Oh, for the love of...

>> Wednesday, August 21, 2013

The last 48 hours have been very busy. Good, but busy.

First, Bug had a wonderful appointment with his Neurologist. Bug will be doing IVIG tomorrow, he may be changing medications in a few months, depending how the IVIG goes and he WILL be doing some kind of supplements if his second set of blood tests comes back as wonky as the first. And a few other things...awesome things...but about those later.

Yesterday was Bug's first day of school for the year. He made the van, maybe his LAST trip since I was told that he would be riding a Bus, a big shiney new bus with A/C in the BACK of the bus, by the end of September....so what does he do until then? He can't ride a bus with no A/C. He will seize. But he made the bus that day and all seemed good. One seizure before the van but recovered nicely.

I took my sister back to Ogden and came back in time to not be too late to my meeting. Ava was less than cooperative but it worked out and I didn't look too unprofessional. I hope.

Aiden, Ava and I picked up Taylor and waited for Bug. He got off the van and I noticed dried blood in his nose. No notes. Shari had no idea what had happened. He has been seizing 5-8 times a day and NO yellow papers? SOMEONE missed SOMETHING. Oy. All three had noodles for dinner and Bug had his AND some of Ava's. Cool.

Three kids got in the bathtub and two got cleaned, one climbed out because his sister was pissing him off and he had 2 more seizures. So...I saw 3 seizures...how many did I miss while he was at school?

Ava went to bed, followed 30 minutes later by the older two. The youngest...smiled. And smiled...and laughed...until midnight. Yawn.

Onto this morning. Aiden slept until 5am when he ate and went back to sleep. At 7am I heard (and felt) THUD. I looked at the screen and saw Bug launch out of bed (there is a delay in the video). I threw on my robe and went up to see a twitchy, but not seizing, Bug on the floor. Ava was standing in her crib saying: Mama, Mama, Mama...blah blah blah...Mama. Taylor perked up: Morning Mom! Hi Tay, it's time to get ready for school.

I carried Bug, Ava tore into the water bead things Tay HAD to have for Christmas and began snacking and we eventually made it downstairs while Ava sang the theme song to SpongeBob. Got it: Put in SpongeBob to keep her occupied.

I medicated Bug, put on his helmet and I rode Tay until she got ready. Changed two diapers and got one lunch ready. Three kids were dressed and got into the car and one sleepy baby was awakened and changed and smiling, put into the car. Tay made it to school two minutes late. Hooray! Not bad.

Forget this breakfast thing...I went to McDonalds and got the meat-eaters 4 sausage biscuits. Ava ate two of the sausage patties and threw the biscuit parts on the floor. Bug ate maybe a half of one and refused the rest. Uh oh. So I let them out, fed the baby and called PCMC. For twenty minutes.

'We don't have a record of your appointment for tomorrow. Hold on and I will get this worked out.'

OK, can do...hold music.

'Annette? Still there? I am calling another nurse' 'Yep, I'll wait'.

Ava: Mama?

Me: Are you poopy?


The smell says otherwise. I hold the phone with my shoulder and change her diaper. She leaked. One outfit down. Aiden begins to wiggle next to me. I get Ava up and pick up Aiden with the phone still on my shoulder when I hear: Still there? And then...some explanation of something that I missed because at that moment...Bug dropped his toy, his very heavy, musical toy on my foot. I did not swear, I did not drop the baby or the phone. But I DID almost cry. It hurt.

James comes on the phone and explains all is taken care of and we are scheduled! He was charming and apologetic and it was great. So I limp into the bedroom and get Ava another outfit while talking with James. I said some weird things, I think, but all is well.

All of us get into the car again and off to Bug's School. We get there, I wear the baby and hold hands with both Bug and Ava. We walk down the hall and his classroom is empty. We walk to the PE room...and it's empty. We walk to the sensory room...and it's empty. We walk to the playground...yep...empty. We found them in the Library and Bug LAUNCHED to get away from me. I think he likes school.

I update the Nurses about no more mid day clonazepam, we sign Bug in and head home. Oh, I left out the part about Ava screaming her guts out at Bug's school. It was less than charming.

So we are home, Aiden is asleep and Ava is making explosion sounds with her mouth with playing with a power cord. Wait...what? Be right back.


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What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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