They're Lurking - TSC

Recently, over the past few weeks, we have seen evidence of those pesky seizures lurking beneath the surface....trying to push their annoying way through...in our Bup.

R will come to us with his right arm held partially up, his hand floppy and bent at the wrist like it's broken, stating,"My hand is wiggly."
Now, we know that R has a tumor in the "right hand centre" (that's definitely a technical, neurological, medical description of location!) of his brain. Also, in the past, when R was seizing on a regular basis, his right hand and arm was affected both with tremors, stiffness, the inability to use his right arm and hand as well as showing left hand dominance.

Bing! Bing! Bing! The seizure alarms went off for both B and I! Even though we weren't seeing any other evidence. This "wiggly hand" was happening too often and Bup would always alert us to it.

Thankfully, he's on a low dosage of Keppra and Dr. Neuro quickly responded via Super Neuro Nurse to increase this dose. After two increased doses, the wiggly hand has disappeared so far. Woot! Woot!

Let me tell you, our hearts all but stopped with the threat of seizures again. It's all worked out and Bup is fine, but it's just a reminder that there is "stuff" going on in his little brain and body that we easily forget about now that he is seizure free, and the meds are working. It makes my stomach sink and heart squeeze with fear that Bup could possibly be en route to living a seizure riddled life again. All is well though. Just a little reminder that we need to be grateful, keep our eyes open and hug our little man until he yells, "Please stop!"

They're Lurking - TSC

Recently, over the past few weeks, we have seen evidence of those pesky seizures lurking beneath the surface....trying to push their annoying way through...in our Bup.

R will come to us with his right arm held partially up, his hand floppy and bent at the wrist like it's broken, stating,"My hand is wiggly."
Now, we know that R has a tumor in the "right hand centre" (that's definitely a technical, neurological, medical description of location!) of his brain. Also, in the past, when R was seizing on a regular basis, his right hand and arm was affected both with tremors, stiffness, the inability to use his right arm and hand as well as showing left hand dominance.

Bing! Bing! Bing! The seizure alarms went off for both B and I! Even though we weren't seeing any other evidence. This "wiggly hand" was happening too often and Bup would always alert us to it.

Thankfully, he's on a low dosage of Keppra and Dr. Neuro quickly responded via Super Neuro Nurse to increase this dose. After two increased doses, the wiggly hand has disappeared so far. Woot! Woot!

Let me tell you, our hearts all but stopped with the threat of seizures again. It's all worked out and Bup is fine, but it's just a reminder that there is "stuff" going on in his little brain and body that we easily forget about now that he is seizure free, and the meds are working. It makes my stomach sink and heart squeeze with fear that Bup could possibly be en route to living a seizure riddled life again. All is well though. Just a little reminder that we need to be grateful, keep our eyes open and hug our little man until he yells, "Please stop!"

Dairy...oh how I dislike thee.

So, we tried dairy again. Goat milk. After much begging and pleading from W, we gave it a go, starting on Saturday. Allowing goat milk with cereal in the mornings and the odd glass throughout the day. Maybe two a day.

What a regret.

By Monday, W spent the day on the couch. Which I thought was weird, but just chalked up to a busy camping weekend.

Tuesday.....super runny nose.

Wednesday....ear infection and super runny nose. Crying in the afternoon because his ear hurts so badly. Crying when drops were administered. Which is completely unlike W.

Thursday....it's almost 3am as I write this....W is awake due to coughing; ear still sore, nose still running. Thank goodness for the couch, a cozy blanket, and Leapster. After an hour or so of struggling to sleep, we are now settled on the couch for a while.

Oh, Dairy, how could you do this to us....again? We were desperately hoping for a change. For the ability to enjoy a little goat milk. No such luck. I guess it was worth a try.....???

Now, due to this reaction, W and I will be missing out on Canada Day festivities, and a trip to the Ponoka Stampede as well. Instead, we will be laying low, napping, and off to the chiropractor to help those ears drain and stay open. Ah....summer fun!

Dairy...oh how I dislike thee.

So, we tried dairy again. Goat milk. After much begging and pleading from W, we gave it a go, starting on Saturday. Allowing goat milk with cereal in the mornings and the odd glass throughout the day. Maybe two a day.

What a regret.

By Monday, W spent the day on the couch. Which I thought was weird, but just chalked up to a busy camping weekend.

Tuesday.....super runny nose.

Wednesday....ear infection and super runny nose. Crying in the afternoon because his ear hurts so badly. Crying when drops were administered. Which is completely unlike W.

Thursday....it's almost 3am as I write this....W is awake due to coughing; ear still sore, nose still running. Thank goodness for the couch, a cozy blanket, and Leapster. After an hour or so of struggling to sleep, we are now settled on the couch for a while.

Oh, Dairy, how could you do this to us....again? We were desperately hoping for a change. For the ability to enjoy a little goat milk. No such luck. I guess it was worth a try.....???

Now, due to this reaction, W and I will be missing out on Canada Day festivities, and a trip to the Ponoka Stampede as well. Instead, we will be laying low, napping, and off to the chiropractor to help those ears drain and stay open. Ah....summer fun!

What's the Scoop?

Okay, friends and inter-blogging readers that I have not yet met & stay silent, what gives?

Comments have become null & void.

Readership must be low.

Or non-existant.

What's going on?

Boredom?

Irrelevant topics?

Annoyed?

Moved on?

Left the computer age and started a more simpler life with limited technology?

Do tell.

I love blogging, sharing, releasing, but feedback is one of the most beautiful results of blogging.

What's the Scoop?

Okay, friends and inter-blogging readers that I have not yet met & stay silent, what gives?

Comments have become null & void.

Readership must be low.

Or non-existant.

What's going on?

Boredom?

Irrelevant topics?

Annoyed?

Moved on?

Left the computer age and started a more simpler life with limited technology?

Do tell.

I love blogging, sharing, releasing, but feedback is one of the most beautiful results of blogging.

Do Tell...

"My penis is wiggly. It's dancing!" ~ Bup

" You be Jabba the Hut. You're fat and he's fat." ~ W

"I'm telling you! You, big time out Mommy!" ~ Bup

" I'll be the church-man! This is the last time we gather here to celebrate." ~ W...the churchman.

There are certain things you just don't want to hear from your children.

There are also statements that cause you to squirt your drink out your nose as you drink and laugh at the same time.

Oh...what will they say next?