Monday, 19 March 2012

Tomorrow we leave for our second A-T clinic.
The schedule I have been sent shows it is going to be just as grueling as the first.
Lots of appointments across 3 different places.
Three days of bedlam.

Scott and Tom will have a similar schedule at home.
Scott working and Tom attending before and after school care will also be difficult.
It is starting to "sink in" how difficult the next 5 days are going to be.
Last night Tom was in tears about "everything".

But we will survive.
I may forget to pack PJ's and Scott may send Tom to school with no lunch BUT that is not the end of the world (and I have prepared his teacher and the canteen lady, just in case!).

Thank you to everyone for offering to assist Scott, but I think that my step by step AGENDA will help everything to run smoothly !!

Amelia and I are lucky.
Due to my description of the clinic and impending medical procedures, a member of "Amelia's Project" has asked to come.

I only know this person from Amelia's Project.
I had already booked our 1 bedroom apartment, so this "angel" claims that she will sleep on the couch.
We both laugh at the fact that we barely know each other BUT we will be living together for 4 nights.

I will not be myself due to stress and brain overload.
Amelia will be anxious of what is going to occur at the clinic.
I will get nauseous and probably faint during any medical procedures.
Amelia will just scream the place down.

Sounds like fun, doesn't it ?????

But this "angel" still wants to come.

Her husband is taking time off to assist with their 9 and 15 year olds.
It also happens to be his 40th birthday while we are gone.

She wants to cook dinner for us, give me a break and give Amelia someone else to interact with besides her "stressed mum".

Amazed ?
So was I when first approached !

But that is Amelia's Project.
People doing and giving so much to help us.

Blows me away.

I was going to tell you another funny story about Tom but unfortunately today is not appropriate.

You may remember me speaking of a young man with A-T, Jared Digby.
He lives in America and is one of my FB friends.

A while ago I posted that he was struggling in hospital to stay alive.
He is still there and everyday is a rollercoaster.

Today's FB post was difficult to read.
It said.....
things are pretty rough right now. Jared is in renal failure, fluid is building up and they are going to be putting him on dialysis. His docs say that on x-ray, his lungs look worse than they ever have...they have been unable to do the bronchoscopy as he is not stable enough to have it performed. His sugar is over 300 and his temp is holding steady at 103 degrees (this is WITH a cooling blanket set at 64 degrees.) Currently, he is receiving another blood transfusion in an effort to give his body an extra boost. For quite some time today, his O2 levels were sitting at 70...he finally got them back up to 90. Go Jared!

His Daddy, Will and his siblings were finally allowed in to see him today. (They had been exposed to Chicken Pox, and the doctors didn't want to take any chances, so they had to wait until the incubation period was over.) His Church Family has also been there in force today. Pam wanted me to remind everyone that several times during this hospitalization, when things looked bad, Jared has been able to pull out of it at the last moment. We are praying that he will continue this! 

Tomorrow A-T families all around the world will be wearing "red" in support of Jared.

One day this could be Amelia....... fighting to stay alive.

Some people have questioned why I am putting Amelia through medical research procedures this week.

My answer.....I would like to avoid this EVER happening to my little girl.
Doctors and scientists need to find an answer NOW.

Fight as hard as you can Jared.........


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