Tag Archives: Arnold-Chiari Type II

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

I know, I know… but I Haven’t Forgotten About You!

Well, I had a post scheduled to appear this last weekend explaining my absence – but it didn’t. Hmmmm. Sorry.

I am so far behind on the news at this point I really don’t even know where to begin.

Yes… I’ve been stressed and very busy. I feel like I’ve been treading water for quite a while now and I’m tired! But the school year is coming to a close, and maybe this summer I can get caught up and organized like I’d hope to be.

Part of my scheduled post was wishing all you wonderful mom’s out there a very Happy Mothers Day! So… HAPPY BELATED MOTHERS DAY to all of you moms – and mom’s to be!!

My girlfriend Branndan and I were going to take off for the weekend (with our boys) to the beach, but found out that Dr. Ben Carson was coming to our church to speak. We didn’t want to miss that, so we waited until after he spoke on
Sabbath and then hit the road with our 5 boys and stayed until Tuesday. Not sure what we were thinking – spending Mothers Day taking care of our kids – but isn’t that just mothers for ya? 🙂

Hearing Dr. Ben Carson speak was wonderful. He is an amazing man. I stood in line to shake his hand and get his autograph. I longed to talk to him about Gerrit and his Chiari Malformation II – but it was not the place or time. I just hope that if Gerrit does need another surgery that we can somehow manage to get Dr. Carson to do it! It’s, of course, in Gods hands. Having Dr. Carson’s brother at our church may help us out in the future though!

The boys and I had a great time  down at St. George Island with Branndan and her two boys! It was beautiful weather the whole time. The only bad thing about the trip was the fact that my two youngest got VERY burned. They are SO fair-skinned… 70 block sunscreen, hats… they still burned. So badly in fact that their eyes were swollen when they woke up on the third morning. Poor kids. I feel like a shmuck letting this happen to them.

 They are almost done peeling now and will be fine. (Until they’re my age and have to deal with skin cancer.) 😦

***

Harrison played his last baseball game of the season yesterday. They lost that one, but the night before (Friday) they won – and Harrison caught a fly ball out in left field!! He also had his first hit of the season and eventually came in to score! I had started bribing him this week with five dollars a hit – even if it was a foul ball. He needed a push to get over his fear of the batters box! (Being as he was hit a couple of times in there and all.) It worked!! He’s now made 15 dollars! I should have done that a long time ago!

After the game the coach had the kids in a group and asked who should get the game ball. In unison they said “Harrison”! What a night! He was on cloud nine – and his percentage went up to 80!!! (Those of you that have been following Harrison and his baseball percentages this year will know what I am talking about. For the rest of you – you will have to read up on it at that “percentage” link!)

It was a great way to end his season. The game ball will go in a nice case and Harrison requested that it sit beside his trophy from Fall season. I’m so glad he got to have that positive experience. 🙂

***

I woke up yesterday morning to the mother of all migraines. I made it to Harrison’s game, but wasn’t real effective as the photographer that I usually am at the games. It was very hot and I was miserable.

After the game I came home and cried and moaned most of the afternoon. Took some of the “good stuff” (prescription meds) in the evening and went to bed. It was gone this morning – although I felt like I’d been run over by a freight train or something. What a frustrating waste of time that is. I get so mad that I cry. I can’t help it. I know crying only makes it worse – but I just can’t stop. It’s partly anger that causes the tears. I have lots to do and just get behind when I get those. HATE them.

I’m good now – and will try to catch up tomorrow. We still have a week left of school, but am happy to say that we have already completed our required testing and they are ready to be sent back for scoring. I don’t put much into those… but it’s the law… so we do it!

***

Kiki is fine – for anyone who is wondering. She is fully recovered and back to her annoying little self! She is getting along with our two other dogs (outside labs) just like she did before the incident – thankfully. So, the pet life around here is pretty much back to normal. (Although that’s not saying much!) Oh… and that reminds me… we let our beloved water turtle go. I have had a draft saved on that for some time now – just haven’t had the chance to post it. I will do that with photos soon. Jerri is now happily swimming around in a big wonderful lake with others of her kind! She was SO ready to go!

I hope to catch up on my blog reading this week and reconnect with some of you.

Sorry for the long space in between posts lately, but real life will always take precedence over my blog life! But that doesn’t mean I don’t think about all of you often.

Hugs to all,

hi-d

🙂

 

 

 

 

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Filed under baseball, Chiari Malformation, In The News, The boys, Vacations

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!

 

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Filed under Chiari Malformation, The boys

Gare-Bear Update

Please go to the Gare-Bear Update 9-09 page to the right, or click on the photo to read about his recent MRI results.

SeptD 040-b

hi-d

OOPS.

I can’t make the link work in the photo. So click HERE to read his update.

(dog-on-it. I’ve seen it done. I know it can be done. **heavy sigh** I can’t figure it out.)

Well, alright. I must be having a brain toot.

This time I forgot to add the link to “HERE”!!

Ugh.

Time for bed now!

🙂

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Filed under Chiari Malformation

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.

augustdaysB 216-cb

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

The Body Exhibit

Monday we got to take a field trip to downtown Atlanta and see the Body Exhibit.

(I hear now that it is highly controversial. I am not here to say anything about that. Wouldn’t touch the topic with a ten foot pole. But we did buy tickets to it… so conclude what you may!)

I was looking forward to it very much, but the boys were less than enthusiastic about it! Body parts, guts and organs are not something these boys appreciate. Don’t ask me… I thought boys liked that sort of thing!

It was fascinating! The only problem I have is that they didn’t let us take pictures. Sure, I understand why… but I still wanted them.

Right away my boys are groaning and moaning at all the grossness of it. I myself didn’t think it was gross at all. Fascinating yes, gross no. Gerrit in particular was having a rough time of it. I was thrilled that there was a skeleton at the very beginning that showed the spine, vertebra’s and base of the skull. I was merrily telling the kids (two other friends boys besides mine) about how Gerrit doesn’t have the back of the first three vertebrae… and proceeded to show them… Gerrit walked away with his hands over his ears. I wasn’t sure if he truly has a hard time hearing about what is wrong with him, or if he is just grosses out over everything to do with the body. But I chose not to “make” him stay and listen/look. He made it through the whole exhibit, but not without visual disgust and random wondering.

Harrison was just happy to be with his friend and I don’t know how much he actually heard me say… and JJwas okay with the bodies, he just got low blood sugar and almost passed out! He was “droopy” but made it through without incident! It was the perfect environment for passing out… a little too warm, dark and slightly claustrophobic. If there had been anymore people than there were in the rooms… I may have been the one passing out!

I was able to see the brain stem and cerebellum, and where they should be in a skull… so it was very interesting to me with reguard to Gerrits condition. (If you haven’t read about his Chiari II story – click here)

If I had it to do over again, I would have had our lunch first, then the exhibit.

Live and learn.

We went to the famous Varsity for lunch. The boys love it there and it has kind of become tradition to go there when field-tripping in Atlanta! NOT my cup of tea as far as food goes… but fun.

boys at varsity2-09

JJ (11), Tucker (8), Tate (11), Harrison (7) and Gerrit (12).

(If it wasn’t for Gerrit’s drink they could be in any fast food joint! We wanted them to be sitting on the other side so you could see the big sign out front, but the sun was shinning in that way and it was too bright to get a good shot.)

So… here’s in hopes that the boys learned something, (as my friend would say… “a nugget” ) that will benefit them someday in the future. They were good boys and we did have a nice time. At least they should never forget going to see the Body Exhibit!

:0)

hi-d

 

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Filed under Chiari Malformation, Homeschooling, The boys

Create Joy

Life will bring you pain all by itself. Your responsibility is to create joy.
— Milton Erickson, MD

I recived this in an email from a wonderful little German lady in our church! She is one of the reasons that I am still in a church. She is the one who called me and invited me and my little family to the church, almost ten years ago. Right before we found out about Gerrit having Chiari Malformation II.

This statement by Milton Erickson is just what I needed today.

My boys depend on me to create joy for them.

I like to create.

Why not create joy?

I can do that.

j-sunrise-f-b

I will go do some creating right now!

:0)

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