Zoe went to the doctor yesterday because of what looks like bruising on the bottoms of her feet. It might be related to the aspirin she's taking, but the doctor wanted to be sure and had us take her into Children's Hospital Wisconsin for labs.
As much as I wanted to be here at the crack of 8 when they opened, last night was the second of long long nights in a row, and I didn't get out when I wanted. So it's me and what looks like six other families here.
The boy across from me is lying in his mother or caregiver's arms. He's bigger - maybe 6 or 7 - and it looks like he has a what looks like a big carseat in a wheelchair. Is that our life to come?
I wrestle with all of the realities because none are real, yet. Zoe being called home seemed so distant, but I don't know if it's coming closer to her first year that I sense her fragility. Last night I just put her up to my ear so I could hear her breathe.
Wheelchair? Big carseat? Weekly or bi-weekly visits to make sure she's still ok? All 3? None? The no sleeping compounds after a while. Everything seems unmanageable.
The little boy next to me is telling his mom that he is "Very Brave." Maybe I just need a little of his boldness and confidence.
Saturday, February 28, 2009
Friday, February 27, 2009
Thursday, February 26, 2009
The Fear Of Not Fearing
Jen was following the life and videos of another Trisomy 18 baby on the internet, and then found out that the baby had died at age 4.
She was telling me that story while Zoe was lying on the bed, engaged in a comprehensive study of her hand.
It's hard to let your guard down at home, in your heart, and to you guys and start believing your daughter is different or special and might just make it. It's hard to take a breath and figure she's going to be with us. It's even harder when you know the statistics just don't agree with your relaxation.
Each day is still a gift. As our little girl gets older and more aware of her surroundings and the people in them, she becomes more intensely real. A blessing, no doubt.
She was telling me that story while Zoe was lying on the bed, engaged in a comprehensive study of her hand.
It's hard to let your guard down at home, in your heart, and to you guys and start believing your daughter is different or special and might just make it. It's hard to take a breath and figure she's going to be with us. It's even harder when you know the statistics just don't agree with your relaxation.
Each day is still a gift. As our little girl gets older and more aware of her surroundings and the people in them, she becomes more intensely real. A blessing, no doubt.
Finding A Way
This article talks about a chance people with diabetes might not need to stick themselves a bunch of times each day to check their blood sugar. The trick? It's a tattoo that changes colors based on glucose. Pretty neat.
Sunday, February 22, 2009
I Guess All That's Left Is Disco
What's back....
Democrat tax-raising Presidents.
Ugly Fat Ties and Knots.
And Now...Indulgences?
Yep. Indulgences. Apparently we as a nation have learned NOTHING from the past.
Democrat tax-raising Presidents.
Ugly Fat Ties and Knots.
And Now...Indulgences?
Yep. Indulgences. Apparently we as a nation have learned NOTHING from the past.
Waving Hi
I told you it was coming...Jen waves and says "Hi" or "Bye" and Zoe responds.
Usually at some point mid-wave, Zoe starts to notice how cool her hand looks and gets distracted.
Usually at some point mid-wave, Zoe starts to notice how cool her hand looks and gets distracted.
Saturday, February 21, 2009
Sweat and Snow
The forecasters said maybe 3-4 inches. Well, that's not what they're scraping off my road right now, and it's still snowing. Happy February.
Zoe has always been a head sweater, and last night she might have set a personal best for sweating her way out of a set of clothes, a pillow case and both ends of a blanket. I'm talking some real dedicated sweating.
She's also getting better at lifting her head up at tummy time. She'll hold her head up and look around, almost as if this is something she's supposed to be doing.
Tomorrow our Zoe turns 11 months. Yeah, that's right, I just said it like she's going to be with us tomorrow. That's the way she's eating (and snoring right now) and living. 11 months.
Jen and I are starting to plan some kind of shindig for the first birthday party. That's right, I'm talking like she'll be with me in a month. I'm open to suggestions for the party....
Zoe has always been a head sweater, and last night she might have set a personal best for sweating her way out of a set of clothes, a pillow case and both ends of a blanket. I'm talking some real dedicated sweating.
She's also getting better at lifting her head up at tummy time. She'll hold her head up and look around, almost as if this is something she's supposed to be doing.
Tomorrow our Zoe turns 11 months. Yeah, that's right, I just said it like she's going to be with us tomorrow. That's the way she's eating (and snoring right now) and living. 11 months.
Jen and I are starting to plan some kind of shindig for the first birthday party. That's right, I'm talking like she'll be with me in a month. I'm open to suggestions for the party....
Thursday, February 19, 2009
A Big Comeback
Zoe returned from her feverish infection by eating. And eating. Downing sometimes 8 and ten ounces of formula a feeding. Both hands on the bottle and eating like a pro.
We're at the point where we're going to really push to introduce solid foods, this time not because it's around that time, but because she's eating a ton.
How about that?
We're at the point where we're going to really push to introduce solid foods, this time not because it's around that time, but because she's eating a ton.
How about that?
Matthew West Has Another Girl!
When we met Matthew last year, he told us he and his wife were expecting. Just a few days ago, his wife gave birth to Delaney Ruth West. There were some complications, but she looks like a button.
Friday, February 13, 2009
Feeling Groovy
Zoe's fever is gone and now we're giving her 1/2 teaspoons of heart stuff, antibiotics, antireflux stuff, some asprin...and her Captopril patch. She's back to being a pretty docile, opinionated, smartypants. Who has no sleep schedule to speak of.
Thank you for praying and thinking of her. I"ll get some movies up of her - is she waving bye bye to mom? You can decide this weekend.
Thank you for praying and thinking of her. I"ll get some movies up of her - is she waving bye bye to mom? You can decide this weekend.
Wednesday, February 11, 2009
Fever
After a night of fever hovering over 103 degrees...Jen took Zoe into Dr. Chatton's office. They tested and tested and are pretty sure she has a urinary tract infection. It's been a long haul, a long night. I'm hoping everyone has it right.
Tuesday, February 10, 2009
The Government Says: DNR
Reprinting this comment for you in case you're not a comment reader:
This blog entry is begging for my response.
My daughter Annie died at the age of 80 days within 24 hours arrival at a prestigious hospital in Canada. A DNR was written without our knowledge or consent. Lethal, unauthorized quantities of narcotics were removed from the cabinet under Annie's name. The final computerized medication report is inexplicably missing.
Annie had trisomy 13. Unlike many poor children born with this condition, Annie did not have the common brain or heart defects and she could see and hear. She died of a genetic label.
To this day, we do not know what was wrong or why she could not be helped. The Coroner determined the care was "not appropriate" and told us to go complain at the medical board or start a law suit.
Well....in Canada, the life of a child with disabilities barely approaches the cost of a lawyer just getting warmed up.
The medical board would not take action because it is not the doctor's fault: it is a health policy. Our hospital has a "no treat, terminally sedate" policy for trisomy 13/18 kids who land in the ICU or NICU.
Here is a video of a father from Canada describing how the director of the NICU tried to kill his daughter with Trisomy 13. (She is now 7, walking independently, and quite happy)
Annie's story is at www.anniefarlow.com
Things are worse in Canada....but it is changing in the US. We had NO CHOICE for life for Annie....even if we were willing to pay for all of the medical treatment ourselves. It was not an option because the whole time the doctors were pretending that they were "doing everything" and we believed that.
Kids with Trisomy 13 and 18 are at the forefront of the eugenics movement. It all starts with government policies based on quality of life.
Barb
This blog entry is begging for my response.
My daughter Annie died at the age of 80 days within 24 hours arrival at a prestigious hospital in Canada. A DNR was written without our knowledge or consent. Lethal, unauthorized quantities of narcotics were removed from the cabinet under Annie's name. The final computerized medication report is inexplicably missing.
Annie had trisomy 13. Unlike many poor children born with this condition, Annie did not have the common brain or heart defects and she could see and hear. She died of a genetic label.
To this day, we do not know what was wrong or why she could not be helped. The Coroner determined the care was "not appropriate" and told us to go complain at the medical board or start a law suit.
Well....in Canada, the life of a child with disabilities barely approaches the cost of a lawyer just getting warmed up.
The medical board would not take action because it is not the doctor's fault: it is a health policy. Our hospital has a "no treat, terminally sedate" policy for trisomy 13/18 kids who land in the ICU or NICU.
Here is a video of a father from Canada describing how the director of the NICU tried to kill his daughter with Trisomy 13. (She is now 7, walking independently, and quite happy)
Annie's story is at www.anniefarlow.com
Things are worse in Canada....but it is changing in the US. We had NO CHOICE for life for Annie....even if we were willing to pay for all of the medical treatment ourselves. It was not an option because the whole time the doctors were pretending that they were "doing everything" and we believed that.
Kids with Trisomy 13 and 18 are at the forefront of the eugenics movement. It all starts with government policies based on quality of life.
Barb
Wrestling
Zoe's run into a situation with her medicine that has made her uncomfortable and pretty sleepless for much of the last 24 hours. Please pray for her. She needs to sleep.
Is Caring For Zoe Appropriate And Cost Effective?
Last time I mentioned the threat that Universal Healthcare poses to kids like Zoe, one commenter mentioned "I hope that the patient's rights and wishes will be number one in the medical staff's decisions. I have faith in Pres. Obama. He is a father and has overcome a lot in his life. I believe he truly cares about ALL Americans regardless of race, religion, or financial status."
Another said, "Do you think those 50 million deserve health care less than Zoe?
Do you think God wants them to have less then Zoe? How lucky Zoe is to be born in to a family where you have resources even if they are not perfect, but really do you think some people don't deserve health care? It sounds like You think the draconian decision should be against the 50 million who are not you."
Fast forward to today, and the current "stimulus" bill that will soon be adopted into law. One of the stimuli that will soon be law, according to this op/ed in Bloomberg, provides for "medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors."
My response: good to great. I observed physicans and nurses at the same hospital who weren't aware of what had happened in previous shifts or days or weeks. For sure, Zoe's pediatrician and the hospital sharing information would have been and would still be a great step forward.
But.
But then the bill goes on to establish a bureau to oversee those records. "One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions."
Dr. Frommelt told us that Zoe's surgery - performed with care in a private health care system - was the discussion of surgeons and ethicists. What now? What if the decision is put in the same hands of the government that allows for and funds abortion, including late-term abortions?
Appropriate and cost effective would be to let the little girl with the death sentence die. I'll break it to her when she wakes up from her nap. On, stimulus! On!
Another said, "Do you think those 50 million deserve health care less than Zoe?
Do you think God wants them to have less then Zoe? How lucky Zoe is to be born in to a family where you have resources even if they are not perfect, but really do you think some people don't deserve health care? It sounds like You think the draconian decision should be against the 50 million who are not you."
Fast forward to today, and the current "stimulus" bill that will soon be adopted into law. One of the stimuli that will soon be law, according to this op/ed in Bloomberg, provides for "medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors."
My response: good to great. I observed physicans and nurses at the same hospital who weren't aware of what had happened in previous shifts or days or weeks. For sure, Zoe's pediatrician and the hospital sharing information would have been and would still be a great step forward.
But.
But then the bill goes on to establish a bureau to oversee those records. "One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions."
Dr. Frommelt told us that Zoe's surgery - performed with care in a private health care system - was the discussion of surgeons and ethicists. What now? What if the decision is put in the same hands of the government that allows for and funds abortion, including late-term abortions?
Appropriate and cost effective would be to let the little girl with the death sentence die. I'll break it to her when she wakes up from her nap. On, stimulus! On!
Monday, February 09, 2009
Eagle's Wings
My buddy spoke to me Friday of financial travails that make me cringe and just break him to pieces. He's praying, trying to stay plugged in, but sometimes it feels like your stuff is so distant and unique. And so far away from help.
The sermon this week at church was a good reminder that we might not get money, or time. But we will receive hope. There is no God-forsaken place. There is no hopeless situation.
The devotion I read this morning says, "He saved and sanctified you to exhaust you."
The sermon this week at church was a good reminder that we might not get money, or time. But we will receive hope. There is no God-forsaken place. There is no hopeless situation.
The devotion I read this morning says, "He saved and sanctified you to exhaust you."
Sunday, February 08, 2009
Friday, February 06, 2009
Eternal Thanks
One thing I've steered clear of on this blog is all the support we've received from so many many different people.
I'll freely admit I've struggled with the focus and message of this blog and most specifically those who have given Zoe financial support. Support of all kinds. I received an envelope from some kids in Houston who went door to door raising money for Zoe. When Brooke handed me that envelope, I was racked with emotion.
Frankly, Zoe does require extra. Extra prayers. Extra attention. Extra time. Extra holding. Extra patience. Extra dollars. But since we know God gave us Zoe, so we also know that God will provide the extra.
But we never imagined it'd come in so many forms. In an envelope from some loving kids who we've never met. From some caring friends who gave beyond their means to help. From kids like Naomi, who gave me a bag of quarters, to Your Favorite Baseball Player Chris Sampson and his family.
To Doug Lusk at Camden Development Company. Ever heard of him or them? Honestly, I hadn't until I heard that his company, at last year's end, decided to help Zoe.
Your Favorite Baseball Player and his wife, the lovely (and radiantly pregnant) Heather, set up an account with Helping Hands Ministries (www.hhmin.org). These guys accept tax-deductible donations and then give them to authorized recipients. Like Zoe.
The folks at Camden are followers of the blog and they got together and gave a nice - an amazing - a humbling - gift to Helping Hands for Zoe.
Jen and I are so humbled. By those little kids in Houston, by people like the Jarvis's in Chicago. St. Mipps. There's so so many of you out there...
When this all started, I honestly thought that I'd wait until Zoe had lived her life, and then I'd write each and every one of you a thank you, celebrating her life. Zoe and God had different ideas.
And now I am stuck. I'm so grateful to you all and I'm feeling pretty crappy because you all haven't been properly loved back. What can we say? What can I do?
We're going to do a better job of letting you guys know just how grateful we are for you, for your prayers, love and support. You are literally the hand of God touching our lives.
I'll freely admit I've struggled with the focus and message of this blog and most specifically those who have given Zoe financial support. Support of all kinds. I received an envelope from some kids in Houston who went door to door raising money for Zoe. When Brooke handed me that envelope, I was racked with emotion.
Frankly, Zoe does require extra. Extra prayers. Extra attention. Extra time. Extra holding. Extra patience. Extra dollars. But since we know God gave us Zoe, so we also know that God will provide the extra.
But we never imagined it'd come in so many forms. In an envelope from some loving kids who we've never met. From some caring friends who gave beyond their means to help. From kids like Naomi, who gave me a bag of quarters, to Your Favorite Baseball Player Chris Sampson and his family.
To Doug Lusk at Camden Development Company. Ever heard of him or them? Honestly, I hadn't until I heard that his company, at last year's end, decided to help Zoe.
Your Favorite Baseball Player and his wife, the lovely (and radiantly pregnant) Heather, set up an account with Helping Hands Ministries (www.hhmin.org). These guys accept tax-deductible donations and then give them to authorized recipients. Like Zoe.
The folks at Camden are followers of the blog and they got together and gave a nice - an amazing - a humbling - gift to Helping Hands for Zoe.
Jen and I are so humbled. By those little kids in Houston, by people like the Jarvis's in Chicago. St. Mipps. There's so so many of you out there...
When this all started, I honestly thought that I'd wait until Zoe had lived her life, and then I'd write each and every one of you a thank you, celebrating her life. Zoe and God had different ideas.
And now I am stuck. I'm so grateful to you all and I'm feeling pretty crappy because you all haven't been properly loved back. What can we say? What can I do?
We're going to do a better job of letting you guys know just how grateful we are for you, for your prayers, love and support. You are literally the hand of God touching our lives.
Tuesday, February 03, 2009
Some Good Comments And My Responses
Hey everyone...Dan wrote an interesting take on Narnia...and Anonymous took a bold swipe at my comments on healthcare. Do take a look...I responded, and would love to hear your responses.
Monday, February 02, 2009
Rule 24: Keep The Filipinos In The Sun
Bat's in Sacramento visiting Andreas, and baptizing Ella (yesterday)(welcome to the Kingdom, Ella).
He spent some time basking in the sun...soaking up the rays, and awoke "energized." He jumped into writing next week's sermon and cartoon.
The moral, according to Andreas: Keep The Filipinos In The Sun. It's somewhere in the medical journals, I'm sure.
He spent some time basking in the sun...soaking up the rays, and awoke "energized." He jumped into writing next week's sermon and cartoon.
The moral, according to Andreas: Keep The Filipinos In The Sun. It's somewhere in the medical journals, I'm sure.
Why Won't Humana Healthcare Approve An RSV Vaccination?
Soo...Bart Millard's home with Sophie. They both were tired.
If you follow Bart's Twitter or blog, you'll find out RSV can be pretty dangerous - and pretty scary.
Humana Healthcare approved of an RSV shot for Zoe while she was in the hospital. Why are they dragging their feet and not approving one now?
Is it time to get paranoid and defensive?
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