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!!!

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.

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.

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.

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.

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.

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.

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.