We are still around ....

[Guest guest]

Hello everyone. How is everyone doing? We are hanging in there. We didn't

drop off the face of the earth, just had lots of computer problems. We have

a new email address now-

pmzf@...

I will be reading everyone's letters and trying to catch up.

AJ started back on food in October. Her main diet is still Neocate(about 40

ounces a day still). In September, she started taking Gastrocrom, 1 amp 4

x/day. Since we have tried the foods, we have only had a problem with Apple

Juice. She is eating rice, chicken, turkey, cucumbers, carrots, apples

(yes, but no juice), bananas, grapes. We are trying to stick with one

ingredient, non processed foods. Example: Rice but no rice cakes. She is

extremely happy about eating again. Her speech is picking up every day and

she is becoming more outgoing-if that is possible. (when she has

'cheated'-she wanted birthday cake on her birthday, snuck somebody's

Mcs past us, hid in the closet with a bag of pretzels.....we see the

'old' AJ.)

BUT

Why does there always have to be a but??? AJ had occasional asthma. We are

proud owners of a nebulizer that was mainly a dust collector. That was

until October. The asthma started out with a little wheezing, a few

treatments and she would be okay, even without maintaince. As the number of

foods increased so has the treatments. I know there is some type of

correlation because I keep a detailed journal of foods, meds, moods,

etc.....and in October, my entries just start to grow!! Since November, she

has been on predisone more than off. Her daily meds now include, Prilosec

for reflux, the Gastrocrom, at least 2 nebulizer treatments, 2 puffs morning

and night of Flovent and if we can-2 puffs of Albuteral. We now go to a

pediatric pulmonary specialist. During New Years week, we were in the

hospital 3 times, for asthma. The doc would have admitted her, but most

kids in the ped unit, were there for stomach viruses. He was not putting

her there unless absolutely necessary. The asthma turned to asthmatic

bronchitis and eventually to pneumonia. She stopped the predisone a few

days ago after a week without coughing and it is back. So even though she

is eating and happy, i dont' feel it is without consequence.

So that is about it. I look forward to hearing from everyone again and

meeting those who i don't know.

Phyllis

(mom to Arissa (AJ), 3 on 12/22/95, EG, asthma, reflux, allergies

and Remi-my 6 yr old 1st grader-spina bifida, developemental delays, LATEX

and other allergies)