talked to PT about them on Tuesday last week and she said if he wears them, it will fix his ligament issues, and maybe in a few years he can graduate to just having inserts inside his shoes with no braces. (long term goal) Also attributed to the KS.
We have him scheduled with an endocrinologist in November in JC, I've been doing research and when parents find out their baby is going to be born with KS, they schedule Testerone shots to be given three times during their first year. I'm going to see what our options are given he's past that age, the nurse at the office said there is a possibility they will still agree to give it a try based on his T levels etc. I'll know more after that visit.
He has done fantastic in preschool. I'm hoping soon he will be able to go 4-5 half days instead of the 3, I was super hesitant to commit to more days because I wasn't sure how well he would adapt, but again other than the lack of talking he's right with his sister enjoying music time, and playing with his friends.
He's talking!!! Not a lot but he's talking some more and repeating when we tell him he has to say something in order to get it. We had a day where he wanted cookies and the following "conversation took place"
D *points to the cookies on the shelf* Cookies?
M: How many do you want 1 or 2?
D: 2!
M: Say please
D: peas
M: *hands him 2, and he turns towards sissy and gives her one*
D: Sissy
M:Say thank you
D: tanks
Ms. Katie the speech therapist is happy with his progress, and while no it's not full on sentences they would expect it's progress. Somehow it wasn't communicated that he has KS, so when I brought it up last week, she was shocked but said it wasn't anything to worry about yet. Some kids with KS don't talk at all, or have a very hard time with socialization, we are working diligently each day to get him use to not only talking, but playing with his sister, and with us. He has show some great improvement.
Ms. Mel is coming tomorrow for OT, the past few times she has pulled him away into the den and worked one on one with him. She's able to maintain his attention for a longer time span. She thinks he is making more progress more rapidly to which we all contribute it to him sleeping.... Oh yes let me tell you the fantastic update
Dacotah sleeps..... without any medication to help him sleep!!!!!!!! I believe in short term medication use and after about four weeks of the visteril on a nightly basis, he started going to sleep with nursing, and then wasn't waking up again until around 6am to nurse again before the sun came up. Well..... I decided to do a trial of not going him the medicine to see how he does. We are at a week, not only is he sleeping okay *knock on the wood* we have cut out all nursing except the night time one for bedtime. He is taking naps during the day (I won't say he doesn't whine to nurse but I just tell him they are night night until bedtime). STEPS and BIG STEPS.... I am hopeful that it will continue.
We got news from the orthotics that his ankle braces are in. Mamaw bought him new shoes in two sizes (we are hopeful the braces will fit into the shoes). Honestly I dread Thursday, but he may surprise us and be very much okay with them. I talked to PT about them on Tuesday last week and she said if he wears them, it will fix his ligament issues, and maybe in a few years he can graduate to just having inserts inside his shoes with no braces. (long term goal) Also attributed to the KS.
We have him scheduled with an endocrinologist in November in JC, I've been doing research and when parents find out their baby is going to be born with KS, they schedule Testerone shots to be given three times during their first year. I'm going to see what our options are given he's past that age, the nurse at the office said there is a possibility they will still agree to give it a try based on his T levels etc. I'll know more after that visit.
He has done fantastic in preschool. I'm hoping soon he will be able to go 4-5 half days instead of the 3, I was super hesitant to commit to more days because I wasn't sure how well he would adapt, but again other than the lack of talking he's right with his sister enjoying music time, and playing with his friends.
Wednesday, October 5, 2016
Honest Mommy post
This is a post on my honest personal thoughts.
This is not going to be a positively optimistic post, these are my true feelings as a mom and my constant everyday mind struggle that I am trying to cope with. If that offends you please stop reading and I will post optimistically in the next post but today I just want to cry, be angry, frustrated and vent.
How am I feeling:
Simply stated I have reached the point I am questioning everything I am doing. Obviously the genetics are black and white. But am I making this out to be worse than it really is? He needs braces for his feet confirmed by the PT, the OT, the orthotics doc and the DO agree that it's best for him. We haven't gotten them, yet, but I know he is going to hate them and it's going to be the battle of the wills as he learns to walk "again" corrected. I guess I know he needs them but I still question myself. I want to make sure we do the best thing possible to give him the best chance at being "normal" whatever normal that will be.
I guess what really bothers me is everyone sees the improvement in his speech which I am super thankful for, but I don't call it a huge improvement when the only words you really understand minus a handful is the ones you tell him to say. For example he will go to the freezer, point at the door "this", we open the door he points to the chicken fries, say please he replies "peas" if he wants them heated he will point to the microwave (gasp yep we have one because when he wants to eat he wants it that minute and if you miss it, he will go hours refusing to eat) he then says "bot" for tablet say thank you, he replies "tanks" and leans over the couch or trampoline and eats. I get it maybe I am hypercritical but I want him to be able to tell me when he is too hot, too cold, I'm hungry, thirty, feeling sick, etc. maybe I'm impatient but I'm sick of people telling me he is fine and normal. Yes I have gotten visibly upset and walked out of the room and have told Travis to figure it out because I can't understand what Dacotah is saying he needs. There are times Travis does the same thing, it's frustrating but it is the part of our life others don't see. They don't see me cry because I see him with a younger child and he just watches them talk as he sits quietly, it breaks my heart!
I sooo wish it were. I wish he didn't have the genetic problem which causes him to need the braces, which causes the chronic sleep problems, which causes the speech delays, which causes the low muscle tone. I wish he were 100% healthy and normal, but the handicap pass in the van reminds us that he isn't normal. He will have issues at school, home, with talking, etc. Our lives revolve around PT, OT, speech, visits to the orthotics, 8 hour trips to Charlottesville to get dental work, and countless hours of redirection, calming techniques, etc at home so when he goes to preschool he seems "normal with a speech delay". I wish for a moment they could see through our eyes instead of the one hour glimpse during therapy. Pat his PT was able to touch him for about 20 minutes out of his scheduled hour before he was done, he didn't want anyone touching him and went off to be alone. I come home and he cuddles up. I know he feels safe, and I wish I could hold him like that forever. I wouldn't change the schedules and working around it, I want to give him the boost with Early Intervention and help him as much as possible.
There are support groups for his genetics, everyone is afraid to tell their son or even their family and friends that they have Klinefelter's, heck I can't say that I blame them. I cringe at the thoughts of the next 12 years, puberty, what can happen and what happens in 99% of XXY patients. How do you tell your son at age 12 you need him to go to the doctor to save his sperm so hopefully he can have kids of his own when he gets married years later. Or you choose not to give him that option and just say best of luck. What parent wants to make that choice??? I know you say I have 10 years, but I plan early, the costs for it are in the thousands and there are no guarantees. I wonder to if he would resent us later if we chose not to do anything and let nature take its course. I mean really most men don't find out until in their 20s, He's 2.5!
But let me tell you what he can do
He can give you the biggest smile and hug you have ever had or seen. He can follow directions to a T. He could climb Mt. Everest in record time (or the back of the couch, up the slide, over the jungle gym). He can follow directions like find your shoes, put this in the sink, or if he makes a mess he says "uh oh mess" and grabs a towel or toilet paper (ha for big water spills) and "cleans" it up without being told. He's mommy and daddy's big helper. He adores his big sister and refuses to eat a cookie if you don't give him two so he can share. He will babble, and he will scream and throw a fit when he doesn't get his way. He dances to his favorite music "Light it Up" He is special, he is our superman, and we will get through the obstacles!
So even if I question, second guess, get downright emotional, feel frustrated, angry, annoyed, excited, or any other adjective, that's okay. It's healing it's working through the pain as a mom knowing that it's going to take a little longer but there is nothing I could have done to prevent it. God gave us a son and He knew He could trust us to give him the best life possible and even when I feel discouraged as a mom I am thankful for our son! So together we are going to "Light it up and keep moving forward one step at a time"
This is not going to be a positively optimistic post, these are my true feelings as a mom and my constant everyday mind struggle that I am trying to cope with. If that offends you please stop reading and I will post optimistically in the next post but today I just want to cry, be angry, frustrated and vent.
How am I feeling:
Simply stated I have reached the point I am questioning everything I am doing. Obviously the genetics are black and white. But am I making this out to be worse than it really is? He needs braces for his feet confirmed by the PT, the OT, the orthotics doc and the DO agree that it's best for him. We haven't gotten them, yet, but I know he is going to hate them and it's going to be the battle of the wills as he learns to walk "again" corrected. I guess I know he needs them but I still question myself. I want to make sure we do the best thing possible to give him the best chance at being "normal" whatever normal that will be.
I guess what really bothers me is everyone sees the improvement in his speech which I am super thankful for, but I don't call it a huge improvement when the only words you really understand minus a handful is the ones you tell him to say. For example he will go to the freezer, point at the door "this", we open the door he points to the chicken fries, say please he replies "peas" if he wants them heated he will point to the microwave (gasp yep we have one because when he wants to eat he wants it that minute and if you miss it, he will go hours refusing to eat) he then says "bot" for tablet say thank you, he replies "tanks" and leans over the couch or trampoline and eats. I get it maybe I am hypercritical but I want him to be able to tell me when he is too hot, too cold, I'm hungry, thirty, feeling sick, etc. maybe I'm impatient but I'm sick of people telling me he is fine and normal. Yes I have gotten visibly upset and walked out of the room and have told Travis to figure it out because I can't understand what Dacotah is saying he needs. There are times Travis does the same thing, it's frustrating but it is the part of our life others don't see. They don't see me cry because I see him with a younger child and he just watches them talk as he sits quietly, it breaks my heart!
I sooo wish it were. I wish he didn't have the genetic problem which causes him to need the braces, which causes the chronic sleep problems, which causes the speech delays, which causes the low muscle tone. I wish he were 100% healthy and normal, but the handicap pass in the van reminds us that he isn't normal. He will have issues at school, home, with talking, etc. Our lives revolve around PT, OT, speech, visits to the orthotics, 8 hour trips to Charlottesville to get dental work, and countless hours of redirection, calming techniques, etc at home so when he goes to preschool he seems "normal with a speech delay". I wish for a moment they could see through our eyes instead of the one hour glimpse during therapy. Pat his PT was able to touch him for about 20 minutes out of his scheduled hour before he was done, he didn't want anyone touching him and went off to be alone. I come home and he cuddles up. I know he feels safe, and I wish I could hold him like that forever. I wouldn't change the schedules and working around it, I want to give him the boost with Early Intervention and help him as much as possible.
There are support groups for his genetics, everyone is afraid to tell their son or even their family and friends that they have Klinefelter's, heck I can't say that I blame them. I cringe at the thoughts of the next 12 years, puberty, what can happen and what happens in 99% of XXY patients. How do you tell your son at age 12 you need him to go to the doctor to save his sperm so hopefully he can have kids of his own when he gets married years later. Or you choose not to give him that option and just say best of luck. What parent wants to make that choice??? I know you say I have 10 years, but I plan early, the costs for it are in the thousands and there are no guarantees. I wonder to if he would resent us later if we chose not to do anything and let nature take its course. I mean really most men don't find out until in their 20s, He's 2.5!
But let me tell you what he can do
He can give you the biggest smile and hug you have ever had or seen. He can follow directions to a T. He could climb Mt. Everest in record time (or the back of the couch, up the slide, over the jungle gym). He can follow directions like find your shoes, put this in the sink, or if he makes a mess he says "uh oh mess" and grabs a towel or toilet paper (ha for big water spills) and "cleans" it up without being told. He's mommy and daddy's big helper. He adores his big sister and refuses to eat a cookie if you don't give him two so he can share. He will babble, and he will scream and throw a fit when he doesn't get his way. He dances to his favorite music "Light it Up" He is special, he is our superman, and we will get through the obstacles!
So even if I question, second guess, get downright emotional, feel frustrated, angry, annoyed, excited, or any other adjective, that's okay. It's healing it's working through the pain as a mom knowing that it's going to take a little longer but there is nothing I could have done to prevent it. God gave us a son and He knew He could trust us to give him the best life possible and even when I feel discouraged as a mom I am thankful for our son! So together we are going to "Light it up and keep moving forward one step at a time"
Saturday, September 17, 2016
Peek a boo!
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!
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!
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.
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