If you have not already caught up with them, please go read Life With the Ferrels and pray with us for their family. God has promised to be with us through all our trials, and we pray for His mercy and loving arms to surround them every hour of every day.
Thanks.
Tuesday, May 13, 2008
Sunday, May 11, 2008
Whistle's Feeding Team
Warning - if you have a dislike for details regarding food, reflux, puking, gastrostomy tubes and such, skip this post. If bits of medical information fascinate you, read on.
As I mentioned a couple of days ago, Whistle has had a few appointments with a feeding team at a children's hospital in the bigger city. The feeding team is a trio of specialists: a dietician, a psychologist, and a speech therapist, in connection with a GI doctor. (We've been told that occupational therapists handle the part of feeding to the mouth, and speech therapists take over with the mouth, chewing, swallowing and such. Also FYI - for some kiddos, if you miss the 'window of opportunity' for the transition from nursing to oral feeding, sometimes kids develop texture and taste sensitivities, and have psychological reactions to the sight or thought of food. Then, even though there's no physical reason they can't swallow, there are many other factors that come in to play, and eating is a struggle for a lot of reasons.) For Whistle, reflux has always been a major stumbling block. When he came to us at 14 months old (and only 10 lbs, 6 oz), he was being g tube fed 24 hours/day, with a very specialized formula. It seemed like the formula came up as fast as we pumped it into him. (His weight would verify that - one of our newborns was almost the same size. I won't say whom, in order to protect her identity, since she's a blogger). He had a Nissen fundoplication surgery to stop the vomiting, and from then on he was able to keep his food down better, and we switched to Pediasure (think Ensure for toddlers). From that point on, he began to grow. He did continue to have some retching and vomiting, though, and he began to connect the feelings in his stomach with pain, and food became a negative thing for him. He was tube feeding overnight, and had problems almost every morning between 4 and 8, when his stomach was the most full. It was not fun. We tried new formulas, new rates of feeding, and other tricks of the trade, but never could find the right combination. He'd eat a bite or two of spicy or crunchy food, but that was it. Last fall, he went back to eating nothing at all by mouth, and his stomach hurt much of the time.
We heard about this feeding team, and decided to make an appointment with the GI doc who works with them - the first step. For no good reason, it took months and months to get beyond the doctor and in to see the team. In the meantime, we discovered that he did better with a specific formula that is more concentrated that Pediasure (Resource Just For Kids), and when we switched to Resource Just for Kids without fiber, it was wonderful!!! The pain gradually went away, and we saw his appetite returning. Then we were ready to see the team, and hopeful that they could help us over the next hurdle.
Once we actually saw them, they set right to work! Before the first appointment, our local speech/feeding therapist helped us record Whistle's history: what we've tried, what worked, what didn't, and questions from her and from us. She went over all that information with one of the team members by phone, then faxed it. When we arrived, they were well-prepared. They talked to Father and I, and then watched Whistle eat from a hidden viewing room. They said they had no expectations, just wanted to know what a meal looked like for him, so we pretended like they weren't watching (you know how easy that was!). When we left, we had a plan! We were already doing many of the daily things they suggest, but some are new, and some we needed to be more faithful with. One change is to move some of the g tube feedings to meal times to help his feeling of fullness. The most valuable thing they are offering is their expertise on the balance between cutting back on the formula and continuing to grow, plus instructions on how to help him discover the normal feelings of hunger and fullness, and what they mean. We had not seen anyone before who was comfortable with cutting back his nutritional formula, but this group has experience with feeding challenges, and monitors it closely. All things have come together at the right time, and we're seeing successes!
We're not seeing the light at the end of the tunnel yet, but we at least are going forward down the track, and up to this point it's been 2 steps forward and one step back, so we're encouraged.
As I mentioned a couple of days ago, Whistle has had a few appointments with a feeding team at a children's hospital in the bigger city. The feeding team is a trio of specialists: a dietician, a psychologist, and a speech therapist, in connection with a GI doctor. (We've been told that occupational therapists handle the part of feeding to the mouth, and speech therapists take over with the mouth, chewing, swallowing and such. Also FYI - for some kiddos, if you miss the 'window of opportunity' for the transition from nursing to oral feeding, sometimes kids develop texture and taste sensitivities, and have psychological reactions to the sight or thought of food. Then, even though there's no physical reason they can't swallow, there are many other factors that come in to play, and eating is a struggle for a lot of reasons.) For Whistle, reflux has always been a major stumbling block. When he came to us at 14 months old (and only 10 lbs, 6 oz), he was being g tube fed 24 hours/day, with a very specialized formula. It seemed like the formula came up as fast as we pumped it into him. (His weight would verify that - one of our newborns was almost the same size. I won't say whom, in order to protect her identity, since she's a blogger). He had a Nissen fundoplication surgery to stop the vomiting, and from then on he was able to keep his food down better, and we switched to Pediasure (think Ensure for toddlers). From that point on, he began to grow. He did continue to have some retching and vomiting, though, and he began to connect the feelings in his stomach with pain, and food became a negative thing for him. He was tube feeding overnight, and had problems almost every morning between 4 and 8, when his stomach was the most full. It was not fun. We tried new formulas, new rates of feeding, and other tricks of the trade, but never could find the right combination. He'd eat a bite or two of spicy or crunchy food, but that was it. Last fall, he went back to eating nothing at all by mouth, and his stomach hurt much of the time.
We heard about this feeding team, and decided to make an appointment with the GI doc who works with them - the first step. For no good reason, it took months and months to get beyond the doctor and in to see the team. In the meantime, we discovered that he did better with a specific formula that is more concentrated that Pediasure (Resource Just For Kids), and when we switched to Resource Just for Kids without fiber, it was wonderful!!! The pain gradually went away, and we saw his appetite returning. Then we were ready to see the team, and hopeful that they could help us over the next hurdle.
Once we actually saw them, they set right to work! Before the first appointment, our local speech/feeding therapist helped us record Whistle's history: what we've tried, what worked, what didn't, and questions from her and from us. She went over all that information with one of the team members by phone, then faxed it. When we arrived, they were well-prepared. They talked to Father and I, and then watched Whistle eat from a hidden viewing room. They said they had no expectations, just wanted to know what a meal looked like for him, so we pretended like they weren't watching (you know how easy that was!). When we left, we had a plan! We were already doing many of the daily things they suggest, but some are new, and some we needed to be more faithful with. One change is to move some of the g tube feedings to meal times to help his feeling of fullness. The most valuable thing they are offering is their expertise on the balance between cutting back on the formula and continuing to grow, plus instructions on how to help him discover the normal feelings of hunger and fullness, and what they mean. We had not seen anyone before who was comfortable with cutting back his nutritional formula, but this group has experience with feeding challenges, and monitors it closely. All things have come together at the right time, and we're seeing successes!
We're not seeing the light at the end of the tunnel yet, but we at least are going forward down the track, and up to this point it's been 2 steps forward and one step back, so we're encouraged.
Saturday, May 10, 2008
Quick Month!
Last post: April 10th.
Today: May 10th.
We're still here.
This is what we've been doing:
--- Whistle played and the family watched practices and soccer games. (More were rescheduled because of rain than were actually played.)
--- I made two home visits and am writing the home-study for a prospective adoptive family. (Drove 480 miles)
--- Joe got his cast off in the big city. He's walking pretty well. (Drove 280 miles)
--- Hugger celebrated his 23rd birthday at home, at work, at Ben's, at church, and any place else he could think of.
--- Teenager and Hugger attended a surprise 30th birthday party for big brother Ben. George had a birthday the same week, but missed all the celebrations because he was working out of state. Poor George.
--- Father preached at a 3 day church meeting at another church, and we enjoyed visiting with the pastor's family; old friends we hadn't seen in a long time (Drove 250 miles)
--- 4 speech/feeding therapy appointments for Whistle (Drove 125 miles)
--- 1 family visit for Joe and Andy; sibling visits, and phone calls, too. (Drove 100 miles)
--- 3 counseling appointments
--- 3 feeding team appointments for Whistle in bigger city (Drove 425 miles)
--- 4 piano lessons for Teenager, 1 rehearsal, 1 recital
--- 8 or 10 evenings for Teenager working as a companion to senior citizen friend
--- Hosted 3 day church meeting at our home church, with guests at home and serving meals at church; 3 regular Sunday services and 4 Bible studies.
--- Teenager volunteered at the food pantry, and helped a friend's mother with 2 catering events. The same friend spent the night once, and accompanied us to bigger city twice.
--- I attended training on social services agency policies and procedures.
--- Whistle invited big sister Sarah and nieces C. and E. to school for lunch on "Special Friends Day" (also known as Grandparents Day, for those who have grandparents close enough to attend)
--- I'm helping to prepare Foster Care Month celebration in front of the court house later in the month.
--- Teenager finished her school work a week early, took this week off, and will return next week for field trips, awards night, and graduation of the seniors.
--- I attended the annual planning meeting for Hugger with the agency who sponsors his program.
--- And the pre-IEP meeting for Whistle.
--- I attended Muffins with Mom with C. at her elementary school (Grandmas are invited, too)
--- 2 occupational therapy visits for Whistle (2 canceled because of conflicts)
--- Teenager celebrated her 16th birthday.
--- Andy got his cast off, too. He's not walking yet, but last night began standing on his foot, at least. He also got special sandals that hook to a brace for sleeping (Drove 280 miles)
--- Attended funeral for close family friend. She was a 38 year old mother of 8 children, who valiantly fought cancer. (Drove 1400 miles)
--- And we skipped the school carnival, because sometimes it's just better to be at home for a change.
Today: May 10th.
We're still here.
This is what we've been doing:
--- Whistle played and the family watched practices and soccer games. (More were rescheduled because of rain than were actually played.)
--- I made two home visits and am writing the home-study for a prospective adoptive family. (Drove 480 miles)
--- Joe got his cast off in the big city. He's walking pretty well. (Drove 280 miles)
--- Hugger celebrated his 23rd birthday at home, at work, at Ben's, at church, and any place else he could think of.
--- Teenager and Hugger attended a surprise 30th birthday party for big brother Ben. George had a birthday the same week, but missed all the celebrations because he was working out of state. Poor George.
--- Father preached at a 3 day church meeting at another church, and we enjoyed visiting with the pastor's family; old friends we hadn't seen in a long time (Drove 250 miles)
--- 4 speech/feeding therapy appointments for Whistle (Drove 125 miles)
--- 1 family visit for Joe and Andy; sibling visits, and phone calls, too. (Drove 100 miles)
--- 3 counseling appointments
--- 3 feeding team appointments for Whistle in bigger city (Drove 425 miles)
--- 4 piano lessons for Teenager, 1 rehearsal, 1 recital
--- 8 or 10 evenings for Teenager working as a companion to senior citizen friend
--- Hosted 3 day church meeting at our home church, with guests at home and serving meals at church; 3 regular Sunday services and 4 Bible studies.
--- Teenager volunteered at the food pantry, and helped a friend's mother with 2 catering events. The same friend spent the night once, and accompanied us to bigger city twice.
--- I attended training on social services agency policies and procedures.
--- Whistle invited big sister Sarah and nieces C. and E. to school for lunch on "Special Friends Day" (also known as Grandparents Day, for those who have grandparents close enough to attend)
--- I'm helping to prepare Foster Care Month celebration in front of the court house later in the month.
--- Teenager finished her school work a week early, took this week off, and will return next week for field trips, awards night, and graduation of the seniors.
--- I attended the annual planning meeting for Hugger with the agency who sponsors his program.
--- And the pre-IEP meeting for Whistle.
--- I attended Muffins with Mom with C. at her elementary school (Grandmas are invited, too)
--- 2 occupational therapy visits for Whistle (2 canceled because of conflicts)
--- Teenager celebrated her 16th birthday.
--- Andy got his cast off, too. He's not walking yet, but last night began standing on his foot, at least. He also got special sandals that hook to a brace for sleeping (Drove 280 miles)
--- Attended funeral for close family friend. She was a 38 year old mother of 8 children, who valiantly fought cancer. (Drove 1400 miles)
--- Home visits by caseworkers, hundreds of emails, phone calls, etc.
--- Whistle performed in Spring Concert with songs about the ocean.
--- Father went to work every day, and worked on the new garage and did spring yard work when he was home and not busy with parenting (sometimes known as "kid duties"). (Drove 32 miles every day, and then some)
--- Joe fell against a metal bench at the soccer game this morning, popped the skin on his forehead, and we made a quick trip to the doctor. No stitches, just steri-strips. He got a big yellow band-aid over the whole thing, because Band-Aids are what's important when you're 3 years old.
--- We missed the Kindergarten Reading/Writing Celebration, because some days we just can't get it all together, and we forgot to go.--- And we skipped the school carnival, because sometimes it's just better to be at home for a change.
That's why I haven't been blogging.
And if the price of gas is still going up because demand is down, it obviously isn't our fault. We're buying more than our share.
Thursday, April 10, 2008
Riding with Joe in the Van
Joe: "Mom, where you goin'? You goin' to Whistle's school? Then where you goin'? Then where you goin'? Who's goin' first? Why you slowin' down? Why you stopping? Mom, look at my apple. Mom, look at my apple. Mom, look at my apple up here. Now look at my apple. Why you turning? Why he doin' that? What's he doin'? Why you goin' too fast? You tryin' to get a license? Why you goin' fast? Why you slowin' down? Why you stoppin'? Why you turnin'? Who lives there? Who works there? Who lives there? What's that water doin'? What's that water doin' on the road? Why you stoppin? Why you turning around? Where you goin' mom? Why we goin' there? What's that car doin'? Why? Why we goin' here?"
Teenager: "Can you quit talking?"
Joe: "Yes."
(10 seconds later)
Joe: "Where you goin' mom? Why you turnin'?"
Teenager: "Can you quit talking?"
Joe: "Yes."
(10 seconds later)
Joe: "Where you goin' mom? Why you turnin'?"
Friday, April 4, 2008
Two Unrelated Ideas
There hasn't been much that's newsworthy, so I'll share these with you today:
Last night when I was making the boys' favorite supper (pancakes, sausage and eggs), Whistle picked up an egg from the carton, and solemnly told Joe, "If this egg wasn't dead, it might have a chicken in it!"
Last night when I was making the boys' favorite supper (pancakes, sausage and eggs), Whistle picked up an egg from the carton, and solemnly told Joe, "If this egg wasn't dead, it might have a chicken in it!"
And a good thought for today:
One should take children's philosophy to heart. They never despise a bubble because it burst; they immediately set to work to blow another one.
Monday, March 24, 2008
Happy Easter
Like most others we know, we've been dyeing/hiding/hunting eggs the last few days. Joe and Andy learned about Easter traditions at their pre-school with dyeing and an Easter egg hunt, Whistle dyed eggs at his school, and yesterday we had an egg hunt in the park with some of Whistle's birth siblings. Two of his sisters are 6 and 8, and one brother about 10. We met their foster families at a park, and Teenager helped others hide eggs for the younger ones to find. (One mom remarked that it sure took a LOT longer to hide them, than it did to find them!) Joe had the disadvantage of having me pushing his wheelchair during the egg hunt. I headed in the wrong direction, so even though there were two of us, his basket wasn't very full in the end. I kept thinking we'd find some soon, heading for the next tree, but unfortunately I didn't look behind us, to see that ALL the others had gone to the left when we went to the right. Bad decision on my part. Poor Joe. He was happy with his finds, though, and I was proud of him for not noticing or counting.
I found out something new about Joe, too. He doesn't like chocolate. Can you imagine? Being the chocolate and nut fiend that I am, I just don't get that. He was happy to share his chocolate with others, and they all had non-chocolate candy, gum, and nickels and dimes as well. Afterwards some of the older kids tossed a football around, and the younger examined and traded their treats. We enjoyed being out in the sunshine, even though it felt good to wear our jackets. After several rainy days this week, it was a nice day to be out. Unfortunately, Andy wasn't able to come along, as he has a stomach virus.
That same bug kept he and Joe and I home from church today (Andy was the only ailing one), and we had a quiet day, with Andy taking several naps on my lap. This evening he perked up some and played a little with the others, and now it looks like Whistle is the next to come down with what appears to be quite a contagious bug. Our big accomplishment for this Easter Sunday was to send our dinner with the others to church, and watch a re-run Lawrence Welk Easter show on television. The big hit for the day was the sunglasses the boys received in their plastic pail/Easter baskets, and they wore them to church, to visit at the hospital, or just held them in their hands while they slept, depending on who and when it was.
Hopefully, this little bug the boys have won't last long, as all three boys have medical appointments this week that we don't want to miss.
For the kids here, it's Happy Spring Break week, also!
Update: On Monday morning, I met some of Joe's birth family, and was told he LOVES chocolate, and will gorge himself on it! Since he's totally refused to eat a bite of it this week , I wonder if he overdid it and now can't handle the thought of it. Hmmm . . . .
Monday, March 17, 2008
Update on the Boys
Our two newest residents are settling in, and we're having a good time together. Actually I should say they're having a good time with Whistle. The boys are fast friends, and love playing (actively, loudly) together.
I'm going to call the older of the two boys "Joe," because he looks like a certain Joe did when that Joe was much younger. His younger brother will be called "Andy." Last night the boys were playing horse. Not basketball horse, but ride-on-each-others'-backs horse. They tried different combinations of horse and rider, but settled on the fact that Whistle was strongest, and thus the best horse. After school today they were yelling, calling, directing each other in their play, and it was l-o-u-d loud. It didn't seem to matter than I reminded them over and over to hold it down - this was horse they were playing, and that horse was wild! They were so excited to be back together after each spent the day at their respective schools.
Andy is now able to walk on his cast, and Joe does a great job of scooting around on his hands and one knee, dragging his cast, and pushing with it occasionally when he's really in a hurry (and he thinks I'm not looking). Since we haven't seen these guys without leg casts which slow them down, I wonder what it will be like when they can actually run?
Also, considering the number of trucks, cars, blocks and toys on the floor, and the noise level, I wonder how long it will be before we can all get outside to play? It's raining today and tomorrow, but maybe sunny spring will be here soon.
I'm going to call the older of the two boys "Joe," because he looks like a certain Joe did when that Joe was much younger. His younger brother will be called "Andy." Last night the boys were playing horse. Not basketball horse, but ride-on-each-others'-backs horse. They tried different combinations of horse and rider, but settled on the fact that Whistle was strongest, and thus the best horse. After school today they were yelling, calling, directing each other in their play, and it was l-o-u-d loud. It didn't seem to matter than I reminded them over and over to hold it down - this was horse they were playing, and that horse was wild! They were so excited to be back together after each spent the day at their respective schools.
Andy is now able to walk on his cast, and Joe does a great job of scooting around on his hands and one knee, dragging his cast, and pushing with it occasionally when he's really in a hurry (and he thinks I'm not looking). Since we haven't seen these guys without leg casts which slow them down, I wonder what it will be like when they can actually run?
Also, considering the number of trucks, cars, blocks and toys on the floor, and the noise level, I wonder how long it will be before we can all get outside to play? It's raining today and tomorrow, but maybe sunny spring will be here soon.
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