Timeline


Apr-11 Homestudy began
Jul-11 Signed with Holt
6/28/11 Found Jospehine, but another family is
currently reviewing
7/13/11 Received information for Josephine
to review
07/20/11 Asked for additional information about
Josephine's development
08/20/11 Filed I800A
08/23/11 Received additional information from her
orphanage and asked to hold her for me
08/24/11 Josephine went off Great Walls list to Holt
08/26/11 Sent LOI (Letter of Intent)
9/2/11 LOI uploaded in china
9/7/11 Got fingerprinted
9/29/11 800A
10/14/11 DTC (Dossier to China)
10/18/2011 LID (Logged in Date)
12/14/2011 LOA!
02/03/2012 Article 5 Pickup
02/16/2012Travel Approval
03/13/2012 Travel to CHINA!!!!!
03/29/2012 Homecoming


Monday, April 22, 2013

Update







After having a total of 4 episodes in one week, Dr. Parker admitted Madalyn for inpatient Video EEG monitoring.   Her last episode was 5 days ago, so I'm not sure we will be able to capture anything.  But the nice surprise was that Dr. Parker is on call this week, so we get to see her each day we are here.

So far today she has not seen any spiking on her EEG.  She does see intermittent slowing, but that is likely from her known stroke.  When asked if intermittent means it could be from a seizure, she said sometimes even from a known injury, it can still be intermittent.

I asked her the liklihood that spiking or seizures could be deep in the frontal lobe, and therefore not detected on the EEG.  She said "that's always the concern with frontal lobe seizures...that they can be hidden".   I asked her if the location of Madalyn's injuries made that likely, or not.  Since she hasn't looked at her MRI sinc 2007, I showed her a copy of the report on my phone and she was able to tell  it was in the _______ section (going to get her to tell me again tomorrow) and therefore not the most likely to be hidden, but doesn't rule it out.

I asked her if we should still go to Cleveland Clinic.   I told her I was worried that if we can't pick anything that it would be a wasted trip.  She said definitely go.  She said that's our ticket to being seen if we get into a crtitical situation.  She referenced how fast this issue came up, and said it would be great to already be established as a patient at the Cleveland Clinic if things stay the same or worsen.

I asked her if we could decrease her current medications to see how she does.  Since she is having  episodes, something isn't working.  Plus, the Depakote is doing what Dr. Parker calls the "depakote perm", meaning her hair is frizzy and fried looking.  So, depending on how her EEG looks, we may consider weaning off of at least one medicine.  She said we just have to make only once change at a time and see what happens.

I asked her the likelihood that the EEG given in the ER and on the floor last Saturday would have showed "slowing" indicating a recent seizure.  She said, not likely, therefore the fact that it didn't show anything isn't very significant.

Saturday, April 13, 2013

Fwd: Update, at UMC for observation


Sent from my iPhone

Begin forwarded message:

From: Cheri Bergeron <cbergeron@holmescc.edu>
Date: April 14, 2013 1:48:14 AM CDT

Subject:
Update, at UMC for observation

Madalyn threw up again on Saturday (after not since Thursday at school). It started with her stomach hurting while I was teaching at the gym. It started at 9:15 am.

This time she looked dazed, slow to respond, and unsteady. During the episode she slept intermittently hard....and then would wake and throw up and be out of it. She stayed this way for over an hour, and I drove her to the ER. She was still this way for several minutes after being in the ER and they chose to give her Diastat shortly after we arrived (around 11:00 am).

When she woke up at 1:30 pm she began to return to normal. By the evening she was completely normal.

They did an EEG after they admitted her to the floor, but she was over the episode by then. She is being watched over night and we will get To see the neurologist on call tomorrow.

I think the doctors think it was seizure related (her blood levels were all normal and medication levels where they are supposed to be). But I did not want to give the Diastat at home without the ER because I fear the AEDs could  be causing nausea, vomitting, and dizziness. I trust Dr. Parker, but much of what she has to go by is my observations....which seem so subjective.

So we are at the hospital and hopefully a step closer to knowing if the newest and even longer episodes are seizures.

Also since this would be the second time in a week Diastat was needed, I need to find out how likely it may quit working ......and what To do then....

I'm worried I should have given her Diastat at the 5 minute mark, but I was unsure that it was a seizure. And afraid that she was throwing up because of already sedating medicine.  The problem is, each time looks different! It's hard to know:(

Cheri
Sent from my iPhone