10/13/08
10/12/08
Welcome to Our New Home
Bobby's web page at www.babyannounce.net/bobbyg is soon to expire so we decided to move to a site with more functionality. We can't really do Bobby justice without full multimedia capabilities. We'll gradually move over all the old content.
Things are quieting down for the Grunsteds. We have a new day care provider for Bobby, starting October 27th. Beth is very excited to work with Bobby and wants to take him on lots of fun field trips. Valerie and I are meeting on Tuesday with the executive director of the community center where we had unsuccessfully tried to place Bobby. Our hope is that the center will implement some new policies regarding their admission of special needs children. I'm a bit nervous. I'm good at writing letters but in person confrontation scares me. That's why it's good I have Valerie at my side.
Bobby is eating much easier these days. His endoscopy showed no physiological problems with his digestive tract. We'll find out tomorrow if he has any allergies. In the meantime, he's eating well and gaining weight. Hopefully this means that Bobby's problems were caused by an acid reflux problem that he's now outgrowing.
Because he feels better, we're able to get out of the house much more often. Friday night we went to dinner and to Borders. Pre Bobby, Valerie and I split up at the book store, convening after an hour or so for coffee and for a comparison of the books we'd found. Now Valerie and I split up at the book store only to run into each other five minutes later in the children's section to compare pop up books. I guess it's true what they say - the more things change, the more they stay the same.
Things are quieting down for the Grunsteds. We have a new day care provider for Bobby, starting October 27th. Beth is very excited to work with Bobby and wants to take him on lots of fun field trips. Valerie and I are meeting on Tuesday with the executive director of the community center where we had unsuccessfully tried to place Bobby. Our hope is that the center will implement some new policies regarding their admission of special needs children. I'm a bit nervous. I'm good at writing letters but in person confrontation scares me. That's why it's good I have Valerie at my side.
Bobby is eating much easier these days. His endoscopy showed no physiological problems with his digestive tract. We'll find out tomorrow if he has any allergies. In the meantime, he's eating well and gaining weight. Hopefully this means that Bobby's problems were caused by an acid reflux problem that he's now outgrowing.
Because he feels better, we're able to get out of the house much more often. Friday night we went to dinner and to Borders. Pre Bobby, Valerie and I split up at the book store, convening after an hour or so for coffee and for a comparison of the books we'd found. Now Valerie and I split up at the book store only to run into each other five minutes later in the children's section to compare pop up books. I guess it's true what they say - the more things change, the more they stay the same.
10/4/08
The Bubsy Blaster
It’s wild ride here on Magnolia Avenue, hitched to the Bubsy coaster like we are and all.
The hospitalization of Children’s lasted 4 days. On the first day, he was admitted from the emergency room. Cardiology discontinued Lasix, his primary diuretic. The GI doc (we’ll call him Dr. Josh…mostly because that’s his name) put him on senna, an over the counter medication to increase the motility of the bowels (help the poop work it’s way down the chute).
On the second day Bobby made a poop for the ages. Cardiology decided that he shouldn’t be off of his Lasix, so they put him on a new, smaller dose. GI said that if he pooped the next day he could go home.
On the third day, Cardiology decided to keep him to make sure he responded OK to the Lasix. GI was too busy to see Bobby.
On the fourth day, Bobby vomited up part of his morning feed. Cardiology wouldn’t release him, saying we needed to talk to GI. GI still didn’t see Bobby. After we paged Dr. Josh he said that Cardiology was keeping him. He also said we shouldn’t page him anymore because ‘he had hospital patients to take care of’.
After a flurry of angry calls questioning why our son was in the hospital and no one knew why, Bobby was released rather hastily. All we accomplished for the GI problems that took us to the hospital was getting an over the counter medication the doctor should have thought to prescribe on an outpatient basis. Instead, Dr. Josh poo-poo’d our concerns about Bobby’s constipation until we ended up in the emergency room with a baby screaming with abdominal pain.
With all of his GI problems, as of September 25, Bobby had lost 4 oz since his surgery two months earlier. He’d slid from the 50th percentile on the Down Syndrome growth chart to the 25th percentile. So, finally, the GI doctor (a new doctor, much more responsive) scheduled an endoscopy for this Tuesday, The endoscopy involves sending a little camera down Bobby’s esophagus and another one up his back side to look for any GI issues. It’s the best diagnostic test they have.Of course, the day the doctor decided to do the endoscopy is the day Bobby started gaining weight like a mad man. We tried a new feeding schedule. He spends 2 hours eating and hanging out in his Tucker sling, a device that keeps him from sliding when we elevate his bed. The elevation minimizes the acid reflux. In the last eight days, he’s gained over half a pound.
The week before and after Bobby’s hospitalization were also topsy turvy on the daycare end. It became very clear to us that the early head start program that accepted him never intended for Bobby to attend the program. They were afraid to turn him down because it might look like a violation of the Americans with Disability Act (ADA) so they accepted him and made the transition requirements impossible for two working parents.
We spent about a week, hat in hand, being interrogated by the center nurse who was frightening the staff with misinformation about Bobby’s condition and being ignored by the center director who failed to return our calls and emails. When we did talk to her she said that Bobby’s transition would take 3-4 weeks and would include requirements like Valerie and I taking time off work to attend the day care center without Bobby, so we could understand how the classroom works.
Then, towards the end of the second week, Valerie and I found our fire again. As desperate as we are to find day care, we couldn’t leave Bobby in a place that so clearly didn’t want him. I was struggling being in a position of trying to convince someone that Bobby was worth their time. He’s the sweetest human being in the world. Taking care of him is a privilege, not some problem to be dodged. Plus, if I’m forced to go there, there is the ADA, designed to protect the rights of innocents like Bobby. So, we’ve stopped being beggars and have started being ourselves – mamas fully capable of protecting their baby boy.
First we decided to get Bobby a nanny until after his surgery. We can’t really afford it, but it’s the safest solution for him and peace of mind for his mamas. We think we found the right person – a woman who’s spent years doing special needs adoptions. She’s taking a year off and wants to get some first hand baby sugar. Bobby’s just the guy for her.
Then we turned our attention to the day care center. We spoke with several advocates in the Down Syndrome community. We could sue. The evidence of discrimination is overwhelming. But, we don’t have the energy, nor are we interested in personal compensation. We want new policies. So we wrote a letter to the director, explaining our position and detailing our desired changes. And we copied everyone from the director’s supervisor to the U.S. Department of Justice. You can view it at the following link if you like:
http://docs.google.com/Doc?id=dhgg89hh_25mhc9wg3
Bobby himself is, of course, sweetly oblivious to the drama around him. He spends his days playing and smiling and listening to music. Classic Country Western is his favorite. He can scoot across his playpen now. He makes raspberries on the back of his hand. He is showing a proclivity towards cow related toys. Today we’re headed to Lambs Farm, a place in the suburbs that has residential and work programs for individuals with developmental disabilities. Our goal is to some pictures of Bobby and a real cow, horse, goat, chicken. I’m sure we’ll have a fabulous time – I just wish the rest of life could be so simple.
The hospitalization of Children’s lasted 4 days. On the first day, he was admitted from the emergency room. Cardiology discontinued Lasix, his primary diuretic. The GI doc (we’ll call him Dr. Josh…mostly because that’s his name) put him on senna, an over the counter medication to increase the motility of the bowels (help the poop work it’s way down the chute).
On the second day Bobby made a poop for the ages. Cardiology decided that he shouldn’t be off of his Lasix, so they put him on a new, smaller dose. GI said that if he pooped the next day he could go home.
On the third day, Cardiology decided to keep him to make sure he responded OK to the Lasix. GI was too busy to see Bobby.
On the fourth day, Bobby vomited up part of his morning feed. Cardiology wouldn’t release him, saying we needed to talk to GI. GI still didn’t see Bobby. After we paged Dr. Josh he said that Cardiology was keeping him. He also said we shouldn’t page him anymore because ‘he had hospital patients to take care of’.
After a flurry of angry calls questioning why our son was in the hospital and no one knew why, Bobby was released rather hastily. All we accomplished for the GI problems that took us to the hospital was getting an over the counter medication the doctor should have thought to prescribe on an outpatient basis. Instead, Dr. Josh poo-poo’d our concerns about Bobby’s constipation until we ended up in the emergency room with a baby screaming with abdominal pain.
With all of his GI problems, as of September 25, Bobby had lost 4 oz since his surgery two months earlier. He’d slid from the 50th percentile on the Down Syndrome growth chart to the 25th percentile. So, finally, the GI doctor (a new doctor, much more responsive) scheduled an endoscopy for this Tuesday, The endoscopy involves sending a little camera down Bobby’s esophagus and another one up his back side to look for any GI issues. It’s the best diagnostic test they have.Of course, the day the doctor decided to do the endoscopy is the day Bobby started gaining weight like a mad man. We tried a new feeding schedule. He spends 2 hours eating and hanging out in his Tucker sling, a device that keeps him from sliding when we elevate his bed. The elevation minimizes the acid reflux. In the last eight days, he’s gained over half a pound.
The week before and after Bobby’s hospitalization were also topsy turvy on the daycare end. It became very clear to us that the early head start program that accepted him never intended for Bobby to attend the program. They were afraid to turn him down because it might look like a violation of the Americans with Disability Act (ADA) so they accepted him and made the transition requirements impossible for two working parents.
We spent about a week, hat in hand, being interrogated by the center nurse who was frightening the staff with misinformation about Bobby’s condition and being ignored by the center director who failed to return our calls and emails. When we did talk to her she said that Bobby’s transition would take 3-4 weeks and would include requirements like Valerie and I taking time off work to attend the day care center without Bobby, so we could understand how the classroom works.
Then, towards the end of the second week, Valerie and I found our fire again. As desperate as we are to find day care, we couldn’t leave Bobby in a place that so clearly didn’t want him. I was struggling being in a position of trying to convince someone that Bobby was worth their time. He’s the sweetest human being in the world. Taking care of him is a privilege, not some problem to be dodged. Plus, if I’m forced to go there, there is the ADA, designed to protect the rights of innocents like Bobby. So, we’ve stopped being beggars and have started being ourselves – mamas fully capable of protecting their baby boy.
First we decided to get Bobby a nanny until after his surgery. We can’t really afford it, but it’s the safest solution for him and peace of mind for his mamas. We think we found the right person – a woman who’s spent years doing special needs adoptions. She’s taking a year off and wants to get some first hand baby sugar. Bobby’s just the guy for her.
Then we turned our attention to the day care center. We spoke with several advocates in the Down Syndrome community. We could sue. The evidence of discrimination is overwhelming. But, we don’t have the energy, nor are we interested in personal compensation. We want new policies. So we wrote a letter to the director, explaining our position and detailing our desired changes. And we copied everyone from the director’s supervisor to the U.S. Department of Justice. You can view it at the following link if you like:
http://docs.google.com/Doc?id=dhgg89hh_25mhc9wg3
Bobby himself is, of course, sweetly oblivious to the drama around him. He spends his days playing and smiling and listening to music. Classic Country Western is his favorite. He can scoot across his playpen now. He makes raspberries on the back of his hand. He is showing a proclivity towards cow related toys. Today we’re headed to Lambs Farm, a place in the suburbs that has residential and work programs for individuals with developmental disabilities. Our goal is to some pictures of Bobby and a real cow, horse, goat, chicken. I’m sure we’ll have a fabulous time – I just wish the rest of life could be so simple.
9/20/08
Oops, Bobby's Hospitalized Again
Well, we're back. We brought Bubsy to Children's Memorial this morning after the second straight night of no sleep. He's had abdominal pain for a while, first centerd around feeding times, that's gradually gotten worse. Last night, we couldn't get him any relief.
The doctors think it might be a side effect of one of his medications. Hopefully, it will be that easy. Otherwise, he'll have to be sedated for an endoscopy on Monday. They don't think anything really scary is wrong. They think he might be allergic to milk. Poor little guy.
Its not been a banner week for the Grunsteds. It started off well enough - Tuesday we had our adoption court hearing and Bobby was served with the papers announcing my intent to adopt him (see photo on home page). The hearing itself was easy - the judge asked about his feeding tube, asked what we did for a living, asked where we live and how long we've been together. He then told us about how the nun who runs a local group home for developmentally disabled folks is the aunt of one of the judges he works with.
To my surprise, the week's toughest interrogation took place on Wednesday when the nurse and head teacher at Bobby's new day care came to our house. The nurse was very rude and basically told us that Bobby shouldn't be in day care. This even though we have letters from each of Bobby's doctors saying they had no medical reason to advise against him being placed in the program. The worst part was that the nurse didn't listen to anything we had to say about Bobby's medical condition and apparenty scared the heck out of his prospective teacher. So we don't know what's going to happen. It's very scary because we had stopped looking for other options when Bobby was accepted and we told his current nanny her last day was October 1st. My biggest issue is not that they might decide Bobby's not safe to be in the program - if they can't provide for his care, then we don't want him there, obviously. But the decision isn't being made based on facts. Its being dictated by a nurse who has never examined Bobby or even spent 30 seconds thinking about him as Bobby instead of a baby with Ds. And instead of these questions coming up during the original enrolment, they accepted him even though they had access to all the medical information they are now using against him. We have a meeting next week to see what's going to happen.
So that's that. Valerie and I are worn out from worry over all of Bobby's issues. We have folks trying to help with day care ideas, but nothing seems to pan out. We had to go to the er to get some progress made with his GI issues. It's getting very difficult to keep the longer term in perspecive as we struggle to make progress in the now. Thank God Bobby is so cuddly.
The doctors think it might be a side effect of one of his medications. Hopefully, it will be that easy. Otherwise, he'll have to be sedated for an endoscopy on Monday. They don't think anything really scary is wrong. They think he might be allergic to milk. Poor little guy.
Its not been a banner week for the Grunsteds. It started off well enough - Tuesday we had our adoption court hearing and Bobby was served with the papers announcing my intent to adopt him (see photo on home page). The hearing itself was easy - the judge asked about his feeding tube, asked what we did for a living, asked where we live and how long we've been together. He then told us about how the nun who runs a local group home for developmentally disabled folks is the aunt of one of the judges he works with.
To my surprise, the week's toughest interrogation took place on Wednesday when the nurse and head teacher at Bobby's new day care came to our house. The nurse was very rude and basically told us that Bobby shouldn't be in day care. This even though we have letters from each of Bobby's doctors saying they had no medical reason to advise against him being placed in the program. The worst part was that the nurse didn't listen to anything we had to say about Bobby's medical condition and apparenty scared the heck out of his prospective teacher. So we don't know what's going to happen. It's very scary because we had stopped looking for other options when Bobby was accepted and we told his current nanny her last day was October 1st. My biggest issue is not that they might decide Bobby's not safe to be in the program - if they can't provide for his care, then we don't want him there, obviously. But the decision isn't being made based on facts. Its being dictated by a nurse who has never examined Bobby or even spent 30 seconds thinking about him as Bobby instead of a baby with Ds. And instead of these questions coming up during the original enrolment, they accepted him even though they had access to all the medical information they are now using against him. We have a meeting next week to see what's going to happen.
So that's that. Valerie and I are worn out from worry over all of Bobby's issues. We have folks trying to help with day care ideas, but nothing seems to pan out. We had to go to the er to get some progress made with his GI issues. It's getting very difficult to keep the longer term in perspecive as we struggle to make progress in the now. Thank God Bobby is so cuddly.
9/15/08
Daycare, Raspberries, and Pyloric Stenosis
It's been quite a few weeks in the life of young Master Bubs. We found daycare! And by we, I mean Valerie, who did nearly all of the work. Starting next week, Bobby will be attending an Early Head Start Program. He qualifies based upon his Down Syndrome diagnosis. They have a nurse on staff, a very palatable 3 teachers to 8 infant ratio, and a staff that is already charmed in advance by Bobby. It's a huge relief.
It's a huge relief because the feeding tube is not going anywhere for a while. Since Bobby's surgery we've scarcely been able to work with a bottle because he has had some severe digestive problems. What started as the occasional spit up became vomiting of 2-3 feeds a day. His weight stalled, he was miserable all of the time. The whole thing was terrible.
Last week we took him to the GI doctor. They found that his problem may be something called pyloric stenosis. Essentially, the condition is caused by an infant being unable to relax the muscle that connects the stomach and the first part of the small intestine. Over time, the muscle gets very big from being overworked and food can't pass out of the stomach very well. The solution is, of course, a surgery. But not a horrible one, like open heart surgery. We're doing more testing today, but we may just watch the condition for a month or two.
The good digestion news is that we switched to soy formula last week and things are looking up. Bobby has had several good days and seems to be feeling much better, although his daily fevers are returning. Some days it feels like we're just playing the carnival game 'Whack A Mole'. We whack one ailment into submission and two more pop up to replace it.
In much, much happier news, Bobby's progressing in his development. His neck is getting much stronger and he's able to hold it up for a few seconds at a time. We're working with him on putting his toes to his mouth (ab crunchers) and reaching for toys (working his pecs).
Verbally, he's going crazy. Sunday morning about 3 am I woke up to the sounds of Bobby fopping away in his bassinet. His favorite sentence so far involves a series of coos and ends with a raspberry. It's the sweetest sound ever.
Tomorrow the three of us go to court for Bobby's adoption hearing. I'm very excited because, before court, we have to go to the sheriff's office so Bobby can be served with papers. Five months old and, already, he'll have a record. That kid is 2 cool 4 drool.
It's a huge relief because the feeding tube is not going anywhere for a while. Since Bobby's surgery we've scarcely been able to work with a bottle because he has had some severe digestive problems. What started as the occasional spit up became vomiting of 2-3 feeds a day. His weight stalled, he was miserable all of the time. The whole thing was terrible.
Last week we took him to the GI doctor. They found that his problem may be something called pyloric stenosis. Essentially, the condition is caused by an infant being unable to relax the muscle that connects the stomach and the first part of the small intestine. Over time, the muscle gets very big from being overworked and food can't pass out of the stomach very well. The solution is, of course, a surgery. But not a horrible one, like open heart surgery. We're doing more testing today, but we may just watch the condition for a month or two.
The good digestion news is that we switched to soy formula last week and things are looking up. Bobby has had several good days and seems to be feeling much better, although his daily fevers are returning. Some days it feels like we're just playing the carnival game 'Whack A Mole'. We whack one ailment into submission and two more pop up to replace it.
In much, much happier news, Bobby's progressing in his development. His neck is getting much stronger and he's able to hold it up for a few seconds at a time. We're working with him on putting his toes to his mouth (ab crunchers) and reaching for toys (working his pecs).
Verbally, he's going crazy. Sunday morning about 3 am I woke up to the sounds of Bobby fopping away in his bassinet. His favorite sentence so far involves a series of coos and ends with a raspberry. It's the sweetest sound ever.
Tomorrow the three of us go to court for Bobby's adoption hearing. I'm very excited because, before court, we have to go to the sheriff's office so Bobby can be served with papers. Five months old and, already, he'll have a record. That kid is 2 cool 4 drool.
8/18/08
A New Life All Around
We are all adjusting to life after Bobby's surgery. Valerie and I agree that this new world we're in feels very different - his heart is no longer our primary concern, we have moved on to thinking about daycare and therapy and getting rid of the feeding tube.
Bobby doesn't feel well today. We think we may have aggravated his sternum that still needs to finish healing. He's been so active that we probably rushed his recovery a bit. I stayed home from work today and Valerie and I have been exchanging worried phone calls all day. I'm very comfortable now with dealing with symptoms of heart failure - not at all comfortable when he's achy or has a stuffy nose.
We're looking for new daycare, starting the end of next month. It's very difficult - folks are scared away by Bobby's feeding tube, even though, as we tell them, its much less work than bottle feeding. That said we have one option that's logistically challenging but feels like a great fit for Bobby. So we'll continue to look, knowing that we have a safety net. Its very hard to have so many people turning down our wonderful son. The good news - no one seems fazed by his Down Syndrome, just that tube.
We're starting physical, occupational, and speech therapy. In speech, our goal is to get rid that darn tube. Bobby's progressing - what was a horrible oral aversion has become manageable. He's learned to suck on his thumb. His poor muscle tone won't let him keep his hand to his mouth for long, so he's learned to use both arms - one as a brace and the other as the object of his thumb sucking desire. I love to see the resourcefulness in him.
In Physical and Occupational therapy we're working on his neck extension. Again because of muscle tone issues, Bobby can't turn his head from side to side. Instead, to see around a room, he extends his head back and views the world that way. Another resourceful ending, but one we can't encourage. So, we have exercises to work on his neck muscles. The new direction feels very appropriate - Bobby's learning to face the world with his chin down and his eyes straight ahead while Valerie and I are changing our focus as well, attending to Bobby's future in a world beyond heart defects. It's awkward and exciting for us all.
Bobby doesn't feel well today. We think we may have aggravated his sternum that still needs to finish healing. He's been so active that we probably rushed his recovery a bit. I stayed home from work today and Valerie and I have been exchanging worried phone calls all day. I'm very comfortable now with dealing with symptoms of heart failure - not at all comfortable when he's achy or has a stuffy nose.
We're looking for new daycare, starting the end of next month. It's very difficult - folks are scared away by Bobby's feeding tube, even though, as we tell them, its much less work than bottle feeding. That said we have one option that's logistically challenging but feels like a great fit for Bobby. So we'll continue to look, knowing that we have a safety net. Its very hard to have so many people turning down our wonderful son. The good news - no one seems fazed by his Down Syndrome, just that tube.
We're starting physical, occupational, and speech therapy. In speech, our goal is to get rid that darn tube. Bobby's progressing - what was a horrible oral aversion has become manageable. He's learned to suck on his thumb. His poor muscle tone won't let him keep his hand to his mouth for long, so he's learned to use both arms - one as a brace and the other as the object of his thumb sucking desire. I love to see the resourcefulness in him.
In Physical and Occupational therapy we're working on his neck extension. Again because of muscle tone issues, Bobby can't turn his head from side to side. Instead, to see around a room, he extends his head back and views the world that way. Another resourceful ending, but one we can't encourage. So, we have exercises to work on his neck muscles. The new direction feels very appropriate - Bobby's learning to face the world with his chin down and his eyes straight ahead while Valerie and I are changing our focus as well, attending to Bobby's future in a world beyond heart defects. It's awkward and exciting for us all.
8/2/08
Bobby's Home
Bobby came home this morning. We are very relieved that today was the day - he's so tired of being poked and prodded that he was screaming at even minor procedures. Who can blame him? He got the last of his 3 IV liness out today - this one a central line that went into a vein by his heart. Last night they removed the stitches from the arterial line in his wrist that bled forever when they took it out last week. His chest is still swollen from his broken sternum. His cheek is scratched and raw from the tape that's been on his face to hold various feeding tubes and oxygen support. He's had endless thermometers and stethoscopes waved in front of him, stuck on and in him. Enough is enough. Now, he's asleep in his bassinet, tucked under his own blanket in his own house. It's quiet, it's dark, and it's a relief for all of us.
And an even greater relief? The swayhawk, suffering from little care and Bobby's tough times, is bowed but remains unbroken. We'll be washing it and returning the hawk to its full glory later on - after we give Bobby some time to recover from his debacle.
Thanks to all of you who have supported us these last weeks. It's been a tough time but your thoughts and prayers have seen us through.
And an even greater relief? The swayhawk, suffering from little care and Bobby's tough times, is bowed but remains unbroken. We'll be washing it and returning the hawk to its full glory later on - after we give Bobby some time to recover from his debacle.
Thanks to all of you who have supported us these last weeks. It's been a tough time but your thoughts and prayers have seen us through.
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