Monday, September 21, 2009

Da$$ seizures!

Jude's seizures have greatly increased, and I am not sure why. He has several small ones yesterday, and then two large ones last night. They are even waking him out of his sleep, and this concerns me. I also noticed he was rather raspy sounding last night, but again that could be the saliva causing issues. So it's a question of the weather, illness, or if his medication needs adjusting again. I wonder if we will ever fully be free of seizures.

Jude overall seemed pretty happy yesterday even throughout his seizures. He smiled a lot, and interacting with me some, but not a whole lot. Jude still cannot reach, grab, and he rarely makes eye contact. He will however smile, and giggle if you talk to him, and cuddle him. My friend Fleck also witnessed Jude's temper tantrum I always talk about, and she just said "oh my!". So he does have a little temper on him if he doesn't get his way.

I did hear back from the adaptive equipment facility, and I have been assured the stroller has now been ordered. I was told that there was a coding issue with the nurse that was handling the order through insurance. I was also assured that the bath chair should be here by Friday, and I hope that is true. I am anxious to see how Jude handles his stroller, and if he likes it.

Jude in his skater outfit this weekend:
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Well Emily is off to camp this weekend and I am going to miss her. I am praying for her safe journey to camp, and home. She was very excited, and barely slept last night so I am hoping she has the energy she needs for the day. While I was there I witnessed her friend that is special needs, he was just as excited as the rest of the class. He was functioning, not in a wheel chair, but it was obvious he had issues. I was so happy that the children included him so willingly, and how well he fit in with everyone. I found myself hoping that Jude would be able to participate in events like this, and be accepted by so many of his peers.

Here is a pic of Emily with her two friends I reference on my blog a lot. They are the three musketeers, and pal around together all the time. They are also the ones that always help Em put her smile boxes together. Maddie always helps her too, and is off on the trip with them.
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Also, my sister is getting married this weekend, and I am very excited for her. My sister, and I were very close, and I watched her a lot until she was two. We were then separated for almost 16 years, so this is such an honor for me that I will get to attend her wedding. She is also now one of my best friends. I got to attend her bachelorette party this weekend, and it was such fun seeing her all smiley! She is a youth pastor, so be assured the party was under control :). I wish her a lifelong marriage full of happiness.

My sister being silly:
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jocalyn said...

I think the seizures are the reason for the temper tantrums. Its a ripple effect. I HATE EFFING SEIZURES too. GRRRR.

TMI Tara said...

I'm sorry about the seizures! I've been studying the kytogenic diet a lot lately. Have you looked into that at all? It's supposed to really help with seizures.

I am so in love with his skater outfit. What a cool dude!!!

Candace said...

Awe Jenn,
I am so sorry. Seizures are such a weird thing and so scary. I will pray that they slow down. Every time Faith has one we call and stir up a big hornet's nest until the neuro does something to intervene. Do you guys call the neuro frequently for his?

Bronx Cataldo's said...

Feeling your pain right now. Finnian is having right bas....... of seizures off and on for a few days. We go to the docs on Friday to see what they are going to do about his meds because of the new seizures. Reduce the meds and hopefully stop the seizures around the brain stem but at the same time that will probably set off the surface seizures. Aaah no wonder the head is going gray at a fast rate

Katy said...

seizures suck! I'm so sorry that Jude's are escalating.

I read another blog: and they just heard about a new medication for IS available in the US--might want to check out their blog.

Congrats to your sister on her big day!