Tourette Syndrome Awareness Month

I've mentioned before that Monster Man was diagnosed with Tourette Syndrome about two and a half years ago.  Earlier this year, Little Man was also diagnosed.  Needless to say, the need to spread awareness and understanding of Tourette Syndrome is something that hits close to home with me.

The time period from May 15 to June 15 is Tourette Syndrome Awareness Month.  During that time, I will be posting random facts about TS on my Tourettes blog, What Tourettes Has Taught Me.  I invite you to learn more about TS by checking out my other blog and keeping an eye out for new facts throughout the month.  And if you have any particular questions about TS, please feel free to ask!

And here come two more

We received two more postcards from Postcrossing members today!  How exciting to go to our mailbox and find two little treats, giving us a break from junk mail and bills.

This first postcard came to us from Rita in Belgium.  The front of the postcard shows the Castle of the Comts, located in the city center of Ghent.  What a beautiful town castle nestled amidst historic homes!

Our other postcard came to us from Zhuldyz in Czech Republic.  She reports that the card shows many of the great sites to see in Prague.  The clock featured in the middle of the postcard dates back to 1410!

Chicago by way of Russia

On Saturday, we received this neat map postcard from Maria.  Maria is living in Memphis now, but spent time in Chicago after she moved there from Russia to earn her PhD in Chemistry.  She is currently working at St. Jude Children's Hospital, a job I am sure she finds extremely rewarding.  Thank you to Maria for this postcard!

Kremlin Bell Towers

It has been a while since we've received a postcard from a Postcrossing member.  We had taken a bit of a break from sending postcards, so we weren't receiving any as a result.  I started sending them again recently, as it is so nice to get something other than bills and junk mail in the mailbox.  On Saturday, we finally received this beauty.

This postcard came to us from Anna in Russia.  She shares that the front shows the Spasskaya Tower on Red Square and the Kremlin bell towers, which can be found in Moscow.

What a beautiful card that we were thrill to receive!

Raising Money for Camp Twin Lakes

I am pretty sure that I've mentioned Camp Twitch and Shout here before.  If not, I know that I have talked about it in the past on my What Tourettes Has Taught Me blog.  In case you aren't sure what Camp Twitch and Shout is, it's a wonderful camp experience for children with Tourette Syndrome. It's a place where my Monster Man (and now my Little Man, as well) can connect with other kids that have TS, getting a chance to feel 'normal' for a week. While I don't think that everyone should always be the same, I recognize the value of having a place where they don't feel so out of place, so alone with their daily struggles. For Monster Man, Camp Twitch and Shout has been a little slice of heaven on earth.

Camp Twitch and Shout is a camp partner of Camp Twin Lakes, a wonderful organization that offers camping experiences for children and families going through so many struggles - medically, emotionally, and more! Camp Twin Lakes depends on donations to make these great camps possible.

This October, I am heading up the Camp Twitch and Shout team for a Camp Twin Lakes fundraiser, Spin For Kids. Our team goal is to reach $5000 in donations, and I am hoping to have somewhere around 20 riders on our team. Please join us in reaching our goal. If you live in Georgia, please consider joining the Camp Twitch and Shout team. If you are unable to join the team, please consider making a donation to sponsor a rider and help our team reach (or possibly surpass!) it's goal.  You don't have to make a decision right away, as the ride isn't until October 20, but our team would appreciate you taking a moment to consider riding or sponsoring.  Thank you in advance!
 
Click Here to Donate

Neurologist Visits

I had to take both Monster Man and Little Man to the neurologist last month. I've mentioned previously that Monster Man had been diagnosed with Tourette Syndrome about 3 years ago. After a rather disappointing visit with his old neurologist, I decided it was time to find a new one. When I knew he needed to be seen again, I called the new neurologist to make an appointment for him, and made an appointment for Little Man at the same time. On top of the migraines that Little Man has been suffering from for over 2 years now, he had also been having multiple tics for the past couple of years that made in known to us that he, like his older brother, has Tourette Syndrome, too. It was time to take him for the official diagnosis at the same time he was being seen for his migraines. In addition to the TS and migraines, I had another concern that I had needed to discuss with the neurologist. For some time now, Monster Man has had a problem where he would quit talking mid-sentence, spacing out and completely forgetting that he was even talking. I was told by several people in a TS group I am part of that it could be TS related, but that it sounded more like absence seizures (petite mal seizures). In recent months, it had been brought to my attention that Little Man was also having spells where he would 'space out' and seem like he wasn't quite there. Given the fact that Georgia Boy, his sister, and their mom all have epilepsy, it was a bit concerning to us. I mentioned this to the neurologist while we were at their appointment, and he scheduled both boys for EEGs the following week. After a long night of keeping them up until midnight and then waking them up at 5am (they were only allowed 5 hours of sleep prior to the testing so that they would be sleep deprived), Georgia Boy and I took them to have the EEGs performed. In our paperwork, we were told that the results would be ready through our physician in 7 to 10 business days, so we expected a long wait before finding out the results. Instead, the neurologist called us that afternoon with the results. Sure enough, both of the boys have been having absence seizures. The boys are now both adjusting to taking seizure medications, a transition that has been a little easier for Monster Man (who is used to taking medication for the TS; Little Man does not require medication for his TS at this time) than for Little Man. I think Little Man is finally adjusting, though, and we're already seeing a huge improvement in the amount of seizures we were previously seeing.

Can we start over?

So far, 2013 hasn't exactly been the best year for us.  It often makes me think "Can't we just start this year over?"  If only it were that simple!

Angel Baby started off the year with a rough start.  Bad grades at school meant that she lost a lot of her privileges at home.  Add to that a knee injury, impetigo, a sinus infection, and an ear infection, and you've got a good idea of how badly her year has started off.

Monster Man didn't have too bad of a beginning to his year, until February rolled around.  While I was at the doctor with Angel Baby for her knee injury, he managed to fracture his arm in PE.  He has also had an ear infection that has required two rounds of antibiotics.

Little Man has had his share of bad luck in 2013, too.  He has had two sinus infections and a stomach bug, on top of having a couple of migraines already.

Oh, and did I mention that in the midst of all of this, my Granddad passed away?  Yeah, it has been a rough year for sure!

Thankfully, though, there are enough good things that have happened that have helped make the year seem not-so-bad after all.

Little Man celebrated his 7th birthday with tons of friends and family.  We had a great time with everyone that was able to crowd into our house for the party!

Angel Baby celebrated her 14th birthday by having a few friends over for our own version of Glamour Shots... We gave the girls makeovers and then finished it up with a photo session.  They even had fancy dresses and accessories to complete the fun.

Monster Man competed in his school spelling bee once again.  Though he didn't win, he did do very well, and we are so proud of him for being able to take part in it for the third school year in a row.

Georgia Boy and I got to take a friend from England to his first hockey game.  We had incredible seats, and it was so much fun to get to share something we love with our friend.  We also introduced him to our favorite restaurant - Jim N Nick's Barbecue.  In the short time he was in the states, we actually ended up returning there for a second visit with him.

Even though the year has gotten off to a bad start, I guess it hasn't been so bad after all...