So What’s Going On with Isaac?

I know you all like to know how's he doing, so here's a nice, long update for you.

On the sleeping front – Isaac has slept several nights in a row.  We are ecstatic about that, as you can well imagine.

About three weeks ago, his neurologist increased one of his meds, and we have seen wonderful results.  He is sleeping at night.  His vision to his left has increased.  He is looking to the left and is noticing things in his peripheral vision on both sides.

~In our backyard, reaching for a potted plant~

Leftreach

There are also some results that are not so wonderful.  He has an opinion about everything.  He wants all of his needs/wants met NOW, and he doesn't like to be corrected.

~I call this his "I can't believe she just told me 'No!' face"!!!~

Noface

His manual dexterity has increased and his strength has seemingly tripled.  Both of those things lead to pinching others and grabbing his tubes and syringes during feeds.

So the seizures are under better control, but Ike is NOT!!!

I know — it's kinda funny and kinda not.  I'm glad his little brain is working better; but it's hard to figure out how to discipline and train a child who has no idea how strong he is, does not understand he is hurting other people, can't reason right or wrong, and has no concept of time.

We are using many of the same phrases we used when he was younger before the seizures started.  We figure those may at least sound familiar:

  • "No pinching!"
  • "Easy…"
  • "Be patient."
  • "No tubie!"
  • "No hands."
  • "First…then."
  • "Inside voice."

It seems like a lot of negative things, doesn't it?  But most of Isaac's interactions are very positive.  We rarely have cause to scold him, except when he's experiencing these new levels of mental clarity and he has to be reminded of things.  Honestly, he still doesn't fully understand some of the phrases we use, but we try to be consistent and firm and show him what we mean.

I would guess that is much like parenting a "normal" toddler, right? ๐Ÿ™‚

On the nutritional front – Isaac weighed in at 68.3 pounds at his weigh-in last month.  We have had to accept a new formula for him, and we were not happy about that.  The only all-food based formula (Compleat) is no longer covered by his insurance company.  We did check into buying it ourselves, but it would be roughly $600 a month!

So we are giving him a formula that his insurance company will cover, but we are not pleased with the amount of sugar and synthetic additives in it.  We talked to the gastro doctor about that today.  He said there was no way to get the insurance to cover the other formula. :o(

Some things we can change.  Some things we can't.

On the vehicle front – we still do not have a wheelchair-accessible vehicle.  Doug is still carrying Isaac to the truck and quite precariously getting him into his carseat.  It is getting harder and harder, because Isaac is getting so heavy and so long.

We are doing research right now, and have heard about a company that may alter a mini van for him at no cost.  Now we just praying that the Lord will bring a van to us that we can afford…um, basically a free one would be really great! ๐Ÿ™‚

On the mommy and daddy front – Doug is enjoying teaching SO much!  I am so grateful that the Lord has given him this opportunity.  I have been doing "ok."  My back has actually not been too painful lately.  I started taking a couple of supplements that seem to be helping.  I thought I was finally going to get back to church and singing this past week.  Unfortunately, I was sidelined with a horrible cold and sinus infection.  I am finally feeling better now.

Doug and I had a really nice morning today, as he had the day off.  We went out to a yummy (completely unhealthy) breakfast at Denny's.  Then we went to a couple of quaint stores in a nearby town.  One was an antique store, where I found some fabulous vintage buttons to use in my jewelry; and the other was full of all sorts of cutesy stuff and an entire wall of Vera Bradley!  It was ni-i-i-i-ice!  I was finally able to see the purses "in real life", instead of just pictures online.  I definitely found a style that I really liked and made sure Doug saw that one, too! ๐Ÿ™‚

Afterwards, we took Ike to Orlando for the visit with the gastro doctor I mentioned above, and made one important stop on the way home:

~I've discovered I like Barnie's caramel macchiato and that we love Whole Foods hummus!~

Barnies

Well, I guess that's it for us…congrats to you, if you persevered to the end!

Thanks for reading,

Alesha

 

8 Replies to “So What’s Going On with Isaac?”

  1. Glad to hear all the updates, have you talked to the doctors about the kiogenic diet? Continuing to pray for you

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  2. Hi Valerie, thanks for stopping by. We tried the Ketogenic diet a few years back, and it just didn’t help at all. Most of Isaac’s seizures come from physical damage in the brain, and so the altering of the body that happens from the diet just didn’t stop the seizures. We’re on meds now, but it will be a life-long process of tweaking them to keep him steady. God is good and gives us wisdom as we need it. ๐Ÿ™‚

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  3. Woohoo! Sounds like a great day! Go Isaac! I’ll admit I was even cheering when you said he was getting into things! ๐Ÿ˜‰ What great progress!

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  4. Howโ€™s Isaac now? Anyway, I know in times like this, itโ€™s not easy to purchase a wheelchair accessible car but I still hope that youโ€™ll find a way to purchase one. Having one will surely be a lot of help to you and most especially to Isaac.

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  5. How are things going on now? Were you able to purchase a wheelchair-accessible vehicle already? I hope youโ€™ve found a way to make everything easier. By the way, howโ€™s Isaac?

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