Updates 4/25-4/28

Well, we had an early start to our day today. Alli and I were on the road to Scottish Rite by 6:30 and checked in at day surgery by 6:55. Our nurse, Beth, was able to get Alli's ph probe inserted without a problem. We had a quick X-ray to check placement, made a small adjustment, and went on our merry way. Over the next 24 hours we will track when we feed her, her position, and any episodes of vomiting. The results will help us determine the extent of Alli's reflux and what her treatment options are...pharmaceuticals vs. fundoplication. This will also help us, in conjunction with her EEG, to understand if it is the reflux that is causing her to vomit, or if it is correlated with seizure activity.We are currently waiting in the EEG lab for a patient room to open up on the floor and then we will get her hooked up and started with the 48 hour video EEG monitoring. Our hope with the video EEG is to be able to capture various events that occur during Alli's day to see if they are seizure activity or something else. If it is seizure activity it should register on the EEG. We will also confirm that she is still out of hypsarrhythmia and whether or not she is having myoclonic seizures. We are hoping they are able to get good data and that we can either continue our current course of treatment, or make some modifications, if necessary.More to come...

Well, we are in a room and all hooked up. So far Alli has had 2 vomiting episodes, so there has been a lot of action on the ph probe front. She has been resting since they attached the leads to her head, so not much action on the neurology front. Dr. Flamini will be by this afternoon for a visit. Jason spent the morning with us, which was very nice! I have all of my buttons ready to go. :)

It has been a busy day. We have pushed our red button a lot. We had a good conversation with Dr. Flamini. It was a characteristically not so great day for Alli. I am hopeful that she will have a better day tomorrow so that they can see how dramatically she can swing from one day to the next. Tonight she will have a sleep study. So we will be able to see if sleep apnea plays in to this at all. Below is a shot of what the EEG looks like while she is sleeping right now.

Everybody had a decent night last night. We had an unexpected visit from Livie's mom, Lettie. It was definitely nice to have some company and more than a few good laughs.

This morning they took out Alli's ph probe, drew some labs, and reconnected some of her EEG leads. I spoke with Dr. Flamini and Alli's EEG appears to show some modified hypsarrhythmia. He is going to spend some additional time with it and then we'll talk again. If that is the case, then we will likely max out on our dose of vigabatrin and see how that works over a 10 day period. In the meantime we will wait to hear from Dr. Blumenthal on the results of the ph probe.

We did not have the sleep study last night.

On a side note, there is a little boy with Tourette's down the hall that has been squeaking like a high pitched bird this morning. Pray for him and his mom. I suspect that her days spent dealing with that are really a challenge. Perspective is a wonderful thing.

We are in the home stretch! Alli's sleep study is under way. I have to say that whoever devised this test should have to walk around for the rest of his life (because no woman would have thought of this and then suggested it as a good idea) with a piece of tape on his top lip. I can't even believe she fell asleep, but truly by the grace of God she did. We will be discharged tomorrow morning.

As of now we are increasing Alli's vigabatrin to 500 mg in the am and pm. I suspect she will be in hibernation much of the weekend. She has 10 days to 2 weeks to see if that works and then we will reevaluate options, which right now appears to be depakote. Based on his preliminary impressions it appears that her IS is morphing in to another form of epilepsy, as she had multiple seizure events with a frontal lobe focus. These events were manifested primarily by eye fluttering.

We are waiting to hear from the GI on the outcome of the ph probe.

Below are some photos of Alli from earlier today and one of her connected for her sleep study. She had a great afternoon. Thanks for all of the prayers and well wishes. We feel so blessed to have such supportive family and friends.

Just waiting on our discharge paperwork and we will be on our way!