Tag Archives: Chiari

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

Medical Bracelet

For those of you that have read Gerrit’s Chiari story and where awhile back I decided to get him a medical bracelet, well, I just want you all to know that he is wearing it and truly isn’t apprehensive about wearing something that says “fragile neck“. I had thankfully misread his reaction. He leaves the room when I talk about his Chiari because he can’t stand any talk about the inside of the body! He abhors medical talk. No chance of him being a doctor I guess. bummer.

Anyway, just wanted you to know that he is gladly wearing the bracelet and was sweet as can be about it.

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By the way, he has a much overdue MRI coming up on September 21. We have been battling working it out with the insurance company for over a year now. “Our” hospital no longer has a pediatric neurosurgeon, so they want to send us to another hospital in Atlanta, but they don’t take our insurance company. (Even with all this hassle – I still don’t want Government provided health care.)

I’m not worried or nervous about this MRI. He is doing great. But I will admit, it is nice to get the reassurance from a neurosurgeon every couple of years that everything is where it should be!

🙂

hi-d

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Filed under Chiari Malformation

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

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Filed under Chiari Malformation

A Needless Little Scare

Maybe I am just a bit jumpy when it comes to Guy. I’ve been down this “we need to talk to you” road before from his doctors. It wasn’t a pretty road to travel. This morning I got a call (fairly early for me) and didn’t recognize the number, so I didn’t answer it. I checked the messages after I was jostled out of by by a bolt of lightning. No really… that is not just descriptive writing! It shook the house, the bed, the windows… the dogs went berserk… the kids came running… etc.

Anyway, after listening to the message from the dermatologist office to call them back, I did. Was put on hold and transferred all over… you know the drill. When I finally got to the right place, she said the doctor had just ducked in with a patient and he would call me right back. Okay… it was only five minutes… but do you know how much you can conjure up in five minutes? A whole heck of a lot of yucky stuff.

See, something similar happened when he was three, except they called to tell me that “not only is the Chiari back, a cyst is in his spine and it looked cancerous… and oh, by the way… your doctor has left and we don’t have another one for you… we’ll give you a call back when we get this figured out.” THREE DAYS. Three days later they call back and have a doctor for me to take him to. It was a mess, Iwas a mess. I had literally planned his funeral. Sick, but true. I walked around in a fog of grief for three days. You have to understand… those of you who might be reading this and haven’t read his story… he had already had one brain surgery… at two and a half years old. Only six months ago. And now they are telling me that he may need another one and on top of that it looks like a cancerous cyst in his spinal column. What would you conclude? We were lucky blessed the first time… but this time?  Yea… you have to read the story.

So… in five minutes, I get the call back from the dermatologist… and all he wants is for me to mark the spot where they took it… since it is under his arm and in a place with very little reference points. I said “How am I supposed to mark it? With a sharpie?” He laughed and said that that is what he would probably do! That’s all. No bad news. Not bad at all. Fine, perfect. No problem. Nothing to worry about. At least for today.

Wheeew. I don’t like that kinda scare. I would rather be knocked out of bed by lightning.

:-/

hi-d

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Filed under Real Life on My Planet, The boys

My Interview

I have to say that I was quite nervous this morning before they got here. The boys all got showers and put on nice clothes… which is saying something around here! We also had a wonderful prayer time for about 5 minutes before they came to the door! Each on the kids said a bit… and it made me feel so much better. They have so much confidence in me. It was touching to hear their plea to God to calm my nerves and help me portray His love in my words and actions! Even Harrison had a beautiful (long) prayer!

The interview went well. The journalist was very nice and we had a lot in common. She also has a son with Chiari Malformation.  She was great and all I can hope for now is that I didn’t say anything completely stupid and ignorant!

The photographer was a very nice gentleman, and told us some great stories about his dogs while we waited for the journalist. Nice man.

I was more uptight after they left for some reason… and then it hit me that I needed to eat! I had forgotten to… and it was almost 2pm by then. I guess 1/2 a pot of coffee doesn’t rate very high on the nutrition scale!

After eating some lunch and having a laugh with the boys, I am doing much better!

They (the boys) are having fun with the votes that are going on today, thanks to Sandy… and then it occurred to me that I should send out an email to my friends and family as well… to have them vote!! I don’t really know where my head was all this time… but the counts have gone up and all the wonderful comments have been very educational for them. In fact… they are anxious to do another campaign latter on… and they will use what they have learned to write up their speeches a little differently! It is a great way to get them involved in politics!

hi-d

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Filed under Art Projects, Real Life on My Planet

Gare-Bear Journey Part VII

Click here to read more of Gerrit’s story. Or not… it’s your choice!

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Filed under Chiari Malformation