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AVM Survivors Network

Between a rock and a hard place with hell in between


#44

Hi, Chirstine. I heard the news the new monash children’s hospital is going to open this year. This is really a good news for the benifit of aussie kids.


#45

@Jeffshong the new hospital is already open as is the new Starlight Room but the official opening of the room has been delayed until July-August to give us time to get things a little more sorted with Jack. It’s very nice with some wonderful features though quite stark in the wards themselves. The doctors are still finding their way around using maps on their ipads lol. A nice little touch is that every bed has a soft toy on it for each kid :slight_smile: They’re using Jack because of his particular situation and also to try and raise some awareness for the condition as it is difficult for most people to comprehend what we deal with.
How’s Larry?


#46

Good to hear that. Larry is doing ok, but some new symptom has developed today when I wasn’t there. His feet and one of fingers is shaking out of control.The neurologist interprete this is voluntary movement, not a seizure, ok to ignore.
We’re Still waiting for Angiogram, seems not lucky to do this tomorrow. Lots of uncertainty ahead.

Jack is a special boy, hope he’s doing great. I’ll talk about Jack’s great story to Larry when I go to Childrens’ tomorrow.


#47

Hi charles here. My paralyzed leg is moving but can’t put pressure on it so can’t stand. I still have trech as no one wants to remove it. I also still have peg tube but started to eat soft foods, mash and sweet potatoes. Thicken apple juice and chilly. I have been doing speech Therpy and physical therapy. This week going for new c.t and a other swallowing test. All this because I demand it. Changing to my third primary doctor on the first. Sorry taken so long but my partner has to type this out and make all my phone calls and paperwork and drive me to appointments. He is pretty wiped out. I know I will be able to speak once someone removes the trech. Next writing I will let you know where the brain bleed was for others in same situation. I’m still bed ridden and need help with everything but see small improvements. Hanging in their .
Charles


#48

CHARLES!

IT IS GREAT TO HEAR FROM YOU! I often think of you and Dan, both battling to get you well. I don’t know how you’re doing it. It seems like the most difficult journey but there are people out here willing you both on.

With all my love,

Richard


#49

Thanks Richard. Its a struggle


#50

This is Dan typing for charles3. I cant use my hands yet and have to have Dan do everything for me. The frustrating part is I think I could have a 90% recovery if I had people whio cared and know what their doing.