All about AJ

OK so I haven't grasped the concept of this having to actually WRITE on the blog thing. Yet I know that I should. So here is what I am going to do. Many of you have facebook and are probably wondering what yesterday was about. So here we GO, its kinda a long one, but at least I won't have to explain it sooo much.

As you all know we have thought for years that AJ has had some type of learning problem, but never sure what it was. Now most doctors prefer to wait until they are five to diagnose. So on AJ's 5th Birthday we got referred to a Neurologist, we went and saw him at his Belleville office a few weeks later. He said that he wanted to give AJ a year to mature since he was doing good in the small class that he was in and then see how his progress was. I was totally OK with that knowing that he was going to do well in his pre-school class.

So then the next school year rolls around, so I call the doctor to make an appt. Now you would think that I could have seen how this was going to turn out with the problems I had with the appt. So I call and make an appt with the doctor for a few days before school starts. I told the nurse that we had seen the doctor the year before at the Belleville office. No big deal right, yeah right. The day before our appt they called to cancel, apparently they scheduled with the wrong doctor, and the correct doctor doesn't see anyone out of the Belleville Office anymore. SO we re-schedule for the first full day of school at St. Luke's first thing in the AM. So now I have never been to St Luke's and I tell them that, they say no big deal. So the day of the appt I drive over and am running late and then get "temporarily misplaced" aka lost. So I start calling the office to ask for help and let them know we are running behind. I called for 15 minutes, letting the phone ring for 3 to 4 minutes at a time. When I do finally figure it out on my own and get there I tell them about the call, they say oh it's cause our phones don't turn on till after 9am. AJ's appt was scheduled for 8:30. So here I am not really happy to start with when the doctor walks in. He is looking at all of AJ's IEP information that I got from the teachers that I gave to the nurse. He asks AJ 2 questions never looking up from his medical record. As a matter of fact he never even touched AJ, ad decided to see him again in a year. Needless to say I wasn't happy. So we decided to find a new neurologist.

That is when Tracie was able to get AJ an appt with Hanna's doctor, Dr. Yamada. So we saw him back in March. Dr. Yamada wanted to run some blood, and urine tests. After about 3 weeks he called and said that several of AJ's amino acids were higher than he liked. So he wanted to do the blood work again, but on an empty stomach. So we did that in April. Dr. Yamada came back and said that he still had a high Glycine, amino acid, level. He said that it's not really high but high enough to cause some concern. You see high Glycine levels is attributed to glycine encephalopathy, a genetic disorder that would explain his developmental delays, but is also known to cause seizures. Now IF AJ does have this he doesn't have high levels so would have a mild version. That being said Dr. Yamada wants to measure the glycine level in his spinal fluid, hence the spinal tap. Dr. Yamada said since we already have him knocked out for that lets do a cat scan. All went really well yesterday and should get the results in about 2 to 3 weeks. I will keep you all posted.

Now for those of you who don't already know this here is some great news. AJ did AWESOME in school this past year. At his last IEP mtg this year we decided that he will attend regular classes at ROOSEVELT next year. We are really excited that we get to be in the same school as our big brother. In his IQ testig he scored really high average or above average for almost everything. I am very proud of how smart both my boys are.