She hasn't posted for quite a while so I wondered if she left BE. Do you know if this is something that has been brewing for a while?

Anyway a lot of good wishes to both.

Best wishes to Gingerert and her son.

Little O was born with several problems...

http://britishexpats.com/forum/showthread.php?t=648069

Best wishes!

He is an amazing little guy and his mommy is an amazing woman.

Thinking back, I seem to remember someone on BE from Wisconsin that had a child that was eligible for Medicaid coverage because of birth defects. Was that Little O?

Yep, he is the one. A real little fighter.

Seems there is some improvement since last night

Keep up the fight little O

Good thoughts coming your way

Good thoughts for little O.

Sending best wishes to her and her little boy.

What that little boy goes through on a daily basis is incredible, but he's never without a smile on his face in his photos. I have so much admiration for Gingerert, not sure I could be as strong under similar circumstances.

Keep fighting Little O

....and it looks like things are improving today

The little man is strong and determined, just like his mum

Great news! May the improvement continue. (And I hope there is continued improvement at your house, too, Sugarmooma.)

Hello!

You lovely bunch, you. Thank you everyone for all your kind words (especially Sugarmooma, because she's awesome and has her own stuff to be concerned about).

Owen has a rare chromosome disorder, and is currently the only child in any medical journal or records with his exact genetic karyotype. He is therefore the very definition of unique. Good for street cred; bad for predicting his future. He's always had reflux and small eyes and delayed development and a feeding tube and scoliosis... and on and on and on... but sometimes new things crop up and we're never prepared for them, like what went down this week.

On Tuesday night he went to bed at 7.30pm as usual. My husband read to him until 8pm, then left him alone. At 8.30pm we heard what we thought was Little O laughing, but the longer we listened, the more obvious it was that it wasn't laughter. We checked on him and the sound was him struggling for breath during a massive grand mal seizure - the first we've ever seen with him. He was completely grey, foaming at the mouth, twitching and shaking, stiffening, eyes rolled back... it was absolutely horrendous.

Cue an ambulance, sirens, lights, police escort... the whole shebang. We were taken to our local hospital ER first, but they couldn't control his seizures, so they called in a team from the Children's Hospital in Milwaukee. When they arrived after an hour Little O was still seizing and they couldn't transport him like that, so they tried medication after medication to calm things down. He was also intubated because he kept struggling to breathe. Finally, four hours after we first found him, we arrived at Children's at 12.30am Wednesday morning and were admitted to the ICU. Owen's body had been seizing the whole time, pretty much, for about four hours.

It's been a rollercoaster, tbh. He wasn't responsive at all until yesterday, but he's now on the epilepsy monitoring unit instead of the ICU, and is breathing by himself with just one IV for fluids and medications. At one point he had five or six lines, including two that went into the bones in his legs, but gradually they've removed nearly all of them. (Helpfully, Owen also pulled one out overnight last night... little stinker.) He's also starting to eat a little via his feeding tube. We don't know what caused the seizure yet, although the MRI and EEG showed where the seizures came from, along with some changes to the white matter in his brain. Those are probably related to his chromosome disorder or a brain bleed he had during his birth four years ago, and are likely to be either scarring or a viral infection.

He is now on a seizure medication, antibiotics, and his usual cocktail of drugs for other health concerns. He is very, very wobbly and sleeps a lot, although he isn't sedated any more. He can't hold his head up yet, so that'd the first thing to fix. Then we progress to sitting and walking, and tolerating full feeds again, and then we start thinking about going home. It may be as early as Sunday or Monday if he keeps this progress up - fingers crossed.

Thank you all again so very, very much. I know I'm not active much on BE these days but I read stuff sometimes and keep in contact with some people via Facebook. I love this place , I just wish I had more time to keep up!

Little O and his brother Baby J send their love and snuggles. We will survive this and be a better, stronger family because of it.

Much love and thanks. xx

Great to see you!

It must have been so scary, but good to hear that things are improving.

Love to all x