Quiet Place

Yet again I haven't been so good about getting on here with updates - Note to self: write, it makes me feel better.

I'm in a quiet place right now. There is a lot going on not just with Zach but some health issues are also happening with my beautiful daughter Zoe.

Zoe is having some incontinence issues. We have learned that her bladder is not sending information to her brain letting her know when she needs to go. On top of that she is suffering from major constipation. I can't help but wonder if all of this stems from her spina bifida occulta (the docs swear it doesn't but I'm not too sure about that) http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700275/k.5F64/Spina_Bifida_Occulta.htm Zoe is now back on a medication for the constipation and also wearing a watch that alarms every 2 hours to let her know she must use the bathroom. The hope is to re-train her to realize she must go potty. She is going to the hospital on June 1st for some tests to be run. I will know more about everything then.

Zoe is also having some major issues with her JRA flaring up.....poor kid has been in a ton of pain. She has issues with her hips, knees, and ankles....I've been noticing a slow down in her walking and some limping here and there. She doesn't want to go back on her methotrexate shots but I'm thinking she is going to need to.

Zach, well since his allergy test we've been staying away from his known allergens. Yet when he eats orally he is still getting very sick. Just yesterday he ate one strawberry and complained of pain. I'm about to say forget food....his g-tube is his life support and he is doing amazing on that alone! My fear is he will lose the ability to eat altogether...he is already delayed in this area.


Since my last update Zach went to the ENT...we found out his tube in his left ear is on its way out, the right tube is still in place. I'm to keep a very close eye on his hearing because of his past with glue ear and hearing loss. We go back in 5 months at that time they will also do another hearing test on him.

Zach has an appointment on June 1st and then we will find out when the GI is running more biopsies. After the biopsies are complete we will be working on going out of state for further help with Zach's situation. I'm hoping he will qualify to get into the NIH. IF not we will be looking at other programs around the country for the best help.

I got a call this past Friday and Zach is all set for his Summer Clinic on July 27th -- this is where it will be decided if Zach is going to our states ESE Pre-K program and his IEP will be written.

Still the same old same old with therapy.