Our Journey to the Answer

This post is super long so I understand if you never make it to the end.

It was 5 years ago when we were told Daniel wasn't where he should be, socially, and with his motor skills. However laws prevented teachers from telling what I should do in terms of getting help.They didn't even suggest I should talk to a doctor, nothing. A year went by with me thinking He is how he is and there is nothing I can do, the pediatrician said he would catch up, that every child is different( isn't that what we always hear, don't compare your child to others). Now he is first grade, grandmas are noticing the way he moves isn't normal, we didn't see it because it happened so gradually. He was even making progress with hand writing, pedaling his bike finally, and other things. I voiced my concerns to the doctor and they were brushed away as if they were nothing, another year goes by. I take a child development class and realize things are worse than I thought and not only is it a physical problem, my child shows an overwhelming amount of signs for Autism. How could he be almost 8 and diagnosed? I always thought Autism was when you child is nonverbal, I had never heard of the other types. Now I know I need to fight for him. 2nd grade starts and it is becoming very obvious there is something wrong, but no one listens.I ask for screenings, the school physiologist says he isn't autistic, I know she's wrong. A five min. observation isn't going to tell you all you need to know. Another year goes by, I switch doctors he gives me what I want a referral to specialists. 5 months go by waiting to get in. 5 precious months, waiting. The neurologist runs test for everything he can think of. After 12 hours of testing The Neuro-psychologist diagnoses him with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) It is in fact on the Autism Spectrum. That whole year we continued doing tests, and eventually ended up down in Salt Lake at Primary Children's at a Metabolic Geneticist. Everything keeps coming back normal. We move to Texas and another year has gone by..... We wait another 5 months to get into the Metabolic Geneticist here, everything is still coming back normal. All the while he his losing fine and gross motor skills. And there is nothing I can do about it, I can't stop it, teachers want answers from me and I don't have any to give. His physical therapist gets him a walker so he can walk. This year he lost his reflexes in his knees in a 3 month period, we replaced his bunk bed because he could climb up and down and refused to sleep on the bottom. He used to be able to make it around the house unassisted. He now uses his walker whenever he has to go anywhere. He can't pedal his bike, we never took off his training wheels. He can run and play like his bother and sister. People judge me because he watches T.V. and plays video games. But what else is a child supposed to do when he can't run and play? When he can't play with normal toys because if he sits on the floor he can't get up on his own. Sometimes it takes all his energy just to get dressed by himself. Next month another year will have passed. He is my sweet little boy who makes me laugh, has the sweetest spirit and a great sense of humor. He is a comic book encyclopedia, an expert on star wars, and many other topics. He has the memory of an elephant and you can't promise him things you aren't prepared to give/do, because he will remember and won't let you forget. I watch him struggle everyday with all the little things that you and I find simple and easy. I wish I could take his place, make things easy, or fix him, but I know I can't. God put him here in this body for a reason, it's not my fight to fight. He is being shaped into a wonderful, strong person. In 18 days I will get test results telling me why he is the way he is. I have been waiting for this answer for at least 3 years, and now knowing that it's coming, wonder if I am truly ready?

Nathan Broke His Arm

OK so a few weeks ago I was in the ER with my friend, her little boy fell and cracked his scull. I made the comment I was surprised Nathan hadn't broke anything yet. 3 days later Nathan and Emma were putting pillows on the trampoline to sleep outside on it. The enclosure wasn't zipped and Emma hit Nate through the hole. He fell and Broke his arm. Beau didn't think anything was wrong, we iced it and he went to sleep that night. Sunday it still hurt I took him home from church early, Beau still didn't want to pay for the Emergency room insisting there was nothing wrong, but Nate wasn't using his arm at all. Monday morning I took him to our pediatrician and she said sure enough she believed it was fractured and would need X-Rays. We then went and got X-Rays, and took them home on a disc. When I loaded it on the computer I could see the break and then had to wait 2 hours for the doctor to call me and tell me what I already knew. We then had to drive 30 min. down to the pediatric hospital to get a splint and a sling in the ER.

After 3 hours they took care of us and sent us home, telling us to call another doctor to get the cast in a few days. We went and did that today. He has this cast for the next 2 weeks and then will get a shorter water proof cast. He will have that one for 3 weeks and then we will take more X-Rays and make sure it's healed if it isn't we will keep it on longer. If it is he will then get a temporary cast for another couple of weeks. Moral of the story be glad you don't have kids who break things because I am sure this is not our last broken bone. It is so hard to keep him from climbing and now he can't swim for 2 weeks and ride his bike for more than a month. And to top it all off, probably won't be able to ride rides at 6 Flags if we go. We might just stay home instead of torturer him.

I think it's harder on me than him now that he has his real cast his arm doesn't hurt as much and he can move it a little more.

crafts

here are the links to what I have been doing!
http://www.froggy-flipflops.blogspot.com/2012/02/dress-for-e.html
http://www.froggy-flipflops.blogspot.com/2012/02/t-shirt-refashion.html
http://www.froggy-flipflops.blogspot.com/2012/02/messenger-bag-for-reverse-walker.html
http://www.froggy-flipflops.blogspot.com/2012/02/easiest-dress-i-ever-made.html

Daniel and genetics

Ok so our last visit to the genetics doctor went really well. Dr. Gibson spent 2.5 hours with us going over everything. Stuff from what the last doctor looked for to family history to what he was going to look for and why and then gave Daniel a complete physical. He seems like he knows what he is doing and I have heard great things about him. The last set of tests results have come back with one positive result for Fragile X, I had to go give blood to confirm, we will those results in about 3 weeks. I will keep everyone updated. I'm not sure what to think, a lot of it fits and some of it doesn't. All the information I have gathered I read by searching for it on the internet. And even though I'm not sure that's what it is, I do feel like we are one step closer to figuring out this puzzle! And I am relieved that I was the one who had to be poked and not him, he's been poked too many times.
He also has been using a reverse walker to get around school, church and when we go out places and it is helping so much! He loves it and he can go pretty fast now, plus when going down ramps he lifts his feet and rolls, which is scary for me, but fun for him. He is such a special soul, I can't believe I get to be his mom. Well I think that's about it for now!

A Little Update

So I have decided to finish school online and go to be an Elementary School teacher. I have trying to decide for years. I love little kids and if I had to work I would want to be able to only work while my kids are in school. I am excited to be starting school again, I have been feeling a bit lost these last few months. I start march 1st and I am really excited!

Emma Lost her first tooth.

Since then she has lost her second tooth but here is her toothy smile!

Halloween!