Your not alone / What it's like

I am posting a text conversation that my wife and I exchanged last week between one another (with her permission and some edits).  ITs an example of what it can be like having a child with a condition where advances (significant) are lacking and desperatelly needed.  The text may also let other hydrocephlaus parent know they aren't alone.   The scenario is this:  Im at work and Hawke has been having good days, doing well:

Carm: Hawke slept
Carm: an hour & a half & got up for a lil while but is layin & cuddlin w me like he's goin back to sleep!
Carm: He has a headache :(
Jason: He said his head hurt?
Jason: Dnt like that
Jason: Concerns me a little
Carm: No. Keeps closin or covering eyes & covered his ears when loud noise. Layed himself down flat & yawning
Jason: Ok, tnks
Carm: What should I do?
Carm: He's just layin on me quiet & motionless
Jason: Should u do?
Jason: Monitor?
Jason: Is he sleeping?
Carm: Eyes open but arm acrss them
Jason: Sit him upright and see what he does?
Carm: No! I think he hurts
Carm: I'm tryin to keep things quiet
Jason: How long this going on? Grrrrr
Carm: I asked him if he's ok & he said no
Jason: Try given a bottle
Jason: ?
Jason: Push shunt?
Carm: 20min
Jason: How r pupils?
Carm: Hawke slept
Carm: an hour & a half & got up for a lil while but is layin & cuddlin w me like he's goin back to sleep!
Jason: That suks
Carm: He has a headache :(
Jason: He said his head hurt?
Jason: Dnt like that
Jason: Concerns me a little
Jason: Did u buy him hat?
Carm: No. Keeps closin or covering eyes & covered his ears when loud noise. Layed himself down flat & yawning
Carm: I didn't buy hat
Jason: K
Carm: He played w it for while then wanted me to put it back before checkout
Jason: Ok, tnks
Carm: We all had fun there. Even Canny was angel!
Carm: What should I do?
Carm: He's just layin on me quiet & motionless
Jason: Should u do?
Jason: Monitor?
Jason: Is he sleeping?
Carm: Eyes open but arm acrss them
Jason: Sit him upright and see what he does?
Carm: No! I think he hurts
Carm: I'm tryin to keep things quiet
Jason: How long this going on? Grrrrr
Carm: I asked him if he's ok & he said no
Jason: Try given a bottle
Jason: ?
Jason: Hmmmm
Jason: Push shunt?
Carm: 20min
Jason: How r pupils?
Carm: Not me!! (Push shunt)
Jason: Ok
Jason: How long was nap?
Jason: Fever?
Jason: I'm thinking watch him close and see if he changes in 10-15 minutes?  Try bottle?
Carm: Looked unequal at one point but before I could make sure he shut his eyes tight & covered them. But unequal wldnt b abnormal w migraine
Carm: Ok. He's hard to understand when he talks
Jason: Ok, I'm more concerned.  Hate hydro. Could be bad "normal" hydo symptoms (or so I've read online) or shunt not wrkng properlly, or migraine from hydro?.  ..........
Jason: I'm praying - prayed
Carm: K
Jason: Hoping he is ok and expecting a letup
Carm: K
Jason: Pls update me in a short while
Carm: Said his whole head hurts
Jason: Ugh....1hatyya you think?
Carm: What do I think?
Carm: Dunno
Carm: Very concerned
Carm: Tryin not to b terrified
Carm: Makes me cry
Carm: He cryin
Jason: Can u wealk aroubd with him upright?
Jason: Walk around
Carm: No!
Carm: If he's overdrainin he feels btr down!
Jason: Think we should go (to ER) wait or call nuero?
Carm: I'm gna wait on Lord! Dunno what else to do!
Jason: I'm pryn ferverantlly
Carm: I knoCarm: Sry u can't b home!
Carm: (1 Hour later)  He's actin better! Eating too! Boy! That was scary 35 min!!!
Jason: Phewww, cnt describe the feeling feeling the phone vibrate.  ER or healing? Healing, thank u Jesus!
Jason: Tnks carm
Carm: No thnks to me!
Carm: He played a lil too!
Jason: PTL (Praise the Lord)
Jason: Ok