Update on the Little Man

Some of you have sent me messages asking about how my DS2 is doing.  He is doing really great!  Today we spent the afternoon at MUSC to get the results of his recent sleep study and extended EEG montage.  This comes after a visit and EEG in April that didn’t bring the news we had hoped for.   Unfortunately, his April EEG still showed abnormal activity and the risk of seizures has kept us on the diet.  After his initial disappointment he has managed to have a pretty good attitude about the limitations it continues to place on his life.  He does so much better than I would.  He has will power of steel!  

Fortunately, today the results did not show any abnormal sleep patterns and NO sign of seizure activity during sleep.  WhooHOOO!  It was such huge relief to find out there are no additional issues; and at this point we don’t have to add medications on top of the diet. 

DS2 just finished 5^th grade with wonderful grades and a Presidential fitness award. He also recently played the part of Sebastian in a local Children’s Theatre Production of A Little Mermaid. He is busy this week at a musical theatre day camp and will be spending his summer learning to sail once we get moved.  We are blessed and I am so proud of this little man and how hard he works to not allow his medical issues to hold him back. 

Behold, children are a heritage from the LORD, the fruit of the womb a reward. 
Like arrows in the hand of a warrior are the children of one’s youth. 
Blessed is the man who fills his quiver with them! 
He shall not be put to shame when he speaks with his enemies in the gate. 
~Psalm 127:3-5

The Unexpected Lesson from an EEG

This weekend finds us still on the search for answers to what is behind the seizures that DS2 has been having (to back track on this story begin here) and he is under going a 72 hour ambulatory EEG this weekend.  We went to Charleston yesterday to get it set up and attached (yes, he has to wear it until Monday afternoon...even during sleep but fortunately he doesn't have to stay in the hospital.)  He is a real trooper and hasn't complained which makes me so proud of him and his sweet spirit.

On the way home from Charleston, we stopped for some lunch. Remember, he was attached to the EEG.   It looks quite intimidating, as he has wires coming out from under his head wrap and attached to a little pack that he has strapped on.  Of course, in the restaurant it got noticed.  Not that anyone was overt but you knew they were noticing and no one was more aware of that than DS2.  By the time our food arrived I could tell his mood had become very reflective and serious.  He looked over at me with such seriousness in his beautiful green eyes and told me, "You know how when we see someone who is different, or we talk about someone who is different? Well, it changes a whole lot when you are the one who is different."  We went on to talk about how people who are dealing with illnesses, or just any physical differences must feel.  His heart opened in a way that I don't think I could have ever imagined just by his small experience of being "different."  He has always been a compasionate soul, but I could tell that his view into what others who are different must feel, was heart stretching.  He learned a lesson that no words I could have shared could ever have taught.  He saw that no matter the differences we truly are all God's creations.  My heart just melted as I listened to my 10 year old grow and mature before my very eyes. He poured out his heart concern and love for others, and I don't think I have ever been so touched and proud of him.

Who knew that an EEG could teach so much?

Blessed are those who hunger and thirst for

righteousness, for they shall be filled.

~Matthew 5:6