Archives for the month of: November, 2006

Today Grace went in for a test to determine if her body is producing enough steroids so that her immune system is back to normal. They had to draw blood from her every 15 minutes for an hour. The results will take a week.


We had our followup appointment on Nov 20 with Dr. Doescher at the Minnesota Epilepsy Group in St. Paul, we had an EEG and then met with the doctor. We got some good news!

They were able to detect sleep spindles in Grace’s EEG while she slept, this was something that was not present before and would be seen in a normal EEG. They also were able to see a little more organization in her brainwaves during awake time. So they believe that the new medicine, Febetol is starting to work! We increased it on Monday and will most likely increase it again on Friday, it will all depend on seizure control, we are still have a couple a day.

We will go back to St. Paul on Jan 8 for our next followup, we hope that there will even be more good news to follow!

We got tuned down about a two weeks ago for nursing care for Grace. It’s really annoying when multiple doctors say with confidence, she gets a G-tube and you will get nursing hours the next day. We were denied because Grace’s care is considered custodial, but then again any infant care really is custodial.

Fortunately Dale is in for the long haul, which we may need.

Hopefully they new state legislature will get to work right away and spent part of the 300 million surplus on programs we need and not giving tax breaks! If they could just clean up the waiting list for the waiver program (Medicare) we would be able to get funding for some additional services that will be crucial as Grace gets older. If you have some free time please feel free to write your state senator or representative ( Currently we are on a 12 to 18 month waiting list for the ill and handicap waiver and at least a 24 month for the brain injury waiver. We ultimately want to get on the brain injury waiver as this will provide some specialized services for Grace’s condition.

Grace is crying in her crib behind me, still wide awake and 10:25 pm. The medicine she is on really makes her wired! I’ll have to rock her soon… this parenting for sleep thing is extremely complicated and we never know if we are doing the right thing.

Grace had two clusters of seizures today both around 4 minutes… we had been in the 8 to 10 minute range so this has been a relief. We leave for St. Paul Sunday afternoon, her appt. with the epileptologist is at 2 and there is an EEG scheduled for noon.

She has yet to spike a fever or throw up a lot so I am hopeful that we will really be able to go off of the steroids. I heard Kevin talking to her this morning about all the places he wants to take her once she is able to join the world. I have been thinking about that a lot as well. (Heather and Drue we are coming to see you!)

Grace is continuing to become stronger, more active, seems to be figuring some things out. this sleep thing right now is HUGE though. We have stopped bottle feeding as it upsets her way too much. My motherly instinct is to feed — and while I would love to have that time holding her and having her drink out of a bottle, it’s not pleasant for her or for me.

I never knew that parenting could make you feel so helpless. But I think that Kevin and I are being very strong….


We saw both Dr. Kabbani today and Dr. Cook. Both were amazing.

Dr. Cook wants us to take Grace off the steroids as of today — then in three weeks we’ll go in for a test to make sure that her body is producing the steroids that it should. If all goes well Grace (and us) will be able to join the world in three weeks. I have to be honest — I am cautiously optimistic about this. I don’t want to be disappointed — I don’t know that I could take that.

Dr. Kabbani let us know that Grace’s EEG continues to look the same – no worse but no better. This is amazing to us because she is doing such wonderful things. Playing, crying, standing on her own two feet (with assistance) – she is very close to sitting all by herself, she babbles, she plays and reaches for things. We were hoping this meant good things (like an improving EEG). Kevin called and I followed up with the Minnesota Epilepsy Group today– we are increasing the med dosage again.

Today my heart is sad for her, and for her future, but I hear her now playing with the bird on the mirror — talking– and when I turn around her little self is in snowman pajamas with feet — and I feel small rays of hope.