YAHOO....NO PROBLEMO!!! Happy to say that Nathan passed everything in this therapy so he doesn't have to have any Physical Therapy. She had the same question....why is he here... Just for an evaluation and he passed. Next is Occupational Therapy....and I think he will pass that one also, so they will just want him to do speech two times a week.
The other big thing I am doing is purchasing his preschool curriculum and Yep, homeschooling him. I will be teaching two hours on Tuesday afternoon in a group and looking for other opportunities but looking at his new classroom and teachers...big mistake director, and the rules for these teachers is going to take a drastic turn soon, but I don't have the time, energy, and money to waste on what is going on. So I am taking him out after Friday. Might even be tomorrow.
Wednesday, August 29, 2012
Wednesday, August 22, 2012
Speech Therapy
Yikes, speech therapy, it's good, it's needed but we will be busy. I took Nathan out to lunch today, put a dot of ketchup on his plate, signed more when he wanted ketchup, dot on plate, got him to sign more, and again, again, again, please he would say, more, sign it, again, again, he'd get it....but it was exhausting. It's hard to remember to make him do things and then it's easy to just hand him something.
While I was at Speech, the orthopedic appointment came through, then the occupational therapist, then the physical therapist.....NOW I NEED THERAPY!!!
No seriously, it's a bunch of things to do but I am enjoying the learning the talking to the Mom's who are going through similar issues. The appointment lady that called had a child with some syndrome where he was operated on and wanted to know more about the hemihypertrophy support that is out there, so we talked. It's good, I feel like I am being put in a different zone of life, one that I never expected.
My friend told me today her son had twelve specialist. Oh dear, I was shocked. Twelve, well yes I guess that happens. Nathan has three, plus three therapist.
While I was at Speech, the orthopedic appointment came through, then the occupational therapist, then the physical therapist.....NOW I NEED THERAPY!!!
No seriously, it's a bunch of things to do but I am enjoying the learning the talking to the Mom's who are going through similar issues. The appointment lady that called had a child with some syndrome where he was operated on and wanted to know more about the hemihypertrophy support that is out there, so we talked. It's good, I feel like I am being put in a different zone of life, one that I never expected.
My friend told me today her son had twelve specialist. Oh dear, I was shocked. Twelve, well yes I guess that happens. Nathan has three, plus three therapist.
Tuesday, August 21, 2012
Growing up
Yesterday, was your first day in the three year old program. Bye Mom, and a kiss, and off you went, no tears, just happy to be with your friends. Happy when your big sister picked you up. Of course you wanted to bring your snacks back home with you.
Speech Path called, and tomorrow they will evaluate you. Time to begin speech therapy. Actually way past time. I am just glad the cancer test that should of happened at birth and every 6 to 8 weeks after that came back fine. At least I believe that is what most of your friends with obvious hemihypertrophy had. Although yours is mild, my theory is hemihypertrophy also does something in development of the brain with some hemi children. You are one of them.
Although they have tested you for syndromes they will probably all come back negative. At this point I will stop testing. I will continue searching with Hemihypertrophy people until I find all that have/had speech issues and begin my own research. I know there are some. Why the development of speech occurs at such a drastic rate change in some hemihypertrophy kids is a mystery.
Tomorrow, I will also look at Dr. Duke's practice, if I can find it. This entire funky oxygen chamber sounds so weird but after the reaction your had to the MRI, I want to know more.
Speech Path called, and tomorrow they will evaluate you. Time to begin speech therapy. Actually way past time. I am just glad the cancer test that should of happened at birth and every 6 to 8 weeks after that came back fine. At least I believe that is what most of your friends with obvious hemihypertrophy had. Although yours is mild, my theory is hemihypertrophy also does something in development of the brain with some hemi children. You are one of them.
Although they have tested you for syndromes they will probably all come back negative. At this point I will stop testing. I will continue searching with Hemihypertrophy people until I find all that have/had speech issues and begin my own research. I know there are some. Why the development of speech occurs at such a drastic rate change in some hemihypertrophy kids is a mystery.
Tomorrow, I will also look at Dr. Duke's practice, if I can find it. This entire funky oxygen chamber sounds so weird but after the reaction your had to the MRI, I want to know more.
Saturday, August 18, 2012
Things that make you go HMMMM
Got a call from Nate's new pediatricians office in Augusta. They asked me if I had gotten any extra help for him OT, Speech Therapy, etc. etc. No, I am still waiting for someone to contact me. In the mean time, I've been annoyed by one preschool.Really put my son in the 2 year old program twice a week, NOT. I took my business elsewhere. Back to where he went last year, farther away and it cost me $40 more a month.
In reality my son should be going to preschool for free, most kids with conditions like his are going for free, but he must have all his shots like a regular kid. IDIOTS!! Yeah, that's intelligent, put something in a kids body with out knowing what's wrong with the kid first. There are conditions that shots annoy. Anyway I am just annoyed right now at the way things have been done around here. I realize the entire autism shot thing is said to be bogus, but I still question the titer thing. Why aren't they doing this with my son?? I'm still arguing but he does have all his shots for MMR. I let them give him one at the last pediatricians appointment.
I am wondering about this oxygen thing in Macon, Georgia. Dr. Duke from the medical college of Georgia heads it up. I want to find out exactly what they gave my son for that MRI. He put three words together that he hadn't before after it, and is doing somewhat better. Go figure, so many questions.
Anyway, they are scheduling me an asap appointment in Macon, Georgia. Once again I wonder why am I paying taxes for the FIND program?? Paying for Medical insurance and having money taken from our paycheck for a medical savings plan.....tax free but ummm my understanding is if we don't spend it by December 31st, it doesn't roll over, it just vanishes.
I yelled at some diagnostic company that had the nerve to call me with a recording. I had to star 69, to find them again because they didn't run the recording long enough to locate a pencil and paper. Then when I finally get them it is for a stupid $11 that my insurance didn't cover on another child, not even Nathan, but I try and get all information asap. I told them if they want their money they better earn it and call me with a human. Why is it that the only human being that calls these days is a tele marketer?
Kudos the Medical College of Georgia, I spend more time talking to humans with this hospital, that I am shocked, the adjustment in conversation is amazing.
In reality my son should be going to preschool for free, most kids with conditions like his are going for free, but he must have all his shots like a regular kid. IDIOTS!! Yeah, that's intelligent, put something in a kids body with out knowing what's wrong with the kid first. There are conditions that shots annoy. Anyway I am just annoyed right now at the way things have been done around here. I realize the entire autism shot thing is said to be bogus, but I still question the titer thing. Why aren't they doing this with my son?? I'm still arguing but he does have all his shots for MMR. I let them give him one at the last pediatricians appointment.
I am wondering about this oxygen thing in Macon, Georgia. Dr. Duke from the medical college of Georgia heads it up. I want to find out exactly what they gave my son for that MRI. He put three words together that he hadn't before after it, and is doing somewhat better. Go figure, so many questions.
Anyway, they are scheduling me an asap appointment in Macon, Georgia. Once again I wonder why am I paying taxes for the FIND program?? Paying for Medical insurance and having money taken from our paycheck for a medical savings plan.....tax free but ummm my understanding is if we don't spend it by December 31st, it doesn't roll over, it just vanishes.
I yelled at some diagnostic company that had the nerve to call me with a recording. I had to star 69, to find them again because they didn't run the recording long enough to locate a pencil and paper. Then when I finally get them it is for a stupid $11 that my insurance didn't cover on another child, not even Nathan, but I try and get all information asap. I told them if they want their money they better earn it and call me with a human. Why is it that the only human being that calls these days is a tele marketer?
Kudos the Medical College of Georgia, I spend more time talking to humans with this hospital, that I am shocked, the adjustment in conversation is amazing.
Tuesday, August 14, 2012
A New Geneticist at Medical College of Georgia
Guess what, guess what, we know what you have. It's called Nathan Isaiah Mullens Syndrome....seriously they have no clue, so that is what I am now calling it NIMS for short. As he went through the possibilities and then drew blood to figure it out...well the syndromes became so many that the guy studying them started naming them for the people who have them. So I officially call it NIMS syndrome.
It is no mistake that your initials spell NIM. I thought it was cute, the Secret of NIM you are. So much left to learn about you. I guess from here, I just carry on, cancer screening? HMMM...I don't know what to do about that. Shoe lift, is my next focus, you can't go around walking without your legs being equal and not have back issues.
Preschool begins. I opted to put you in the one you went to last year. They know you there, and the lady running it understands you. So, that is settled. Five days a week, and hopefully some therapy. Where's mine? And the journey of NIMS continues.
I love MCG what a fun group of nurses came in to take your blood today. Bubbles, games, and goofing around. You still hated it but at least you had distractions and as always the strawberry smoothie at the end.
Three Things the Geneticist Thought you might have?
1. Sotos Syndrome
2. FG Syndrome
3. Fragile X Syndrome
None of which fit to me, but we will get the results back by October 15th. Then they'll probably want to run more tests. ) :
And of course you do have hemihypertrophy.
It is no mistake that your initials spell NIM. I thought it was cute, the Secret of NIM you are. So much left to learn about you. I guess from here, I just carry on, cancer screening? HMMM...I don't know what to do about that. Shoe lift, is my next focus, you can't go around walking without your legs being equal and not have back issues.
Preschool begins. I opted to put you in the one you went to last year. They know you there, and the lady running it understands you. So, that is settled. Five days a week, and hopefully some therapy. Where's mine? And the journey of NIMS continues.
I love MCG what a fun group of nurses came in to take your blood today. Bubbles, games, and goofing around. You still hated it but at least you had distractions and as always the strawberry smoothie at the end.
Three Things the Geneticist Thought you might have?
1. Sotos Syndrome
2. FG Syndrome
3. Fragile X Syndrome
None of which fit to me, but we will get the results back by October 15th. Then they'll probably want to run more tests. ) :
And of course you do have hemihypertrophy.
Wednesday, August 8, 2012
MRI is Normal
Whew, all clear. Today I was driving home from MOPS when the Nurse called and said, Nathan's MRI is all clear. I am relieved and happy that this chapter is over with. Now what? He meets his new preschool teacher tomorrow.
Tuesday, August 7, 2012
MRI is a Memory
Going where I've never gone before!!! Never seen one of my kids brains before, I'm pretty sure all of them have one, but it's weird. I think of jokes you say as kids. There's a little bitty sign in there, it reads "SPACE FOR RENT".
So it happened yesterday, emotional time for me as I don't like all this stuff to begin with, I am not into needles, etc. I am trying and am getting better about dissection and stuff like that, even getting a fresh cows heart from a cow I bought a 1/4 of. My oldest picked that up yesterday. I've gone a bit nutty about natural foods lately.
I've gone more natural because of hemihypertrophy and the concern for cancer in Nathan's body. Yeah, I know all about foods to fight cancer and shapes of body organs and shapes of food, this is different. It is about keeping the garbage out of food that doesn't need to be there in the first place. Pesticides, antibiotics, Frankensteir , films like that get you thinking about what you are putting in your children.
MRI is over with, and I am so glad I ended up at Medical College of Georgia. For more on this story see my facebook page via Nathan. HEMIHYPERTROPHY- a new Geneticist sees Nathan on Tuesday.
So it happened yesterday, emotional time for me as I don't like all this stuff to begin with, I am not into needles, etc. I am trying and am getting better about dissection and stuff like that, even getting a fresh cows heart from a cow I bought a 1/4 of. My oldest picked that up yesterday. I've gone a bit nutty about natural foods lately.
I've gone more natural because of hemihypertrophy and the concern for cancer in Nathan's body. Yeah, I know all about foods to fight cancer and shapes of body organs and shapes of food, this is different. It is about keeping the garbage out of food that doesn't need to be there in the first place. Pesticides, antibiotics, Frankensteir , films like that get you thinking about what you are putting in your children.
MRI is over with, and I am so glad I ended up at Medical College of Georgia. For more on this story see my facebook page via Nathan. HEMIHYPERTROPHY- a new Geneticist sees Nathan on Tuesday.
Sunday, August 5, 2012
MRI Finally
Tomorrow is the big day. MRI time, I'm a bit nervous, wondering how all this will go. MCG has been great at calling me two times and telling me the time and what to do. He can't eat after midnight, and he can't drink after 8:30 Am.
YIKES, then they'll give him a pill at 10:30, then let him get groggy, put a mask on, then needles in his little arms and monitor him. For an hour, or so they'll look at his brain.
YIKES, then they'll give him a pill at 10:30, then let him get groggy, put a mask on, then needles in his little arms and monitor him. For an hour, or so they'll look at his brain.
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