Gastroparesis - digestive system shutdown

Hello dear friends,

After not having to attend hospital at all from 2011 - 2016, we have had to attend numerous times since June of last year with Amelia.

We seemed to have been dealing with the Ataxia Telangiectasia only, for a long time, and now many "side effects" of this disease are now appearing.

A degenerative disease means it only gets worse over time.

On my own personal journey, it appeared that I grieved for the child that I thought I had while accepting the one I do have, for a very long time.

Now we seem to be experiencing many of the complications that can occur with Ataxia Telangiectasia.

Recently her digestive system decided to stop working.

Amelia's stomach and bowel were full and were not moving along as normal.
She vomited regularly because there was nowhere for the food to go.
She did not want to eat, because she felt full as the stomach and bowel were not emptying.

I am grateful that the doctors are trialling medications to get it started again.

The general progression for an A-T child is to move to peg feeding (a tube of fluid/formula straight into the stomach).
It is a natural progression in this disease and is harmless.

BUT as has occurred with so many other children.....
She has had walking taken away.
Talking.
Feeding herself.
Toileting herself.
Showering herself.
Using a computer.
etc

I will try SO HARD to save the enjoyment and love of eating orally.

I cannot possibly describe the most favorite things in her life on 2 hands anymore.

Food is one of the five.

I know this is the progression of the disease and one step further to... lets not discuss it anymore.

But I just can't comprehend another step at this stage.

Saying that....
With Amelia doing a few hours back at school this week for the first time in many, many weeks, it has allowed me to analyse and process a plan to move forward.

We need to accept and understand that we will have regular hospital visits in the future.
We need to understand that the disease is progressing faster and at a different pace to others.

I need to understand and accept this.

I was prepared this time for hospital, and it made it all much easier for everyone.

It still does not make this whole horrible journey any easier, but at least everyone knows that the digestive system shutting down, is just another stage.

I would sacrifice myself to stop these stages from happening, but A-T does what it wants.

My personal journey recently has taught me that I do stupid things and offend regularly.
I am also learning to be weary of those that gossip and judge.

I do not have enough tears for those situations, let alone my own.

Please don't be offended if I do not make regular contact, I am going to be a turtle under its shell, or exhausted!

Just wanted to explain the recent crap.
xxx