Calm

Things have been calm the past week. No issues to report except for Nate getting sassy! He is saying the funniest things lately. He sounds so grown up. I love my family.

Done

I called at 8am this morning and the neurologist still had an open 9:30am new patient spot. We took it! The doctor was very nice and informative. He was kind to Nate and that was nice. We went back for an EEG this afternoon. The doctor basically said he really thinks Nate had a vasovagal response. You can read about that HERE. We will know for sure tomorrow I guess when we get the results of the EEG.

IF that IS what it was I want to make SURE his heart is indeed ok. I would like to get another EKG and ECHO to double check.

Neuro and Voicemail!

Ugh. I am the WORST about checking voicemail. I dont do it. Hardly EVER! Well, I called the neurologist office on Friday morning and asked if we could be put on a cancellation list so we dont have to wait a month to see him. The lady told me I could but it was quite long and we probably wouldnt be called. 


2:16pm-missed call. "I dont know that number"


2:45pm-Im out of work and notice I have a new voicemail. "Eh, I dont need to check it"


Fast Forward to Saturday afternoon when I decided that I better check my voicemail. 


That same lady had called saying they had a cancellation for MONDAY and if I wanted it I needed to call her back! UGH! And of COURSE they were closed. I am calling FIRST THING Monday morning hoping to get in!

Blink Of An Eye

Yesterday we heard the news of a friend of ours grandbaby having a cancerous tumor in her abdomen. Praying for their sweet baby girl (13 months). Praying for COMPLETE healing from this cancer. 


Thankful today for my kids who are healthy. These things Nate deals with are indeed VERY REAL but so thankful he doesnt have anything much worse. Like nasty ole cancer. Such a HORRIBLE HORRIBLE disease. 


Please pray for sweet Kamryn.

Pieces of Nate

There are many pieces to Nate. It is as if his little body is a big puzzle and the doctors have been piecing him together for the last 6 years. I tell you what, I will be SO glad when and if someone puts him together!


I was just reading about seizures and auditory processing disorder which Nate is thought to have. He didnt "fail" the test at 5 years ...almost 6 but they said he needed to be retested at 7 because he was actually too young. Frustrating? Why yes. :)


Who knows really....hopefully the neurologist will be able to put a few pieces into the puzzle of Nate. Until then. Enjoy this sweet smile.

Trusting

I realize that in the grand scheme of things I have NOTHING to complain about. Many, many parents have it so much worse. Many children are sick and will lose their lives to their nasty illness. BUT, that does NOT mean that I have no right. Or that Nate who is the one who has these things going on in his body doesn't get to hate it.


He is a trooper. He NEVER complains. He was born with XLI and has horrible skin. In the summer it looks great and feels pretty good but the rest of the year it hurts. It pulls and stretches and hurts him. He doesn't sweat well and overheats very easily. He itches most of the time. Yet, he doesn't complain. If only I could learn a lesson from him. My sweet, sweet boy.


Tuesday night he had an "episode". I assume it was a seizure but I guess Im not 100% sure. I had just pulled his first tooth. He was SO excited. He got a funny look on his face and I asked what was wrong. He was kinda out of it. He said "I have a headache" and layed down on the bed and that is when his eyes rolled back and he made floppy type movements with his arms and legs. To be honest, I was SO freaked out when I saw his eyes roll back and his face that I didn't pay a whole lot of attention to the rest of his body. I immediately thought he was going to be gone. I know I shouldn't think that but I did. 911 was called and we went to the ER where they did a CT and blood work and everything looked fine. His pupils were dilated but his vitals were good and he could answer questions even while in a very strange state.


You see. Every time something like this happens to my sweet Nate I flip out.  I feel like we are living on borrowed time and each time something happens I think "this is it, I'm going to lose him".


The truth is that we are ALL living on borrowed time. He isn't "mine". He is Gods. I am being allowed to raise him up and love him but he isn't mine. Letting go and trusting with my children is the hardest thing I have to do. I fail miserably at it. But HE is trustWORTHY.

ADHD

There are some interesting studies that show that boys with XLI are at an increased risk of ADHD particularly with inattentive subtype. Check out this checklist...my Nate gets ALL check marks!


I found an article some time ago that suggested that IF your child with XLI has this type of ADHD then the meds out there wont work the same as if your child has ADHD from another cause..didnt realize that. Interesting.