This was posted on G's caringbridge page:
So I posted a link on Facebook today for www.curepity.org. G has frequent visits to Gillette and their site has this up. I found myself having to put it into practice today.
G has been playing with the neighbor girls a lot. They are both about his age, and they all play so well together. I heard him bawling and crying today, and I didn't know what was going on. Was he hurt? Mad? Why was he so upset? I ran outside to see what was going on, and he was furious because he wanted to ride bike. What do I do as a parent? Tell him he can't? Ugh... I felt so sad for him at that moment. I felt so sorry for him. I decided to put him on the bike and pushed him around until he got tired of it.
He was happy, and so was I! I know there are bikes he can use that are hand-propelled, and maybe I'll have to look into getting one. He was back on the ground playing, and all of a sudden he started yelling again, "Ahhhhh, I can't walk! I need to walk! I'm not too little!! Ahhhh, my legs are broken!"
Wow. He is such a verbal child. He's only three, and he expressed his frustration so well. Here's the thing, though, I have commented on how well he's doing this year getting around and didn't think he was that frustrated.
A little piece of my heart broke for my little one, but I know he'll triumph. The kid has determination and he'll figure it out. I'm not really talking about walking, but more about figuring things out and dealing with them. I know he will. I can't sit and feel sorry for him, but I can encourage and support him.
Thursday, August 06, 2009
Friday, March 06, 2009
G went to a full afternoon of school yesterday! It sounds like he did wonderfully. When I picked him up, and we were heading home, I asked him what he thought of school. His reply, "It's a great school!"
We finally got his twister straps (and STILL no walker), and he isn't loving those. They sound horrible, but they're pretty basic. I plan on getting a picture, but right now, we'll just say he's not too cooperative.
After his MRI results, I feel so elated! And kind of lost! LOL When he had SO much going on, it seemed like that was the way it was going to be. Now, life with G is pretty low-key. When I had to fill out the paperwork for his MRI work up, the space for surgeries was way too small. It's always kind of sad to fill out all his surgeries, and he's only three.
What it looks like:
2005- 9/29- shunt placement/myelomeningocele closure, 12/13-bilateral clubfoot percutaneous tenotomies
2006- 1/9-shunt revision, 2/23-cystoscopy urethral stricture repair, 5/1-shunt revision
2007-1/12-shunt revision, 1/24-bilateral clubfoot percutaneous tenotomies, 1/30-shunt revision, 2/4-shunt replacement, 2/14-shunt revision
2008- 4/25 left clubfoot revision
It's tough to fit that in the space allotted.
As we approach April as our one year anniversary of being surgery-free, I think I can finally accept it. Now that we've been told TWO years for a follow-up, I feel like just maybe, yeah, we'll make it. For so long, not even realizing it, I was waiting for that other shoe to drop. I realize that it still can, but I'm not holding my breath anymore. Life without surgery after surgery feels kinda good. All the unknowns don't seem to be beating on my door so much.
We finally got his twister straps (and STILL no walker), and he isn't loving those. They sound horrible, but they're pretty basic. I plan on getting a picture, but right now, we'll just say he's not too cooperative.
After his MRI results, I feel so elated! And kind of lost! LOL When he had SO much going on, it seemed like that was the way it was going to be. Now, life with G is pretty low-key. When I had to fill out the paperwork for his MRI work up, the space for surgeries was way too small. It's always kind of sad to fill out all his surgeries, and he's only three.
What it looks like:
2005- 9/29- shunt placement/myelomeningocele closure, 12/13-bilateral clubfoot percutaneous tenotomies
2006- 1/9-shunt revision, 2/23-cystoscopy urethral stricture repair, 5/1-shunt revision
2007-1/12-shunt revision, 1/24-bilateral clubfoot percutaneous tenotomies, 1/30-shunt revision, 2/4-shunt replacement, 2/14-shunt revision
2008- 4/25 left clubfoot revision
It's tough to fit that in the space allotted.
As we approach April as our one year anniversary of being surgery-free, I think I can finally accept it. Now that we've been told TWO years for a follow-up, I feel like just maybe, yeah, we'll make it. For so long, not even realizing it, I was waiting for that other shoe to drop. I realize that it still can, but I'm not holding my breath anymore. Life without surgery after surgery feels kinda good. All the unknowns don't seem to be beating on my door so much.
Thursday, March 05, 2009
An MRI,etc
G's appointment went well yesterday. I should really say appointmentS because the boy had several.
We arrived early at 9:00 am. He went NPO at 7:00 am, so it worked out well. I'm not sure about all the times, but it seems like they got things moving relatively quickly. His MRI was scheduled for 10:30, and it was started right at that time! He had a head CT before the MRI, and those kind of freak him out as he's had so many. He did SO well, though. He was sad, but he did remain still.
He charms the nurses like crazy. He's got so much wit and humor and makes the cutest faces. They did not want to poke him for the I.V. but, of course, it had to be done. He and I read a book while they tried to find some in his feet (no sensation), but the veins were too fragile and kept blowing out. He would look over the book to see what they were up to, and would start to get upset about them "hurting" his feet until I'd distract him and he'd forget all about it.
The I.V. ended up having to go in his hand. One of the nurses names was Rosie, and he really seemed to like her. They had a different nurse come in because they didn't want G to be mad at them. While they were poking about, G started yelling, "I get stickers! GET me stickers!" I felt so bad that it hurt, but I had to giggle at his demand in the midst of his pain. It went relatively fast (I'm sure not so much for him, but if he could remember a couple years ago...), and we took him in for the MRI.
Just like that he was out, looking like a peaceful little angel. Hubby and I headed downstairs for a candy bar and then back to the waiting room. He was in the recovery room within about 50 minutes.
Once G woke up, he was off and on a little loopy, and boy, he says funny things. He had a red popsicle and some apple juice. When the IV had to come out, he was so excited to get it out, until it had to be pulled out. The nurse asked if he could count to 10, and he said, "yes". She told him to start counting, and he said, "Ten." LOL
Afterward, we headed to the x-ray department, and G was amazingly cooperative. Usually, we have to help hold him still, but he would just stay in whatever position he was put in. He had about 6 taken, so very surprising to me he did so well!
We headed over to see the neurosurgeon's nurse practitioner, and she was pleased to report that all looked good!! Yay!! We won't need to return for two years to follow up!
So that was day, and the older kids got to go visit their cousins and aren't home yet.
We are so tired but oh so grateful for such a GOOD report.
We arrived early at 9:00 am. He went NPO at 7:00 am, so it worked out well. I'm not sure about all the times, but it seems like they got things moving relatively quickly. His MRI was scheduled for 10:30, and it was started right at that time! He had a head CT before the MRI, and those kind of freak him out as he's had so many. He did SO well, though. He was sad, but he did remain still.
He charms the nurses like crazy. He's got so much wit and humor and makes the cutest faces. They did not want to poke him for the I.V. but, of course, it had to be done. He and I read a book while they tried to find some in his feet (no sensation), but the veins were too fragile and kept blowing out. He would look over the book to see what they were up to, and would start to get upset about them "hurting" his feet until I'd distract him and he'd forget all about it.
The I.V. ended up having to go in his hand. One of the nurses names was Rosie, and he really seemed to like her. They had a different nurse come in because they didn't want G to be mad at them. While they were poking about, G started yelling, "I get stickers! GET me stickers!" I felt so bad that it hurt, but I had to giggle at his demand in the midst of his pain. It went relatively fast (I'm sure not so much for him, but if he could remember a couple years ago...), and we took him in for the MRI.
Just like that he was out, looking like a peaceful little angel. Hubby and I headed downstairs for a candy bar and then back to the waiting room. He was in the recovery room within about 50 minutes.
Once G woke up, he was off and on a little loopy, and boy, he says funny things. He had a red popsicle and some apple juice. When the IV had to come out, he was so excited to get it out, until it had to be pulled out. The nurse asked if he could count to 10, and he said, "yes". She told him to start counting, and he said, "Ten." LOL
Afterward, we headed to the x-ray department, and G was amazingly cooperative. Usually, we have to help hold him still, but he would just stay in whatever position he was put in. He had about 6 taken, so very surprising to me he did so well!
We headed over to see the neurosurgeon's nurse practitioner, and she was pleased to report that all looked good!! Yay!! We won't need to return for two years to follow up!
So that was day, and the older kids got to go visit their cousins and aren't home yet.
We are so tired but oh so grateful for such a GOOD report.
Friday, January 16, 2009
Poor little G is sick. Nice, old-fashioned cold, and he's miserable. This morning he woke up and his eyes were glued shut. He was freaking out and crying that he couldn't see, and I think he made a comment about his eyes being gone. I got a warm washcloth and finally he was able to open them. His eyes got as wide as they could in their state, and he exclaimed, "I can see! I can see!"
It was so cute. His whites are a bit red streaked, so I'm pretty sure we're dealing with conjunctivitis. No PT today!
The temperature outside was about 30 below (F) this morning, not factoring in the windchill.
It was so cute. His whites are a bit red streaked, so I'm pretty sure we're dealing with conjunctivitis. No PT today!
The temperature outside was about 30 below (F) this morning, not factoring in the windchill.
Friday, January 09, 2009
2008
2008 vs 2007. Quite a difference! G started 2007 out with four shunt revisions, rotavirus hospital stay, and the year went on with multiple UTIs and ear infections. My mother was also diagnosed with leukemia that year. But 2007 is gone, right? Why am I bringing it up? Because it's relevant to 2008, I guess. 2008 was as uneventful as 2007 was eventful. We had ONE surgery. A planned one at that! We had a couple scares where we thought something was going on with the shunt, but not this time... My mom is still on chemo but in remission, so the year 2008 rocked!
Why is it, though, when I reflect on 2008, I mostly think of 2007? I am so thankful this was a non-eventful year. There were things that went on, most assuredly, and not all of them were good, but overall, the year was a very good year. I'm a little shocked, actually, that it's 2009.
G is now three. He has taken steps in his walker. He is going to school sometimes and getting PT twice a week. He is here. One of the things that seems so far away is being told he wouldn't live. Living that first year of his life with bated breath, wondering if he'd be snatched away. Going through multiple surgeries and wondering if this, this is how it was going to always be. And then, here we are.
He may have things in his future, but I'm not dwelling on those. The here and now is that I have this fabulous three-year-old. He is G! He's fun, witty, smart, funny, ornery, and so full of personality.
Sunday, January 04, 2009
Walkers, twister straps, waiting..
We are still waiting for G's walker. Thankfully, we have one through the school that is working well. He's been very stubborn with the PT, and I think he's in all his three-year-old glory when it comes to that. It's such a challenge figuring out how to discipline without giving him what he wants, which is to quit pt. So far, I've been encouraging to apologize after we are all done.
He's been taking steps in the walker! His therapist moves the walker, and he takes the steps. We need twister straps to give him more stability and endurance, but I'm thinking I have to call again to get the ball rolling. The holidays seem to have messed up our fairly timely clinic!
G likes to wheel around in his chair when we go places. Last week we forgot to put it in the van when we went to an event, and he was so irritated. He kept telling us to remember the chair next time. He tends to "run" while he's in it, so we're having to set some boundaries. He's way too good at stopping at will, so he thinks he's got it all figured out. I knew three was going to be a challenge!!
2008 was a really, really good year. No major hospital stays, only one surgery (planned), and overall good health. Soooooo different than 2007. My mom has been doing well with the chemo, and all of our kids have been relatively healthy this year. I have so much to be thankful!
He's been taking steps in the walker! His therapist moves the walker, and he takes the steps. We need twister straps to give him more stability and endurance, but I'm thinking I have to call again to get the ball rolling. The holidays seem to have messed up our fairly timely clinic!
G likes to wheel around in his chair when we go places. Last week we forgot to put it in the van when we went to an event, and he was so irritated. He kept telling us to remember the chair next time. He tends to "run" while he's in it, so we're having to set some boundaries. He's way too good at stopping at will, so he thinks he's got it all figured out. I knew three was going to be a challenge!!
2008 was a really, really good year. No major hospital stays, only one surgery (planned), and overall good health. Soooooo different than 2007. My mom has been doing well with the chemo, and all of our kids have been relatively healthy this year. I have so much to be thankful!
Wednesday, October 22, 2008
I took G to school yesterday to participate in the classroom for about an hour. I left him rather than sticking around and observing because I knew he'd do better if I did. I wheeled him in, and he got down on the floor with the kids. As I left, I was totally tearing up. I couldn't believe how many emotions were swirling around as I exited the building. There was a sense of pride, that my little boy was growing up and didn't cry when I left, a sense of sadness for the same reasons, and a nice panicky sensation that my BABY was in school.
I walked over to my aunt's and we chatted and when I returned I sat and watched for about 15 minutes. G didn't see me come in, and he'd join in with the class sometimes, but mostly he watched the kids. They were so cute and so smart! Afterward, I asked him if he liked school, and he said, "yes" and said something about his friends. Awwwww... :)
I was a bit stressed over the weekend because G fell off a chair on Thursday. He hit his shunt, and HARD. I tried to put ice on, but he was very resistant to it. A few hours later, he had fluid all around the valve. I'm pretty sure it wasn't a goose egg because it was pretty soft. He didn't exhibit any other issues, so I've been waiting it out. I know those things are supposed to be pretty tough to damage. On Saturday, though, he fell on it again and bumped it pretty hard. :( I worried ALL weekend, but so far so good.
Three is obviously a bit more daredevil than two was. He has been climbing up onto all our chairs and climbing down on his own. I'm sure the table is next, but trust me, I'm not going to give him any ideas! Last Thursday, he dove out of his chair after something, and on Saturday he ventured down the stairs on his own. How do you maintain independence and caution??? He gets so angry if I help him (unless he asks), but this surge of independence is wreaking havoc on my hair color.
I walked over to my aunt's and we chatted and when I returned I sat and watched for about 15 minutes. G didn't see me come in, and he'd join in with the class sometimes, but mostly he watched the kids. They were so cute and so smart! Afterward, I asked him if he liked school, and he said, "yes" and said something about his friends. Awwwww... :)
I was a bit stressed over the weekend because G fell off a chair on Thursday. He hit his shunt, and HARD. I tried to put ice on, but he was very resistant to it. A few hours later, he had fluid all around the valve. I'm pretty sure it wasn't a goose egg because it was pretty soft. He didn't exhibit any other issues, so I've been waiting it out. I know those things are supposed to be pretty tough to damage. On Saturday, though, he fell on it again and bumped it pretty hard. :( I worried ALL weekend, but so far so good.
Three is obviously a bit more daredevil than two was. He has been climbing up onto all our chairs and climbing down on his own. I'm sure the table is next, but trust me, I'm not going to give him any ideas! Last Thursday, he dove out of his chair after something, and on Saturday he ventured down the stairs on his own. How do you maintain independence and caution??? He gets so angry if I help him (unless he asks), but this surge of independence is wreaking havoc on my hair color.
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