Hemihypertrophy Nathan's Journey

Routine for Nathan

2014-05-22T05:30:00.001-07:00

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.

2014-02-05T20:47:00.001-08:00

http://www.youtube.com/watch?v=B98ycm5kH0E

Happy 5th Birthday!!

2014-02-05T20:45:00.002-08:00

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

Nate is almost 5 years old!!

2014-01-13T05:30:00.001-08:00

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.

Nate's pretty Amazing

2013-12-28T06:48:00.001-08:00

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!!!

I also homeschool so making money on the side or attempting to get stuff for kiddos.

2013-12-28T06:37:00.003-08:00

Dear Moms of Hemihypertrophy kids,

2013-11-16T07:35:00.001-08:00

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.

Learning Naturally

2013-11-10T07:00:00.003-08:00

I joined Young Living Essential Oils and then I unjoined.

https://www.facebook.com/pages/Learning-Naturally/448437555265955

I do hate selling things but find I enjoy essential oils, young living is a questionable company in that when I did the research I found that they are overpriced and the others work just as well, if not better for much cheaper. I also found the owner listed under Quacks. You can find it on my page in Facebook.

Screening

2013-10-06T16:25:00.000-07:00

I took Nathan for his bloodwork and sonogram and the nurse practitioner said to call back in April for his next appointment wow they have it for in six months. And he'll see the leg doctor again in a year.

This is different from what I have heard for screening, I'll double check if this is correct on the support group in facebook and there is also a yahoo group.

Preschool choices Made

2013-10-06T16:20:00.000-07:00

Nathan went to preschool last year for a brief time. Long enough that I know for him it is where he should be for 1/2 a day. As a former Preschool teacher, all day is a tad too long for any child. Mom time is so important, but with this some what hyperactive, busy child, learning to sit and listen to someone else works for me. Maybe I am past the age of repeating twenty times the same Hickory Dickory Dock....with the same excitement I showed when I did teach school.

I was going.... never finished this post and found it in the drafts.

Dealing with Communication

2013-10-06T16:19:00.001-07:00

I started this but didn't write anything. Conversation with Nathan is different from other kids, but at this point it's so much better than it was that I am happy.

Sonogram and Bloodwork

2013-10-06T16:18:00.000-07:00

It's that time again, I think, yeesh, does anyone pay attention to when the last sonogram was. I have forgotten.

Another leg length doc visit, another blood test, another sonogram, and pediatrician

2013-10-06T16:15:00.000-07:00

Melt my heart little boy, melt my heart. Our MCG journey started at 9:15....whew even after a smoothy you are one strong, grouchy, boy. You didn't want them touching your legs or looking at you run. A guy got your borrowed wagon (they have these wonderful wagons that you love at MCG....and you ran after him. The doctor said he'd see you in a year, and that you will probably end up with a 2 inch difference between the legs. Freeze the growth plate, no he said this would be permanent and that he was going to screw it most likely to the bone and then it could be reversed still, doing the most non-evasive procedure but that is years away.

Next it's time for a sonogram, yeesh and "Mom, I want my smoothie" so we went back to the van and got it, which you finished filling your bladder (which I now know is fine for the scan and the bloodwork) .....oh man you pitched a fit at the sonogram gel..... yikes, one strong kid.

After this I was exhausted but it was time for the bloodwork. UGH two nurses plus me, but you did great and we got it done on the first try (these nurses know how to do it.)

Another smoothie wanted so after all this I felt you deserved it. So we got a smoothie and "Mom, pretzel." I got you one but put it in the bag and to the car we went.

Now to melt my heart, "Mom, a pretzel this makes me happy. Mom, thank you for taking me to the city!!"

Lunch and a visit to the pediatrician. You did great here also. Then a moment of panic as the nurse calls but she just wanted to let me know your sonograms are good. A long day but in the end I know you are okay. With all your quirks and hey autism they say, but whatever it is, I call it NIMS Nathan Isaiah Mullens Syndrome (and no nurse, I don't feel the need to go back to the geneticist to have him draw more blood and try to figure out what specifically Nate has. I know he has hemihypertrophy and he'll be eight soon enough and ummm that is enough for now.

Melt my heart Nate, and yes, it's time for your bath.

The Frustration of being Mom to Hemihypertrophy

2013-09-20T05:12:00.002-07:00

The fact is my son has hemihypertrophy and it is visible to my eye, so I know he needs special doctors to treat this, but the selfish side of not wanting to constantly monitor everything is there, I need to make these appointments more enjoyable for me. I am going to do this, yes I have to bring him but he and I are going to have a special day. We have to do this so what can I do to make it awesome. October 4th snuck up on me and I didn't have his yearly appointment on the calendar but it's time to focus on the leg and when it needs to be lengthened he's almost 5 years old and I know he could shoot up 4 inches a year, I did. I was one of those tiny kids for a long time, I remember when I finally got to 55 pounds in 5th grade but then I shot up in one year 4 inches. I don't know how fast or quickly Nate will grow but I know his one leg needs to be lengthened and no homeopathic doctor is going to be able to do this....then again one never knows if one doesn't know about something, what is going on. Sigh. Chemically be able to do this is what the guy from Emory said. For now I am trying to have everything taken care of at MCG.

Now to call his pediatrician.

Four and a half years old WOW

2013-09-15T19:37:00.000-07:00

And so I have neglected your blog, it's been hectic and I forget to write. I keep track of somethings on your facebook page. Your okay, your growing and I need to take you to the doctors again. Speech is no longer anything but your family making you say things and you are doing incredibly well.

I'm a bit concerned about the difference in leg lengths and it's time for another sonogram, and blood work and your well check for a 4 year old that should of been done in August.... behind I was for your 3rd and now more behind or ahead for your 4th year well check. Time for a long week in Augusta.

You've come so far in one year!!!

2013-04-26T00:52:00.003-07:00

Looking back a year ago. http://wife-mom2ddand3ds.blogspot.com/2012_04_01_archive.html Last year I remember crying a lot and wondering if we would ever talk to one another and how I would know you. This year, I know what you want, and what color. You want Lollies and you want the orange one as your first choice.

I have so enjoyed four days with just you and me and a bit of your Dad, but for the most part he's been busy working. I've been busy watching you and smiling, and crying a few happy tears. For the most part, you are just like any other child. It was so much fun watching and listening to other parents at Disneyworld. There is so much more of you to know, but I got to see you as you for four days. No interference from other siblings and I think this is where I need to step back and realize how important this one on one time is to your well being and my comprehending you as a person.

A weekly trip to a new place is important for your health. New places, and new situations and watching how your mind works. It's been amazing to watch you. And Dawn was so correct in music being a key element to your learning. Reflecting on last year and reading what you were doing then verses how far you have come. WOW!!!

Autism Speaks

2013-03-11T10:49:00.001-07:00

Nathan speaks....sometimes he doesn't shut-up. He sings, he talks, he tells you somethings but he isn't a normal 4 year old, or maybe he is....he does his own thing. Autistic, I'm not sure...people who have autistic children look at me like I'm nuts when I tell them his diagnosis is autism. I agree this kid isn't autistic, he's quirky and probably somewhere on the chart...but it is very different and yet similar at times depending on his mood.

He plays with toys, he sleeps through the night, he's potty trained, he is very naughty. He pretends, he dances, he acts out stories, he has very good manners. Thank-you Peter. Please...

"Jump, jump, weee." He says as he jumps off the couch. "abre'!!" "NO, Peter!!" "A treasure chest, hello Mommy."

when asked to bring something to the trash, "NO." When he doesn't want to do something he fakes snores.

Whatever but he's Nate. He's four and he's growing up.

Strong willed and annoying

2013-03-11T05:22:00.002-07:00

Interference.... I was going for a pass and ended up getting tackled. There are days when I can plan my life and then something happens and I end up with so much stress from this child...complicated by other siblings.

I booked my oldest child to watch her younger brother. She did but then for some odd reason felt like coming to watch her younger siblings and ruined my day. I get so annoyed at the younger child who lacks the ability to sit through any performance but the older siblings seem to not think.

I've gotten to the point where I don't want him coming anywhere with me if I want to enjoy something. A movie, forget it. At age 4 he isn't like other children and lacks the ability to sit still, not make a scene.

I wonder how other parents with special needs children handle them. He can seem so normal that you forget how much of a handful he can be in public. At home he is fine. He watches too much television, but is happy doing that, playing with legos.

Trying to figure out what is best for him. Intense therapy....I don't see the point. He has a normal attention span of a 3 year old. (yes he is 4...) I don't see the point in driving 30 minutes one way, and spending 30 minutes playing with some toy and saying the names of the items, driving 30 minutes home.

He's improving, it is just becoming more obvious that something is wrong. "He doesn't act like a four year old." an observation by one of his 10 year old brother's friends. No, he doesn't. He won't talk to you much. He's quieter but if he wants something or wants to behave a certain way, expect it to happen or an extreme moment where he is so annoying you wonder, is it worth it....yes, because maybe the next time he won't do it.

Learning to Share

2013-02-28T19:21:00.000-08:00

co-op...it's interesting. You are with 11 other kids. I forgot the break through I had with you sharing...I was so shocked. You had your cars/trucks lined up and pitched a fit....so I removed you from the room and we spent some time sitting in a corner. It took a while but you wanted to go back to the other room.

"here, you go." I was shocked, as you handed the toy to Abram and continued to play. The other teacher looked at me and said, it's like another child. I don't understand why or when, but there are days where you take a huge leap forward and this was a day you turned a corner.

Going Out to Eat

2013-02-10T17:42:00.002-08:00

I don't like taking you out to eat. Often you are very difficult but today you were better behaved. Maybe because it was a buffet. You sat and ate rice. You got out of your seat once and ran around the restaurant but for the most part it was a success. It's the little things that make my day.

And Now You Are Four

2013-02-08T04:45:00.001-08:00

Graduating from the 3 year old group. Are you ready? In many ways yes, you are ready to be four years old. You know your colors, many shapes, many words, but I wonder how far you will go. Octagon, you are so very cute when you say this. And last night as we said prayers together I noticed you can now clearly say so many names, Grandpa is one you struggle with.

You have grown up so much. You are drawing more, wish you would stay off the walls, your Dad gets upset when you color there. I was going to get you this awesome magnetic board that you cold also write on but then lost the sale on the yardsale site.

Your siblings are teaching you so much. I love watching them with you. You make them smile, and bring so much joy, and yes at times you are so annoying and you make the house messy with tons of toys that you struggle to clean up and constantly need help with.

I wish I knew if you should have a lift or not, the doctor says no, but you stand with your leg to the side. I am so thankful for other Mom's that have children with hemihypertrophy, I may only meet them online but it is enough to know I am not alone. A different journey than I would of chosen, but one that I would chose to take.

Happy 4th Birthday!!

2013-02-05T05:09:00.001-08:00

Time Flies!!!

Speech Bill

2013-01-23T15:54:00.002-08:00

Well, thank-you so much for that $300 bill for speech. Should of stopped going, insurance stopped paying and we got stuck with a bill.

Dinner Time

2013-01-03T15:46:00.001-08:00

I am learning to prep my 3 year old son for dinner time. Take away the ipad early, but there is a problem. He needs to take a nap, but I don't have time to make him take a nap, nor will he, so I let him stay up and then he crashed early 6:30.

He didn't eat much dinner, he wanted peanut butter on a spoon around 4pm, and that probably gave him enough calories. He ate very little at dinner. He cries, fussing from being tired around this time a day. Last I saw him he had stolen a lollipop from a siblings stash and was happily running away from them. Next thing I know he's asleep.

Almost 4 years old

2012-12-11T06:21:00.000-08:00

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.