Archives for the month of: October, 2006

I forgot to mention yesterday that Kevin and I were able to get out last night and go see Chris Tomlin…. because Suzanne decided that she would share her mom with us. Thank you Suz.

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We have been home for almost a week now. Grace’s medications have been changed slightly as the seizures continue, she still has not had more than 2 clusters of seizures a day, a couple of days none and some days one. We are thinking that ultimately we will end up having to give the Ketogenic diet a try. We are set to return to St. Paul for the day on November 20 to meet with Grace’s epileptologist and she will have an EEG while we are there.

The new medication she is on keeps her wide awake… we have a had a few really late nights and both of us are tired. We are adapting to the G-tube, but Grace seems to have embraced it fully! Our OT says that Grace is quite smart and has learned that it is easier to be fed through the tube then to work the whole sucking thing out when presented with the bottle. This bugs me… I’m not sure what to do about it yet but I’m looking at some options and making some calls!

Kevin is working this weekend and I am trying to get things in order here. We have a busy couple of weeks ahead of us which is quite daunting to think about so we are trying to be as organized as possible. We have quite a few doctor’s appointments for Grace here, I have several work deadlines, we’ll be headed to Kevin’s parents, and I think that’s it, but, it is enough!

There is a possibility that we will have home health nursing set up towards the end of next week, which means that Dad would no longer be so “scheduled” in his well earned retirement. We have recieved many gifts and blessings but the gift of his time, my mom’s willingness to share him, and his willingness to deal with things outside of his comfort level is amazing and beyond belief. I don’t really know how we’ll explain that to Grace someday…..

I normally leave this blog to Kevin — but several people have asked so I thought I’d include my thoughts.

Joy

Grace is doing incredibly well! She is more awake and alert, and has been sitting up being supported or in her therapy chair off and on for about an hour total so far today. Grace is off of the Iv antibiotic and going to an oral version that she will be on the next 8 to 10 days.

We are going to increase her Febeltol today and add a vitamin(?) that will protect her liver that can be harmed by being on the Depakote.

Labs are all looking good.

Three days without a seizure!

Should go home on Sunday!

Today went well for Grace. No seizures all today, so the Febetol must be doing something. Granted this could also be the honeymoon affect that we have experienced on many other meds.

Grace had no Tylenol today and she does not appear to be in pain, she was awake a great deal more and sitting up well and holding her head up really well.

We are completely off of Topamax now the really bitter tasting medicine that Grace was taking.

Dr. Doescher really wants to “clean” Grace up with the number of meds she is currently on, I would suspect by the time we return (if we need to return) to start the ketogenic diet that she will be on only two or three anticonvulsants and maybe Prilosec, we may even be able to eliminate that one as well. Who knows time will only tell?

Most likely looking at being discharged by Sunday.

Grace slept pretty well last night this is the first night since mid August that she has not been fed overnight. She woke up around 4am and took a couple ounces.

Her blood cultures are still not quite right, they want to make sure any infection is knocked out before discharging her. Dr. Strafford who did the surgery and is handling the followup believes that we should be able to be able to go home Saturday, Sunday, or Monday.