38 minutes ago
Wednesday, July 15, 2009
Sweet Baby Avery
It is with great sadness today that I send my thoughts and prayers out to Shane and Carissa. They made the very difficult decision to remove their sweet little Avery from support last night. That's a decision no parent should ever have to make. Carter's mom, Kellie, called it "heroic," and what a fitting word that is. It is truly a heroic decision for them to let Avery be at peace. Such a sacrifice for them, but an easy path for Avery to go peacefully in their arms. Breathe easy sweet Avery.
Tuesday, July 14, 2009
Are Your Letters Ready?
Are your Letters for CDH ready for the big mailing tomorrow? If not, than you and I are in the same boat. I'm currently working on mine (all 100 of them), plus DVD's and more. They'll all be done before I go to bed tonight. Sofie's been a huge help, as you can see below...
About half of my letters in progress...
Grandma Linda with her Letters all ready to go.
I promise to be back with Sofie updates very soon. Lots to update on!! To those of you sending out Letters tomorrow, thank you so much for doing this!!!!
I promise to be back with Sofie updates very soon. Lots to update on!! To those of you sending out Letters tomorrow, thank you so much for doing this!!!!
Thursday, June 25, 2009
I saw this today...
I saw this today...
"SENATE RESOLUTION 204--DESIGNATING MARCH 31, 2010, AS ``NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY'' -- (Senate - June 24, 2009)"
This resolution was submitted by Senator Vitter from Louisiana yesterday and was referred to the Committee on the Judiciary. I knew it was in the works, but to actually read it in the Congressional Record was exciting. Kudos to those working on this (who shall remain nameless here, unless they reveal themselves)! You can read the full resolution in the Congressional Record here. Let's hope it passes! You can keep an eye on S.RES.204 here, and I'll post a link somewhere in the sidebar on the blog.
I'm disappointed that my excitement about this resolution was overshadowed by my anger after reading a thoughtless post on a website called Irregular Times, which carries the tagline "News unfit for print".
During an online search for this resolution in the Congressional Record, I came across an article titled, "No Time for Equality, Congress Has a Hernia" on irregulartimes.com. Of course it caught my attention, so I read on. Being a democrat with left-of-center ideals myself, I had no qualms until I reached the last paragraph, in which the author randomly picked a seemingly frivolous thing to belittle - CDH.
My blood is still boiling.
Every day I look at Sofie and realize how lucky we are to have her here with us. But if I were to be very honest, some of those days, I want to put CDH behind us. I want her to get on with her normal life and not be the poster child for CDH. I feel like we've served our time, and we are entitled to move on.
And just when I think maybe I should be less active in the fight against CDH and maybe not so involved with CDH Awareness, so Sofie can just be a normal kid, something about this monstrous defect drags us back in. She has another recurrence, or I read of another parent losing their innocent child. These things make me realize it's my obligatory responsibility, not my choice, to advocate for families affected by CDH. I didn't pick CDH; it picked me.
As I said earlier, my blood is still boiling. But I'm not angry at the author of the article. I can't help it that people don't adequately research what they write about. It just makes them look stupid. I'm angry because of all the relatively unimportant things the author may have considered to pit against the cause in this article, CDH stood out as egregiously unimportant. That makes me angry.
For parents that have watched their child fight CDH, who realize that victory isn't usually an easy road, and for parents that have watched their child lose the fight, who have held their dying baby in their arms, I'm angry. How can so many people NOT know of something so horrific as CDH?
So to this author, I'm thankful for the burst of hot air that reignited my passion to fight against CDH and for the families affected by it.
"SENATE RESOLUTION 204--DESIGNATING MARCH 31, 2010, AS ``NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY'' -- (Senate - June 24, 2009)"
This resolution was submitted by Senator Vitter from Louisiana yesterday and was referred to the Committee on the Judiciary. I knew it was in the works, but to actually read it in the Congressional Record was exciting. Kudos to those working on this (who shall remain nameless here, unless they reveal themselves)! You can read the full resolution in the Congressional Record here. Let's hope it passes! You can keep an eye on S.RES.204 here, and I'll post a link somewhere in the sidebar on the blog.
I'm disappointed that my excitement about this resolution was overshadowed by my anger after reading a thoughtless post on a website called Irregular Times, which carries the tagline "News unfit for print".
During an online search for this resolution in the Congressional Record, I came across an article titled, "No Time for Equality, Congress Has a Hernia" on irregulartimes.com. Of course it caught my attention, so I read on. Being a democrat with left-of-center ideals myself, I had no qualms until I reached the last paragraph, in which the author randomly picked a seemingly frivolous thing to belittle - CDH.
My blood is still boiling.
Every day I look at Sofie and realize how lucky we are to have her here with us. But if I were to be very honest, some of those days, I want to put CDH behind us. I want her to get on with her normal life and not be the poster child for CDH. I feel like we've served our time, and we are entitled to move on.
And just when I think maybe I should be less active in the fight against CDH and maybe not so involved with CDH Awareness, so Sofie can just be a normal kid, something about this monstrous defect drags us back in. She has another recurrence, or I read of another parent losing their innocent child. These things make me realize it's my obligatory responsibility, not my choice, to advocate for families affected by CDH. I didn't pick CDH; it picked me.
As I said earlier, my blood is still boiling. But I'm not angry at the author of the article. I can't help it that people don't adequately research what they write about. It just makes them look stupid. I'm angry because of all the relatively unimportant things the author may have considered to pit against the cause in this article, CDH stood out as egregiously unimportant. That makes me angry.
For parents that have watched their child fight CDH, who realize that victory isn't usually an easy road, and for parents that have watched their child lose the fight, who have held their dying baby in their arms, I'm angry. How can so many people NOT know of something so horrific as CDH?
So to this author, I'm thankful for the burst of hot air that reignited my passion to fight against CDH and for the families affected by it.
Wednesday, June 24, 2009
19 lbs!!
Sofie hit 19 lbs today!! Yay!! She weighed 19 lbs, 0.9 oz at her visit with Dana this morning. What a big surprise for us! On another note, we want to send our thoughts and prayers out to Sherry, Sofie's OT, today. We're thinking of you!
We've had a busy week, so I haven't had time to update since I got back from my trip. I had a blast in Vegas, but definitely needed a big day of NOTHING on Monday to recover. Yesterday afternoon, Sofie and I went to the pool and had lots of fun. Today we're going to have our own water fun in the backyard. It is sooooo hot here!
Sofie had a good time with Daddy and Grandma Cheryl while I was gone. She got to go see Baby Jay (KU Mascot) on Saturday, and from what I hear she may be featured on the alumni website. Sunday, Sofie and Daddy spent the day together celebrating Father's Day. We will have our celebration next Sunday, since I was gone on the actual day this year, so pics to follow this time next week. I do want to wish Kenny a very happy Father's Day. He's the very best daddy in the world! The card I gave him this year fit him perfectly. Here's what it said...
We've had a busy week, so I haven't had time to update since I got back from my trip. I had a blast in Vegas, but definitely needed a big day of NOTHING on Monday to recover. Yesterday afternoon, Sofie and I went to the pool and had lots of fun. Today we're going to have our own water fun in the backyard. It is sooooo hot here!
Sofie had a good time with Daddy and Grandma Cheryl while I was gone. She got to go see Baby Jay (KU Mascot) on Saturday, and from what I hear she may be featured on the alumni website. Sunday, Sofie and Daddy spent the day together celebrating Father's Day. We will have our celebration next Sunday, since I was gone on the actual day this year, so pics to follow this time next week. I do want to wish Kenny a very happy Father's Day. He's the very best daddy in the world! The card I gave him this year fit him perfectly. Here's what it said...
All I have to do
is hear your voice,
or feel your strong, warm hug,
or see how you work so hard
to take good care of me...
...and I know exactly
what it's like
to be loved
by the very best daddy
of all.
Kenny and I want to wish our dads a very happy Father's Day as well. Thanks for all you do!!
Monday, June 22, 2009
Feed Your Baby!
When Grandma Linda came to visit over Memorial Day Weekend, she brought up one of my old Cabbage Patch dolls that has her own bottle. I wanted Sofie to roll play with feeding. She picked it up instantly and has been feeding, burping, and hugging her baby ever since, along with all of her stuffed animals, Kenny and I, and even Lola (our Chocolate Lab). This is a step up, as she used to only hit her babies in the head with a remote. I was getting worried that her future little brothers or sisters might have to wear a helmet.
Here's a video of Sofie feeding her baby. The second clip is when Kenny saw her do it for the first time. I really wish I would have been filming him instead, because his reaction was priceless. Next time we go to Deanna Rose Farmstead she will LOVE feeding the baby goats a real bottle!
Here's a video of Sofie feeding her baby. The second clip is when Kenny saw her do it for the first time. I really wish I would have been filming him instead, because his reaction was priceless. Next time we go to Deanna Rose Farmstead she will LOVE feeding the baby goats a real bottle!
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