Category Archives: Chiari Malformation

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’m Grateful

Thank you for the prayers and comments for Gerrit. I appreciate it so much more than I can say.

He was anointed in our church today, and it was so very special/emotional/wonderful. I was very proud of him for being willing to let us do this. Basically, the pastor and the elders of our church (as well as the rest of his family) gathered around him and put their hands on him, then they all prayed for healing (that the cyst would be reduced in size). The pastor puts some oil on his head (symbolic) and ends it by rededicating him to the Lord. Very sweet and special moment.

We are so grateful for our little church family. They were there for us 12 years ago when we first found out that Gerrit had Chiari – and we had only been to the church maybe 3 times. But they came to us with food, lent us a car, prayed over us, and gave us support like I’ve never experienced before. It was fantastic – and we stayed!

All because of one person. One person made a phone call to me and invited us to church. I seriously had no intentions of actually going on a regular basis… I went the first time to make a little lady happy! Never underestimate what you can do for others. One phone call, one smile, one small gesture can change their life.

Thanks Giselia, and thanks PTC church!

I will try to get a post on here Monday afternoon or evening to let you know what the doctor says about the MRI.

Thanks again for your prayers,

hi-d

:)

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I’ve Lost my Mind

The plan for today’s post was entirely different from what I am about to write.

I will get to posting the WWII art project, my current art project and school updates soon. But for now I will just tell you a couple little things and then get off to bed to.

First and foremost, I am asking that all of you of the praying sort to keep Gerrit in your prayers this week. He has his annual MRI (for his Chiari Malformation – read his story under Gare Bear’s Chiari Journey) next Monday and we are hoping and praying that the cyst in his spinal column has shrunken since last year. If not, this doctor wants to do exploratory surgery. Of course, we will do that if necessary… but that is not what we are wanting. We are hopeful that the cyst has shrunk enough that it won’t be necessary. And of course we will be getting second and third opinions on it as well. Anyway, Gerrit is a little bit nervous about it (as am I). He is old enough now to know what is going on and what it all means. I have to say, he has been extremely great at taking his vitamins and eating very healthy since last September when we got the report that the cyst was enlarged.

Thank you all in advance for your prayers. I will keep you posted on it.

And the other tidbit for tonight… after a rough day of teaching while fighting my migraine (for the third day), I rushed out the door with the two youngest for their piano lesson. In my fog of pain, I forgot a lot of stuff, but most importantly my cell phone. I muddled through the lessons and then sent the boys into a couple of stores for me, while I stayed in the car propping my head up and keeping my eyes closed! When we got home – Gerrit ran out to the car and announced that I had forgotten my phone! Which, of course, I already had figured out. Then, he proceeded to tell me that Darren had accidentally run over Brutus when he backed out of the driveway to go to work.

UGGG.

Long story short – Brutus is going to be okay. He is banged up and quite traumatized, but no broken bones. Just some scrapes and cuts – but nothing too serious. (As far as I can tell in my haze!) But I will check him out again tomorrow with a good thorough going over.

Darren called on his work break and the poor guy was so upset by it. He had been thinking about Brutus the whole evening and was just sick about it. And poor Gerrit. He had to deal with a bloody and freaked out dog for over an hour all by himself. I hugged him and told him he did real good, and handled the crisis well. He said “yea… I think it was good for me to learn to deal with stuff like this by myself. Now at least I know I can do it!”  He did great and I am so proud of him.

So…  extra dog in the house –  since I think he had a little seizure earlier. It was weird. Not sure what it was, so I want to keep an eye on him.

Of course, Dave is gone again this week! :(

I’m tired and I want a new head.

Night.

:)

hi-d

 

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Gare-Bear Turns Fourteen

I get quite emotional when I stop and think about it. Gerrit could easily have not been with us all these years. He’s undergone two brain surgeries and has lived with a life threatening cyst in his spinal column for most of his young life. Every milestone is a wonderful miracle in our eyes. We are so blessed go have him with us.

He not only turned 14 Tuesday, but he graduated 8th grade and will now be a high schooler! Yikes. How did that happen? I JUST brought him home from the hospital! (I know… I say that about each one of them on every birthday! I’ll stop. Well… probly not. Just being honest.)

We had a nice little Birthday/Graduation party for him Tuesday night. Just a few of his friends and some dear family friends. It was a great evening, and he seemed to enjoy it all.

He has a hard time dealing with all the attention being on him at any given time – so it was awkward for him while he was opening his cards and we were all watching him. But he made it through that alright! I think all the cash in his cards might have helped him deal with it!

He is a special boy, and we are extremely proud of him.

:-)

hi-d

 

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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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