Asher's neuropsych evaluation was about what I expected...I don't have a written report, as it was just the parent conference today.

Asher's IQ for three areas was between 92-99, so all fine there.

He's below grade level in a few areas...

One area I remember her saying was hard for him was a shopping list....he was supposed to remember a shopping list, and then even cluster the items in the list into categories (i.e. food, clothes, etc). Then after the first shopping list, he had to remember another one....yeah, that didn't go well.... She said that is a sign that he needs to learn math, take a break, work on reading, take a break, and separate each subject like that in order to process.

Memory even looked good, however, a test that has him look at faces and then asks which faces he remembers seeing was very difficult for him. I asked her if it could be due to vision problems (as she said a similar test that had dots was not as challenging as the faces).

She did notice testing anxiety.

She did not see attention problems.

She noticed he is still shy, but he has matured and had no problem having a different gal in the room performing the tests, even when she left.

She highly recommends I do a 504 plan....even just to address his loss of vision.

Next testing is in two years, I think, and she said she only tests ages 2-5 (she did Asher's as a favor and because she wanted to see how he was doing, she said), so we will be with a different doctor next time.

We should have the full report by the beginning of the school year, early August.

Today around 12:15pm Asher was sent to the school nurse by his teacher. She noticed his hands shaking while reading a book. They had recently come in from recess after lunch. The nurse looked him over, said his eyes were fine and he was otherwise fine, and sent him back to class. She said it could be low blood sugar but she didn't think so because he had just had lunch. I think it was fatigue, most likely, after reading these two websites.

http://wiki.answers.com/Q/Why_do_your_hands_tremble_after_exercise

http://www.merck.com/mmhe/sec06/ch091/ch091c.html

4/20 - talked to Asher's teacher tonight - she said she hasn't seen anymore tremors - she did tell me it was in one hand, she thinks, as he was holding a book with one hand and pointing to a word with his other hand and the whole book was shaking - I'm thinking I don't need to worry unless I see it happen again....

Before I forget, Asher complained his ankle hurt last week.

He had also fallen twice, two days in a row, at school during recess, and scuffed his knees and elbows to bleeding, both days. One day he had jeans on, and still bled through, the next day shorts. When he got home, the first day, he said to me, "But I didn't fall on my face!" Yes! This must be a very good sign....that he can catch himself now on a fall....he has ALWAYS landed on his face/head during his falls (following treatment).

He has continued to walk on his tip toes A LOT, even while wearing shoes, not just bare foot. It used to be that I really only noticed after he was tired, after a full day of school or something, but I seem to notice it whenever now....going to try to keep a better record of it....

Oncology and PT has never addressed this, no matter how many times I have told them or asked about it.

Now I am wonder if he has Neuropathy....

Just started reading about it....esp. this link:

http://csn.cancer.org/node/149876

I may take him to a foot doctor I went to for my flat feet / pain....

4/15 - first thing in the morning, sitting at the kitchen table, Asher says, "My ankle hurts."

4/17 - doing some reading on the toe walking....have I not looked this up on the internet before? Wow there is a load of info, most of which is not very promising, in that the toe walking may be permanent....torticollis....cerebral palsy....Sensory Integration Disorder....idiopathic toe walking....

Interesting though, in my reading, from a toe walker herself, regarding her ankles, "My parents tell me that I've been walking on my toes since I was a baby, way back when I used a walker. I am now fifteen....I sometimes experience sore ankles, but those can be relieved with ankle tensor bandages. I did experience a "clicking" in my ankles when I was eleven, but the doctor said that it was just a tendon clicking against a bone. I am actually faster when I am walking on my toes, and I feel this is my natural way of walking."

In all my reading, I did not find anyone's child with a past brain tumor, chemotherapy, and toe walking....

In my opinion, and I'm not sure I'm allowed an opinion since I'm not a doctor, but I'm still thinking his toe walking is related to his control of his balance. He wore those foot braces back when he was in the hospital and not walking much, and since I wasn't there when he got them (Scott was) I really have no idea WHY he got them, or if they knew he had a tendon problem or what.... Anyway....it reminds me of playing basketball....bend my knees, stick my butt out, stand on the balls of my feet, shoulders wide, elbows out, fingers spread apart some, hands facing inward....defensive stance....balance....

Anyway, sounds like I could take him to a pediatric orthopedist....where they could diagnose him....and then most likely discuss braces, exercises, casts, surgery, or outgrow on his own....

Or I could take him to PT....

I think I'll see what his pediatrician thinks and go from there.

Asher had two upper molars pulled in February 3rd. His upper 6-year molars were tucked under them. We let them grow in a bit more and then he got a space maintainer put on today. He will wear this till he's 12 (about).

Back in January, radiology at PCH said it was no big deal....they have kids with dental appliances all the time....

But, a friend told me this:

"Most of these appliances have at least some stainless steel in them, and although they don't pose a problem in terms of being magnetic, there are still 2 issues: (1) some hospitals won't tolerate any stainless steel to go into the MRI at all, if they make you pass through a metal detector stainless steel will be detected, and (2) stainless steel causes artifacts that will obscure certain areas of the brain."

Interesting reading:
http://jorthod.maneyjournals.org/cgi/content/full/33/2/90

Now to figure out if I have to have the space maintainer taken off and put back on for each MRI....not sure what that will cost us, but at least we are on 6 month MRIs now. And, apparently the hospital radiology team has a website that has all sorts of appliances listed and how they affect the MRIs....so getting brand and other info to them next week....

4/8/10

Talked to the dentist and the lab team today. This is called a Nance Holding Arch Appliance (NHAA). It is made out of stainless steel and nickel and acrylic. Even if we had another appliance made, they can not make the bands out of titanium, only the wire. I've sent this information to radiology/oncology. The dentist will remove the appliance before the MRI (like a day or two) and then put it back on after the MRI (Monday in case of a Friday MRI) for no charge, if that is what we decide to do.

Back to the eye doctor for a checkup today.

20/40 in right eye
20/200 in left eye

everything 'the same,' including any crossing (not worse, not better)

He goes back in 6 months; he'll get drops then.

Happy 7th birthday to my boy! Every birthday with Asher feels like a huge miracle and makes me bawl my eyes out!!!

Took some pictures real quick before he headed to the arcade with his dad....couldn't go as a family because the little ones are too sick....so I'm a bit sad, as I had planned to take him to Disneyland....oh well....this will do....I know he's going to have fun with his dad today.

To my beautiful boy, happy birthday!