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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Filed under Birthdays, Chiari Malformation, The boys

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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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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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.

scroller_BRSTC1XXSL_196_alt

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.

JulyC 018-b

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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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