We're still here. The hospital, that is.
I wouldn't hesitate to say that the past 2 weeks have been the most challenging of the past 10 months (and trust me, that's some tough competition).
Shortly after making our big decision, we did what we do best. (Actually, MC did what he does best which prompted us to do what we do best.)
MC pulled the unexpected and we changed our minds.
Prior to making our decision, we had recently started weaning two of his seizure medicines (Keppra and Pheno for our OS fans) which allowed his new doctor to see what he's like in a more natural state (i.e. not knocked out on enough sedatives to topple a 500 lb man).
I was the first to get a glimpse of the wild and free MC, and sadly, it was not pretty.
He was violently seizing in a pattern I knew to be indicative of infantile spasms which prompted me to do what any good SNandMCK mom would do-- grab my camera and begin recording.
His doctor was able to confirm the movements which meant that MC was now displaying the typical seizures that would correlate with his EEG pattern.
In sum, the benefits of using the riski-er drugs rose, and we decided that in addition to the Ketogenic Diet, we would start MC on Vigabatrin as well. After several days of withdrawal seizing, we now wait to see what effects the new therapies might have.
And while I'm hesitant to put it out there, there's a possibility that the waiting could take place at MC's Home as early as next week.
Which would be fantastic. As this hospital livin' stuff with a homebound ten month old is far more challenging than it was previously with a hospital toting luggage-like infant.
Particularly, for a dog named Carlos.
I wouldn't hesitate to say that the past 2 weeks have been the most challenging of the past 10 months (and trust me, that's some tough competition).
Shortly after making our big decision, we did what we do best. (Actually, MC did what he does best which prompted us to do what we do best.)
MC pulled the unexpected and we changed our minds.
Prior to making our decision, we had recently started weaning two of his seizure medicines (Keppra and Pheno for our OS fans) which allowed his new doctor to see what he's like in a more natural state (i.e. not knocked out on enough sedatives to topple a 500 lb man).
I was the first to get a glimpse of the wild and free MC, and sadly, it was not pretty.
He was violently seizing in a pattern I knew to be indicative of infantile spasms which prompted me to do what any good SNandMCK mom would do-- grab my camera and begin recording.
His doctor was able to confirm the movements which meant that MC was now displaying the typical seizures that would correlate with his EEG pattern.
In sum, the benefits of using the riski-er drugs rose, and we decided that in addition to the Ketogenic Diet, we would start MC on Vigabatrin as well. After several days of withdrawal seizing, we now wait to see what effects the new therapies might have.
And while I'm hesitant to put it out there, there's a possibility that the waiting could take place at MC's Home as early as next week.
Which would be fantastic. As this hospital livin' stuff with a homebound ten month old is far more challenging than it was previously with a hospital toting luggage-like infant.
I just want to give you a big hug! No one can understand what you are going thru, it is smth like hope for the best, prepare for the worst, and take it one day at a time plus trying to explain, reassess as everything unfolds randomly while you think and act as if you have some control over the situation...
ReplyDeleteMC needs a superman costume too. :-)
ReplyDeleteAnd so does mommy and daddy now that I think about it.
Princess is looking as adorable as ever.
Would you believe me if I told you that he has several:) He is SUCH a superhero in our eyes.
DeleteOh yeah - I would DEF believe you. He's a super hero in so many of our eyes. As is your whole family. (You should totally get the Incredibles costumes!)
DeleteSo that video made me crack up. Scarlett is one fast 10-month-old! Carlos could barely keep up...
ReplyDeleteAnd hoping that some of the new therapies work for MCs...
so sorry to miss you guys in DC. (Sad face)...but totally understandable considering all that's unraveling.
Big hugs.
I got progressively more sad as I looked through those amazing pictures of your visit! So glad, however, that it was such a success and really great time. Hugs to you all!
DeleteHey you MC looks like such a strong guy, just letting you know I still have you both in my prayers. You have world of people who think and pray for you and your family.
ReplyDeleteMichael
Biggest hugs
ReplyDeleteYou definitely have prayers coming in globally! they're continuing from the east coast for MC, your family, you and your seemingly unflappable strength...
ReplyDeleteAs always prayers and appreciation for your wisdom and flexibility. A delight to see Princess in action and know what a joy she must be in your world. Speedy and clearminded in her intent. Hugs..... Old Ca grma.
ReplyDelete