Nathan's Feet

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.

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

A group bonded by a common identity, we are the parents or the person with hemihypertrophy, may it never become as well known as breast cancer, autism....

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.

My little guy just doesn't enjoy these visits. Doesn't matter what you tell him, he cries when they weigh him and when they measure, when they go near him. This is the first time he's had photos taken at the doctors, she tried to get him to say cheese, he just freaked out a bit. What can I say, the kid sees these places and realizes this is not Disneyland, he remembers needles and annoying people bugging him, he does not cooperate for anyone but the Geneticist Councilor, he gave her hugs in the end.

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.

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.

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.

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.