I was telling a friend the other day that I had lost my blogging mo-jo. I told her that when something happened in my life that I found humor in, a lot of time it was chiari related. When I shared the story people, not know what to say, would send me hugs.
I am in the land of Chiari. It will forever be a part of my life and that is okay. There are so many things that make me want to hit my head against a brick wall, but I don't. Because after a while you just have to laugh about it. Maybe it is my sarcastic nature, but whatever it is I want to share it. I want you, my friends, to know that it is okay to laugh about it. What else is one to do? Cry?! I am done with that.
While yes this journey sucks and it has been a long emotionally draining road, I have learned SO MUCH and met SO MANY awesome people. There have been people that I have been able to reach out and help because of our experiences.
Wednesday, October 31, 2007
Sunday, October 21, 2007
We did 5K
We signed up with Team Cure Chi ari to walk in a 5K Run/Walk/Kids Dash for University of Chicago Co mer Children's Hospital. We walked with another Chiari/pseudo tumor cerebri family the Johnson's. Rachel is awesome and has been a wonderful source of knowledge about this entire shunt process. (Her husband Kurt is awesome as well) Her boys are just joys! They are SO.SWEET!!!!
We arrived at the U of C Quad yesterday and got our numbers and got in place. My mom went with us as well. As of right now (and it is not up to date) our team (Cure Chiari) has raised (995.00) WOOHOO US! The walk was beautiful. We walked out of the Quad and down 57th to Lake shore Drive. We walked the paths by the lake and it was just a gorgeous day.
Lindsay ran ALL of the 5K with the exception of about 10 foot. She walked 5 ft with Gabe and then decided she needed to run/jog. And she walked across the finish line with me. *I* was pushing a stroller stuffed to the gills. *I* was not about to run across the finish line. Gabe was able to walk part of the 5K and even got to walk over the finish line. Hannah ran about 2 miles of the 5K. Then her feet started tingling and she needed to sit. (Thanks Chiari)
Lindsay is hell bent that she WILL be running the 5k competitively next year. So I guess I best hit my diet/exercise regime a little more aggressively. Hannah is seriously thinking about running it also. I would need to find another person to run with us incase Hannah's feet started giving her grief. I think I might ask my cousin Abby. She has run the Chicago Marathon (and completed it) 4 times. Including this year when it was so nasty hot. The girls LOVE running. I hope that something in me changes and I find that I love it too since I am going to be obviously be doing it alot for the next year. LOL
Here is a link to our pictures.
We arrived at the U of C Quad yesterday and got our numbers and got in place. My mom went with us as well. As of right now (and it is not up to date) our team (Cure Chiari) has raised (995.00) WOOHOO US! The walk was beautiful. We walked out of the Quad and down 57th to Lake shore Drive. We walked the paths by the lake and it was just a gorgeous day.
Lindsay ran ALL of the 5K with the exception of about 10 foot. She walked 5 ft with Gabe and then decided she needed to run/jog. And she walked across the finish line with me. *I* was pushing a stroller stuffed to the gills. *I* was not about to run across the finish line. Gabe was able to walk part of the 5K and even got to walk over the finish line. Hannah ran about 2 miles of the 5K. Then her feet started tingling and she needed to sit. (Thanks Chiari)
Lindsay is hell bent that she WILL be running the 5k competitively next year. So I guess I best hit my diet/exercise regime a little more aggressively. Hannah is seriously thinking about running it also. I would need to find another person to run with us incase Hannah's feet started giving her grief. I think I might ask my cousin Abby. She has run the Chicago Marathon (and completed it) 4 times. Including this year when it was so nasty hot. The girls LOVE running. I hope that something in me changes and I find that I love it too since I am going to be obviously be doing it alot for the next year. LOL
Here is a link to our pictures.
Sunday, October 14, 2007
Some Pictures....
The allergic reaction. This was 7:30pm and he had only been out of surgery for 2.5 hours. During this time he was also having chest pain.
Labeled Picture
Another labeled picture
Shunt Boy is home...
Only 6 days at the hospital this time around. Yeah us! We were very happy with the care that we yet again received at Comer. Gabe is comfortable for the most part. From time to time he will gasp out and tell us he has pain. That pain is mainly from the shunt tubing. He has to get use to the feeling of the tubing, reservoir and valve under his skin and snaked into his abdomen. It was really cool looking at his w-ray and not only seeing his bowels but this tubing just floating around in there.
They opted to go with the soft tubing as it is a little more pliable and Frim felt that Gabe is very sensitive that if they used the barium coated tubing which is a little less pliable that he would have more issues with the tubing poking him. If we heard correctly the tubing they used with Gabe breaks a little more easily than the barium, but I would much rather take my chances with the soft tubing than the more firm tubing.
Gabe's shunt only drains when he lies down. So he will still get headaches (when his pressure goes up), however he has to learn when that happens that he needs to lie down and drain. Draining time just depends. It will take time for him to learn, but you can visibly see s difference in him when his pressure is up and he needs to lie down. Also his speech is a good indicator of when his pressure is up. So, it will just be learning on his part.
We were able to get a programmer. I was a little scared of this thing but Amanda (NP) showed me how to use it and it is not as scary as I once thought. :) Actually it is wicked cool. IT is nice to know that if his shunt setting is not appropriate that we can fix it by reprogramming. Where in the past you had to go in and surgically change the valves.
Gabe developed modesty sometimes between the time he went into the OR and when he arrived in the PACU (Recovery room). Dr. Steve went to lift the sheet on his left side to show us where they placed the reservoir and valve Gabe's eyes flew open and he said, "Don't look at my penis!" We started laughing and Dr Steve told Gabe that we were not going to look at his penis, just his shunt. Gabe was okay with that.
Gabe was so cute in PACU. We were only there for a very short period of time before he got to go to his room. However while there Gabe asked us what time it was. We told him 6pm. He started crying and we asked why. He said, "I missed Breakfast AND Lunch today and I am just starving!" When we arrived in his room, we grabbed the room service menu and asked ordered his meal before they were able to get him off the gurney. :) He was a happy boy. Food service put a rush on his meal because they could hear him crying in the background that he was starving and how we starved him all day long. When I explained to the lady what had happened and how his surgery was delayed due to complications in the surgery before us, she was very sweet and rushed his meal.
Our Child Life Specialist at Comer are awesome. Miss Tracy (Gabe's favorite) works in OR. She actually came down every day (but 1) to visit Gabe. She even played BINGO with him 1 day. :) Our other favorite Miss Ann came in to see him every day but 1 also. They are so awesome. I am so spoiled by going to a hospital with child life. A volunteer came in every day to ask me if I needed a break and that they would sit and play with him. We had no further mishaps with elevating his bed, but that might have to due with him having signs posted ON his door and ABOVE his bed.
They opted to go with the soft tubing as it is a little more pliable and Frim felt that Gabe is very sensitive that if they used the barium coated tubing which is a little less pliable that he would have more issues with the tubing poking him. If we heard correctly the tubing they used with Gabe breaks a little more easily than the barium, but I would much rather take my chances with the soft tubing than the more firm tubing.
Gabe's shunt only drains when he lies down. So he will still get headaches (when his pressure goes up), however he has to learn when that happens that he needs to lie down and drain. Draining time just depends. It will take time for him to learn, but you can visibly see s difference in him when his pressure is up and he needs to lie down. Also his speech is a good indicator of when his pressure is up. So, it will just be learning on his part.
We were able to get a programmer. I was a little scared of this thing but Amanda (NP) showed me how to use it and it is not as scary as I once thought. :) Actually it is wicked cool. IT is nice to know that if his shunt setting is not appropriate that we can fix it by reprogramming. Where in the past you had to go in and surgically change the valves.
Gabe developed modesty sometimes between the time he went into the OR and when he arrived in the PACU (Recovery room). Dr. Steve went to lift the sheet on his left side to show us where they placed the reservoir and valve Gabe's eyes flew open and he said, "Don't look at my penis!" We started laughing and Dr Steve told Gabe that we were not going to look at his penis, just his shunt. Gabe was okay with that.
Gabe was so cute in PACU. We were only there for a very short period of time before he got to go to his room. However while there Gabe asked us what time it was. We told him 6pm. He started crying and we asked why. He said, "I missed Breakfast AND Lunch today and I am just starving!" When we arrived in his room, we grabbed the room service menu and asked ordered his meal before they were able to get him off the gurney. :) He was a happy boy. Food service put a rush on his meal because they could hear him crying in the background that he was starving and how we starved him all day long. When I explained to the lady what had happened and how his surgery was delayed due to complications in the surgery before us, she was very sweet and rushed his meal.
Our Child Life Specialist at Comer are awesome. Miss Tracy (Gabe's favorite) works in OR. She actually came down every day (but 1) to visit Gabe. She even played BINGO with him 1 day. :) Our other favorite Miss Ann came in to see him every day but 1 also. They are so awesome. I am so spoiled by going to a hospital with child life. A volunteer came in every day to ask me if I needed a break and that they would sit and play with him. We had no further mishaps with elevating his bed, but that might have to due with him having signs posted ON his door and ABOVE his bed.
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