Update On Life

May '09 Margaux graduated from High School!!! Yes, it was a long journey, but she did it. Big sister, Lauren, came down and Grandma, Uncle Eric, and all of us were there to support her. She was also able to go back East to visit her Grandma Breta and see here aunt Robin too. She is a lot older now and was able to taken in a lot more than she would have if she were younger.

Ethan busy reading while Margaux was enrolling at the local J.C. He has really taken off with his reading. We need to do some review of math facts and reading/ writing words before he goes back to school, but he is doing really well.

Now that we know that he does not have Myasthenia Gravis, he will be having eye surgery instead to correct his double vision. He doesn't seem scared at all and just wants his eyes back to normal. We hope all goes well, it has been a long journey trying to gets some resolution to this problem. Here he is with his new eye patch that he has to wear 4 hours a day now.

Ethan has been getting better at his skate boarding too. He has been having a fun summer. A lot going on.

A Buddy Todd Park Day

We were lucky enough to hook up with a really nice mom and her two sets of twins who live in Fallbrook.  Her on boy is in Lil E's class and her daughter actually comes to my class for reading and science/social studies.  Nice family, she is originally from Maine and might be moving back soon.  
We spent over 2 and 1/2 hours at the park and the kids just played, climbed, and rode bikes or scooters.  Great day, beautiful weather, and nice company.  

Big Day

Wednesday 4/15/09 

This was the big day for lil e's EMG.  We got up early to get down to Children's Hospital on time, so there would not be any mix ups or problems.  The only problem we encountered was that no one seem to know where the EMG was to be administered.  Well after a few ups and downs on the elevator and down different hallways, we asked a medical person who just happened to know where we were supposed to go.  

We were able to find the location and waited until someone showed up.  There was some entertainment in the waiting area.  A big Plexiglas box with balls and levers that moved entertained lil e while we waited.  We were finally seen and got right to work.  I was told we were going to do an EMG and a test where they insert a needle into his muscle, but that wasn't done, instead a  RNS, repetitive nerve stimulation was done.  They placed electrodes on his right side of his neck and shoulder and repeatedly shocked him at different levels.  He initially was able to tolerate it, but as the test proceeded he was getting upset, which is totally understandable.  Anyway the results for this test came back negative for general myasthenia, according to this specialist.  He could still have ocular myasthenia, that is why more blood testare being done and will be sent to a lab in Boston, that specializes in neurology type blood work.  We will have the blood drawn for this on Friday when he goes for his CT on his thymus.

Little E and big sister being silly outside Ronald MacDonald House.

Fun at the park before heading out to get some lunch.  Beautiful day!  

Silly sister, just goes to show you are never too big to have fun...

Thoughts

Well, it is the night before Lil E's  emg, trying not to let my mind wander and just go with the flow when we get there.  Spoke with Big d, who is away on business trip.  It is funny how you know how things are going, but you choose to ignore it, but then when your own child brings it to your attention; then it is telling you a lot.  When talking on the phone tonight I could notice a big change in the tone when big d was talking with Lil E and how he talked to me.  The tone was all pleasant and happy, but when the conversation switched to me the tone changed completely almost to disgust or dislike.  I have noticed it often, but it becomes a reality check when someone else points out that exact same thing and they ask me why I let someone talk to me like that.  They are right; what kind of example am I setting for them and what is Lil E hearing and learning when I allow someone to talk to me in that negative tone?  I guess I need to really think about it and lead/teach by example of what I allow to be said to me and how.  It hasn't changed and has gone on for sometime; there is almost a hatred or disgust that I hear in the tone.  Just wanted to release my thoughts on that one, it doesn't help having a conversation like that and then also try to stay composed for your little one.   

On a lighter note I found the cutest fabric that was milled in Japan, for Lil E.  I thought about making him a little couch pillow or a thinking pillow, since the material has such positive thoughts on it.  Check it out, so cute!!  

And life goes on.  

Easter Prep and Easter Day

After Lil E tested for his orange belt we came home and dyed eggs.  Here is his little blue bunny egg that his sister helped make.  

This is a collection of some of the fun eggs the girls and Lil E made.  

Indy has grown so much, check out the post from awhile back.  He loves to be right there, so here he is by the Easter baskets.  
Lil E woke up early Easter morn around 3 am, and kept asking is it time yet.  He finally turned around with his head down at the end of the bed and went back to sleep until the dogs barked and woke him up.  He bolted out of bed and headed down to find the hidden goodies.  

Orange Belt

Lil E got his orange belt today.  He has been working towards the goal for sometime.  He and 10 other students in his class all tested for their next belt.  I was a little concerned to tell the truth, since the condition they think he has can cause him to get tired really easily.  He went to his group lesson, then to a birthday, then to testing, and then back to the party.  So, I am surprised to see that he still has the energy to dye Easter eggs.  The following are some pics from today. 

Lil E with his two senseis.

Lil E decorating an egg.

Lil E

Things happen for a reason and I have come to believe this, even if it takes a long time to see why.  Lil E possibly has a very unusual medical condition and I must say we here are at wits end trying to figure out what to do and how we can help him.  There is no fix for this condition; just ways to manage the symptoms, so what to do???  I am taking it one day at a time, and am enjoying his 51/2 year old antics, the never ending curiosity that he has, and his smiles. 

 Between work, home, and now this medical dilemma, one has to just go with the flow and think in a positive direction to avoid an overwhelming weight that you can place upon yourself as a parent/human being.  One must keep on enjoying snapshots of the day, and what follows is one of them from yesterday.  He got some new sandals and he climbed up on a rock, so I took a picture of his lil toes.  

He also lost his top middle tooth last Sunday; at 3 am in the morning he came running into our room announcing that he pulled his loose tooth out.  How exciting! 

Another fun thing happened at work.  One of my co-workers was helping the Easter Bunny early.  She was placing plastic Easter Eggs close by my classroom, so when Lil E and I were walking in the morning to my class he would find eggs; this happened almost every single day.  Most of the eggs had loose change in them, one had a dollar, and a few had some candy.  How sweet and what a wonderful memory for him to have!