Tag Archives: syringomyelia

And the Son Shone Again

Today started very early for Dave, Gerrit and I. We aren’t early risers, but we managed to get to the children’s hospital, in downtown Atlanta, by 8:00 a.m. – right on time! (with morning traffic, it’s a little over an hours drive.)

After he was registered and “tagged”, we headed over to radiology and prepared for the “tunnel”! We found out that he was getting dye (so the doc can see everything clearer) and had to have an IV. No big deal really… for us. He wasn’t real happy, but nobody likes getting an IV.

 The nurse just loved him because he has such wonderful big veins! She actually said, “OH Gerrit, I love you! You’re every nurses dream!” I am sure after trying to get IV’s into tiny little arms every day… his big veins were a welcome break.

He doesn’t stomach seeing blood very well, so the nurse covered up the area where it had spilled all over (as it came pouring out of those great veins!) with a towel!

At the last-minute I opted out of going in and sitting with him during the scan. He can’t see us anyway, it’s VERY loud, the chairs are very uncomfortable, and I had some things to do along with me, so I stayed in his little room with the news on. It was actually nice. I got a lot done!

So he and his dad went off to the big magnet tunnel.

Even though we joked around, and laughed about stuff, tensions were high. It’s like we couldn’t wait to find out the results – and yet we wanted to enjoy these last few minutes of “normal”  before having to deal with the stress of the bad news. Not being pessimistic really… just more emotionally prepared this time.

Here’s last years visit.

After about a 45 minute scan, we headed over to see the doctor.

(Just like last years picture only he’s bigger and I’m older!)… right before the doc came in.

Well…

 

 

 

 

its GREAT news!!

The cyst in his spine has not gotten any bigger. It’s not any smaller either, 😦  but just so long as it’s not bigger… we are good to go! No exploratory surgery. No drainage device put in. AND… we can go two years until the next MRI (unless he has some symptoms of course – then we would head back in before then).

We are so grateful, excited, elated and crazy happy! We praise the Lord for answering our prayers! And we want to thank all of you who have been keeping him in your prayers too! Thank you, Thank you!!

 On the way home, as the sun came out from behind the rain clouds, I thought of all the trips we’ve made up there to the hospitals. All the IV’s that kid has had in his lifetime, and how many times we, as his parents, have had to hand him back over to God. I was feeling so grateful and blessed right then… knowing that God has had Gerrit in his arms the whole time. He’s been holding us as well. I know he has great plans for Gerrit. Great plans… and I can’t wait to see what those are!

So, thank you again for your kind words and prayers for Gerrit.

Now, off to a good nights sleep!

Hugs to all,

hi-d

 

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Filed under Chiari Malformation, In The News

Lean, Mean, Running Machine

(He’s not really mean, but clean just doesn’t sound cool for a teenager!)

Sunday, Gerrit ran in a 5K race that our pastor puts on every year to raise money for our church school. I help out every year, but none of my boys have ever ran in it. Last year Gerrit wanted to, but sprained his ankle a few days before the race.

This year, although he didn’t train real well, he was ready for it.

It was so hot and humid I worried about him the longer he took out there… but he did fine. Came in first for his age group!

I am proud of him. Now I think he’ll actually “train” some for next years!

Do you see him?

Coming on in to the finish.

Nice job! For not training before-hand, I think he did great!

He was a little embarrassed about getting this because there were only three in his age group! But hey… he was first out of those three!

I do hope that he really gets into this running thing… it is something he can do without worry about it affecting his Chiari Malformation and syringomyelia.

He won a prize in the raffle too! A coupon for money off at a restaurant – we’ve never been to. Will have to go now!

I didn’t let Harrison run this time. He needs to work up to three miles. He’s only run a mile so far, so maybe by next year he’ll be ready! He did a lot of running around, playing with his friends during the race anyway and later at home I found him like this:

🙂

hi-d

 JJ and Darren were not mentioned because they were not there. Just feels weird to only talk about two of them!

 

2 Comments

Filed under Chiari Malformation, The boys

Help or Hinder?

I think I may have scared him again.

I hate it when I do that.

Gerrit and his Chiari… it is such a touchy subject.

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I ordered a medical bracelet for him and I had him pick out the color and style. You know… I wanted him to like it since he was going to wear it. Well, he was okay with that part… but then when I started writing out what we needed engraved on it… he darted away. Coincidence? Maybe… but not likely. That has been his MO on this subject since he could understand what it’s all about.

He needs to know about it… but how much is too much?

He needs to be aware of it… but not scared to death of it.

He needs to be careful… but not stop enjoying his life.

He needs to be educated about his type of Chiari… but I don’t know how much he can handle at this age.

He needs to understand that his neck is fragile. And I think he doesn’t like that word. I wish I could change my order and take that word off. I tried… but it’s too late. I didn’t think about that being a problem until just a little while ago. You know how boys like to be tough and strong? They want to be the hero? They want to do the rescuing… not be rescued. Well… I can see now how it might be a little hard to feel all tough when you have the word “FRAGILE” engraved on your wrist.

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I don’t know… am I helping him or hindering him?

Now I have guilt.

My most concentrated effort from here on out is to strengthen his faith in God and teach him to lean not on his own understanding (or mine!), but that of our Saviors. Nothing will happen to him that he (or I) can not handle while holding onto the Lords hand. With Him all things are possible. I pray daily that Gerrit has that belief drilled-tattooed-cemented… or actually… accepted into his heart!

This medical bracelet is just a precaution. I realize now that as he gets older and is away from home more and more that the chances of him getting injured or in an accident without me or Dave around is increasing. This is just so the EMT’s will know to stabilize his neck.

And if for nothing else… it’s for his mama’s own peace of mind.

🙂

hi-d

3 Comments

Filed under Chiari Malformation

Gare-Bear…his journey…

Click here to read Gerrit’s Chiari Journey.

The day before surgery
The day before surgery

1 Comment

Filed under Chiari Malformation, Real Life on My Planet