Easter

We had a great Easter weekend at the lake.  As soon as we arrived Friday, we tested out the cooling vest & it worked.  Trace was able to play outside - yay!  He played in the lake, which was way too cold for me, but he loved it.  Peyton brought a friend and they also braved the cold water. 

The bunny was generous this year and brought lots of goodies & a paddleboat, which the kids really enjoyed. 

Trace tired himself out quickly & went to sleep about 6:30, with no seizures, and only woke up about 4 times!  We all enjoyed another day of fun Saturday.  Trace had a really hard time falling asleep and had seizures on Saturday night.  This is the first time he has had more than one seizure since adding the Clonazepam.  I really want the Clonazepam to work, I can't stand watching him have seizures, and the regression that they bring.  His development has been great since the seizures have subsided.  He's even said some new words - school, splash & roar!  He woke several times and was up early Sunday AM.  We went to church, which was nice because we haven't been in a long time.  Trace does not do well in church, he doesn't like to be in a loud or crowded environment, stinking autism!  Thomas & Boompa traded off taking him outside because he would just cry.  We did keep him in long enough to go to communion and receive a blessing though.  Trace napped and then we had lunch & the egg hunt.  He woke up pretty tired and was not getting around so good for the egg hunt.  He decided to drop the basket and crawl.  I piled a few eggs in front of him so he didn't have to work so hard.  He didn't much care about the eggs - but loved to smash the half melted chocolate inside & lick it off his fingers!  Peyton had to take care of hunting the rest of the eggs for him - what a sweet Sis!

Generosity

Generosity - giving freely without expecting anything in return.  There are people in this world who are truly generous.  I am blessed to have some of these people in my life.  Thomas & I received a surprise this week from a friend, one very kind and generous friend.  Sometimes I find myself so caught up with everything my world is spinning.  Then this happens - my world stops for a moment - I want to cry because I'm so overjoyed.  It's these moments I cherish.

Trace has been having trouble with overheating.  I thought it was just the warm weather, which doesn't help, until it started happening indoors.  Bright red face, hot skin, but no fever.  The culprit of this is a medication he takes to help control his seizures.  One of the side effects is the inability to sweat, so his body can't cool itself down.  Therefore the sweat test last Friday gave us no results.  His neurologists both agree it's best to keep him on the seizure med for now.  Because of another generous person, we received a cooling vest to help.  I'm hoping it does enough so he can enjoy some outdoor time this summer.  He loves being "ow sigh".  If not, then I guess he can always spend lots of time swimming.

Peyton received her driver's permit yesterday - so scary!  I can't believe my baby girl is already old enough to drive.  Time seems to slip away faster and faster each year.

UMDF Annual Mito Meeting - Morgan's Wonderland

What a fantastic weekend!  Friday we arrived at the lake and it was warm, Trace was overheated almost immediately.  We couldn't let him go outside at all.  This is the first time Trace has exhibited heat intolerance, which makes me worry about summer.  He's always been cold intolerant, but at least he could stand to be outside in the summer.  So inside for Trace watching movies - which he didn't seem to mind at all.  He loves his Disney movies.  He did get to go on a ride in the Kubota early evening with Bebe, Boompa & Sis - he seemed to tolerate the heat a little better.  Thomas & I stayed back to relax on the porch and have a drink - so nice!

Saturday we headed out to the Mito Meeting at Morgan's Wonderland.  The weather was cloudy & cooler, so thankful.  It is a really amazing place.  Trace had so much fun that he was exhausted by the time the meeting even started.  The meeting went well and I was able to meet a couple of people I've been wanting to for some time.  We arrived back at the lake and Trace slept till about 5:00.  After his nap we went for a ride on the boat, which Trace loved!  He drove, pushed every button he could, hung over the edge to feel the water (fearless) and went back and forth too many times to count.  It really brought tears to my eyes to see him so happy.  Sometimes it just hits me - the thought of him one day not being able to do something which makes him so happy just kills me. 

Trace loved the horse! 

The sensory room amazed me & Trace 

Trace was excited about the carasoul,

until it started moving, then I think it made him dizzy

Water is always a favorite of my mister's

Thomas, Bebe, Peyton, Me & Trace ready to ride the Train.

Trace was tired at this point, as you can see.

Sunday left the lake early and came home so Trace could rest.  He slept for a few hours that afternoon and we worked on Peyton's bug collection.  It wasn't too hard to find them considering where we live.  It was kind of gross to me, especially when they're pinned to a board sitting on my kitchen island. 

I can't say enough what a wonderful family weekend this was - can't wait to do it again.

Finally Rested

After some very sleepless nights this week, Trace finally slept last night only waking twice – yeah!  He’s been doing so much better this week.  His appetite has increased and I think we have the med adjusted correctly so he’s not waking up all night wanting to eat/drink.  His eye has healed without any infection and he hasn’t even bothered it too much.  I’m surprised, but so thankful.  He has had only a couple of seizures this week.  I’m so happy the Clonazepam seems to be working, at least for now.  Wearing my blue today to support autism awareness for my baby boy and all others with autism.

Peyton made Varsity Cheerleader!  She is so excited and Thomas & I are so proud of her.  She’s really an amazing cheerleader and has so much school spirit.  She worked hard to earn a spot on the Varsity squad and I think it’s a great accomplishment for an incoming sophomore.  I can’t wait to watch her at Friday night games. 

I’m really excited about this weekend.  We are going the UMDF Houston Chapter Mito Family Conference at Morgan’s Wonderland in San Antonio.   Morgan’s Wonderland is a park designed especially for special needs children.  Trace is going to have so much fun!  I have been looking forward to meeting more families who are affected by mitochondrial disease.  And of course to see my mito friends, who I don’t get to see very often because of our crazy busy lives.  I even have a nice surprise for everyone thanks to my wonderful friend Brandee.