We are home.
We stayed another night because he was acting all drugged and sleepy and vomited twice after the MRI.
Heath had one more test done today before we left and failed the hearing screen in both ears. This could have something to do with the speech issues he has. We will be doing more follow up with this with his ENT.
Many other things during out stay where looked into like reflux and no test showed any signs that they could diagnose him with it, not even the sleep study. They said they could try him on the meds for 2 weeks and see how he did on it. I said no thanks if you can't tell me yes he has it then we don't want to try it. They where trying to say his back arching was caused from the pain of reflux. But that was not until today and I was starting to feel they only said it so I could be sent home with something to try as after 6 days I had no diagnoses. Lucky the OT and PT agreed it was not related to that but the immature reflexes causing him to arch not pain.
On that note he is responding well to OT and PT and he did get another visit from them today before we went home and loved it. I can't wait for it to start here at home now that he has his IV out and will get to play and prop with them using both hands.
We go back in 1-3 months for his genetic results. Beckwith Wiedemann still being what they think it is. He has a followup at his pedi on Thursday. At that visit I want to talk to her about his hearing, and allergies. I have to call for an appointment and if nothing else this ER visit was good for that because now his is in the system as a patent and a new patent with them has a 4 month wait for a first visit and screen and then 3 months of test so it could have been 7 more months without answers.
We see the Pedi Thursday I would like to know if she thinks BSW is what is going on because when David called her to tell her about his hospital stay she told him genetics should test him for BSW and at that same time in the hospital unknown to him genetics where talking to me about BSW. When I called him and told him what genetics had said he LOL and said she had mentioned the same thing to him earlier in the day. So I wonder did she suspect it all this time and not say anything about it or was it the fax the ER sent her that prompted that talk with David???
No answers on to what caused the seizures, but the genetic testing could tell us more..