Its been a week!
I told my friend Patty on the phone last night that I needed a valium! I've never even taken one! I have no idea what it even feels like! She just laughed at me, knowing that I just meant that I wish some fairy could come down and relieve all my stress.
Instead, I took a scalding hot bath with mineral salts and two tylenol for my aching head. It did help :)
Our day yesterday started out well. We had an appointment with our Special Needs nutritionist. We were so happy to find out that Jayce gained a whole pound in 6 weeks! And grew 1/8 of an inch! This is very good news. He's stayed at 28 lbs or under since we started seeing her 7 months ago. Whenever he loses weight, we start talking about pediasure-like supplements, so I am glad to have some good news for a change.
Then we went to the school that Jayce will be attending next year for a speech evaluation. I can't go into details because it wouldn't look very good for me to post cuss words about our particular school district workers on the internet. But believe me... I wish I could. Instead I'll probably end up venting on my attachment parenting board instead, hidden in a private forum. I'll suffice it to say that I am surrounded by idiots of the education system. I really do understand why so many people are choosing to homeschool in South Carolina. I really fear for my children's quality of education when I come into contact with certain individuals. Its so sad.
So, steaming and fuming, I came home long enough to eat lunch before packing Jayce back in the car to go get Jaina. While I was walking across the school yard to pick her up, I connected with Jayce's former ST/feeding therapist on my cell phone. Unfortunately, that call lasted about 20 minutes. It was extremely helpful, but poor Jaina was having a very hard time being patient. She did so well and I am extremely proud of her. She couldn't wait to tell me about her day at school but was able to keep it in until I got off the phone.
Then it was off to my mom's work at the arts center. She had agreed to let Jaina come do art while I took Jayce to his genetics appointment.
Ah. The genetics appointment. The real reason my day ended with me wanting a valium.
The geneticist and his assistant (whatever her title was, she handled all the paper work) were extremely nice. The geneticist had a laptop in the room and let Jayce watch him work on it, much to Jayce's delight. I gave a complete family history and answered all their questions.
One thing that they confirmed was Jayce's poor muscle tone. Our OT at the hospital suggested the same thing. He also said this may be why Jayce had such a poor time learning to latch on and suck in the beginning (even though he was full term) and why he continues to be plagued with GERD (reflux). Most babies outgrow infant reflux by the time they learn to walk. Instead, we have to keep upping Jayce's dose to match his weight.
Another thing they were concerned with was a little more unsettling. Jayce shakes his head sometimes for no reason. I was told it was considered a self-stim by his old ST. However, they said that it could be related to mini-seizures, especially since he also has the symptom of "checking out" as I call it, where he stares off into space and its hard to get his attention back. I thought that was just a normal characteristic of autism. With both of those symptoms together, they recommend that Jayce see a neurologist. We'll have to look into that when we receive secondary insurance.
Then, last but not least, they had to draw two vials of blood for the genetic testing. The first vein didn't do so well, so they had to stick him twice. It was a night mare. I never feel so bad as a parent as I do when I am watching (or in this case, helping) my child go through pain. He kept screaming "ITS OKAY!" through his tears because that's what I usually say when he's upset. He was trying to calm himself down. It took way longer than it should have. But its done and over.
Our local genetics center is only set up to test for a couple genetic markers, although new research suggests that there are 27 genes that could be related to autism. He will also be tested for Fragile X syndrome.
Instead, I took a scalding hot bath with mineral salts and two tylenol for my aching head. It did help :)
Our day yesterday started out well. We had an appointment with our Special Needs nutritionist. We were so happy to find out that Jayce gained a whole pound in 6 weeks! And grew 1/8 of an inch! This is very good news. He's stayed at 28 lbs or under since we started seeing her 7 months ago. Whenever he loses weight, we start talking about pediasure-like supplements, so I am glad to have some good news for a change.
Then we went to the school that Jayce will be attending next year for a speech evaluation. I can't go into details because it wouldn't look very good for me to post cuss words about our particular school district workers on the internet. But believe me... I wish I could. Instead I'll probably end up venting on my attachment parenting board instead, hidden in a private forum. I'll suffice it to say that I am surrounded by idiots of the education system. I really do understand why so many people are choosing to homeschool in South Carolina. I really fear for my children's quality of education when I come into contact with certain individuals. Its so sad.
So, steaming and fuming, I came home long enough to eat lunch before packing Jayce back in the car to go get Jaina. While I was walking across the school yard to pick her up, I connected with Jayce's former ST/feeding therapist on my cell phone. Unfortunately, that call lasted about 20 minutes. It was extremely helpful, but poor Jaina was having a very hard time being patient. She did so well and I am extremely proud of her. She couldn't wait to tell me about her day at school but was able to keep it in until I got off the phone.
Then it was off to my mom's work at the arts center. She had agreed to let Jaina come do art while I took Jayce to his genetics appointment.
Ah. The genetics appointment. The real reason my day ended with me wanting a valium.
The geneticist and his assistant (whatever her title was, she handled all the paper work) were extremely nice. The geneticist had a laptop in the room and let Jayce watch him work on it, much to Jayce's delight. I gave a complete family history and answered all their questions.
One thing that they confirmed was Jayce's poor muscle tone. Our OT at the hospital suggested the same thing. He also said this may be why Jayce had such a poor time learning to latch on and suck in the beginning (even though he was full term) and why he continues to be plagued with GERD (reflux). Most babies outgrow infant reflux by the time they learn to walk. Instead, we have to keep upping Jayce's dose to match his weight.
Another thing they were concerned with was a little more unsettling. Jayce shakes his head sometimes for no reason. I was told it was considered a self-stim by his old ST. However, they said that it could be related to mini-seizures, especially since he also has the symptom of "checking out" as I call it, where he stares off into space and its hard to get his attention back. I thought that was just a normal characteristic of autism. With both of those symptoms together, they recommend that Jayce see a neurologist. We'll have to look into that when we receive secondary insurance.
Then, last but not least, they had to draw two vials of blood for the genetic testing. The first vein didn't do so well, so they had to stick him twice. It was a night mare. I never feel so bad as a parent as I do when I am watching (or in this case, helping) my child go through pain. He kept screaming "ITS OKAY!" through his tears because that's what I usually say when he's upset. He was trying to calm himself down. It took way longer than it should have. But its done and over.
Our local genetics center is only set up to test for a couple genetic markers, although new research suggests that there are 27 genes that could be related to autism. He will also be tested for Fragile X syndrome.
I was just thinking last night about Fragile X. I think if you eliminate other possibilities like that (mental retardation, etc.) the school district might be more apt to accept his diagnosis (autism).
ReplyDeleteRhetta got her diagnosis (autism) from her neurologist after testing for all the other stuff he recommended testing for. The gal from the school here was at the meeting when he told us. I invited them all, all of her "people", to sit and hear what he said. Only then did they accept it. I am just remembering this now. (d'oh)
What a scary thought abotu the possible seizures. I'm sure he will be safe and healthy in the end though. (((hugs)))
ReplyDeleteAlso love the picasa slideshow. I may just swipe the idea from you. ;)
Seizures. Oh gosh, let's not even think of that. I pray it's nothing.
ReplyDeleteI commend Jaina for being so patient, she is such a great little girl, just like her mom.
I am sorry you have to go thru such terrible BS with the schools, hospitals etc. I hate it when Justin was in the ER and they had to get blood and put an IV in, its torture for the children.
You are going thru alot, it seems you need to clear your head, a long walk or jog always does it for me.
A Valium would make you "loopy" but it won't clear your mind like you need.
For now, take it day by day and focus on the positive and the new camera you will be getting and Jaina's birthday. Remember you have such a loving Mom and supporting family and most of all you have lots of friends that love and support you too :)
Feel free to "cuss and vent" on my blog anytime, since its password protected, you will be safe over there.
Ohhh Jess.. what a journey you have had so far. I am so proud of you, you keep on going and doing what is best. Seizures are a scary thought but if you can catch them now instead of later it will be better. I am thinking about you! Drawling blood is awful for kids :( I am sorry he had to go through that.. poor guy.
ReplyDeleteAnd yay for Jaina for being patient, that's hard for a little girl!