Monday, September 28, 2015

An Update

Let's just say that September has gotten away from me.  Between my grandmother's funeral and the start of a new MOPS year (I'm one of the coordinators), I've been busy.  I love my MOPS group, this is my third year coordinating and while I am a veteran and tend not to let the stress overwhelm me, there is just always a long list of things to do in the beginning.  Now that the dust has settled, it should calm down. 

We are doing great.  Mia is still having seizures daily.  We had a brief stretch of 4 days without any seizures, but then it was back to the usual.  I'm waiting to hear back from her doctor on whether or not we should add a third medicine into the mix.  She has maxed out both of her current medicines, so those aren't really an option.  Of course, if she were to gain a significant amount of weight quickly, that would change things, but our 40 pounder (yes, she's only 40 pounds!) has a hard time gaining weight.  We are just thankful that she continues to grow at her own pace. 

We've gotten into a nice routine with school.  The kids love doing school together and I've noticed some improvements with Mia over the past few weeks.  She struggles with basic addition facts, but the more we practice, the better she is doing.  It is a daily struggle though.  We try to do math first just because that is when I am most patient and it's the least favorite task. 

Keep on praying for a resolution to the seizures.  She's been a trooper through all of this and our hope is that she'd be seizure free soon.

Wednesday, September 16, 2015


It's been a crazy few weeks at our house.  My grandma passed away unexpectedly on September 2nd.  She had a lived a full life and was ready to meet Jesus, we just weren't ready for it to be her time yet.  But, we are grateful that she is rejoicing in heaven and has her new body with no suffering and no pain.  We look forward to the day when we will see her again.  Asher and I flew back for the funeral.  It was several very nice days with family that I don't get to see very often.  Asher loved all the attention and did super well with all the changes. 

On a funny note, during my Grandma's service, Asher was well ready for a nap and just being difficult (believe it, it happens).  He was on the floor in the church and sat up and bumped his head on the pew hymnal box.  He immediately starts crying at what seems to me to be the loudest possible volume available to him.  Anyway, I jump up and start walking out with him and half way to the back of the church he screams as loud as he can, "I need a bandaid!"  Humorous to everyone there, not so humorous to me.  The joys of being 2?

Last week we were adjusting back and had a visit to Mia's neurologist.  Because neither of the grandmas were available to go with me, Brad took the day off and came along.  It was good because he rarely gets to her doctor appointments and its nice for him to be there.  Her neurologist has bumped her up to the full dose on both medicines, hoping that this will control the seizures.  He is hesitant to start a third medicine, but not completely against it.  We will touch base with him in a few weeks to determine more of where we go from here and see how she's doing at the full dosage of her current medicines.  As of today, she is still having seizures daily, but we will give it a bit more time before a decision is made. 

There are a few other options for her.  Over the past few years, cannabis oil has started to make headway in the area of epilepsy.  It is still not FDA approved here, however, there are some clinical trials being of which is in San Francisco.  Her neurologist mentioned that they are planning some of their own clinical trials in the future and that she would definitely be a candidate for that if she is still having seizures when they start those trials. 

The other option for her is a Vagus Nerve Stimulator.  It's an implant that is connected to a nerve and sends pulses to your brain to regulate it.  He didn't have a lot of negative concerns about it, but since it is rather permanent and another surgery, we are going to do some of our own research to see if that is something we might want to try.  It sounds hopeful for some, but like all things, it doesn't have results for others. 

Yesterday we went to the eye doctor and Asher's eyes are doing well.  Calvin, however, needs school glasses.  He has a small correction that she'd like to do, but not glasses for the whole day.  He excitedly picked out a pair that are blue and orange and we should get those in a few weeks.  Mia got her new glasses yesterday, so we'll have to get a picture of the kiddos in their glasses to show you all. 

Yesterday was also a big day for Asher.  We moved all three kids into the same bedroom.  They've been begging to sleep together for awhile, so we thought the time was right.  We are hoping that this will make Asher come visit us less in the middle of the night...we can always hope.  They all tucked in and went to sleep quietly and quickly.  Unfortunately, Asher had a small fever and woke up and ended in our with kids, right.  :)
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