I forgot to write about my sons most recent routine check-up. He's fine, he's well, he's healthy and he is 5 years old. I don't even remember it was sometime in April, Friday before Easter that we made the journey again to Medical College of Georgia.
All my concerns for this child and I do believe he is now a normal five year old child with no delays. Many thanks to the other children/adults on facebook who also have hemihypertrophy and reassured me that Nathan was developing normally for a child with hemi and they also did the things he did.
Nathan does not have autism, but his paperwork says he does. I wish they would look more at hemihypertrophy and the development of the children with this condition rather than diagnosing them with what is common.
Nathan has NIMS, and no more tests are needed it is a simple diagnosis made by me. Nathan Isaiah Mullens Syndrome. We all have this syndrome we just need to rename it our name. Unique and created by God. Nathan is pretty amazing, created in the image of God.
Thursday, May 22, 2014
Wednesday, February 5, 2014
Happy 5th Birthday!!
Oh he walks, he talks, he is my five year old little boy. Three more years of scans, but I feel so much better than I did years ago when I first had him, and wondered...... so many questions and so many answers have been given.
I watched the debate of Ken Ham and Bill Nye.....and I could just think....oh who cares about scientist, live and discover who a kid is, and how ahem God made them.
http://www.youtube.com/watch?v=B98ycm5kH0E
I watched the debate of Ken Ham and Bill Nye.....and I could just think....oh who cares about scientist, live and discover who a kid is, and how ahem God made them.
http://www.youtube.com/watch?v=B98ycm5kH0E
Monday, January 13, 2014
Nate is almost 5 years old!!
A few more weeks until age 5!! I hate that I am thinking only 3 more years of sonograms and blood tests and then the risk for Wilm's tumor drops off and they treat him like a normal child at his check ups, except the minor leg length issues. And a few other issues.
Cell growth, sigh such an important thing we take for granted. As I look at cancer and what it does to lives, I am amazed at the things it also causes and I know it wasn't what God planned, but He is in the planning.
Way back when I was a teenager I remember a man who got cancer, he and I had a bond of a song called "Someday". He's long since passed away but I think about him when I think of this song.
I can't find the words to the song on the internet, strange. The song goes on about all the questions you'd ask God because you don't have the answers to them. Life is like this with Nate, I don't have the answers with Nate I am constantly searching but in the journey I find myself looking more to God, so he points me in the right direction. I don't have the answers for this kid, but I know God knows every hair on his head.
Cell growth, sigh such an important thing we take for granted. As I look at cancer and what it does to lives, I am amazed at the things it also causes and I know it wasn't what God planned, but He is in the planning.
Way back when I was a teenager I remember a man who got cancer, he and I had a bond of a song called "Someday". He's long since passed away but I think about him when I think of this song.
I can't find the words to the song on the internet, strange. The song goes on about all the questions you'd ask God because you don't have the answers to them. Life is like this with Nate, I don't have the answers with Nate I am constantly searching but in the journey I find myself looking more to God, so he points me in the right direction. I don't have the answers for this kid, but I know God knows every hair on his head.
Saturday, December 28, 2013
Nate's pretty Amazing
I guess I learned long ago, to take what experts say with a grain of salt. I'm a product of testing and observation myself having had an amazing study team try to figure out how I learn when I was 16. I was followed for an entire year. I knew this and at times it creeped me out. There is that guy again. He was the one who didn't agree with everyone else. He is also the guy who figured out how I learned so well in some areas while struggling in others. He noticed it one day when I was given routine paperwork to fill out. I pulled everything out of my purse to find my address, telephone number, etc. He realized I compensated for life by writing it down. I had lived for months in a new location and although my siblings could tell you the address and telephone number, I could not. I had written it down and could find the information, the location from certain areas of the Military base, but I had yet to put the information in my long term memory.
Strangely enough, when asked certain phone numbers and addresses, my long term memory is incredible. I can remember telephone numbers from 30 years ago, but ask me my younger daughter or sons cell phone numbers and I can not.
This man was able to then pull me back into the study room and give me a diagnosis of how I learn, a point in life that I would be thankful for and know how to learn from then out, but finding a place that teaches this way would be an adventure. I was blessed to be moved to New Jersey from Korea where this testing took place.
So as I watch my sons journey of learning I am amazed because unlike me, he recalls correctly how to put letters and numbers and things into place at age 4!!!
Strangely enough, when asked certain phone numbers and addresses, my long term memory is incredible. I can remember telephone numbers from 30 years ago, but ask me my younger daughter or sons cell phone numbers and I can not.
This man was able to then pull me back into the study room and give me a diagnosis of how I learn, a point in life that I would be thankful for and know how to learn from then out, but finding a place that teaches this way would be an adventure. I was blessed to be moved to New Jersey from Korea where this testing took place.
So as I watch my sons journey of learning I am amazed because unlike me, he recalls correctly how to put letters and numbers and things into place at age 4!!!
Saturday, November 16, 2013
Dear Moms of Hemihypertrophy kids,
Saturday, November 16, 2013
I am reading my rather pathetic blog.... I'll start and stop because something comes up. I've started looking at other Mom's of Hemihypertrophy kids who have older children and realize mine is also getting older.
I started facebook groups that divide into our child development blocks. When I first started looking at hemihypertrophy I was overwhelmed and the doctors didn't know what I was talking about. It wasn't until I really started searching and praying that I found the answers. The answers were found in other Mom's and children or adults with this condition. There aren't any books about hemihypertrophy but there are some about wilm's tumor.
My son was different from most in that I noticed the slight difference in my son's sizes but the pediatrician didn't until his 2 year appointment. By then I was thinking I was going crazier than normal. The MRI was scheduled but by then I was into the support groups full swing and they weren't running it the way the other Mom's talked about. I had to search for a hospital that didn't search for my sons veins but gassed him first.
Realizing that my son has moments where he is exhausting to bring to these "simple" screenings. They aren't easy, so kudos to me and Mom's of other kids who have hemihypertrophy. Continue with these screenings that seem so pointless as we continue the journey praying that the wilm's tumor doesn't occur. The why and where for and what the heck that isn't what I heard, why is this doctor changing the protocol...I am frustrated once again. It's been one month and 10 days since his last screening. As I learn about wilms tumors from friends whose children DO NOT HAVE HEMIHYPERTROPHY. I am baffled by all they go through, and don't want to be in their shoes, so I continue to have my sons blood drawn and his kidney's looked at..... um WHY DID THEY CHANGE IT TO SIX MONTHS?? I still don't know but my son is healthy. He might not need surgery on his leg he might just live with a lift in one shoe for his entire life.
I am reading my rather pathetic blog.... I'll start and stop because something comes up. I've started looking at other Mom's of Hemihypertrophy kids who have older children and realize mine is also getting older.
I started facebook groups that divide into our child development blocks. When I first started looking at hemihypertrophy I was overwhelmed and the doctors didn't know what I was talking about. It wasn't until I really started searching and praying that I found the answers. The answers were found in other Mom's and children or adults with this condition. There aren't any books about hemihypertrophy but there are some about wilm's tumor.
My son was different from most in that I noticed the slight difference in my son's sizes but the pediatrician didn't until his 2 year appointment. By then I was thinking I was going crazier than normal. The MRI was scheduled but by then I was into the support groups full swing and they weren't running it the way the other Mom's talked about. I had to search for a hospital that didn't search for my sons veins but gassed him first.
Realizing that my son has moments where he is exhausting to bring to these "simple" screenings. They aren't easy, so kudos to me and Mom's of other kids who have hemihypertrophy. Continue with these screenings that seem so pointless as we continue the journey praying that the wilm's tumor doesn't occur. The why and where for and what the heck that isn't what I heard, why is this doctor changing the protocol...I am frustrated once again. It's been one month and 10 days since his last screening. As I learn about wilms tumors from friends whose children DO NOT HAVE HEMIHYPERTROPHY. I am baffled by all they go through, and don't want to be in their shoes, so I continue to have my sons blood drawn and his kidney's looked at..... um WHY DID THEY CHANGE IT TO SIX MONTHS?? I still don't know but my son is healthy. He might not need surgery on his leg he might just live with a lift in one shoe for his entire life.
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