By the way, I failed to mention that JG is up to 13 lbs and 12 oz!!
After our appointment with the surgeon this morning at Brenner, we're set up for the surgery/procedure to occur on Tuesday morning August 2nd. The procedure itself takes about 30 minutes, but Janie will need to be completely knocked out again, so I suspect we won't see her most of the morning. We're told that Janie should be able to bypass ICU and go right to the floor. Obviously, this is less risky than heart surgery but certainly something we'll be glad to have behind us. My guess is that if all goes well she'll be in the hospital for 3-4 days. Optimistically, maybe a week from now she'll be home. We've requested to be on the 6th floor where many of the nurses are familiar faces and Janie is well-loved.
Please pray that she'd be healthy leading up to the surgery so that the doctors are comfortable putting her under and performing the surgery. There are always lots of logistics to put in place as we think of Jacob and Jensen, so pray that all comes together as well.
On one hand, this sort of feels like it'll bring our summer to a quick finale. On the other hand, we're glad to get this out of the way before school starts for Jacob and Jensen.
Thursday, July 28, 2011
Janie After Dinner
Janie is being introduced to many new flavors on a regular basis. She's had squash, sweet potatoes, pears, peas, bananas, carrots (probably her favorite) and, as of Wednesday, avocado. She seemed to really like the avocado. Jennifer let's her lick cantaloupe, broccoli, bread etc and she's willing to give most anything a try!
After most every meal, she could probably use a bath. We're encouraged to see her willing to try food. She's certainly taking in more than ever but is still a long way from sustaining herself independently. She does show signs of being hungry which is also a good thing.
Later this morning (Thursday), we have an appointment with the general surgeon who will oversee JG's procedure to have her G-tube installed which will be a port directly into her belly without need for a tube through her nose. That procedure will probably be done during August some time (we guess).
After most every meal, she could probably use a bath. We're encouraged to see her willing to try food. She's certainly taking in more than ever but is still a long way from sustaining herself independently. She does show signs of being hungry which is also a good thing.
Later this morning (Thursday), we have an appointment with the general surgeon who will oversee JG's procedure to have her G-tube installed which will be a port directly into her belly without need for a tube through her nose. That procedure will probably be done during August some time (we guess).
Tuesday, July 19, 2011
Labels
I would imagine that even the most well-intentioned among us, if honest, would acknowledge that many of us immediately label a person based on their appearance and/or mental capability. Reluctantly, I admit that I've had to work through my tendency to jump to a conclusion about somebody now that we have a daughter to whom labels will be immediately attached upon observation of her. I wish it weren't true, but to think otherwise would be naive. After all, this tendency within our human nature goes back to Adam & Eve.
Just the other day, a kind woman (who was a stranger to us) exclaimed to Jennifer upon seeing Janie Grace, "oh, they are so cute when they are little". True, Janie is ultra-cute and, yes, most 7-month-old babies are adorable. However, clearly, the "they" this woman was referring to was people with Down Syndrome. Otherwise, she'd have said, "oh, isn't she so cute?!" Upon hearing such a statement, on the outside, we smile and say "yes, SHE is" but on the inside it's easy to lash out at the label being attached to our daughter. We just want to say "and she'll be cute when she's 30!" On the other hand, we probably once said equally naive things and understand that it just comes with the territory. Clearly, nobody is intending to slander Janie Grace.
Why do I say all of this? Certainly, I'm not seeking to whine about people that label Janie Grace. In reality, people stereotype me as quickly as they do Janie. Frankly, I'm guilty of it too. I say all this because of an innocent question Jacob raised tonight during prayer time in bed.
Jennifer's sister, Tracy, is expecting her 2nd child later this year, so we often pray for the health of Tracy and the growing baby. Prayer time at our house isn't the most pious of moments. Jacob and Jensen will often inject a comment or question mid-prayer. Tonight was no different. Immediately after praying for Baby Mansfield's health, Jacob chimed in "so that the baby doesn't have a feeding tube and Down Syndrome?" (Gulp...where did that come from?).
I suppose it's worth quickly explaining that, while we're very honest with the kids about JG's health issues, we've been calculated with saying much of anything that would prevent Jacob and Jensen from doing anything but perceiving her to be their sweet baby sister. Naturally, as parents, we wanted that to be her only label in the eyes of our kids for years to come. Now, I'm not suggesting that, as of tonight, Jacob will always look at her as "my sister with Down Syndrome" any more than I'm his dad with freckles. However, there was a thud in both Jennifer and my souls tonight when the reality hit that Jacob is beginning to recognize that Janie Grace is different (pleasantly I might add) from other 7-month-old baby sisters. Few people adore Janie like Jacob does, so clearly he meant no harm by his comment, but it's clear the veil of innocent ignorance is being pulled back. We knew the day would come...just hoped it would take longer.
One of the many blessings available to our kids through Janie is that her health does raise questions in their minds such as Jacob's from tonight. It leads to meaningful conversations that we hope will lead to significant impressions on their hearts. Tonight's conversation continued down a path to, "well why did God allow Janie to have Down Syndrome? why was it God's will? was does DS feel like?" I'm not sure we'd have reason to be answering these questions for Jacob (and Jensen who's intently listening to the answers as well) at this point were it not for the precious gift of JG in each of our lives.
One thing is certain...each of them is a treasure. (Yeah, I know, I just labeled them.)
I'm not sure anything I wrote makes much sense to anybody but me but it felt good to try and give a glimpse into some of the more serious thoughts that travel through our brains when there's a free moment.
Just the other day, a kind woman (who was a stranger to us) exclaimed to Jennifer upon seeing Janie Grace, "oh, they are so cute when they are little". True, Janie is ultra-cute and, yes, most 7-month-old babies are adorable. However, clearly, the "they" this woman was referring to was people with Down Syndrome. Otherwise, she'd have said, "oh, isn't she so cute?!" Upon hearing such a statement, on the outside, we smile and say "yes, SHE is" but on the inside it's easy to lash out at the label being attached to our daughter. We just want to say "and she'll be cute when she's 30!" On the other hand, we probably once said equally naive things and understand that it just comes with the territory. Clearly, nobody is intending to slander Janie Grace.
Why do I say all of this? Certainly, I'm not seeking to whine about people that label Janie Grace. In reality, people stereotype me as quickly as they do Janie. Frankly, I'm guilty of it too. I say all this because of an innocent question Jacob raised tonight during prayer time in bed.
Jennifer's sister, Tracy, is expecting her 2nd child later this year, so we often pray for the health of Tracy and the growing baby. Prayer time at our house isn't the most pious of moments. Jacob and Jensen will often inject a comment or question mid-prayer. Tonight was no different. Immediately after praying for Baby Mansfield's health, Jacob chimed in "so that the baby doesn't have a feeding tube and Down Syndrome?" (Gulp...where did that come from?).
I suppose it's worth quickly explaining that, while we're very honest with the kids about JG's health issues, we've been calculated with saying much of anything that would prevent Jacob and Jensen from doing anything but perceiving her to be their sweet baby sister. Naturally, as parents, we wanted that to be her only label in the eyes of our kids for years to come. Now, I'm not suggesting that, as of tonight, Jacob will always look at her as "my sister with Down Syndrome" any more than I'm his dad with freckles. However, there was a thud in both Jennifer and my souls tonight when the reality hit that Jacob is beginning to recognize that Janie Grace is different (pleasantly I might add) from other 7-month-old baby sisters. Few people adore Janie like Jacob does, so clearly he meant no harm by his comment, but it's clear the veil of innocent ignorance is being pulled back. We knew the day would come...just hoped it would take longer.
One of the many blessings available to our kids through Janie is that her health does raise questions in their minds such as Jacob's from tonight. It leads to meaningful conversations that we hope will lead to significant impressions on their hearts. Tonight's conversation continued down a path to, "well why did God allow Janie to have Down Syndrome? why was it God's will? was does DS feel like?" I'm not sure we'd have reason to be answering these questions for Jacob (and Jensen who's intently listening to the answers as well) at this point were it not for the precious gift of JG in each of our lives.
One thing is certain...each of them is a treasure. (Yeah, I know, I just labeled them.)
I'm not sure anything I wrote makes much sense to anybody but me but it felt good to try and give a glimpse into some of the more serious thoughts that travel through our brains when there's a free moment.
Kitchen Update
For the past 2 days, our trusty painter has been giving the cabinets a fresh coat of white and turning the walls a light gray. We were both really pleased with the way the paint brought everything together in the room. Here are a few pictures.
Monday, July 18, 2011
Saturday, July 16, 2011
Kitchen - After Day 6
The kitchen is really coming together. It looks beautiful. Some noticeable changes are still to come as the walls and cabinets will be painted and some cabinetry will be added. A new fridge to match everything is on back order
Monday, July 11, 2011
Kitchen Day #2
As if life isn’t frenetic enough right now, we figured we’d layer in some fairly extensive kitchen work to keep us on our toes. Arguably, the kitchen probably should have been the first room we tackled when we moved into the house 8 years ago, but we always found easier home improvement tasks to tackle. However, the faucet that squeaked while yielding minimal water pressure, the white floor that never looked 100% clean and revealed every crumb left behind, the microwave that required an occasional extra-hard push shut to function, the broiler-less 25+ year-old-oven, and, finally, the smurf-blue counter tops are meeting their demise this week.
Some of you were aware we’d be officially starting the project yesterday and have asked for some photos to track progress. Frankly, I’m too busy to show all the progress pics you may want, but here is a start. (Jennifer got a bunch yesterday during demolition that we may share at a later date.)
This is mid-day today after the new counter tops, sink and lights have been installed. Tile floor, back splash, appliances, faucet, etc to follow.
The counter tops are gray/white/black. Most everything in the room will be in that color scheme by the time we finish up.
Some of you were aware we’d be officially starting the project yesterday and have asked for some photos to track progress. Frankly, I’m too busy to show all the progress pics you may want, but here is a start. (Jennifer got a bunch yesterday during demolition that we may share at a later date.)
This is mid-day today after the new counter tops, sink and lights have been installed. Tile floor, back splash, appliances, faucet, etc to follow.
The counter tops are gray/white/black. Most everything in the room will be in that color scheme by the time we finish up.
Friday, July 8, 2011
Jacob & JG
As Janie Grace becomes more and more interactive, Jacob grows more and more interested in her.
Thursday, July 7, 2011
Update to Previous Post
My apologies...I mis-understood Jennifer during the eye appointment download over the phone. Fortunately, Janie G will only need to wear the eye patch 2 hours/day. This is certainly better than first thought as I thought it was 24/7.
Please pray that the glasses and patch would take corrective action and that her eyes would respond well.
Please pray that the glasses and patch would take corrective action and that her eyes would respond well.
Janie Grace Update - July 7
Jennifer spent most of the day in Chapel Hill on Wednesday meeting with the feeding specialists there. They were pleased to learn that Janie's stomach is accepting the food so well. As a result, they are more anxious than ever to have the G-tube put in as they share our concern for multiple reasons still having a tube still running through her nostril. Jennifer will be coordinating with the GI doctor at Brenner to try and get the surgery set up.
Since it appears the G-tube is the only option at this point, we are more than ready to get this done. As you can imagine, in light of being 7 months old now, Janie is, naturally, getting more active. She rolls around the floor and we're seeing early signs of army crawl attempts. These are great signs of activity given the heightened possibility of delays with her physical development. However, movement of that sort creates concern for the tube she's attached to. Recently, we've found her in her crib with it wrapped around her torso several times (glad it wasn't her neck!), she's nearly pulled the pole onto herself, and she did manage to get the tube completely out again on the morning of the 4th. Fortunately, with it being in her stomach now, our friend Krista was able to put the tube back in which saved a trip to the emergency room.
The doctors tell us that the G-tube will have positive impact on JG and our family given that it's less restrictive than the tube. Plus, with no tube in her throat, we may see some immediate improvement with her eating. Speaking of eating, she seems to like sweet potatoes and peas. We continue to see slow improvement with the volume we're able to get into her over a 30-minute feeding.
Today, our newest challenge was presented. We've known that eye issues often accompany Downs and could certainly observe that Janie's eyes have a tendency to cross. We figured she'd need some glasses before too long but hoped it might wait until she was a bit older. Unfortunately, it's worse than we'd hoped. Beginning immediately, Janie will wear glasses and a patch will cover her dominate eye in hopes of strengthening her weak eye. (I don't have the details of which is which at this point.) According to the eye doctor, if improvement isn't seen in the next 3 months via these measures, we may be forced into eye surgery to get things going in a better direction. Therefore, her face is going to trade a tube and tape for a patch and glasses.
As you can imagine, the speed at which these changes come is overwhelming for all of us but, Jennifer, in particular. Hardly a week goes by where we don't take a step in a new direction for one reason or another. It's a challenge to catch our breath.
On a more positive note, free of restrictions from her heart surgery, JG's had her first trip to the library with Jacob and Jensen and has a had a couple visits to church with us.
Since it appears the G-tube is the only option at this point, we are more than ready to get this done. As you can imagine, in light of being 7 months old now, Janie is, naturally, getting more active. She rolls around the floor and we're seeing early signs of army crawl attempts. These are great signs of activity given the heightened possibility of delays with her physical development. However, movement of that sort creates concern for the tube she's attached to. Recently, we've found her in her crib with it wrapped around her torso several times (glad it wasn't her neck!), she's nearly pulled the pole onto herself, and she did manage to get the tube completely out again on the morning of the 4th. Fortunately, with it being in her stomach now, our friend Krista was able to put the tube back in which saved a trip to the emergency room.
The doctors tell us that the G-tube will have positive impact on JG and our family given that it's less restrictive than the tube. Plus, with no tube in her throat, we may see some immediate improvement with her eating. Speaking of eating, she seems to like sweet potatoes and peas. We continue to see slow improvement with the volume we're able to get into her over a 30-minute feeding.
Today, our newest challenge was presented. We've known that eye issues often accompany Downs and could certainly observe that Janie's eyes have a tendency to cross. We figured she'd need some glasses before too long but hoped it might wait until she was a bit older. Unfortunately, it's worse than we'd hoped. Beginning immediately, Janie will wear glasses and a patch will cover her dominate eye in hopes of strengthening her weak eye. (I don't have the details of which is which at this point.) According to the eye doctor, if improvement isn't seen in the next 3 months via these measures, we may be forced into eye surgery to get things going in a better direction. Therefore, her face is going to trade a tube and tape for a patch and glasses.
As you can imagine, the speed at which these changes come is overwhelming for all of us but, Jennifer, in particular. Hardly a week goes by where we don't take a step in a new direction for one reason or another. It's a challenge to catch our breath.
On a more positive note, free of restrictions from her heart surgery, JG's had her first trip to the library with Jacob and Jensen and has a had a couple visits to church with us.
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