Wednesday, April 29, 2015

4th EEG Results

Hi Guys!! Dylan had an EEG last week and it was the smoothest one yet.  He was completely calm and sat still well enough for them to get some great readings.  We were able to go over the EEG results yesterday.  Dylan’s left lobe in his brain is still producing a lot of epileptic activity.  His most recent seizure was this past Saturday. The new plan is to raise the frequency that they are “blasting” at that specific part of his brain in hopes of knocking it out.  They do not feel that he needs to get on medicine just yet.  The good news is that despite the seizure activity, Dylan’s brain is still responding to well to the treatment.  It is slow progress, but it is progress.  All we need to do now is knock out the neurons that are pulling down the others.  So, what does this mean for our timeline? We still have no idea! It’s so hard to tell what Dylan’s brain is going to do, but we are guessing that we may be here into the summer.  We have the condo we are staying in currently until the end of May.  Then, in June, we secured an adorable little guesthouse in La Jolla….for a great price! The owners are willing to do month to month for us and it is the most affordable place we have found yet.  God is good….and ALWAYS provides (even when I forget that for an hour and go through a minor freak out session…I am thankful for his GRACE!)

So what is going on with Dylan? He is still his goofy and quirky self, but different.  He is more aware of his surroundings and more involved in all the decision making.  He used to be a very go with the flow kind of kiddo, mostly because his brain was in a fog and he did not realize what was going on….well, now he is awake! He has an opinion about everything.  EVERYTHING! It is really quite hilarious.  He has become very vocal and it makes us so happy! His vocabulary is increasing and he is trying to get his point across more and more each day.  He is still having trouble pronouncing his words, but the amount of words are increasing.  Insert HAPPY DANCE here!! He has come so far in the past few weeks and it is exciting to see him grow and learn.  Erik’s family was here this past weekend and they noticed a huge change in him right away.  Sometimes I think we get used to the changes and get discouraged that he is not progressing, but he is.  And his brain is trying to catch up.  It is soooooo exciting!!!

 One of my favorite milestones he has hit is singing.  He has never sung anything or even cared about music.  He is now dancing AND singing along to his favorite shows.  He asks to sing in the car….meaning he wants their kid CD to play.  We have also been singing more every night and each of the boys really enjoy this.  Dylan’s favorite song is Row, Row, Row Your Boat.  This was introduced by Jackie a month ago and he really enjoys it! It is so cute to listen to him try to sing it.  And there is a secret second verse that is his favorite part.  Everyone needs to know this verse.  Here it goes….”Row, row, row your boat, gently down the stream, If you see an alligator, make sure that you scream!” And then you say AHHHHHH!!! That is his favorite part and he cracks up every time.  We probably sing this song 10 times a day and it never gets old.  Andrew’s favorites include Lord’s Army, Jesus Loves Me, Deep and Wide, and You are My Sunshine.  It is such an amazing sound to hear the kiddos singing….I LOVE IT!! 

We are heading home this weekend because I am shooting a wedding on Friday and we have to bring Daddy back home.  We will be returning on Monday without Daddy.  Please pray for our family.  It is very hard on everyone to be separated, but Daddy needs to work.  It will be a big load on me being here by myself with the boys, but I know that the Lord provide me with the strength to do it and will keep us safe. Thank you for the continued love and support!! I will update again when we have more information to share.  Have a great night!! 

1 comment:

  1. I'm so thankful for such amazing progress and will be praying for strength and endurance when Eric is away.