To Tonya

[Guest guest]

Tonya,

I am sorry for not replying to your message. I had a minor crisis

going on here last night and I never checked email. Now, on to your

questions....

First of all, please do not be afraid to ask me anything about Max.

I am always open and honest on this listserve because I hope that

someone can learn from our experiences. Max seems to be a bit more

involved than most of the RSS/SGA kids and it really helps me

sometimes to just put things into words!

Okay, about Max - Max does have some other things going on. He was

not a premie, but he was expected to be 9 pounds and was born at 6,

going down to 5 before we brought him home. He was observed by

myself and the nurses doing some staring and turning blue, so he was

in special care for a few days, but he came home on day 7. They

never found anything wrong with him. Then all hell broke loose with

the failure the thrive thing and so on.

Today Max has learning disabilities, more language based, but he is

classified as other health impaired. He has Tourette Syndrome,

too. Max definitely has anxiety issues and has been in psycho-

therapy for 5 years. He has the BEST therapist and we truly work as

a team. Merrilea, the therapist, and , the psychiatrist who

prescribes his meds, are godsends. They have helped Max through the

worst years and we are now reaping the benefits. He has started

school for the first time in several years without a two week

hospital stay and no increase in meds for anxiety. Max has severe

dysmotility and anxiety only makes it worse. But he is eating well,

sleeping well and even doing some extra-curricular activities that

he has never been able to stay in before. (He loves acting!)

So, that is Max. He has written a brief but beautiful letter for

his Magic walk, although he is only able to physically tolerate 2

miles. No one cares, though. They are pledging just because he is

walking, not by the mile.

If you have other questions, just ask!

Jodi Z.