Dr. Parker's nurse called back yesterday afternoon and thought the event at church was suspicious.  Therefore, she recommended we increase the night dose of Vimpat by 50 mg.  I'm cautiously excited to say that with that dose last night, Madalyn was dry for the first time in months.  We have had random nights of dryness, so I'm really trying not to be too optimistic. 

Madalyn update

Madalyn had a possible small seizure during Christmas Eve Mass.  She was being fidgety (normal) in mass and then she layed on my mom.  Her eyes were opening and closing (slow flutter) so I thought she was pretending to sleep.  Since she was finally quiet and still I told my mom to let her keep pretending.  About 3 minutes later she sleepily changed positions.  I had been suspicious since she first layed down, but I was getting more concerned so I asked her where she was.  She told me church.  I waited another minute and asked my mom if she thought she could stand.  My sign that it is a seizure has been when she cannot stand during an episode.  We decided to leave church and see if she could stand.  The first few seconds in the church foyer I don't think she could.  She had a dazed, confused look.  We were headed to the car to get the Diastat in case it progressed, but then she came out of it and asked to go back to church, so we did.  If it was a seizure, it would be a simple partial seizure since she did not lose consciousness and she remembers the whole event. I have left a message for the neurologist to see if she wants to adjust her medications, or schedule an EEG monitoring.


 In August Madalyn was doing much better because we had gotten off Keppra and onto the therapeutic dose of Depakote.  Her teacher thought everything was fine.  She started taking tests in first grade, and it became apparant that she was not grasping concepts.  A pivotal moment for me was after working with Madalyn over the weekend, I emailed her teacher and said "is it supposed to be this hard?".  Her teacher, replied, "no, it is not supposed to be this hard".  I felt relieved that my concerns were validated.

I emailed her neurologist and her neurologist suggested we try ADHD medication because strokes and seizures often have problems with attention and hyperactivity.  The first few weeks were awesome.  She went from getting in trouble nearly every day at school, to being a model student.

A few weeks later, I realized it wasn't just that she was not gaining academic concepts, she was losing them, along with the ability to remember lyrics to songs she once knew.   I also realized she was unable to follow simple conversations.  I was panicked.  When I asked her teacher for her insight,  she told me that Madalyn works 10 times harder than the other children, but can't grasp concepts. 

I researched all her drugs (as I have many times) and decided she likely had the side affects listed for  Depakote of "memory loss, confusion, and dementia".  I was also concerned that the Focalin may be causing more spiking.  After trying unsuccessfully to get in touch with her neurologist, I made an appointment with our pediatrician.  He was also concerned, and agreed to call the neurologist for me the next day.

The neurologist felt it was not likely that Depakote or the Focalin that was causing the issues, but instead that she was likely having more seizure activity than the EEG showed.  Therefore, she suggested we add Vimpat to her seizure medicines.

I'm happy to say her neurologist appears correct.  She is again able to reason through some easy addition and subtraction, as well as sing songs.  She seems much sharper, and seems able to comprehend our conversations. I am, however, concerned that she may have had a seizure on Christmas Eve on the therpapeutic dose of two seizure medications.  I left a message for her neurologist and will post her thoughts when her nurse calls.

During the months of regression, we had a neuropsychological evaluation.  At that time it was found that she may need modified curriculum.  I initatied a ruling for a 504 plan  from Madison County to change to St. Richards Special Kids program. Because her issues fluctuate, I do not know the extent she will need the services.  But, I feel it is best for Madalyn to have an IEP and support services available when she does need it.  And lastly, I want the support and community of the "special kids" program for Madalyn and me.

Merry Christmas

Sent from my iPhone

Minnie UP!

Click on the YouTube video of Josephine:  Minnie UP .  

This Christmas

 





Christmas 2005 I had just returned from meeting Madalyn in Guatemala and had 3 more months of waiting before she could come home. From I-600 to referral, then Dossier to DNA, through PGN and cable, then pink, she was finally in my arms forever!  Christmas 2006 was our first Christmas together.  It was awesome!  Christmas 2007, 2008, 2009, and 2010 were full of blessings, but passed too quickly! 

 

 Christmas 2011 we were back in the waiting place.  I found Josephine's picture on Rainbow Kids during the summer, and although Christmas was fun with one, I was aching for Josephine. She was waiting in a place without a family, and without a Christmas.  There were many thoughts in our heads.. how would she adjust, what would she be like, how would my oldest child feel, how well was she being cared for, was she warm?   But, mostly.....how many more days until we can go get her!?!  Through LOI, I-800A, LOA, TA, until FINALLY, in March, she was in my arms forever!

 

 Christmas 2012, we are all together, and free from the the waiting place!  And though it took Josephine some time to adjust, she is happy, smiley, funny..and cherished, adored, and loved by all that meet her.   To all the families in the waiting place this year:  Prayers and hope that you are together super soon....and that your waiting children are safe, warm, nourished, and taken care of, as best their caregivers can, until your forever day.