We had our long awaited appointment today with the pediatric neurologist for Noah.
I loved her. She was patient and spent over an hour with us. Noah wouldn’t let her near him but she was able to assess him a little by watching his behavior and by watching us interact with him. She basically took a lot of info from me, and from his IEP, progress notes and a letter from his home teacher about her concerns.
He’s got a lot of testing ahead which I’m anxious about because he has severe “white coat syndrome” and I hate seeing him so terrified.
He will need a brain MRI, urine test, lots of blood work to test chromosomes, lead, gluten sensitivity and more, and an EEG. How are we going to get 20+ leads on to his head, and keep them there long enough to get some feedback??
We will have to sedate him for the MRI so we decided we will have them put the leads on his head for the EEG while he’s sedated. And pray that he doesn’t flip out when he wakes up.
The dr wants to see if he has seizures while he sleeps that may be interrupting the brains ability to remember things that he has learned when he’s awake.
Because his Autism was a regressive onset ( he was developing perfectly up until 18 mos) she said there’s a possibility that seizures while he’s asleep could be the problem.
There’s no way to know by looking at him because they wouldn’t be the type of seizure that causes convulsions but they may be interrupting his sleep. Hence, the 2am wake up on most nights.
So, that’s what we are up to these days
Sent from my iPhone
My hubby and I have always enjoyed spending time together. We try to get out as much as humanly possible considering we have 4 yr old twins, one of which is on the autism spectrum. Years ago, before the twins came along we had a very full, busy social calendar and several couples we would go to dinner with or have over for drinks and play cards. Those friends fell away. One by one they just stopped asking or we stopped going. We were overwhelmed with life and the boys. We were, and still are sleep deprived. Our priority became spending more one on one time with each other if we did get a free evening. So, we go for nice quiet dinners or a movie. Sometimes we go to watch a live band, which we both love. We love to dance. But recently we have been saying ” wouldn’t it be nice to have a couple of friends to hang out with?” How do you make new friends at our age? All of our neighbors either keep to themselves or aren’t our cup of tea. The old friends we used to hang out with…well, I think we out grew them in a way. So where can we find friends? Do we take out a personal ad? That sounds weird like we are swingers. Do we look on Craig’s list? Should I be more outgoing? I wish I knew what it takes to connect with other couples. In the past we have had the issue of liking one half of the couple we would hang out with and tolerating the other half. I often wondered if I was the half that was only being tolerated at times. Maybe tolerance is the answer. I’m going to give it a shot. Maybe I’ll have a cocktail party around Christmas. Any suggestions?
-friendless in crazy town.
As we headed west towards the coast in the compact rental car my husband asked me, ” are you happy with your life?” and I said “yes, I love my life” and I asked him the same and he answered with an emphatic “YES!, how can I not be happy” as he took my hand and kissed the top of it.
I can truly say I have found the secret to true happiness. It took almost 50 yrs but it has arrived. Happiness can be so many things and for me it’s contentment. Now you may think contentment is lukewarm. But being content means no drama. It’s knowing you are right where you belong. It’s knowing that Gods plan and His timing may not be our plan or timing but it’s the best. Contentment is loving going home at the end of the day. It’s being silent and being ok with that. It’s making eye contact with your beautiful little boy with autism. It’s waking up and being strong and feeling healthy.
Now that my firstborn has become a mother, it’s that circle of life. That adds to my big box of decorations I hang on my happy tree.
We definitely create our own happiness by what and whom we surround ourselves with. My happy place isn’t perfect but it’s perfect for me.
I’m grateful that I am able to recognize that I am so blessed.
I’m nostalgic as I close out the first half of a century of my life. I’m also looking forward to the next 50 years.
5 foods?? chicken,apples,tomatoes,potatoes,cookies… can you get cookies on a private island?
I have Multiple Sclerosis. I was diagnosed about 10 months ago. Im in remission and I feel good. I opted to take daily injections to reduce the amount of exacerbations and keep the disease in check. The shots are part of my evening routine and I dont think much about it.
My sister called me today, we dont talk that often and were going down the laundry list of “how’s this one and how is that one.” Then she said “how’s the MS?” I said “what?” so she repeated it. I said “fine” I don’t think about it much and I forget sometimes that I even have it.