Friday, May 22, 2015

Almost Pam Time

This week went by both quickly and painfully slow.  Isaiah has been kind of grumpy here and there and we've narrowed it down to either new teeth coming in (he's drooling, grinding and clicking his teeth, and chewing on everything.  Not to mention hysterical tears out of NOWHERE) or bone pain.   I'm leaning toward teeth being the culprit.

We're working on getting Isaiah used to sunglasses.  He and the sun have a love/hate relationship.

Chronic bone pain can be common for some with OI and some don't experience any at all.  Pamidronate really helps with that bone pain if it's something an OIer is experiencing.

I am looking forward to next week; whether Isaiah is experiencing bone pain or not, Isaiah usually starts feeling like a million bucks by the first night of Pam (remember, Pam is short for Pamidronate.  It's a treatment that Isaiah gets through his port that helps his bones.  Isaiah's dosage is every 8 weeks, and it take about 3 hours a day for 3 days.  We stay together at the McDonald House and spend our mornings in the Day Medicine department at the hospital.).  That's usually evident by his attitude and playfulness.

Isaiah loves doing the Itsy Bitsy Spider lately. 

Although I am looking forward to Isaiah feeling better, I am nervous I bit off more than I can chew with next week's schedule.  We have a Fast MRI scheduled for before Pam, bright and early on Tuesday morning...that involves zero sedation but likely a lot of tears. #keepingitreal.  It should be a quick picture inside Isaiah's head to see how/if the shunt is helping relieve the spinal fluid.  Then we have Pam.  The first day is always a bit of a struggle as they have to measure/weigh Isaiah, and access his port (that means they use a needle and basically place an IV...just in his port in his chest instead of in his hand).  

After Pam, we're schedule to see Isaiah's neurosurgeon to go over the Fast MRI.  

All on the first day of Pam.  I assume we are looking at 8+ hours in the hospital on day 1.

The second day includes a visit to Isaiah's pulmonary doctor to check in.

It will be a busy week for sure.

For now, we are enjoying the quiet week, the long weekend, and feeling grateful for the reason for that long weekend. <3

And napping.  There will be lots of napping. ;-)

Have a happy and safe Memorial Day weekend!  I'll be taking Monday off from the blog but I am sure there will be a big 'ole post full of good news about the MRI on Wednesday.  :)

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