What does one do when life changes so crazily. Where are my rights as your parent? I'm looking at what the UN treaty is saying and saying NO!!
Your not in the "norm". What do I do? It isn't like he has a known syndrome. He is the unknown on so many levels. I just say it is NIMS the doctors haven't figured out what is wrong with this child, except he does have hemihypertrophy. From there they haven't called me with the results of his second cancer/tumor screening. What am I paying for? Seems like a lot of work I have to do on my own for his medical needs.
Speech, they are calling me again. Why? I am done with them if they can't figure out how to get the money, it's not my job either. I have a degree in early childhood and know far more about how to get him to talk. He also can talk, he just refuses to speak.
Tuesday, December 11, 2012
Tuesday, November 27, 2012
No More Speech
For some odd reason, you don't qualify for speech. To be honest, I am past speech class. Peter does a better job. He seems to grab those moments to make you talk. A second ago I heard from the kitchen. "Please open the banana....and the echoing of each word had to be said by Nathan." for some odd reason remembering more than one word is a challenge for Nathan. Each word is said, then repeated by Nathan. It's an exhausting process of patience and then there are sentences he has begun to put together.
I've put many of them on Nathan's facebook page. Yes, he has a wall, and is tagged in many things. The journey shows progress. For the average child, they are able to carry a conversation at the same age, not Nathan. He's who he is, and he makes us laugh often. He has an interesting way about him, he looks for the attention. The eyes of the room being on him.
He's extreem on naughtiness and having his own way.
Starting in January there is some tax free thing for Preschool. I think we are going to take advantage of it, and put him in the most expensive preschool.
I've put many of them on Nathan's facebook page. Yes, he has a wall, and is tagged in many things. The journey shows progress. For the average child, they are able to carry a conversation at the same age, not Nathan. He's who he is, and he makes us laugh often. He has an interesting way about him, he looks for the attention. The eyes of the room being on him.
He's extreem on naughtiness and having his own way.
Starting in January there is some tax free thing for Preschool. I think we are going to take advantage of it, and put him in the most expensive preschool.
Wednesday, November 21, 2012
Routine test
Sonogram and blood work: Wednesday before thanksgiving, once again they ran the routine, standard for any kid with hemihypertrophy test for cancer and then the sonogram to look for tumors. This was John's first time coming with us, and I hope he can make the next 17 times. Yes, 17 times until he turns 8 years old. Then his chances drop off. I'm not sure why, but this is what is done. I'm friends with and learning from many parents and people with Hemihypertrophy. Look on facebook and Yahoo if your child has this condition. One leg longer than the other, this is looked at once a year.
Thursday, November 8, 2012
You Little Twit
That about explains you. So funny, and talking up a storm. You just talk when bribed, but a whole sentence is come out every once in a while. "GET ME OTTA HERE!!" It has become your favorite line. Screaming while I bring you to the car, "Dara, Dara, GET ME OUTTA HERE!"
At speech class, when locked in a chair, "GET ME OUTTA HERE!!" In the car seat. One never knows but it's a sentence that's understood. Moothie for smoothie, FINALLY. I can ask you a question and usually figure out what you want.
Blues Clues!!! Yes, oh how I am loving listening to this over Dora. You seem to be learning more also. You are doing great.
Your best speech class was yesterday. You were so well behaved. You have done okay in preschool classes on Tuesday. We will begin again in January for 9 more weeks.
At speech class, when locked in a chair, "GET ME OUTTA HERE!!" In the car seat. One never knows but it's a sentence that's understood. Moothie for smoothie, FINALLY. I can ask you a question and usually figure out what you want.
Blues Clues!!! Yes, oh how I am loving listening to this over Dora. You seem to be learning more also. You are doing great.
Your best speech class was yesterday. You were so well behaved. You have done okay in preschool classes on Tuesday. We will begin again in January for 9 more weeks.
Monday, October 8, 2012
Naughty Nate
Oh you are so naughty. I don't have enough energy to correct all your naughtiness. I about died as you just were terrible at speech today. I really don't blame you. Who wants to be told how to play. I ended up interacting more today than ever.
I almost took you to the bathroom and spanked you. Throwing stuff at the speech teacher isn't cool. Not doing what you told isn't a good thing, but seriously at age three who wants to be told what they can play with when, and how and where things go. She tried you just won't do the things she wants you to do.
I am not sure speech is worth the time, energy, and money. I go because I feel hopeless but then I see how much I do to get you to speak, and you seem to comprehend so much more than I think. Time will tell but there are days that I really wonder what the future holds.
I almost took you to the bathroom and spanked you. Throwing stuff at the speech teacher isn't cool. Not doing what you told isn't a good thing, but seriously at age three who wants to be told what they can play with when, and how and where things go. She tried you just won't do the things she wants you to do.
I am not sure speech is worth the time, energy, and money. I go because I feel hopeless but then I see how much I do to get you to speak, and you seem to comprehend so much more than I think. Time will tell but there are days that I really wonder what the future holds.
Saturday, September 29, 2012
Okay, All Wight
OH you are so cute when you talk, and other times but the okay, all wight, is just too much. So few words voluntarily said but these two are.
Hi, Mommy. Awww cwap, (thanks a lot, I now have Mommy guilt for that one, that your sister thought it was too funny and got you to say it a number of times....sigh.) Pewwwy the Pwatapus, and Arah for Sarah, Ewin, for Karen.
Now how do I upload a video?? Ah well blogging is not my strong point, but at least for the next Mommy struggling with a hemihypertrophy kid with still don't know what you have, I just call it NIMS for short, Nathan Isaiah Mullens Syndrome is what you have. No worries, everyone has their name and a syndrome, we are all uniquely made.
A wise woman said, "We love our son the way he is." and I do.
Hi, Mommy. Awww cwap, (thanks a lot, I now have Mommy guilt for that one, that your sister thought it was too funny and got you to say it a number of times....sigh.) Pewwwy the Pwatapus, and Arah for Sarah, Ewin, for Karen.
Now how do I upload a video?? Ah well blogging is not my strong point, but at least for the next Mommy struggling with a hemihypertrophy kid with still don't know what you have, I just call it NIMS for short, Nathan Isaiah Mullens Syndrome is what you have. No worries, everyone has their name and a syndrome, we are all uniquely made.
A wise woman said, "We love our son the way he is." and I do.
Wednesday, September 26, 2012
Speech AGAIN
Here it is Wednesday, and I am skipping speech because I forgot, and I am tired. I sit in there with Nathan and I find it rather tiring to keep driving him back and forth for 30 minutes of playing with something trying to get him to talk. He talks when he wants something.
He pushed Jay into the kitchen and got some ice cream. So when he wants something he communicates....maybe one day he'll just start talking. He talks now, sorda. Its a journey, that continues.
He pushed Jay into the kitchen and got some ice cream. So when he wants something he communicates....maybe one day he'll just start talking. He talks now, sorda. Its a journey, that continues.
Friday, September 21, 2012 Orthopedic Apt.
Friday 9:30 Appointment.....which means I leave at 8:30.... get to appointment and UGH they want to take a x-ray.....yeah, a screaming child, a tired Mom.... then after the x-ray, back to the doctor, who decides Nathan does not need a lift.
Of course my son didn't exactly stand for the man, he ran to his stroller, mad, angry, and no longer willing to have anyone touch him. The man said, he seemed to move around fine. He could write him a prescription but felt Nathan will be fine with out it.
We stopped at McDonalds and got lunch as we left and to our 1:30 apt. Pediatrician said he still needs sonograms and blood test, and to bring him back in November.
Still waiting on the blood work from the Geneticist.
Of course my son didn't exactly stand for the man, he ran to his stroller, mad, angry, and no longer willing to have anyone touch him. The man said, he seemed to move around fine. He could write him a prescription but felt Nathan will be fine with out it.
We stopped at McDonalds and got lunch as we left and to our 1:30 apt. Pediatrician said he still needs sonograms and blood test, and to bring him back in November.
Still waiting on the blood work from the Geneticist.
Wednesday, September 19, 2012
Sigh, not much but something.....
I missed speech on Monday, no co-op for us on Tuesday as the flu bug came and went. By Wednesday we were back on schedule and at speech class. We also switched it with one woman for Monday and Wednesday at 2pm.
Today he was to play with a barn. It wasn't until the end of the class when I made him say good-bye to all the animals for a lollypop that he really did much. So the wondering if it is worth it to drive and go and pay, and sit, the old time, energy, and money thing. I don't know if is worth it. He's playing right now and does with Peter more. Peter talks up a storm.
Tomorrow we leave for 2 doctors apt.
Today he was to play with a barn. It wasn't until the end of the class when I made him say good-bye to all the animals for a lollypop that he really did much. So the wondering if it is worth it to drive and go and pay, and sit, the old time, energy, and money thing. I don't know if is worth it. He's playing right now and does with Peter more. Peter talks up a storm.
Tomorrow we leave for 2 doctors apt.
Wednesday, September 12, 2012
Co-op Pre-school Class
Nathan now attends preschool for three year olds on Tuesday afternoon. He'll do this for a total of 9 weeks.
Yesterday was his first class. Did I mention, I teach this class from 1-2 and then from 3-4. We have 14 kids in this class. Really we have 12 but two were extras while their Mom worked.
We did circle time. Nathan never got to circle time. I didn't have time to discipline him as it would of disrupted a group of kids who are just learning about circle time. I called their names and tried to get them to raise their hands. Nathan never did this, like he used to for his old teacher. Maybe he only did this when he wanted something. I'll have to ask her.
We did playdough red and then yellow, tried to get the kids to make snakes and balls. Then had them mix the colors to make orange. Knowing tis the season for kids to be germy the playdough went home with them. I'll make new playdough for next week.
My favorite playdough recipe.
1 cup flour
1 cup salt
4 TBS Cream of Tarter
2 TBS oil
1 cup Water
Food color or kool-aid pack for color and smell.
Stir on stove cooking...be careful not to burn.
I attempted to read a story. This didn't go over well. By 2pm these kids should be lying down for a rest period many are still napping. I know Nathan fell asleep at 2pm-3pm. When I came back, we did playtime outside from 3-3:40ish....then a bit of sing, spell, read, and write...it worked but Nathan is not interested in learning. He did well to play and touch the playdough. He's clingy to me, which is fine.
Tomorrow he'll attend Classical Conversations and interact with other children. His older sister will be with him. I hope he behaves.
On Friday, I might meet with other Mom's of preschoolers for two hours. Today I am going to set up a Mickey Mouse Clubhouse in his room and see how he does with talking about that. Perfect timing as I am done with my thoughts about this child and Mickey Mouse is just coming on television.
1:30 is his second speech class. Wonder what we will be working on today.
Yesterday was his first class. Did I mention, I teach this class from 1-2 and then from 3-4. We have 14 kids in this class. Really we have 12 but two were extras while their Mom worked.
We did circle time. Nathan never got to circle time. I didn't have time to discipline him as it would of disrupted a group of kids who are just learning about circle time. I called their names and tried to get them to raise their hands. Nathan never did this, like he used to for his old teacher. Maybe he only did this when he wanted something. I'll have to ask her.
We did playdough red and then yellow, tried to get the kids to make snakes and balls. Then had them mix the colors to make orange. Knowing tis the season for kids to be germy the playdough went home with them. I'll make new playdough for next week.
My favorite playdough recipe.
1 cup flour
1 cup salt
4 TBS Cream of Tarter
2 TBS oil
1 cup Water
Food color or kool-aid pack for color and smell.
Stir on stove cooking...be careful not to burn.
I attempted to read a story. This didn't go over well. By 2pm these kids should be lying down for a rest period many are still napping. I know Nathan fell asleep at 2pm-3pm. When I came back, we did playtime outside from 3-3:40ish....then a bit of sing, spell, read, and write...it worked but Nathan is not interested in learning. He did well to play and touch the playdough. He's clingy to me, which is fine.
Tomorrow he'll attend Classical Conversations and interact with other children. His older sister will be with him. I hope he behaves.
On Friday, I might meet with other Mom's of preschoolers for two hours. Today I am going to set up a Mickey Mouse Clubhouse in his room and see how he does with talking about that. Perfect timing as I am done with my thoughts about this child and Mickey Mouse is just coming on television.
1:30 is his second speech class. Wonder what we will be working on today.
Speech Therapy Monday at 8:30 am.
Is speech a problem with kids who have hemihypertrophy? Nathan does, so it is a huge focus. I am not sure if he has another syndrome or if he just behind. He is saying more words all the time. Apple, NO, please and attempts to say the word if he wants the object.
His first speech class was a toy on the table. It had a set of keys, he had to unlock the doors with the right colored key and the object was that he would make the animal sound. He did some...he said locked, and abrir (spanish for open). Yes, Nathan loves Dora.
The Speech teacher then pulled objects out of a bag and tried to get him to say something. He spoke a bit, but you can't really comprehend this child's speech if he is talking. He mimics the television set.
Speech last a 1/2 hour. He was pretty good, until the lollipop for Peter had to be given. Then he screamed because he wanted two.
His first speech class was a toy on the table. It had a set of keys, he had to unlock the doors with the right colored key and the object was that he would make the animal sound. He did some...he said locked, and abrir (spanish for open). Yes, Nathan loves Dora.
The Speech teacher then pulled objects out of a bag and tried to get him to say something. He spoke a bit, but you can't really comprehend this child's speech if he is talking. He mimics the television set.
Speech last a 1/2 hour. He was pretty good, until the lollipop for Peter had to be given. Then he screamed because he wanted two.
Wednesday, August 29, 2012
Physical Therapy
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.
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 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.
Friday, July 20, 2012
THE RESULTS ARE IN
And Nathan is fine his level was 5.8. Which is normal for a normal kid for one with Hemihypertrophy it is fine. He is healthy, well as healthy as a kid with Hemihypertrophy is. I was on my way to Speech Path, when the Nurse practitioner called and let me know that the sonogram and blood work came back normal. Yes, I cried. I was in the parking lot of a gas station.
I called my husband who didn't act like it was a big deal. Puh, I called my Mom, and she gave me the happiness I was feeling, I just don't get my husband. Maybe he was processing. I don't know but me, I was partying!!! I am so relieved and so happy to have the wondering over with, the feeling of being in the right place for Nathan.
My happiness only continued when I got to Speech Path. I loved the place, the concept, and the women who would be working with my boy.
I was happy about him getting into preschool for a week, but I just got an email that he'll only be permitted in the 2 year old class, 2 days a week. Oh well, so back to his old preschool to put him in, if I want him going 5 days a week. I don't really care about anything, I am just so relieved to not have to wonder about that back biter, cancer.
HAPPINESS IS A HEALTHY BOY!!!
I called my husband who didn't act like it was a big deal. Puh, I called my Mom, and she gave me the happiness I was feeling, I just don't get my husband. Maybe he was processing. I don't know but me, I was partying!!! I am so relieved and so happy to have the wondering over with, the feeling of being in the right place for Nathan.
My happiness only continued when I got to Speech Path. I loved the place, the concept, and the women who would be working with my boy.
I was happy about him getting into preschool for a week, but I just got an email that he'll only be permitted in the 2 year old class, 2 days a week. Oh well, so back to his old preschool to put him in, if I want him going 5 days a week. I don't really care about anything, I am just so relieved to not have to wonder about that back biter, cancer.
HAPPINESS IS A HEALTHY BOY!!!
Sunday, July 15, 2012
Friday July 13th
In the morning Nathan had his sonogram. It was exhausting. Did I write about this? Well it was tiring
Sonogram over with Dr. Maria gets the results. This was An extensive sonogram, I am tired from holding this very strong boys legs. Ouch!! Happy to be done with it. — with Nathan Mullens at MCGHealth Children's Medical Center.
And so my Friday went, I am still in a daze. Friday afternoon we saw Dr. Fisher. I guess my biggest concern was the sonogram when they put him on his side but not the other side. Then I got a phone call from the hospital but Nathan had the phone, so I have to wait until Monday to find out anything, mostly why they called, all the while wondering if there is something wrong.
I got a ticket on Saturday coming home. I am majorly bummed, I got 2 points on my license, and I don't think I was speeding in his county and only going 6 mph over in the other, I just don't know and there was an amber alert out for a child who looked like Nathan but he didn't check to see if he was the boy missing.
Sonogram over with Dr. Maria gets the results. This was An extensive sonogram, I am tired from holding this very strong boys legs. Ouch!! Happy to be done with it. — with Nathan Mullens at MCGHealth Children's Medical Center.
And so my Friday went, I am still in a daze. Friday afternoon we saw Dr. Fisher. I guess my biggest concern was the sonogram when they put him on his side but not the other side. Then I got a phone call from the hospital but Nathan had the phone, so I have to wait until Monday to find out anything, mostly why they called, all the while wondering if there is something wrong.
I got a ticket on Saturday coming home. I am majorly bummed, I got 2 points on my license, and I don't think I was speeding in his county and only going 6 mph over in the other, I just don't know and there was an amber alert out for a child who looked like Nathan but he didn't check to see if he was the boy missing.
Wednesday, July 11, 2012
Neurologist appointment
So far they measured his head after a few tries. Didn't bother trying again with the blood pressure cup. Measured his height. Weight he wouldn't stand. I like the mcg children's wing for the kid friendly areas.
Now I am home and typing on my computer. Whew I am exhausted, what a day. I got more accomplished with one appointment with this neurologist than his old pediatricians, neurologist, and geneticist. I am wiped out. Finally they took blood today to find out if there was any cancer, then they will run a sonogram Friday morning to make sure he doesn't have the Wilm's Tumor...zzzzzzzzzzzzzz. One tired Mom here, and he took a nap on the way home....such a busy kid. gtg take care of him.
Cont.... Nathan and I met his new neurologist yesterday. He is way different from his first neurologist, what can I say, he knew way more about Nathan's condition. He didn't mess around he knew that there was a chance my son had cancer, he immediately order a test. He talked to me and then sent a nurse practitioner in to talk to me and to call if I had any questions.
Then the nurse who was excellent at taking blood from a child came in and drew blood. It took another nurse HERE IS MY FACEBOOK STATUS: I learned something today. Laying a child down to get blood from them is way easier than holding them in your lap. The difference between the two places and how they knew what would be easier was amazing. No problems today getting blood from Nathan Mullens His vein popped out and they got it on the first try. One nurse held his legs, one nurse held his arm and got the needle in first try....while I held his other arm and did very well also!!! LOL I have a thing about watching this type of stuff, not my thing.
THEN: I went out to the front desk and he had a few appointments ordered. Sonogram, Friday morning 9:30, yeppers those test the other parents had been telling me about, I didn't have to ask this doctor, HE KNEW THEY SHOULD OF BEEN RUN. No, more guessing if this is the right track, I feel like I'm headed in the right direction. Then ummm well good-bye to my Geneticist, this doctor wants me with someone else, who seems to know something about Hemihypertrophy, my brain was fried and tired, dealing with my son who was tired of listening to the doctor and turned his Ipad up to max....ugh. Arguing with a 3 year old in a doctors office once again.
New Geneticist appointment, and finally the MRI that two doc's have already scheduled but I didn't feel comfortable having those places run it. Good choice on my part, it led me to MCG and this doctor who did what should of been done according to other parents of Hemi kids a long time ago. Like I have said before every HEMI kid is different and my son's took a long time to be noticed because it is slight. Hey other Mom's if you see it, it's there, tell the pediatrician again, and again, and again.
Now I am home and typing on my computer. Whew I am exhausted, what a day. I got more accomplished with one appointment with this neurologist than his old pediatricians, neurologist, and geneticist. I am wiped out. Finally they took blood today to find out if there was any cancer, then they will run a sonogram Friday morning to make sure he doesn't have the Wilm's Tumor...zzzzzzzzzzzzzz. One tired Mom here, and he took a nap on the way home....such a busy kid. gtg take care of him.
Cont.... Nathan and I met his new neurologist yesterday. He is way different from his first neurologist, what can I say, he knew way more about Nathan's condition. He didn't mess around he knew that there was a chance my son had cancer, he immediately order a test. He talked to me and then sent a nurse practitioner in to talk to me and to call if I had any questions.
Then the nurse who was excellent at taking blood from a child came in and drew blood. It took another nurse HERE IS MY FACEBOOK STATUS: I learned something today. Laying a child down to get blood from them is way easier than holding them in your lap. The difference between the two places and how they knew what would be easier was amazing. No problems today getting blood from Nathan Mullens His vein popped out and they got it on the first try. One nurse held his legs, one nurse held his arm and got the needle in first try....while I held his other arm and did very well also!!! LOL I have a thing about watching this type of stuff, not my thing.
THEN: I went out to the front desk and he had a few appointments ordered. Sonogram, Friday morning 9:30, yeppers those test the other parents had been telling me about, I didn't have to ask this doctor, HE KNEW THEY SHOULD OF BEEN RUN. No, more guessing if this is the right track, I feel like I'm headed in the right direction. Then ummm well good-bye to my Geneticist, this doctor wants me with someone else, who seems to know something about Hemihypertrophy, my brain was fried and tired, dealing with my son who was tired of listening to the doctor and turned his Ipad up to max....ugh. Arguing with a 3 year old in a doctors office once again.
New Geneticist appointment, and finally the MRI that two doc's have already scheduled but I didn't feel comfortable having those places run it. Good choice on my part, it led me to MCG and this doctor who did what should of been done according to other parents of Hemi kids a long time ago. Like I have said before every HEMI kid is different and my son's took a long time to be noticed because it is slight. Hey other Mom's if you see it, it's there, tell the pediatrician again, and again, and again.
Wednesday, July 4, 2012
From the UK on Independence Day!!
Started chatting with another Mom today. She lives in England, so I felt it appropriate that we met today. As we chatted and learned about our children, it is like they are a mirror image of each other.
Her daughter's hemi is on the right, Nate's is on the left. They both have the same problems with speech. Our journey continues but we are not alone. I learned so much in the little while chatting maybe an hour of just asking questions but it was so neat to meet someone with a child only 2 months older who is like my son.
Her daughter's hemi is on the right, Nate's is on the left. They both have the same problems with speech. Our journey continues but we are not alone. I learned so much in the little while chatting maybe an hour of just asking questions but it was so neat to meet someone with a child only 2 months older who is like my son.
Tuesday, July 3, 2012
One Week From Today
My new Pediatrician got my son an appointment with one of the top Neurologist. Finding a hospital that ran the MRI the way I wanted it done was important to me, didn't know how things would go from there but this is the page that was turned. Good-bye to Nate's old Pediatrician and Neurologist and hello to ones that have access to the Medical College of Georgia.
So one week from today I will be waiting for Wednesday morning to get here and hope to get an MRI on Nate's brain ASAP.
Another Question BIG QUESTION: DOES NATHAN HAVE HEMIHYPERTROPHY OR ANOTHER PROBLEM that is similar to Hemihypertrophy but involves his entire left side??? I do not know but it was mentioned that there is another condition that might fit him better, because his brain is involved.
So one week from today I will be waiting for Wednesday morning to get here and hope to get an MRI on Nate's brain ASAP.
Another Question BIG QUESTION: DOES NATHAN HAVE HEMIHYPERTROPHY OR ANOTHER PROBLEM that is similar to Hemihypertrophy but involves his entire left side??? I do not know but it was mentioned that there is another condition that might fit him better, because his brain is involved.
Monday, July 2, 2012
Blackmailing into Getting Shots
Shots are so pushed in the state of Georgia. FIND program denied my son services and won't give him any speech therapy until he has shots.
I'm not saying shots aren't needed but really, my son has a condition that is only found in 1 in over 800,000 cases. You gave him a shot and he stopped saying the word UP. He has so many issues and the focus is he needs his shots.
I guess many would say, then get him the shots so he can get what he needs. Ummm NO. There is something wrong with that. My freedom, to think, to have it explained, to not just put something into a kid that can't be removed. First do no harm.
The neurologist even said there is a condition that a child may have that shots do cause problems with. Okay there is one condition and I believe he tested my son for it, but he never called me back, sent me for an MRI at the Macon, Children's Hospital.
He sent me a bill but did nothing but run a bunch of blood work that no other doctor of Nathan has the paper work for that I know of, I am double checking today with his old pediatrician to see if he ever received this information.
I'm not saying shots aren't needed but really, my son has a condition that is only found in 1 in over 800,000 cases. You gave him a shot and he stopped saying the word UP. He has so many issues and the focus is he needs his shots.
I guess many would say, then get him the shots so he can get what he needs. Ummm NO. There is something wrong with that. My freedom, to think, to have it explained, to not just put something into a kid that can't be removed. First do no harm.
The neurologist even said there is a condition that a child may have that shots do cause problems with. Okay there is one condition and I believe he tested my son for it, but he never called me back, sent me for an MRI at the Macon, Children's Hospital.
He sent me a bill but did nothing but run a bunch of blood work that no other doctor of Nathan has the paper work for that I know of, I am double checking today with his old pediatrician to see if he ever received this information.
He's MY SON my thoughts and questions......
Not knowing the future for Nathan but knowing we are headed in a correct direction having found a pediatrician who listens to what I am saying and is interested in learning as much as he can from my son. I feel like my son is finally getting the concern he deserves, and the correct diagnosis.
With Autism being so common, it was the natural assumption for many. If you hung out with Nathan and didn't know about Hemihypertrophy it would be a question.
The day Nathan was born I put my fingers around his legs and felt a difference in the circumference, I also noticed a difference in the length. I mentioned it to Dr. Slade who looked at him and didn't notice, but checked his hips.
A few months later I switched pediatricians and Dr. Ford would do the same thing. I continued to notice this and at his second birthday appointment. I said, could you please look at his legs. At this point he looked again, and wanted to know how he missed this. Instead of having more concern for his leg length difference the stupid shots are the constant focus.
To this my anger and frustration surmounts REALLY, REALLY, SHOTS ARE YOUR FOCUS?? DRILLED INTO YOUR HEAD BECAUSE THE STATE MAKES IT MANDATORY. You missed something all right your focus was too much on my son getting his shots and not enough on my son. And when you did talk me into getting a shot, he stopped saying the word up. Now I don't want to go into the Autism and shot debate, that was lied about by one of the top doctors who admitted and got into trouble for it, Dr. Wakefield.
Enough parents have noted the halt in speech and shots, that it needs to be looked into more and we need to titre more kids rather than put more vaccines into their bodies in my opinion. Especially Army Brat kids, how many antibodies did my kids get from me? any? I don't know. The doctor said you can't titre if they haven't had a shot, because it won't measure anything. We talked about the chicken pox shot my daughter was titre for and didn't need a second dose.
Again I have switched pediatricians and AGAIN a good part of the conversation is once again the shots my son is missing. I want my son titred. Measure what his body did with the vaccine before you go putting more into it. At least he is trying to explain to me about why this doesn't work if your child doesn't have any vaccine to measure antibodies, but I also feel he doesn't know that much about the subject, and will be studying up on a few things before Nathan's next appointment, July 13th, and I feel like shots will be a HUGE part of his agenda, or will he look at my sons records and realize the importance of the blood test and MRI and sonogram. Which is where I feel the focus should be. At this point all three pediatricians have been so programmed to look at shots, that they don't look at the big picture CANCER could kill him first, and at first I didn't know of any kid with Hemi that did die. Now I do, so my hunch was correct, this SHOULD BE THE CONCERN if a doctor sees the limb difference and all else should be ignored until this child gets a sonogram and blood test schedule.
What did you succeed in getting the shots? some mandatory sentence. What did you do? caused months, no years at this point to the mother as she wondered if this should of been dont. Even the doctor from Emory didn't mandate the importance of the screenings...just come back for a sonogram in 6 months (ummmm that time has long since come and gone, and it's been a year.) No sonogram and no blood tests that I know of have been run on my son for cancer.
Doctor, your saying his bones and muscles are affected by this condition?.....and his immune system is different from his cells in his bones and muscles. ummm later you talked about how his brain is also affected by this same condition. So do shots cause changes in my sons brain? I don't know but I also know if his brain isn't looked at first you have nothing to measure it by and you still wouldn't have enough data to note this. What causes one child who has the ability to speak to control his speech so much as to give up his ability to communicate? You can't make a child talk, if they don't have this connection.
With Autism being so common, it was the natural assumption for many. If you hung out with Nathan and didn't know about Hemihypertrophy it would be a question.
The day Nathan was born I put my fingers around his legs and felt a difference in the circumference, I also noticed a difference in the length. I mentioned it to Dr. Slade who looked at him and didn't notice, but checked his hips.
A few months later I switched pediatricians and Dr. Ford would do the same thing. I continued to notice this and at his second birthday appointment. I said, could you please look at his legs. At this point he looked again, and wanted to know how he missed this. Instead of having more concern for his leg length difference the stupid shots are the constant focus.
To this my anger and frustration surmounts REALLY, REALLY, SHOTS ARE YOUR FOCUS?? DRILLED INTO YOUR HEAD BECAUSE THE STATE MAKES IT MANDATORY. You missed something all right your focus was too much on my son getting his shots and not enough on my son. And when you did talk me into getting a shot, he stopped saying the word up. Now I don't want to go into the Autism and shot debate, that was lied about by one of the top doctors who admitted and got into trouble for it, Dr. Wakefield.
Enough parents have noted the halt in speech and shots, that it needs to be looked into more and we need to titre more kids rather than put more vaccines into their bodies in my opinion. Especially Army Brat kids, how many antibodies did my kids get from me? any? I don't know. The doctor said you can't titre if they haven't had a shot, because it won't measure anything. We talked about the chicken pox shot my daughter was titre for and didn't need a second dose.
Again I have switched pediatricians and AGAIN a good part of the conversation is once again the shots my son is missing. I want my son titred. Measure what his body did with the vaccine before you go putting more into it. At least he is trying to explain to me about why this doesn't work if your child doesn't have any vaccine to measure antibodies, but I also feel he doesn't know that much about the subject, and will be studying up on a few things before Nathan's next appointment, July 13th, and I feel like shots will be a HUGE part of his agenda, or will he look at my sons records and realize the importance of the blood test and MRI and sonogram. Which is where I feel the focus should be. At this point all three pediatricians have been so programmed to look at shots, that they don't look at the big picture CANCER could kill him first, and at first I didn't know of any kid with Hemi that did die. Now I do, so my hunch was correct, this SHOULD BE THE CONCERN if a doctor sees the limb difference and all else should be ignored until this child gets a sonogram and blood test schedule.
What did you succeed in getting the shots? some mandatory sentence. What did you do? caused months, no years at this point to the mother as she wondered if this should of been dont. Even the doctor from Emory didn't mandate the importance of the screenings...just come back for a sonogram in 6 months (ummmm that time has long since come and gone, and it's been a year.) No sonogram and no blood tests that I know of have been run on my son for cancer.
Doctor, your saying his bones and muscles are affected by this condition?.....and his immune system is different from his cells in his bones and muscles. ummm later you talked about how his brain is also affected by this same condition. So do shots cause changes in my sons brain? I don't know but I also know if his brain isn't looked at first you have nothing to measure it by and you still wouldn't have enough data to note this. What causes one child who has the ability to speak to control his speech so much as to give up his ability to communicate? You can't make a child talk, if they don't have this connection.
DOES YOUR CHILD HAVE HEMIHYPERTROPHY? MUST READ
> Tracie can I use this post on Nathan's Blog?? SHE SAID YES SO HERE IT IS. > > > > > I would go to a different doctor if your current doctor is not agreeing to > > the screening protocol. Hemi ( whether isolated or full-body hemi ) has > the > > same screening protocol as BWS does. I have been on these boards since my > > daughter was born 12 years ago, with both BWS and with hemi. Sadly, I know > > of a little girl, with "just" hemi, named Mia, who passed away from cancer > > ( Wilms Tumor ) as her parents did not follow the screening protocol and > it > > was caught too late. My daughter, Katie, also had cancer ( hepatoblastoma, > > liver cancer ) that was caught very early on by an elevated AFP level ( on > > the very same day that an ultrasound was "all clear" ). Katie was 5 mo. > old > > when she was diagnosed with cancer, and she is now 12 and has been in > > remission since she was 1 year old. FOLLOW THE RECOMMENDED SCREENING > > PROTOCOL TO A "T"!!!!! I am not trying to scare you, just reiterate the > > importance of the screening protocol. It is recommended for a reason, as > > these cancers are very aggressive and fast-growing if not caught in their > > earliest stages. > > > > Tracie
TO SAY GOD HAD ME READ THIS AT THE RIGHT TIME WAS YESTERDAY JULY 1ST.
TO SAY GOD HAD ME READ THIS AT THE RIGHT TIME WAS YESTERDAY JULY 1ST.
Saturday, June 30, 2012
Another Journey, a NEW direction or a U-turn
I didn't know I was capable of so many emotions and frustrations until I was at Dick's sporting goods and got a phone call from the hospital in Atlanta. It really doesn't matter anymore, it all worked out for better than what I expected. It just was exhausting and emotional as once again the woman was informing me that my son would go under anestesia, yes I knew this and perhaps I've written about it, I was so happy thinking this time Nate would be gassed and then get his MRI. UMMM NO, they didn't do the gas...UGH WHAT?!! I KNOW I DOUBLE, TRIPLE CHECKED WITH THE DOCTOR...ugh. Needless to say, I was ticked but I cancelled the MRI.
An act of God that pushed me in a new direction, or an old one. Back to the doctor I had heard about in Augusta many times while I lived there, not sure why he wasn't my kids pediatrician except he must of left after Dr. Freeman did or before...anyway I found his name and found he had opened a new practice and (I am getting ahead of myself.)
First I called MCG and asked to speak to someone in the MRI department...took a while but I spoke directly to the person who monitors the kiddos while they are getting the MRI...and so it went. Yes, we do the gas on Monday and Thursday. I asked about Dr. Gett's ability to use the facilities, yes, he was there the other day or a patient of his was...okey dokey we are good to go.
Called the doctors office and spoke to them for a while and they could see me at 1:30 so I hopped in the car with all three boys, dropped my husband's car off at Groome and headed to drop the girls off at church and whew this is TMI and I am tired and rambling... Drove 3 hours to Augusta and me Dr. David Fisher, who spoke with me for well over an hour. Took Nathan's stack of paperwork and photocopied it....and said he's see him again on the 13th and blocked out an hour at least for his second visit.
Turns out Augusta has every doctor Nathan needs plus some others I hadn't heard about....okay health care that I already pay for here goes one expensive kid. We'll see if he ever speaks, reads, writes, life is interesting that is for sure.
An act of God that pushed me in a new direction, or an old one. Back to the doctor I had heard about in Augusta many times while I lived there, not sure why he wasn't my kids pediatrician except he must of left after Dr. Freeman did or before...anyway I found his name and found he had opened a new practice and (I am getting ahead of myself.)
First I called MCG and asked to speak to someone in the MRI department...took a while but I spoke directly to the person who monitors the kiddos while they are getting the MRI...and so it went. Yes, we do the gas on Monday and Thursday. I asked about Dr. Gett's ability to use the facilities, yes, he was there the other day or a patient of his was...okey dokey we are good to go.
Called the doctors office and spoke to them for a while and they could see me at 1:30 so I hopped in the car with all three boys, dropped my husband's car off at Groome and headed to drop the girls off at church and whew this is TMI and I am tired and rambling... Drove 3 hours to Augusta and me Dr. David Fisher, who spoke with me for well over an hour. Took Nathan's stack of paperwork and photocopied it....and said he's see him again on the 13th and blocked out an hour at least for his second visit.
Turns out Augusta has every doctor Nathan needs plus some others I hadn't heard about....okay health care that I already pay for here goes one expensive kid. We'll see if he ever speaks, reads, writes, life is interesting that is for sure.
Thursday, June 28, 2012
YOU ARE SO WORTH IT NATE
Afraid to love, something that could break,
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
[ Lyrics from: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/all_of_me.html ]
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
It's where I'll start
More lyrics: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/#share
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
[ Lyrics from: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/all_of_me.html ]
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
It's where I'll start
More lyrics: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/#share
UMMM YOU HAVE GOT TO BE KIDDING ME
AND SO IT HAPPENED AGAIN. ugh. There are days when I think, forget this, the doctors etc. The speech therapy, the prescription for his shoe lift, the sonogram on his belly, and the blood test to make sure he doesn't have cancer. Can I run away yet? NO, of course not, I have to stand and fight for what is best for my boy. All of me is the song that comes to mind. I found myself sobbing as I drove down I-75 and once again crying as I write this. I DON'T KNOW WHAT TO DO. Keep moving forward.
There isn't much else I can do. I am calling Medical College of Georgia again in the am. It was too late when I called tonight. I need to know if they have the ability to run an MRI with knocking the kid out with Gas and then putting the needle in their veins. I am too tired to write what all happened. Dumb Doctor, said they could but they couldn't so once again I am at the start over again with Nathan. No MRI on July 6th. One emotional day for me. Cox cable it was the wrong day to come home and find that you turned it off. So tired of running out of banwidth, before running out of month.
There isn't much else I can do. I am calling Medical College of Georgia again in the am. It was too late when I called tonight. I need to know if they have the ability to run an MRI with knocking the kid out with Gas and then putting the needle in their veins. I am too tired to write what all happened. Dumb Doctor, said they could but they couldn't so once again I am at the start over again with Nathan. No MRI on July 6th. One emotional day for me. Cox cable it was the wrong day to come home and find that you turned it off. So tired of running out of banwidth, before running out of month.
Monday, June 11, 2012
Why run an MRI?
On my forum for Hemihypertrophy the importance of running an MRI on the brain was talked about, seems some don't have this run. For my son, I was rather insisting on how this would be done, but it would be done. I just wanted him to have gas first and then his veins entered. Seems they just didn't understand how complicated this child is at the Macon Children Hospital. Frankly they seemed like a bunch of idiots guessing on how to knock him out or calm him enough to put a needle into his arm. Yes, gas has some risks, but so does the numbing cream that they put on his arms in huge amounts under a plastic coating. I know, I got some on my lips and tongue and had issues for a day.
The importance of having an MRI was pointed out by a grandmother of a child with Hemihypertrophy. Jane Cooper had this to say, "MRI's are very important, my Granddaughter Scarlett has left sided hemi and her brain is affected, one half of the brain is larger and it has affected her optic nerve and has consequently affected her sight in her left eye, also it has affected how the brain fluid drains, she'll have to have a shunt when she is older, without the MRI we wouldn't have known any of this so I urge you or anyone else to do this!"
Adele Cloete Had this to say about why an MRI should be run,"As organs can be affected and could cause problems. In Jessica's case, her kidneys were affected and caused some slight dietary changes when she was smaller. In left sided Hemi, the heart could be enlarged and would need to be monitored closely. As Hemi is still a very "unknown" condition, I would rather have these scans done and deal with any potential problems as early as possible."
The importance of having an MRI was pointed out by a grandmother of a child with Hemihypertrophy. Jane Cooper had this to say, "MRI's are very important, my Granddaughter Scarlett has left sided hemi and her brain is affected, one half of the brain is larger and it has affected her optic nerve and has consequently affected her sight in her left eye, also it has affected how the brain fluid drains, she'll have to have a shunt when she is older, without the MRI we wouldn't have known any of this so I urge you or anyone else to do this!"
Adele Cloete Had this to say about why an MRI should be run,"As organs can be affected and could cause problems. In Jessica's case, her kidneys were affected and caused some slight dietary changes when she was smaller. In left sided Hemi, the heart could be enlarged and would need to be monitored closely. As Hemi is still a very "unknown" condition, I would rather have these scans done and deal with any potential problems as early as possible."
Monday, June 4, 2012
Geneticist Report
Today I received Nathan's Geneticist Report from Emory University School of Medicine.
Basically they wrote down things we said and sent it to the doctors we asked them to, from here we go for the MRI, sonogram and blood work on July 6th, from there I guess they will give us the diagnosis of what our son has for sure, but it sure seems like we are correct with saying he has hemihypertrophy.
Basically they wrote down things we said and sent it to the doctors we asked them to, from here we go for the MRI, sonogram and blood work on July 6th, from there I guess they will give us the diagnosis of what our son has for sure, but it sure seems like we are correct with saying he has hemihypertrophy.
Wednesday, May 30, 2012
Saturday, May 26, 2012
MRI, Ultrasound, and Bloodwork
Wow, I like this!! Knock Nate out and get all the difficult things taking care of. They called on the way home from the appointment after the doctor order the procedures, this encouraged me, a no wait for the date. Turns out the woman who called could only give a sonogram date, so I had to wait a day for someone who could give both and ultrasound and a MRI, they'll also draw the blood they need to rule out a few things and find if he has any abnormal cell growth.
July 6th, 2012 they will run a bunch of test to find out more about Nathan, I'll get to see his brain, his tummy will get a look at to rule out the Wilm's tumor, that kids with Hemihypertrophy are prone to getting, I guess it is official diagnosis, our son has Hemihypertrophy.
His speech issues, his intelligence level is unknown. Our journey continues, but at least we are taking some huge steps finally. As a Mom, I sympathize and realize I whine, complain, and moan about something so minor, but major when one is used to having children that are healthy. Nathan is healthy, happy, and so much fun. The giggles, the kisses, the jump, jump, jump, the pretending and oh so funny acting out of Dora the Explorer episodes are so cute.
He has the snap blocks and it took his sister explaining to me that he was acting out Dora's flute. I so comprehended his play, he's so adorable. What a funny guy. Tuesday starts a 2 week program of Dinosaurs at Preschool, I can't wait to take him to a local museum that has dinosaurs next week and see his reaction.
Thursday, May 24, 2012
Some with Hemi also have other issues
One of the things the doctor looked for in my son was
Beckwith-Wiedemann syndrome it took me a while to remember what it was called, from everything I know Nathan does not have this, that is why I didn't bring it up, I believe he doesn't, guess I'll know when they tell me what he does have. SIGH. Rereading just to double check.
June 2012 Hemihypertrophy Awareness Month
We spend a few years wondering if there are other issues besides the differences in limb lengths, tumors, etc. and then when your limbs will be lengthened if and how it will be done.
This blog is my sons journey, I speak for him at times, I hope in the future he may be able to speak for himself, but for now I am his voice.
Today we had our first meeting with the geneticist and she was there for a little while don't really have much to say about her but she knew more about Hemihypertophy than the other doctors. I really wouldn't know about the neurologist because it was just me and my son pitching a fit the entire time we were in his office, but well his access to hospitals was so limited he was of little use for getting test done. Although his geneticist is unable to get the test done in Augusta where I had hoped at least we are having the test run the way the other parents described in they yahoo group and facebook page. They'll gas the kid and then stick needles into him, run an MRI to look at his brain and then a sonogram, not sure what else.
Geneticist councilor, I think her name was Kelly Connell was awesome. She wasn't faxed all of our information so after a few questions my husband said, it was all on the form we faxed in....so thankfully we had copies of that and everything but the information from the neurologist. She photocopied everything we had from the FIND program and all the doctors.
From there we talked for an hour, she asked us more questions, and more questions and more questions, and they asked Nathan to count to 10 toward the end....ummm so not ever happened, and of course he didn't do it. A bit of spanish numbers, but count to 10, no. He blew the doctor a kiss on the way out and that was his extent of his interaction. She didn't say she saw anything on his ears (some other hemi condition, guess there is some blood test for another.) And so our journey continues with this kiddo and some unconfirmed hemi something or another.
Guess we will see my favorite doctor in June the orthopedic doctor, first we'll need to schedule that appointment.
My Vent, my scream, my frustrations!!!
3 years and 3 months and counting the days till when I have a confirmed diagnosis. I am so tired right now.
MRI at age 3 is a hard one to do awake. They wanted to put an IV in him at the Macon Children's Hospital....they are CRAZY. I will get it done in Atlanta. The local Doctor doesn't have access to a hospital where they are capable of doing it the way I want it run, I am ticked he even set it up in Macon with a 3 year old, none of the other parents talked about them just putting an IV in their kids, I was so unprepared for that part, so thank you for sending me a bill for wasting a day of my time, my money, and my energy.
So how does this all work. Doctors, doctors and more doctors and yet none of them meet, none of them speak to each other, they don't even know one another. This not meeting must be the dumbest thing I have ever seen. My son has no study team that figures out more about Hemihypertrophy. I am not sure how many kids in this area have this problem, but good luck finding a doctor that is familiar with it in Warner Robins, Georgia. As far as I know no one knows about this with out reading about it, I guess it is time for me to do something about that. T-shirts for Nate, I donno. June is the not official month for Hemihypertrophy, I'd like to get some t-shirts made up.
Guess I should start at the beginning of today, I can't even remember what I have written on Nathan's blog, but today was his big day, he finally met the doctor that knows about hemihypertrophy, not sure how many patients she has with this disease, birth defect or what ever you want to call it. My brain is fried. She ordered the test needed to confirm some things that we are guessing at. He'll be sedated with gas and have an MRI and a sonogram done, blood drawn, and I don't know what else done, I asked that they look at his ears while he is knocked out.
On the way home I got a phone call to set up for the sonogram on Nathan's belly for the possible tumors a child with this condition should have run every couple of months, Nathan has had one. Most people have these run every 3 to 4 months from birth and blood drawn for the cancer blood levels (can't remember the name of what is raised....) anyway, it seems as if this is where we start the process of the correct screenings being done and hopefully less wondering if everything is okay with Nathan and more knowing he is healthy. That is the part for Hemihypertrophy.
The MRI will be done on his brain to see his brain and how it functions, think ctscans were also mentioned but the MRI was definitely there because when I mentioned it to the sonogram tech she said, she missed that part on the sheet but it was there on the bottom and to expect another phone call from a the people who can set up both, but that she only could do the sonogram. She mentioned the names of the ladies that would be calling me, so I am waiting on that.
So how does this all work. Doctors, doctors and more doctors and yet none of them meet, none of them speak to each other, they don't even know one another. This not meeting must be the dumbest thing I have ever seen. My son has no study team that figures out more about Hemihypertrophy. I am not sure how many kids in this area have this problem, but good luck finding a doctor that is familiar with it in Warner Robins, Georgia. As far as I know no one knows about this with out reading about it, I guess it is time for me to do something about that. T-shirts for Nate, I donno. June is the not official month for Hemihypertrophy, I'd like to get some t-shirts made up.
Guess I should start at the beginning of today, I can't even remember what I have written on Nathan's blog, but today was his big day, he finally met the doctor that knows about hemihypertrophy, not sure how many patients she has with this disease, birth defect or what ever you want to call it. My brain is fried. She ordered the test needed to confirm some things that we are guessing at. He'll be sedated with gas and have an MRI and a sonogram done, blood drawn, and I don't know what else done, I asked that they look at his ears while he is knocked out.
On the way home I got a phone call to set up for the sonogram on Nathan's belly for the possible tumors a child with this condition should have run every couple of months, Nathan has had one. Most people have these run every 3 to 4 months from birth and blood drawn for the cancer blood levels (can't remember the name of what is raised....) anyway, it seems as if this is where we start the process of the correct screenings being done and hopefully less wondering if everything is okay with Nathan and more knowing he is healthy. That is the part for Hemihypertrophy.
The MRI will be done on his brain to see his brain and how it functions, think ctscans were also mentioned but the MRI was definitely there because when I mentioned it to the sonogram tech she said, she missed that part on the sheet but it was there on the bottom and to expect another phone call from a the people who can set up both, but that she only could do the sonogram. She mentioned the names of the ladies that would be calling me, so I am waiting on that.
Wednesday, May 23, 2012
3DS
Sorry Nathan just realized my blogger name is from before you, you are now included. You are my 3rd Dear Son and only one that I blog about regularly, maybe it is because you don't carry on a conversation. (your older brother is like that the most, and he is your favorite sibling.)
The Sun Will Come out Tomorrow
Tomorrow, Tomorrow is only a day away!!! ugh...do I want tomorrow to be here? Yes, but no, sometimes I just don't know what I want, I want Nathan to talk....(then again his siblings talk all the time....) yes I do want him to speak... I think a friend said it best, "We like him the way he is." Okay, yes I like the kid, I love the kid. I feel as if it is hurry up and wait with the child.
He'll be getting the diagnosis tomorrow that will help to prepare him for his tomorrows. Whew, I hope we have all the paper work in order.
Thursday, May 3, 2012
Trying to Understand
No conversation, babbling and flip of the hand, a dance, a wiggle, and a smile. So much more than many, and yet Nate is not like other children. I wonder what goes on in his head, and if he will be able to do the things his siblings do. Will he be able to drive a car? Go away to college??
What level will he be on when he is 18? He is cute, very, very, cute.
Thinking about switching pediatricians. My doctor recommended another one, he felt I needed to have a pediatrician that listened more. I wish he was a pediatrician also, but he is just for adults. Bummers. He is the first doctor to mention tittering.
MRI, sonogram, blood work, there is so much I need to get done for this child. A shoe lift....
Nathan, "Oww , owww, owww," and then he kissed my boo boo. These are the moments where I realize he is just different, and very, very, cute.
Tuesday, May 1, 2012
Giving up or Giving in
Find program insisted you have your shots. I want you tittered. I felt this was the way to go with you from the beginning and still I let the Dr. talk me into giving you a round of shots and you stopped saying the word UP. You say it now, but it stopped, and they do not understand your condition. I want to scream, slap, beat on the next doctor that thinks shots are more important than reading about Hemihypertrophy. Unusual cell growth may cause cancer, I believe was what I read.
If your cell growth speeds up at times and you are given a vaccine, and it multiplies in your body faster than the average child, you are out of the norm and should be tittered. I am just so frustrated so tired of arguing.
They won't put you in the FIND program with out the shots. Guess what you aren't getting speech therapy. Your doing better to some, but to me you are so far behind. Two steps back, for this Mom, reminding myself, to take two steps back. You will catch up, I just need to step back and realize you are two steps forward, and two steps behind.
I was correct about your sister not needing a second shot for chicken pox when her doctor tittered her, now the journey of getting you tittered also, so I know what you need shot wise and what your body has antibodies already. Such an exhausting journey, jumping through hoops, nothing is happening easily.
Monday, April 2, 2012
speech
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory until you see your child overcoming some of those challenges. http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
So true, yesterday was a day at church and I listened while I heard another boy say, "I want to go in there." My son was already in there, but not because he asked, because he tried to get in there, so I picked him up and put him in there. As I listened to this child, who was removed from the sanctuary because his Mother didn't put him in the baby area....a certain sadness came over me, my son can't or won't speak many words and is older than this boy.
Guessing what a child wants as they attempt to let you know there is something that they want but do not have the words for it, is a trial. I long for the day when I can ask my son, what flavor ice cream do you want?
So true, yesterday was a day at church and I listened while I heard another boy say, "I want to go in there." My son was already in there, but not because he asked, because he tried to get in there, so I picked him up and put him in there. As I listened to this child, who was removed from the sanctuary because his Mother didn't put him in the baby area....a certain sadness came over me, my son can't or won't speak many words and is older than this boy.
Guessing what a child wants as they attempt to let you know there is something that they want but do not have the words for it, is a trial. I long for the day when I can ask my son, what flavor ice cream do you want?
Wednesday, March 14, 2012
Just sad
There is no good-morning, no words, no questions, just silence. No conversation, no sharing of thoughts, do I say you are less than a person, less of the norm you are. I get so tired of talking and not having a conversation.
Monday, March 5, 2012
MRI
Whew what a day that was. Now remember I am talking to other parents and the doctors have had little communication with me about this MRI, a slip was mailed, but it was lost so I had to call and find out what my son could eat. He could eat until 5am and drink clear liquids until 10am.
After loading him up on apple juice, 4 boxes and he was happy not to eat food, my Mom came from 2 plus hours away. We loaded Nate up and drove 25 minutes to the Children's hospital. It was raining of course, to add to the dreary day of doing something I wasn't used to doing.
Upon his arrival he didn't want to leave his stroller, and he hated the arm band. (they put it on his right arm which both my Mother and I thought there should be a note made to nurses that arm bands always go to the less dominate hand....so he is screaming about that.) Some cream comes out and they put a huge blob of this stuff on his arm and a plastic bubble with sealed sticky around it....at this point I ask when he will be given gas. "Oh we don't do that." Nurse says. "well when does that happen?" Nurse,"that isn't done in this facility." Oh great so two bubble filled with gunk and that means you are all ready preparing for one needle to fail....oh this is not good!!! The nurse leaves me to think about it, umm after trying to call my husband and not getting ahold of him, I make the choice of NO, my son will not go through this so they can run an MRI.
So we left, mission not accomplished, but another one made. I am in control of what does happen to this little boy, the choices I make form his future. For now he will continue at preschool, the answers from medical stuff will have to happen one day, but for now fly my little boy and run, and play, and be happy.
Tomorrow Dr. Bray will come to your preschool and evaluate your speech and if they don't give you special classes they are idiots.
After loading him up on apple juice, 4 boxes and he was happy not to eat food, my Mom came from 2 plus hours away. We loaded Nate up and drove 25 minutes to the Children's hospital. It was raining of course, to add to the dreary day of doing something I wasn't used to doing.
Upon his arrival he didn't want to leave his stroller, and he hated the arm band. (they put it on his right arm which both my Mother and I thought there should be a note made to nurses that arm bands always go to the less dominate hand....so he is screaming about that.) Some cream comes out and they put a huge blob of this stuff on his arm and a plastic bubble with sealed sticky around it....at this point I ask when he will be given gas. "Oh we don't do that." Nurse says. "well when does that happen?" Nurse,"that isn't done in this facility." Oh great so two bubble filled with gunk and that means you are all ready preparing for one needle to fail....oh this is not good!!! The nurse leaves me to think about it, umm after trying to call my husband and not getting ahold of him, I make the choice of NO, my son will not go through this so they can run an MRI.
So we left, mission not accomplished, but another one made. I am in control of what does happen to this little boy, the choices I make form his future. For now he will continue at preschool, the answers from medical stuff will have to happen one day, but for now fly my little boy and run, and play, and be happy.
Thursday, March 1, 2012
Tired
My son's condition is so minor in many ways, but major for me. I am tired trying to get ready for his MRI. If there is one thing this condition does it is to make me more sympathetic to parents of children with disabilities.
Nate can somewhat speak, their are children who have no words. I was listening to a two year old girl yesterday and missing those baby conversations I should of long since had with my son. I hope he begins to put words together soon.
He's a happy little boy and active, for this I am thankful, but I am also tired.
Nate can somewhat speak, their are children who have no words. I was listening to a two year old girl yesterday and missing those baby conversations I should of long since had with my son. I hope he begins to put words together soon.
He's a happy little boy and active, for this I am thankful, but I am also tired.
from wikipedia
Hemihypertrophy
From Wikipedia, the free encyclopedia
Hemihypertrophy is a condition in which one side of the body or a part of one side is larger than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis, a curvature of the spine. There are two main surgical options for the treatment of hemihypertrophy, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally. Hemifacial hyperplasia is believed to be a minor form of hemihypertrophy.[1]
From Wikipedia, the free encyclopedia
Hemihypertrophy is a condition in which one side of the body or a part of one side is larger than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis, a curvature of the spine. There are two main surgical options for the treatment of hemihypertrophy, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally. Hemifacial hyperplasia is believed to be a minor form of hemihypertrophy.[1]
Wednesday, February 29, 2012
MRI
tomorrow is the big day for Nate, he'll be sedated and given an MRI. I think they should be able to tell more from this than most tests. He can't eat after 5am, drink clear liquids after 10am.....11am he needs to be there and the MRI is run at 1pm.
Pre-school
yeppers, I enrolled him, mostly to see if he got any better at talking. He at least is listening and doing what he should be doing for the most part. He is following the lead of the other kids, which won't be an issue for a while yet. He is with mostly girls so this is another plus.
Friday, February 17, 2012
FIND called
Yes, they called to keep in touch. Set up an appointment for Nathan in another month to meet with a doctor. In the mean time have I been keeping up with the paper work, is Nathan improving?
Okay FIND program, no I don't know where that paperwork went, Nathan took the pictures of things and I think I put them back in there. I know I need to put a board somewhere so he can point to what he wants.
Medically my son meets the requirements for the FIND program. I could continue to go this route or I can go visit the homeschool Mom who is a speech pathologist when I get back from enjoying my 12 year old skiing for the first time.
Nathan is talking more than he did last month, but he isn't even close to where his peers are. The guessing games we have to figure out what he wants, as we try to keep him from screaming. He is frustrated at times.
Well for now I have other things I must get done, like find that folder.
There are only 7 places for 3 year olds to attend preschool for the FIND program, it isn't at every elementary school, so I wonder where the closest school is and if I shouldn't just put him in a regular preschool that is close to home and see what he starts doing.
Okay FIND program, no I don't know where that paperwork went, Nathan took the pictures of things and I think I put them back in there. I know I need to put a board somewhere so he can point to what he wants.
Medically my son meets the requirements for the FIND program. I could continue to go this route or I can go visit the homeschool Mom who is a speech pathologist when I get back from enjoying my 12 year old skiing for the first time.
Nathan is talking more than he did last month, but he isn't even close to where his peers are. The guessing games we have to figure out what he wants, as we try to keep him from screaming. He is frustrated at times.
Well for now I have other things I must get done, like find that folder.
There are only 7 places for 3 year olds to attend preschool for the FIND program, it isn't at every elementary school, so I wonder where the closest school is and if I shouldn't just put him in a regular preschool that is close to home and see what he starts doing.
Wednesday, January 25, 2012
Hemihypertrophy and the brain
Adapted from Dr. Green.com
Hemihypertrophy, also called hemihyperplasia, is a greater-than-normal asymmetry between the right and left sides of the body. This difference can be in just one finger; just one limb; just the face; or an entire half of the body, including half the brain, half the tongue and the internal organs, or any variation in between. Someone with hemihypertrophy might have acne on only one side of the face. The skin is often thicker, and there may be more hair on the head, on the larger side. Rarely, children can have crossed hemihypertrophy (one leg and the opposite arm are larger than their partners).
Theories abound as to the cause of hemihypertrophy - perhaps it is increased blood flow or decreased lymph drainage, or nerve or hormone abnormalities. To date, not enough research has been conducted to choose between the theories. We don't know the cause, but we do know that hemihypertrophy is usually not inherited. People with hemihypertrophy can go on to have healthy, normal children.
http://nohandsspecialneeds.blogspot.com/2008/11/hemihypertrophy.html
Including HALF THE BRAIN. Maybe, I guess they would be able to spot this with the MRI. March 1st is when this test will be run on Nate.
It sure seems like his brain has hemihypertrophy. One side comes together for a moment with his speech and then suddenly the word doesn't happen, they do not come together but he seems to understand.
Hemihypertrophy, also called hemihyperplasia, is a greater-than-normal asymmetry between the right and left sides of the body. This difference can be in just one finger; just one limb; just the face; or an entire half of the body, including half the brain, half the tongue and the internal organs, or any variation in between. Someone with hemihypertrophy might have acne on only one side of the face. The skin is often thicker, and there may be more hair on the head, on the larger side. Rarely, children can have crossed hemihypertrophy (one leg and the opposite arm are larger than their partners).
Theories abound as to the cause of hemihypertrophy - perhaps it is increased blood flow or decreased lymph drainage, or nerve or hormone abnormalities. To date, not enough research has been conducted to choose between the theories. We don't know the cause, but we do know that hemihypertrophy is usually not inherited. People with hemihypertrophy can go on to have healthy, normal children.
http://nohandsspecialneeds.blogspot.com/2008/11/hemihypertrophy.html
Including HALF THE BRAIN. Maybe, I guess they would be able to spot this with the MRI. March 1st is when this test will be run on Nate.
It sure seems like his brain has hemihypertrophy. One side comes together for a moment with his speech and then suddenly the word doesn't happen, they do not come together but he seems to understand.
Friday, January 20, 2012
OOPS
So I am sitting down trying to figure out the pieces of this puzzle and why pieces aren't fitting. Nathan has not been diagnosed by a geneticist. He has seen an pediatric orthopedic who knew enough to say he has hemi a sementry GOOGLE FOUND THIS
Hemi-asymmetries discussed here include: 1) hemihyperplasia which may affect either one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as "hemihypertrophy"; 2) hemihypoplasia which may also affect one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as in hemifacial microsomia; 3) hemiatrophy, the quintessential craniofacial disorder being Romberg syndrome; and 4) miscellaneous conditions such as Bencze syndrome and hemimaxillofacial dysplasia.
TAKEN FROM http://www.ncbi.nlm.nih.gov/pubmed/7608576
AND SO THE WONDER OF WHAT DID THAT DOCTOR SAY?? My husband found hemihypertrophy. And so did I when I googled uneven limbs....and that is how we found the name for what we are waiting for our son to be diagnosed as.....UGH.
So we need to see a geneticist and when could we get the first appointment for that: MAY 24TH, 2012. How long that one has been on the books, since May 2011....I do believe. I am just so baffled as I am still comprehending all this stuff that is being done and NOT being done.
It seems as if the parents whose children are diagnosed at birth, have a certain grove they are in, while I am so far on the power curve because it wasn't noticed until Nate's second birthday by the pediatrician.
Hemi-asymmetries discussed here include: 1) hemihyperplasia which may affect either one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as "hemihypertrophy"; 2) hemihypoplasia which may also affect one tissue such as bone with secondary regional consequences or multiple tissues on a primary basis such as in hemifacial microsomia; 3) hemiatrophy, the quintessential craniofacial disorder being Romberg syndrome; and 4) miscellaneous conditions such as Bencze syndrome and hemimaxillofacial dysplasia.
TAKEN FROM http://www.ncbi.nlm.nih.gov/pubmed/7608576
AND SO THE WONDER OF WHAT DID THAT DOCTOR SAY?? My husband found hemihypertrophy. And so did I when I googled uneven limbs....and that is how we found the name for what we are waiting for our son to be diagnosed as.....UGH.
So we need to see a geneticist and when could we get the first appointment for that: MAY 24TH, 2012. How long that one has been on the books, since May 2011....I do believe. I am just so baffled as I am still comprehending all this stuff that is being done and NOT being done.
It seems as if the parents whose children are diagnosed at birth, have a certain grove they are in, while I am so far on the power curve because it wasn't noticed until Nate's second birthday by the pediatrician.
All of Me by Matthew Hammitt
Afraid to love, something that could break,
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
[ Lyrics from: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/all_of_me.html ]
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
It's where I'll start
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
[ Lyrics from: http://www.lyricsmode.com/lyrics/m/matthew_hammitt/all_of_me.html ]
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
It's where I'll start
Today was Horrible
So today I decided to take a visit to my pediatricians office. I am now depressed and sick about the way things have been run and have to wonder how many other Parents go through such stupidity.
I have had two pediatricians for Nate. The first one was in Macon and the other local. Both didn't notice his leg length issue when I mentioned it. As usual they checked his hips, but no measurement of his length and width was ever taken on his legs. I don't know what to think, I just know I noticed this problem February 5th, 2009. Yes, the day he was born. I was blown off, ignored, by both pediatricians. I am the mother of five children a preschool teacher, when I notice something it is there. Excuse me why I vent. I am just baffled by the entire process and then how things can still be ignored. My son is almost three.
May 16, 2011 is when the leg length was finally noticed. What did my pediatrician say, "How did I miss that?" Well you did, you also don't know what hemihypertrophy is from my comprehension. I get that, I get that the leg length thing was slight and got worse with time, I get it and am thankful that I had two pediatricians that both didn't notice what I saw. Deep breath.... But why is my son not being seen every 3 months like other kids with hemihypertrophy, why isn't he getting blood drawn every 6 weeks like the other kids.....or am I not reading enough. I am tired. Tired of trying to figure out what is the right thing to do.
I lost it today, I didn't yell I didn't scream, all I could do is cry. As I drove to the pediatricians office listening to Klove All of Me came on and I am still a wreck tearing up.
I spoke to the referrals office. UGH they are the screw up and why I spent a bogus day yesterday driving to the wrong doctor. So while there I checked Nate's records. No mention of Hemihypertrophy is there, no notes given from the Orthopedic doctor to my pediatrician. So my pediatrician doesn't know about hemi from what I understand. And the orthopedic doesn't know about the Neurologist so they don't have each other to talk to about Nate......so this system is NUTS. There is no plan of action for this child, no study team to figure out what his problem is. Just doctors working independently.
I was right my referrals have to come via the pediatrician, the thing I didn't know is once that is done the pediatrician doesn't do anything he just sees you again later when you have an appointment. I am now wondering what this new computerized system is and thinking weird but maybe a computer can do a better job than these doctors at figuring out what the best course of action is. I am thinking some BONES thing where come the year xyz they can be looking at a virtual body in Japan for example and say yes we concur this is xyz and here is what we do for this condition.
So now I will call the Pediatric Orthopedic and hope I get some answers.
I have had two pediatricians for Nate. The first one was in Macon and the other local. Both didn't notice his leg length issue when I mentioned it. As usual they checked his hips, but no measurement of his length and width was ever taken on his legs. I don't know what to think, I just know I noticed this problem February 5th, 2009. Yes, the day he was born. I was blown off, ignored, by both pediatricians. I am the mother of five children a preschool teacher, when I notice something it is there. Excuse me why I vent. I am just baffled by the entire process and then how things can still be ignored. My son is almost three.
May 16, 2011 is when the leg length was finally noticed. What did my pediatrician say, "How did I miss that?" Well you did, you also don't know what hemihypertrophy is from my comprehension. I get that, I get that the leg length thing was slight and got worse with time, I get it and am thankful that I had two pediatricians that both didn't notice what I saw. Deep breath.... But why is my son not being seen every 3 months like other kids with hemihypertrophy, why isn't he getting blood drawn every 6 weeks like the other kids.....or am I not reading enough. I am tired. Tired of trying to figure out what is the right thing to do.
I lost it today, I didn't yell I didn't scream, all I could do is cry. As I drove to the pediatricians office listening to Klove All of Me came on and I am still a wreck tearing up.
I spoke to the referrals office. UGH they are the screw up and why I spent a bogus day yesterday driving to the wrong doctor. So while there I checked Nate's records. No mention of Hemihypertrophy is there, no notes given from the Orthopedic doctor to my pediatrician. So my pediatrician doesn't know about hemi from what I understand. And the orthopedic doesn't know about the Neurologist so they don't have each other to talk to about Nate......so this system is NUTS. There is no plan of action for this child, no study team to figure out what his problem is. Just doctors working independently.
I was right my referrals have to come via the pediatrician, the thing I didn't know is once that is done the pediatrician doesn't do anything he just sees you again later when you have an appointment. I am now wondering what this new computerized system is and thinking weird but maybe a computer can do a better job than these doctors at figuring out what the best course of action is. I am thinking some BONES thing where come the year xyz they can be looking at a virtual body in Japan for example and say yes we concur this is xyz and here is what we do for this condition.
So now I will call the Pediatric Orthopedic and hope I get some answers.
Thursday, January 19, 2012
Orthopedic Pediatric
I spent numerous phone calls between yesterday and today and maybe other days trying to figure out what and who and where I was going. It seems communications is not a strong point with appointment makers, doctors and more appointment people. So I ask questions and more questions and go all the way to Macon for an appointment that I was correct wasn't to be scheduled because we liked our doctor.
http://www.emoryhealthcare.org/orthopaedics/physicians/orthopedic-surgeons/robert-bruce.html our doctor that we like and will continue with.
http://www.emoryhealthcare.org/orthopaedics/physicians/orthopedic-surgeons/robert-bruce.html our doctor that we like and will continue with.
ummm well they haven't done this with my son.
I noticed today that treatment is different for all kids with hemi but there is one thing that no one in the group is arguing with....excuse me while I now freak out:
> Yes, ultrasound and AFP bloodwork every 6 weeks is the protocol to
> monitor for cancers related to hemi.
AHHHHH!!!! It's almost time for me to see yet another ortho guy, I don't understand what is going on.
> Yes, ultrasound and AFP bloodwork every 6 weeks is the protocol to
> monitor for cancers related to hemi.
AHHHHH!!!! It's almost time for me to see yet another ortho guy, I don't understand what is going on.
Wednesday, January 18, 2012
Neurologist Appointment
9am on a Wednesday, not a good time for me, but you take what you are given. I had not forgotten, I just could not find where I had the information written down. I called when they opened at 8:30 and found that yes my memory served me correctly and I had an appointment, I was even able to find the correct place to go. Baffled by where to go, I turned on the GPS and drove to Macon.
I had to park in the parking deck. (always a joy.) I found the general location of where I needed to be. I got my son out of the van, but I DID NOT PUT THE STROLLER IN THE VAN. He had to leave his favorite toys (for the day, they switch regularly). Today it was his 10 pound train engine and a stiff plastic top of a desk with ABC's on it. Yelling, screaming, and my carrying him out of the parking garage in a fireman's carry with purse and diaper bag in tow. Once we exited the parking garage thankfully his screaming came to a halt. Oh he also did not have on a coat, long since lost his socks and his shoes that were packed, I didn't even know if they fit. I made a picture of the ever caring Mother of hey a fifth child. He had a shirt on and a pair of pants, he was clean and he was dry for the moment.
I went into one Children's hospital and looked for the neurology department, it seemed logical to me that I was in the right place...NO. 9th floor of the surgery building, so back out and into the proper place. In finding the correct room we passed The Mickey Mouse show, Nathan spotted it and didn't want to move, so I had to drag him away, but thankfully it turned out to be the room where we were to be. He remained happy while in the waiting room. Then they put us in a room to wait and be seen by the doctor. I dealt with a screaming child, sitting in front of the door he wanted to get out of as he did what he could to destroy the room.
I spoke to the doctor over Nathan and dealt with his behavior by having him stand in the corner while the doctor asked me everything they had asked me at the FIND program and less. The information he was asking was all typed in a file on my daughters IPAD. He wanted to know what words my son could say. I gave him a brief list. He gave me lab work to have run on my son. WHAT I AM ALONE GETTING BLOOD DRAWN FROM THIS CHILD. Not thrilled but wanting this part of the exam over with so we could move forward on a plan of action for Nathan I went to the lab.
Where is the lab? Make a left out of the building, another left after the child's hospital and you'll find it on your left. Oh Joy!!! Haul child, diaper bag, purse and get there. What? you want a urine sample also!!! OH JOY!! He just peed. So here I am in yet another waiting room. Nate's bored and when he is bored he runs away. Top speed down the hall way and yes there is an exit door. He did this a few times, it seemed forever until this child was called and thank God the door had a bolt on it. Now I get him to pee a bit in a cup, not enough. Sit in the room and wait, wait, wait, thinking the nurses are flipping to who gets to draw blood from this kid. Eventually a nurse knocks on the door, I open it and ask her if she lost the toss and has to draw his blood, she was puzzled by my insanity at this point. Eventually another nurse came in and another and another. Smart, all hands on deck for this little guy, they seem to understand this is going to be difficult, they have been here before.
Nate wants to hold the valves, smart nurse doesn't argue, just gets new one. I am thankful they seem to comprehend how to get r done. Nate screams and holds tighter to the valves instead of trying to get the needle out, I am so thrilled to only have him crying but not fighting, but sigh, his vein gives out and they need to switch arms. Poor baby realizes for a second he can touch the needle and it is hectic but he decides holding the valves is better. I believe they took about 7 valves of blood. I am trying not to watch as I cry with him, distracting him by tickling, eating his ear, pinching him (yes saw this on a dentist special once, you'll trick the nerves into focusing on another area.) Anyway we got through it. They still need urine and Nate is empty so we head to McD's to fill him up.....yeppers back to hauling child, diaper bag and purse, really missing my stroller at this point, and a pair of shoes that fit this kid. (a weekend in Atlanta with the older 4 have thrown me off for this appointment that was scheduled before Christmas, half the information is long since forgotten.)
Apple juice and lunch and the boy is back to happy go lucky guy, jumping on the bench and having a blast at McD's. I try to get him to drink a second juice but he likes his smoothy more. Time to go back and pee again, not much but I am so done. I did go from McD's to the parking garage to get my van to drive to the office after starting to go without it. Exhausted from my 3+ hours in Macon, I head home and wonder what my next adventure holds for tomorrow.
Tomorrow is here, 1. PUTTING THE STROLLER IN THE VAN!!!
I had to park in the parking deck. (always a joy.) I found the general location of where I needed to be. I got my son out of the van, but I DID NOT PUT THE STROLLER IN THE VAN. He had to leave his favorite toys (for the day, they switch regularly). Today it was his 10 pound train engine and a stiff plastic top of a desk with ABC's on it. Yelling, screaming, and my carrying him out of the parking garage in a fireman's carry with purse and diaper bag in tow. Once we exited the parking garage thankfully his screaming came to a halt. Oh he also did not have on a coat, long since lost his socks and his shoes that were packed, I didn't even know if they fit. I made a picture of the ever caring Mother of hey a fifth child. He had a shirt on and a pair of pants, he was clean and he was dry for the moment.
I went into one Children's hospital and looked for the neurology department, it seemed logical to me that I was in the right place...NO. 9th floor of the surgery building, so back out and into the proper place. In finding the correct room we passed The Mickey Mouse show, Nathan spotted it and didn't want to move, so I had to drag him away, but thankfully it turned out to be the room where we were to be. He remained happy while in the waiting room. Then they put us in a room to wait and be seen by the doctor. I dealt with a screaming child, sitting in front of the door he wanted to get out of as he did what he could to destroy the room.
I spoke to the doctor over Nathan and dealt with his behavior by having him stand in the corner while the doctor asked me everything they had asked me at the FIND program and less. The information he was asking was all typed in a file on my daughters IPAD. He wanted to know what words my son could say. I gave him a brief list. He gave me lab work to have run on my son. WHAT I AM ALONE GETTING BLOOD DRAWN FROM THIS CHILD. Not thrilled but wanting this part of the exam over with so we could move forward on a plan of action for Nathan I went to the lab.
Where is the lab? Make a left out of the building, another left after the child's hospital and you'll find it on your left. Oh Joy!!! Haul child, diaper bag, purse and get there. What? you want a urine sample also!!! OH JOY!! He just peed. So here I am in yet another waiting room. Nate's bored and when he is bored he runs away. Top speed down the hall way and yes there is an exit door. He did this a few times, it seemed forever until this child was called and thank God the door had a bolt on it. Now I get him to pee a bit in a cup, not enough. Sit in the room and wait, wait, wait, thinking the nurses are flipping to who gets to draw blood from this kid. Eventually a nurse knocks on the door, I open it and ask her if she lost the toss and has to draw his blood, she was puzzled by my insanity at this point. Eventually another nurse came in and another and another. Smart, all hands on deck for this little guy, they seem to understand this is going to be difficult, they have been here before.
Nate wants to hold the valves, smart nurse doesn't argue, just gets new one. I am thankful they seem to comprehend how to get r done. Nate screams and holds tighter to the valves instead of trying to get the needle out, I am so thrilled to only have him crying but not fighting, but sigh, his vein gives out and they need to switch arms. Poor baby realizes for a second he can touch the needle and it is hectic but he decides holding the valves is better. I believe they took about 7 valves of blood. I am trying not to watch as I cry with him, distracting him by tickling, eating his ear, pinching him (yes saw this on a dentist special once, you'll trick the nerves into focusing on another area.) Anyway we got through it. They still need urine and Nate is empty so we head to McD's to fill him up.....yeppers back to hauling child, diaper bag and purse, really missing my stroller at this point, and a pair of shoes that fit this kid. (a weekend in Atlanta with the older 4 have thrown me off for this appointment that was scheduled before Christmas, half the information is long since forgotten.)
Apple juice and lunch and the boy is back to happy go lucky guy, jumping on the bench and having a blast at McD's. I try to get him to drink a second juice but he likes his smoothy more. Time to go back and pee again, not much but I am so done. I did go from McD's to the parking garage to get my van to drive to the office after starting to go without it. Exhausted from my 3+ hours in Macon, I head home and wonder what my next adventure holds for tomorrow.
Tomorrow is here, 1. PUTTING THE STROLLER IN THE VAN!!!
Tuesday, January 10, 2012
Another blog about hemihypertrophy
http://nativeeagle8.blogspot.com/2012/01/ultrasound-january-5th-2012.html There aren't many people that understand this problem without explaining it. Happy to find another Mom that understands what I am feeling.
FIND Program
I went to the evaluation yesterday. They went through check list for what Nathan can and cannot do. They sent me home with a list of things to try and get him to do. They'll call me again in a month and we'll go over them. He'll be three in a month and that is the age the FIND program begins.
Saturday, January 7, 2012
Nate you are Great
I look at you, and who can help but smile. Jump, jump, bounce, bounce, yes you are our bouncing baby boy always filled with JOY, but sometimes you throw a fit. Oh this year is the year of truth, of facing reality. Who are you little boy? What goes on in that head of yours? What do you like, it seems that it can change in a moment.
For the past couple of days you have carried around a paper thin di-cut of a fish. Weird, but you love this plastic thing, it came with your chalk from Pop pop.
I can hear you trying to sing Twinkle, Twinkle, little star.....so cute. Two words but I understand what you are singing. You can put puzzles together, trying to figure out your intelligence is not easy. It is such an unknown. You are so unique in everything you do.
Neurologist appointment is coming up. Monday you meet at the school. So much to do in learning about you. Another scan to make sure you don't have that tumor hemihypertrophy is known to cause. Higher risk for cancer, is one of the problems.....so our life will go on with a new normal this year.
For the past couple of days you have carried around a paper thin di-cut of a fish. Weird, but you love this plastic thing, it came with your chalk from Pop pop.
I can hear you trying to sing Twinkle, Twinkle, little star.....so cute. Two words but I understand what you are singing. You can put puzzles together, trying to figure out your intelligence is not easy. It is such an unknown. You are so unique in everything you do.
Neurologist appointment is coming up. Monday you meet at the school. So much to do in learning about you. Another scan to make sure you don't have that tumor hemihypertrophy is known to cause. Higher risk for cancer, is one of the problems.....so our life will go on with a new normal this year.
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