More than a Full Plate.

Have you ever heard of that saying "God doesn't give you anything you cannot handle". I really think he's given us a bit more. We saw Reilly's pediatrician today and are even more overwhelmed with more issues with Reilly. Will we ever get good news and relief anymore? So we go to Reilly's pediatrician to follow up on his B12 levels that has been an issue since December. By trial and error of a multitude of tests, we realized that his severe lack of B12 is not because of diet or metabolic. He had a horrendous amount of blood taken a few months ago ( 12 viles) to test for a metabolic disorder. So far the results are inconclusive. So from here we have to be forwarded to a G.I specialist. ( gastro-intestinal). Not sure what they will want to do, whether is a biopsy of a piece of his bowels or not. We also have to make a trip to the BC Children's Hospital to follow up with the metabolic testing.

We also were able to get a bottle of melatonin. This helps regulate his sleep. Autistic children don't have normal levels of melatonin ( a natural chemical in your body). They are able to function on little sleep. So far so good and he knocked out cold going to bed! Were hopeful he will stay in his bed tonight and give us some dire need of sleep. He only sleeps 4-5 hours of broken sleep a night.

We are also going to get in touch with a Behavioural Interventionist that will help us get started on some therapy for Reilly. We need this person to help us get into a Centre that will deal with all therapies in once place instead of having to deal with a speech path, and occupational therapist etc individually. We also have to sit down with Reilly's Infant Development Consultant tomorrow to go over our goals for Reilly in the next 6 months. Where do we see him and what would we like him to achieve. A hard task for us. Where do we start and what is more important to start with? We have a hard time figuring out what therapy is more important than the other. Or what therapy is which and what it will do to help Reilly. Their is a maze of information on therapy we are trying to sort through.  We have a tremendous amount of people to talk to on the phone and meet in person that it's almost a full time job keeping up with appointments alone.

So, our ped. told us today that if nothing is happening fast enough and if his behaviour continues to worsen and the melatonin fails to work that we will have to put him on Respirdal? It's an anti-psychotic medication to try to help calm him down. A very frightening thought for a not even 3 year old.

He will also be tested for Ehlers Danlos Syndrome very soon. He is getting a ridiculous amount of bruises on him that don't heal properly. His balance isn't improving as well. So were hoping this testing will give us some guidance with his occupational therapy.

We also have to look soon for a preschool that will take Reilly with a support worker. Not every preschool takes children with special needs like Reilly so we have a list of people we have to work through to see what fits him. School is ending soon so we have to get on this task ASAP for September. *whew*.

If your overwhelmed with everything I've just mentioned. Try having to deal with it everyday. I'm insanely tired physically and mentally. We don't know how much more we can take on the lack of sleeping were getting. Getting up with Reilly everyday around 5-530am is daunting. We are stretching beyond our means to help him any way we can.

It breaks my heart to know my innocent little child has to go through this. It's easy to take for granted the simple things in a relationship. I take every little gift Reilly gives me as progress towards his true potential. It's so hard watching your child struggle when deep down inside you see this amazing, intelligent child who cannot express himself. We want him to be the best he can be. We need so much strength and guidance to get us through this very challenging time. It's very hard on Brandon and I. We are trying very hard to stick together and talk to each other when we are frustrated or overwhelmed. Ending on a good note I had a very humorous "conversation" with Reilly today.
Me: "Reilly, Mommy is going nuts"
Reilly: "nuts"
Me: "reilly, you drive me insane sometimes"
Reilly: "insane"
*so as a test to see if he's copying only my words I throw in a funny word*
Me: " poop"
Reilly: "poop".
LOL. That kid.