Thursday, January 5, 2012


I guess Jake was feeling left out of the blog, so he decided to get our attention. Not really, but Jake did have a seizure last night. For those of you new to "The Doolots" you can read about Jake's story at I don't have the energy to repeat it all here. I haven't updated caringbridge in a long time, so I am due for a Jake update, but it may have to come in bits and pieces. We have been battling seizures with Jake since right around the time Emmett was born (hmm....maybe there is something to sibling rivalry). It was hard to diagnose at first because Jake would vomit and be "out of it," but it never looked like a typical seizure. We have been through 4 different seizure medicines, but mostly changing them due to side effects. Since the end of last school year Jake has had several seizures that are more typical without the vomiting. He has partial seizures, so he will stare and tremor but he does not have "all over convulsions." His seizures tend to last quite awhile, and the rule of thumb is to give him rectal valium to stop the seizure if it lasts more than 5 minutes. This is more of a rule for a convulsive seizure, so we end up waiting 15 minutes or so usually before we give it. It's a gray area but watching your child have a seizure is frightening, and it's hard to know whether the brain is being further damaged in the process. We did give the diastat (rectal valium) last night. It works in 4-5 minutes and puts Jake to sleep immediately. This happened around 7 pm, and Jake had not had his night dose of his regular seizure medicine yet. I talked to his neurologist, and he said to wake Jake up in an hour or so to make sure he wasn't still seizing and to try and give the other medicine then. We were able to give it, and Jake went right back to sleep. We had him sleep on a blow up bed in our room to keep an eye on him. At 3:45 am this morning he was "Wide Awake Jake" and we've been up ever since. We usually give Jake muscle relaxers in the middle of the night to get him to sleep all night (I know that sounds terrible but Jake has a terrible sleeping history/pattern, and this is what we've finally figured out that works for all of us). We didn't want to give him any last night since he had a seizure and been given Valium. He seems perfectly fine now, so I guess I'll send him to school with instructions to call if he gets tired and needs to come home.

I think we'll probably change seizure medicines again since Jake is maxed out on the dose of his current one, but still having seizures. We have an appointment with the neurologist coming up, so we'll wait and change then. Jake's last seizure was about 3 weeks ago, so hopefully we can make it to the appointment before he has another one.

Jake early this morning drinking his milk and checking out Google Earth on the IPAD. 

Millie and Ruby are doing well. They have had less apnea spells since starting the caffeine back two days ago. Their weights were the same (not sure about last night's weight - I usually get the stats in the morning), but that's ok since they had several days of gaining.

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