Thursday, May 11, 2017
Thursday, May 4, 2017
For the last couple of days of Spring Break, Andy took the two oldest boys down south.
It sounds lame but I'm not a huge fan of traveling with Ben...it's difficult... so I opted out and then Abby decided she would rather stay home and play with friends...so our family was split in half.
Her friends all ended up doing things with their families so she was stuck with me. We just took it easy, made "slime", watched movies, ate fun things and then my parents kindly watched Ben for me so she and I could go to Beauty and the Beast. That was a fun evening.
But now for the boys...
I don't feel qualified to comment much on the pictures since I wasn't there but I wanted to get the experience in the blog book for them so...
This is a tree at Temple Junction planted by Edith Marsing, Andy's great grandma.
It's in the middle of no where and the plaque says "Give me a drink".
There is a disc golf course in the valley so they played a few holes, I mean baskets...
Interesting note about the picture above...When I was young I went with my family to Moab and we did the hike to Delicate Arch. However, when we got to this point on the trail I sat down and would not go any further. For some reason, that drop off and bend in the trail frightened me. My family members told me the arch was right around the corner but I wouldn't go. My kind Grandma said she would wait with me so we sat there while everyone else went ahead and enjoyed the arch. Of course, I regret that now and maybe someday I'll go back and finish the jaunt :)
I'm proud of my boys for doing what I wouldn't do...
Matt waiting in line to get his picture under the arch...
Somewhere else I don't know...
They all said they had a good time.
I'm glad they were able to go and enjoy some male bonding :)
Ben has had an interesting (but not necessarily bad) time of it lately.
He usually clusters approximately once a week.
In April he went three weeks in between clusters. He had some random seizures here and there in those three weeks but we never needed to administer his Diastat to stop several in a row.
(at Grandma's house sleeping it off)
He had several seizures within a 24 hour period at the very beginning of the month but they were more spread out than usual and so I held off on the Diastat. His last one was late in the evening. He just lay on the floor afterward which is normal, but he never really came around. After several minutes he will usually try to talk and get up and walk around (even though he doesn't have his balance). This time he was very non responsive, even when I put him in bed. He wasn't talking at all and his eyes were distant...he didn't even try to move. I fell asleep soon after I put him down and woke up in the early morning hours when it was still dark. Ben had not moved...and his eyes were open. I realized he had probably never fallen asleep! I snuggled down next to him. His eyelashes were on my cheek so I could feel when he closed his eyes. Many times he slowly blinked a few times in a row and I kept thinking he was finally falling asleep. He never did though...his eyes always opened back up into that blank stare. I started realizing, with the help of Google on my phone, that he was probably in non-convulsive status epilepticus (basically a constant seizure).
I don't think we had ever seen that before. He used to have convulsive ones years ago when we still didn't know his diagnosis. His longest one was 40 min. Thankfully, we were already in the hospital with him then. After much worry and prayer that morning, I finally decided I needed to give him the Diastat. It seems obvious that's what I should have done all along now that I look back on it but in the moment I was confused.
He fell asleep almost immediately after I administered the meds. I believe he even said, "Maimee" and I was able to take a deep breath and cuddle my little man without being worried any more.
Man, there are times when you wonder if 'this is the time he won't make it through'
Your mind just can't help but go there at worrisome moments.
I was so relieved when he fell asleep and so grateful for another day with our sweet Ben.
After that episode though he was still not himself for several days.
Anyone that knows Ben well, knows that he loves to line things up...trains, cars, spices from the spice drawer, magnets from the fridge etc. He is quite precise and particular about how they are lined up too. Always engine to caboose, nose to tail, front to back. He will move an object several times before it is exactly as it should be and then move on to the next one.
Two or three days after his status seizure I noticed him playing with his cars and trains and realized he was trying to line them up. Look at that poor little line! It made me so sad to see this :(
However, he is back to his neat lines again and it is a joy to see :)
Recently, after brushing his teeth, I went to rinse out the brush and noticed something stuck in the bristles...Ha! We never know when or where a tooth will come out...and I think I've mentioned on the blog before that we don't know where most of them end up...they're just all of a sudden gone. So it was fun to see this one's journey.
The last few pictures I just wanted to share because they were awfully cute.
I walked in to go to bed one night and found him like this...
(I caught him yawning in this one)
Totally out! The flash on my phone didn't even phase him :)
I'm sorry this became a much more lengthy post than I had originally intended.
I don't even know if it made much sense but there you have it.