Project Lifesaver!!

On December 22 an officer from the Stafford County Sheriff's Department came and now Brady is all set up with Project Lifesaver. PLS is an amazing tool and has saved many lives. I'm thankful we have such technology to keep Brady safe. We had to pay $200 for the transmitter and then $25 a month for a new battery. Most counties surrounding us offer it for free but our county doesn't get very many sponsers so we have to pay. This is a trend with Stafford County in general.

He was mad at me the first day for putting it on him. He asked us to take it off many times by holding his ankle up. We told him no and explained that he had to wear it for his safety. He hasn't asked since then.

Colonoscopy and Endoscopy scheduled

January 15 Brady will have his second scope.

Dr. Hart is concerned with Brady's poor growth. Currently Brady weighs 37 pds which is in the 10th percentile. He continually moves down in percentiles. He defenitely has malabsorption issues. He is concerned as I am about his pancreas. He is going to do a pancreatic enzyme stimulation by administering Secretin during the scope. I am anxious to see if Brady does in fact have pancreatic insufficiency. We'll accomplish this by aspirating the intestinal contents and sending them to an outside lab to assess the function and adequacy of his pancreatic enzymes. Brady often has moderate amounts of fat in his stool indicating he's not making enough lipase enzymes. We'll see.

Brady started the GFCF diet March 21, 2006....nearly four years ago. Starting this August we started allowing him to have gluten and casein with enzymes. I am afraid that he's not able to tolerate them even with enzymes. Dr. Hart agreed much to my dismay.

I'm anxious for this procedure.

Seriously?!

I want to blog more often I just often lack the energy but with what I'm about to discuss I might have some early morning time to start blogging.

I'll get to his lab results in a minute but first let me discuss our newest issue. Brady has decided about 1-2 times a week to get up early. Like WAY early. This morning he woke at 2:45 am. So I've been up for a couple hours already and it's only five. -sigh- I'm so tired. It's really going to hurt later. I'm actually scared this isn't a temporary thing. I can't imagine doing this week after week.

Labs...EEG was normal. The mainstream docs called his MRI normal despite some mild abnormalities. Dr. Mumper however isn't going to look over the abnormalities. She things a SPECT scan would be a good idea to see the brain function. We've got to keep looking!

Loving the neurologist!!

Finally a mainstream doctor who wants to find out what the hell is going on with Brady! She said it's not ok that he lost his language and we have to turn all stones to see if we can find why.

She ordered....
an MRI
24 hour video EEG
full metabolic workup
neurogeneticist

I am very interested to see the results. My biggest fear is that they will all be normal. What the heck do you do with normal? You can fix normal. His EEG is scheduled for June 1.

Could it be seizures?

Could seizures be the reason Brady is unable to talk anymore? I need to know why he's losing his ability to speak.

Brief history. As a baby Brady babbled but never developed any words. As his autism became more apparent his babbling disappeared. He started ABA at 23 months old. By 27 months he said his first word "go". Over the course of the next year (2-3 years old) he accumulated 55 spoken words. Over the course of the next year (3-4 years) he slowly started losing those words he worked so hard for. Here we are with his 5th birthday just 28 days away and Brady is unable to speak a single word. In fact he can only replicate one sound now "eeeeee".

You would think this loss of language would have someone other than his family up in arms. You'd think they'd want to get to the bottom of it and find out why he's losing all ability to speak. The sad reality is we're the only ones who seem concerned. Everyone else is perfectly content to use other methods of communicating. For now those methods are necessary but I think panic and urgency should accompany them.

Monday I have an appt with Brady's pediatrician to dicuss this complete and utter loss of language. It's NOT normal for children with autism to lose the ability to speak at all. I want to do another EEG to rule out seizures. It's been three years now. What is going on with him?

Tag on airplane!

Brady likes playing with his Tag learning system. He particularly loves the ChickaChickaBoomBoom book because of all the letters. See for yourself.

Brady loves TMX Elmo!

Sorry it's sideways! He loves this Elmo. He plays it over and over again.

Brady playing some b-ball with his Daddy!

It's here! It's here!!!!

Brady's speech generating device came today. We've been waiting for this for two months and we are soooooooooo excited. Now the device is more sophisticated than I thought and I'm having difficulty setting it up. Now I know why the speech path wanted several followup visits to help set it up.

It's just so cool and small. I thought it would be nice to name it. It'll make it easier to reference it and besides that it's going to be Brady's sidekick. It's going to go everywhere he does. I originally thought I'd name it "Ben" but "Chip" is really good too. Hmmmmm.

Sadie and disruptive prisms.

Sadie loves wearing Brady's disruptive prisms. They look so freaken funny on her too!

You can see how much he likes it and how good he is. He does get upset near the end of the video because he was tired. I think it's also worth noting how much sound he makes even though he is still unable to talk. He wants to talk so badly.

Brady recently received a new touch-screen computer through his Medicaid Waiver. This computer has been amazing for him. He really connects with it and learns so much more quickly from it than from people. Since he got it he's mastered at least 30 words!! That's huge for him. Also in addition to the computer he got six software packages and the nice desk from Lakeshore Learning. The desk is great because we can adjust the height to make it perfect for him. Isn't it awesome?

Congratulations Brady!
You have mastered First Words!!

Potty training kicked my butt!!

Today was the start of a new year and the day we started potty training Brady. Now we knew that it wasn't going to be easy but I think secretly we both hoped it would be. Like he was going to pull a rabbit out of his hat which would be pee in the potty, right?

Well let me tell you, I stared at my son's penis way more than I care to admit today. I started him off in our bathroom that I scrubbed last night. I knew he was going to touch a lot of surfaces and it wigged me out. I cleaned it up and then brought in all his favorite things. I put down his playrug, his toys, his CD player, his DVD player, food, and lots of drinks. When he woke we gave him juice and put him on the potty. He sat quite well for a long time but then I really had to work to keep him happy and sitting. Finally after an hour and seven minutes he peed. I praised like crazy and reinforced him with his DVD player. He took it, layed on my bed and proceeded to pee like crazy. Super. What I've learned today is Brady pees a very tiny amount before he let's the big pee go.

So back on the potty he goes. Twenty minutes later he POOPED on the potty. He had been passing gas like crazy. I smelled the awful smell that is his toxic poop and I checked. He had pooped but he had never given any outward signs of it leading me to believe that at this point he doesn't have real control over his bowel movements. If you've followed my blog then you know he had diarrhea issues we're working on. So potty training is going to be tough.

I won't give you all the details but let's leave it at he peed more in his underwear and on my floor than he did in the potty. We'll leave it at we watched the kid's penis like a hawk so that we could swoop him up and run or praise him like crazy and it has exhausted the crap out of us.

I was surprised and happy that Robin (Brady's Daddy) was more patient with him than I was.

We're hoping tomorrow goes better. Please God!