This is the motto of a website I stumbled upon the other day. It is called Feeding Tube Awareness. I especially love their Facebook page!
It is good for me to see all the mom's dealing with feeding tubes for a million different reasons. I don't live near anyone I know that has a child with a feeding tube. It is so frustrating some times because there is so much I don't know. I've already learned tons just by reading what others do. It has helped me realize I need to be more proactive with my insurance. I also enjoy that they discuss eating problem, suggesting foods and ways to encourage eating.
I don't know if there are any others affected by Glycogen Storage Disease, but I hope to find out soon.
Thursday, March 31, 2011
Awesome tube accessory!
When Evan had his NG tube I always hated the tape on his face, I think besides the tube in his nose the tape made people stare just as much. These cute little "stickers" made from special medical tape would have made the experience a little more whimsical!
I'm currently working on trying to make my Sweetie Pie a band for his belly to secure his Gtube and extension better. If I can't get it right, I may just have to get some of these for his tummy!
The website has lots of things that help medical visits/procedures/stays a little more enjoyable for little ones.
Kid's Hope Chest
Saturday, March 5, 2011
"Do not fear your destiny"
Last week I read a beautiful email. I wanted to share something it read.
It was written by a man from Brazil named Ismael Portilho. I do not know him personally but he posts often on a email list I belong to for Glycogen Storage Diseases.
He has Type II, known as Pompe Disease. Pompe was recently made a little more famous because it was the topic of the movie Extraordinary Measures a couple of years ago. This disease, while in the same "family" as my Sweetie Pie's, has its own myriad of symptoms and side affects that are not at all the same as what Evan experiences.
The subject of dealing with disease and how it affects life, and our feelings was being discussed, also how family members deal with it as well. Mr. Portilho was kind enough to share his father's kind and wise words that he gave to him to help him face the disease he'd been diagnosed with.
' "Do not fear your destiny", he said, "If you'll be bound to a bed or if you'll be cured, be happy for the life you'll have. Do not tie your happiness to things that are not on your hands. These are God's realm and the world's capricious designs. Do whatever you can to be happy, and rest easy on your work." '
I found these gentle words of this father to be so moving and touching that I was brought to tears. These
are words that I believe anyone could benefit from in any trial in their life.
I pray that as time goes on I can provide that comfort and wisdom to my child when he comes to me with tears in his eyes and the questions of "Why?" on his lips. That I can give him the strength and presence of mind to go on and live when he may want to give up.
For now, I needed that encouragement. I'm so glad that Mr. Portilho shared this private moment. Many parents of children with autosomal recessive genetic diseases or other genetically passed diseases live with some sort of guilt for passing a burden on to their child. I personally haven't felt that guilt. I do have other feelings that I have not yet been ready to or able to form into words. For now I am just coping. I feel that fog lifting though as I get better at not fearing my nor Evan's destiny.
It was written by a man from Brazil named Ismael Portilho. I do not know him personally but he posts often on a email list I belong to for Glycogen Storage Diseases.
He has Type II, known as Pompe Disease. Pompe was recently made a little more famous because it was the topic of the movie Extraordinary Measures a couple of years ago. This disease, while in the same "family" as my Sweetie Pie's, has its own myriad of symptoms and side affects that are not at all the same as what Evan experiences.
The subject of dealing with disease and how it affects life, and our feelings was being discussed, also how family members deal with it as well. Mr. Portilho was kind enough to share his father's kind and wise words that he gave to him to help him face the disease he'd been diagnosed with.
' "Do not fear your destiny", he said, "If you'll be bound to a bed or if you'll be cured, be happy for the life you'll have. Do not tie your happiness to things that are not on your hands. These are God's realm and the world's capricious designs. Do whatever you can to be happy, and rest easy on your work." '
I found these gentle words of this father to be so moving and touching that I was brought to tears. These
are words that I believe anyone could benefit from in any trial in their life.
I pray that as time goes on I can provide that comfort and wisdom to my child when he comes to me with tears in his eyes and the questions of "Why?" on his lips. That I can give him the strength and presence of mind to go on and live when he may want to give up.
For now, I needed that encouragement. I'm so glad that Mr. Portilho shared this private moment. Many parents of children with autosomal recessive genetic diseases or other genetically passed diseases live with some sort of guilt for passing a burden on to their child. I personally haven't felt that guilt. I do have other feelings that I have not yet been ready to or able to form into words. For now I am just coping. I feel that fog lifting though as I get better at not fearing my nor Evan's destiny.
Over-night cornstarch
Well it's been about a week and I am loving the overnight cornstarch.
My Sweetie Pie is sleeping through the night!!! He has never done this before in his whole life. I'm so happy for him and us, I can sleep in my own bed again!
My hubby and I are taking turns giving his feedings at night and that helps with the sleep. We are able to each get about a 5 hour block of uninterrupted sleep. I will admit though, that have this little worry in the back of my mind that I will sleep through the alarm and back up alarm and it makes for a light sleep. I've also gotten up and had everything prepared before I realized I was an hour early. *sigh* Better early than never, I guess.
Evan's blood sugar are seeming to do better in the morning now too. Before, he was having a hard time in the morning when we would transistion from pump to cornstarch. He would always drop really fast- as much as 20-25 "points" in a 1/2 hour. I thought it was only the pump causing this but it seems that he just has a pattern of low blood sugar first thing in the morning and so I made some adjustments and he is maintaining well.
So with this hurdle crossed, now on to eating food- with his mouth. And figuring out this crazy diet!
My Sweetie Pie is sleeping through the night!!! He has never done this before in his whole life. I'm so happy for him and us, I can sleep in my own bed again!
My hubby and I are taking turns giving his feedings at night and that helps with the sleep. We are able to each get about a 5 hour block of uninterrupted sleep. I will admit though, that have this little worry in the back of my mind that I will sleep through the alarm and back up alarm and it makes for a light sleep. I've also gotten up and had everything prepared before I realized I was an hour early. *sigh* Better early than never, I guess.
Evan's blood sugar are seeming to do better in the morning now too. Before, he was having a hard time in the morning when we would transistion from pump to cornstarch. He would always drop really fast- as much as 20-25 "points" in a 1/2 hour. I thought it was only the pump causing this but it seems that he just has a pattern of low blood sugar first thing in the morning and so I made some adjustments and he is maintaining well.
So with this hurdle crossed, now on to eating food- with his mouth. And figuring out this crazy diet!
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