day by day

We are truly taking things day by day after another seizure struck. It brought me back to reality. I had enjoyed a long month (one whole month) without having to watch Oliver have a horrible screaming cluster of seizures. But , as our family's luck would have it, on Cinco De Mayo he woke up at 11pm with an awful one. This was the first one in a month and so hard to see as we thought maybe, just maybe we were on the path to seizure freedom. Time will tell in the next few days if that was an isolated incident or if it's time to start trying different meds, increase his Vigabatrin dose or something else. Oliver was scheduled for an EEG yesterday since he had been doing so well with decreased seizure activity. Of course, the night we are trying to sleep deprive him for the EEG, one strikes. He has had an ear infection so maybe that had something to do with it? who knows. His seizures, when they first started, were every 24 hours approximately. So we've gotten past that point now without a 2nd one, but I am so nervous that more are coming and it will be time to take action.

He did really well at his EEG yesterday. We're not EEG specialists, but Jason was looking at the screen while the test was being done, and Oliver definitely still has a hypsarrthmia (I can never spell that right). His brain wave patterns were all over the place. No official report from the neuro so we don't know if there are other seizure types present as well or if the hyps has improved at all. We'll wait and see what they say and what they want us to do about the return of the seizures.

Oliver also had a hematology consult. They are going to try and get to the bottom of the low red and white blood counts for us. First we do blood tests (we should hear results sometimes in the next few days), and then if those don't tell us anything, we move on to a bone marrow biopsy :(

Last night we got home a little before 6pm and Oliver fell asleep, slept through his Vigabatrin (swallowed the meds while sleeping!) and kept on sleeping until 11pm! poor little tater tot. We all went out to eat down the street at our local bar and grill and had a really nice dinner. Oliver slept the whole time, Jason and tried some different beers and Tobin had a really fun time driving his firetrucks all over the table. I am now realizing that we have to take advantage of these times and moments. Oliver is small and portable and a good sleeper when napping. We should get out and about as much as we can. I can only imagine the logistics of traveling with a child in a wheelchair, or going out to eat with a kid who cannot sit up on his own.

This morning I went to Tobin's school for a mother's day event. He painted my fingernails (you can imagine how good they look), then I painted his nails. Then he did my hair, gave me a massage, and rubbed some lotion into my hands. I felt very pampered. We have a fun weekend coming up. Some friends will be coming by on Sunday to celebrate mother's day with us and have brunch. I am very excited for a cup of coffee and chatting with friends while the kids destroy the house, it all sounds very "normal" and that's just what I need!

We are still waiting on EI to get us started with therapy for Oliver and doing private PT in the meantime. It's expensive though so I don't know how much longer we'll be able to keep it up. I am going to try and find a therapy center that takes Aetna in network that is just as good as the one we currently go to, but it is bittersweet as we all really like the current therapist and she does a great job with Oliver. With daycare/nanny costs coming up soon we have to make cuts somewhere. In my fantasy life we win the lottery and both stay home with Oliver :)