More Up's and Down's

Adina is now 3 years old and proud of it. She also thinks that this means she is a grown up! We had two Birthday celebrations for her. On her actual day we had a little family celebration. A week later we had the big family and friends party. Adina had so much fun with everybody and received some very nice gifts. She asks everyday, do I have another party today? I will post pictures sometime in the future.
The day after the big party Oliver became very lethargic. He sometimes gets this way after having a seizure or just having a busy day, like the party. It continued and we were struggling to wake him up by the end of the week. I called the hospital to see what they thought, they said get him in right away. As soon as we got there they admitted him, we waited in the ER for his room to open for about 6 hours =). Oliver is known by some of the hospital docs there, nice to have some continuity of care if we have to be there. They knew something was way off. Once they called the Neurologist we figured out the problem. Oliver was most likely very overstimulated from all of the snuggling he got at the party. I guess if you try and imagine it, it would be. Not being able to see and having all of the different touch and smells. Anyway, this probably threw him into seizure mode. Basically he was having seizures on and off for 5 days, hence the waking up for a few minutes and sleeping again. He received some medication that interrupted the seizure and woke him up. Now we play the medication adjustment game some more. We got a prescription for the emergency seizure med. One dose given for any seizure over three minutes long. After insurance the cost is 300 dollars for one dose. Insurance knows we need it and will pay I suppose. Anyway, it helped and they did not need to start an IV. Oliver is an incredibly hard IV start. Last time he needed one, after nine tries, they brought him to the anesthesiologist who work in surgery to do this.
We don't want anyone to think that we are angry for snuggling Oliver. Trust me, we enjoy the break when others hold him. But now that we know this may be a trigger we cannot risk it. Don't be offended when we say, Please don't pick him up! Holding his hand is okay, talking to him is okay, but we can't risk more seizures. Not only is it hard on Oli, but our family.
We are now checking in with the neuro doc every other day. In the hospital with some of the health care team and other doctors advice, John and I have decided that we are not taking the kids out anywhere until they get the H1N1 shot. We are not sure how Oliver would tolerate this with his seizure and brain issues. We are not taking the chance. Until we get the shots, no church, no shopping (except the necessary), no visitors, we are now hermits! Yes, we may sound crazy, No, we don't care. We love you all and love the support we receive from everybody. That is why we know you all understand. Thanks =)
We are adjusting to this change in seizure pattern, trying anyway. I am not sleeping at night, I sit by Oliver's bed and watch him sleep. I have this intense fear I am going to fall asleep and he will have a seizure that will be missed. I lay in bed and get so nervous I just sit with my little man instead. Sometimes the fear just hits me and I have a good cry, it helps. This will normalize again. We were denied a nurse again, I will appeal until we get some help! A kid with this many issues including the worsening Epilepsy deserves some nursing care, and we desperately need some qualified respite.
Thanks again for all of the love and prayers. It really is what gets us through these not so great times. We will update with any news. Oliver has had two good days post-hospital!