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.
Monday, October 10, 2016
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"
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