You can teach a boy how to hit a baseball, or how to play the clarinet. But rock gods are not made...rock and roll comes from the heart, baby.
9/6/09
9/4/09
Rum Tum Tumblers
First of all, Bobby continus to feel much, much better since his hospitalization. He is wretching less than he has in the last couple of weeks.
His GI system is so hard to predict. About 7 weeks ago we went to Bobby's GI doctor who was concerned about his lack of weight gain. He'd only gained 100 grams in the past month or so, according to the doctor's scales and growth chart we needed to up his calories. I say according to the doctor's scales and charts because Bobby continued to have fat on his arms and thighs, continued to have a pleasingly plump belly, and was still growing longer. Personally, I think the scales were off, but Bobby had been on the same calorie content for several months and so we figured that it might be time to increase that.
We moved him from formula that is made at 24 calorie/ounce to formula that is 27 calorie/ounce. Bobby is on Elecare, a special broken down formula that reduces issues with his milk intolerance but is otherwise really hard to digest. He did fine with the calorie increase for a week but then started to have increased wretching. He wasn't throwing up - until recently, his nissen fundoplication surgery prevented him from throwing up but he would gag and gasp like he had the dry heaves and his stomach quaked and shook in a way we describe as having a rum tum tumbler. When that happens, we attach a syringe to his feeding tube to allow the contents to drain. This was happening several times a day. Its horribly painful for him and it does result in calorie loss because half the time the contents of the syringe spill on us or him before we can get it back into his tummy.
So, we called Dr. Sentongo, our GI doc, and asked if we could try moving Bobby to soy formula. In the past, he has been able to digest 30 calorie/ounce soy formula. We'd had to stop using it when his milk intolerance worsened and the soy made him sick. Often this intolerance wanes by a baby's first birthday so we thought it was reasonable to give it another shot.
Bobby then had some food allergy tests and everything came back normal. Dr. Sentongo said we were safe to try Bobby on soy because it was very unlikely that it would make him sick. He might still have an intolerance that would take several days to be realized.
Well, we tried Bobby twice on soy. Once it was a low amount of straight soy. The second time it was 1 part soy formula mixed with 4 parts Elecare. Both times he got violently ill within an hour. He heaved so hard that he did throw up.
So, we stopped the soy. We'll try milk-based formula again after he's two. In the meantime, Valerie and I decided that we weren't going to force the 27 calorie Elecare on Bobby. Instead we went back to Dr. Sentongo who recommended that we start upping his volume. At the time, Bobby had an 11 hour feed at night where he got almost 2 ounces an hour. In the day time he had 3 bolus feeds where he got just under 3 ounces in an hour. Yes, that's eating 14 hours a day. In the daytime, he would get 2 hour breaks between meals. I was increasingly unhappy with this schedule, especially since we had also had a well child visit with our pediatrician where Bobby's placement on the growth chart was perfect - 50th percentile in weight and length for a child with Ds, which is where we've tried to keep him since birth.
But we followed the doctor's advice and tried upping the volume of his feeds and that worked for a few days but the wretching started once again. At some point in this period two other things started happening - one, food started coming up, something we thought the nissen would prevent and two, we think Bobby got a stomach virus.
Last weekend his wretching became nearly constant and he spit up large volumes several times (I've never quite decided where the boundary between spit up and vomiting is). We tried substituting formula feeds with Pedialyte to keep him hydrated but I think his body needed extra fluids because of the virus and we just couldn't keep up.
Monday we went to our long ago scheduled GI visit. We told Dr. Sentongo that we thought Bobby needed bowel rest and an IV and asked him to consider admitting Bobby, but the doctor was convinced that the wretching was reflux related and did not require intervention. This even though Bobby vomited all over me in the waiting room so we had evidence of how bad things had gotten. Valerie and I put our foot down about the feeding schedule - he is not going to eat 3 bolus during the day. The doctor sort of agreed, telling us to give him 2.5 bolus during the day. Valerie and I had a quick exchange of looks that confirmed between us that we weren't going to argue with the doctor and we weren't going to follow his advice either. In Monday's visit, the doctor's growth charts and scales showed what has been the case all along - Bobby is growing fine. He was growing fine in the wake of having numerous formula feeds replaced with Pedialyte. He was growing fine even though he was regularly rejecting his feeds.
Needless to say we're frustrated with Dr. Sentongo, especially given that Bobby ended up being hospitalized for dehydration a few hours and two feeds later. We're frustrated that Bobby had the nissen and yet is back on the road to throwing up, even though the surgeons say the operation went as it should.
We've decided to quit relying on the doctors for Bobby's feeding schedule. Certainly their advice matters, but I think they are so focused on getting a certain number of calories in Bubs that they don't think further than that. When we were waiting for Bobby's heart surgery his doctor told us that the minimum caloric intake for a baby with a bad heart was 125 cal/kg. We never got Bobby above 100 cal/kg (8-9 ounces less per day than what the doctor recommended) yet his weight and growth were fine. We believe that if we cut his feeds to 2 times a day plus the overnight feed there's a good chance he will have less come out through spit ups and venting and he'll feel better so we won't have to keep substituting Pedialyte for formula to keep his tummy under control. Our goal is to find the caloric intake that Bobby can comfortably manage and then see how the weight gain goes.
At Monday's appointment we also asked for another endoscopy to make sure everything is OK in Bobby's system. The doctor doesn't think it's necessary - largely because his growth is good. Yet last year, Bobby spent 2 months throwing up because of a bacterial infection called H.Pylori. It was detected in an endoscopy that was only done because he was losing weight. At some point, it seems to me that if Bobby is in so much discomfort from eating three ounces of formula in an hour, we should be able to have a doctor go take another look. Or at least do a biopsy to make sure he doesn't still have H.Pylori or some other bacterial issue that is oh so easy to pick up in the hospital.
So we keep slogging away. We have gotten so much wrong advice in Bobby's GI life that we don't know what to believe right now. I'm thankful that he is growing well and we aren't in a situation where this is becoming life or death. I suppose part of this is patience, waiting for Bobby to get stronger so he can digest more easily. Part of it is putting renewed emphasis on eating purees becaus he may never do great on an all formula diet. But mostly, I think we need to quit listening to all the outside noise and let Bobby's rum tum tum dictate the feeding schedule.
His GI system is so hard to predict. About 7 weeks ago we went to Bobby's GI doctor who was concerned about his lack of weight gain. He'd only gained 100 grams in the past month or so, according to the doctor's scales and growth chart we needed to up his calories. I say according to the doctor's scales and charts because Bobby continued to have fat on his arms and thighs, continued to have a pleasingly plump belly, and was still growing longer. Personally, I think the scales were off, but Bobby had been on the same calorie content for several months and so we figured that it might be time to increase that.
We moved him from formula that is made at 24 calorie/ounce to formula that is 27 calorie/ounce. Bobby is on Elecare, a special broken down formula that reduces issues with his milk intolerance but is otherwise really hard to digest. He did fine with the calorie increase for a week but then started to have increased wretching. He wasn't throwing up - until recently, his nissen fundoplication surgery prevented him from throwing up but he would gag and gasp like he had the dry heaves and his stomach quaked and shook in a way we describe as having a rum tum tumbler. When that happens, we attach a syringe to his feeding tube to allow the contents to drain. This was happening several times a day. Its horribly painful for him and it does result in calorie loss because half the time the contents of the syringe spill on us or him before we can get it back into his tummy.
So, we called Dr. Sentongo, our GI doc, and asked if we could try moving Bobby to soy formula. In the past, he has been able to digest 30 calorie/ounce soy formula. We'd had to stop using it when his milk intolerance worsened and the soy made him sick. Often this intolerance wanes by a baby's first birthday so we thought it was reasonable to give it another shot.
Bobby then had some food allergy tests and everything came back normal. Dr. Sentongo said we were safe to try Bobby on soy because it was very unlikely that it would make him sick. He might still have an intolerance that would take several days to be realized.
Well, we tried Bobby twice on soy. Once it was a low amount of straight soy. The second time it was 1 part soy formula mixed with 4 parts Elecare. Both times he got violently ill within an hour. He heaved so hard that he did throw up.
So, we stopped the soy. We'll try milk-based formula again after he's two. In the meantime, Valerie and I decided that we weren't going to force the 27 calorie Elecare on Bobby. Instead we went back to Dr. Sentongo who recommended that we start upping his volume. At the time, Bobby had an 11 hour feed at night where he got almost 2 ounces an hour. In the day time he had 3 bolus feeds where he got just under 3 ounces in an hour. Yes, that's eating 14 hours a day. In the daytime, he would get 2 hour breaks between meals. I was increasingly unhappy with this schedule, especially since we had also had a well child visit with our pediatrician where Bobby's placement on the growth chart was perfect - 50th percentile in weight and length for a child with Ds, which is where we've tried to keep him since birth.
But we followed the doctor's advice and tried upping the volume of his feeds and that worked for a few days but the wretching started once again. At some point in this period two other things started happening - one, food started coming up, something we thought the nissen would prevent and two, we think Bobby got a stomach virus.
Last weekend his wretching became nearly constant and he spit up large volumes several times (I've never quite decided where the boundary between spit up and vomiting is). We tried substituting formula feeds with Pedialyte to keep him hydrated but I think his body needed extra fluids because of the virus and we just couldn't keep up.
Monday we went to our long ago scheduled GI visit. We told Dr. Sentongo that we thought Bobby needed bowel rest and an IV and asked him to consider admitting Bobby, but the doctor was convinced that the wretching was reflux related and did not require intervention. This even though Bobby vomited all over me in the waiting room so we had evidence of how bad things had gotten. Valerie and I put our foot down about the feeding schedule - he is not going to eat 3 bolus during the day. The doctor sort of agreed, telling us to give him 2.5 bolus during the day. Valerie and I had a quick exchange of looks that confirmed between us that we weren't going to argue with the doctor and we weren't going to follow his advice either. In Monday's visit, the doctor's growth charts and scales showed what has been the case all along - Bobby is growing fine. He was growing fine in the wake of having numerous formula feeds replaced with Pedialyte. He was growing fine even though he was regularly rejecting his feeds.
Needless to say we're frustrated with Dr. Sentongo, especially given that Bobby ended up being hospitalized for dehydration a few hours and two feeds later. We're frustrated that Bobby had the nissen and yet is back on the road to throwing up, even though the surgeons say the operation went as it should.
We've decided to quit relying on the doctors for Bobby's feeding schedule. Certainly their advice matters, but I think they are so focused on getting a certain number of calories in Bubs that they don't think further than that. When we were waiting for Bobby's heart surgery his doctor told us that the minimum caloric intake for a baby with a bad heart was 125 cal/kg. We never got Bobby above 100 cal/kg (8-9 ounces less per day than what the doctor recommended) yet his weight and growth were fine. We believe that if we cut his feeds to 2 times a day plus the overnight feed there's a good chance he will have less come out through spit ups and venting and he'll feel better so we won't have to keep substituting Pedialyte for formula to keep his tummy under control. Our goal is to find the caloric intake that Bobby can comfortably manage and then see how the weight gain goes.
At Monday's appointment we also asked for another endoscopy to make sure everything is OK in Bobby's system. The doctor doesn't think it's necessary - largely because his growth is good. Yet last year, Bobby spent 2 months throwing up because of a bacterial infection called H.Pylori. It was detected in an endoscopy that was only done because he was losing weight. At some point, it seems to me that if Bobby is in so much discomfort from eating three ounces of formula in an hour, we should be able to have a doctor go take another look. Or at least do a biopsy to make sure he doesn't still have H.Pylori or some other bacterial issue that is oh so easy to pick up in the hospital.
So we keep slogging away. We have gotten so much wrong advice in Bobby's GI life that we don't know what to believe right now. I'm thankful that he is growing well and we aren't in a situation where this is becoming life or death. I suppose part of this is patience, waiting for Bobby to get stronger so he can digest more easily. Part of it is putting renewed emphasis on eating purees becaus he may never do great on an all formula diet. But mostly, I think we need to quit listening to all the outside noise and let Bobby's rum tum tum dictate the feeding schedule.
9/2/09
Estrella and Shafik
We had a little detour in Bubsy's road to health. Late last week he caught some sort of stomach bug. Post nissen surgery his stomach is not normal baby sized, so we were unable to keep him sufficiently hydrated. His blood sugar got too low, his dehydration took a toll on his heart and he started having some labored breathing. So, we ended up back in the hospital for 2 days.
Most importantly, Bobby is fine now. Maybe a little too fine as tonight, his first night home, he figured out how to pull on his g-tube cord so that the iv pole its attached to rolls across the floor. It's a good trick, a pretty smart trick I must say, but one we can definitely do without.
The hospital was interesting as always. Because he had had some vomiting and diarrhea he was put in isolation. At Children's isolation also means no roommate, which is a huge boon. It's rough to share a room at the hospital - first of all the rooms are tiny so mama ends up sleeping on a fold out chair jammed against Bobby's bed. A day or two of that kind of closeness is way too much. More important than that, who wants their sick baby in such close quarters with another sick baby? Bobby has gotten more viruses from the hospital than ailments our 11 hospital visits have cured. Lastly, a children's hospital is full of angry parents - parents who want their child discharged; parents who don't want to share a room; parents who don't believe the doctors are doing enough for their child; parents who are tired of dealing with residents and want to talk to a 'real' doctor. When I'm the angry parent, I don't really want a roommate listening in on my discussions about Bobby's care. When our roommate has an angry parent I balk at having to spend my day swimming in the negative energy. So, while I'm not happy Bubs had diarrhea, I will say that if he has to be hospitalized, I'd just as soon it be for something that lands him in isolation.
This hospitalization also marked Bobby's first ride in an ambulance. His labored breathing on Monday night was something new - I was used to his old huffing and puffing from congestive heart failure, but this was something scarier. He was breathing in loudly and forcing air out by puckering his mouth and blowing through his lips. At first I thought it was just a new oral activity for him, like raspberrying or fish face kisses. But as time wore on I became more and more worried. So I called an ambulance.
The paramedics showed up in about 3 minutes. Living next to a fire station is often a nuisance, with the loud sirens at all times of night. But living next to a fire station on Monday night was a blessing. They hooked up Bobby to a pulsometer to check his oxygen levels. Those were fine, but still I wanted him to go to the emergency room.
We ended up at Weiss Memorial hospital a few minutes from our house. It was our first visit to somewhere besides Children's. The care was good, although its much different to be in a hospital that's used to serving adults. The nurses didn't wear smocks with Sesame Street characters on them. They had to search for the right sized blood pressure cuffs. The only diaper they had was for a 30 pound baby. And, they had to search for someone to draw blood from Bobby.
Bobby is, as they say in the phlebotomy business, a 'tough stick'. I've watched a heart surgeon struggle to draw blood from him. Bobby's required an ultrasound for someone to find a vein in him. The angriest scar on his body is from an IV placement in his wrist that was so botched he required stitches.
At Children's, we only allow one phlebotomist to take Bobby's blood. Shafik has worked at Children's for 20 years and is unquestionably the best at what he does. He has arrived on the heels of the vascular access team, specialists in 'tough sticks' who often fail to get blood from Bubs. Shafik draws the blood in his first try. He's so skilled that Bobby doesn't always have time to cry. Shafik patiently searches for a vein, all the while comforting Bobby with his thick Arabic accent 'it's OK baby. Sorry baby. I'm almost done baby. It's OK baby. It's OK baby'. Without him, I'm afraid Bobby would look like a pin cushion now, so full of holes from failed sticks. To us, a good phlebotomist is as valuable as any member of the hospital staff. He has saved Bobby an unbelievable amount of suffering.
So at Weiss we were very concerned about Bobby's blood draw. If staff trained to work with children couldn't successfully get blood from Bobby, what could we expect of these folks? Sure enough, the first nurse came in, looked at his feet and his arms and then shook her head, telling our primary nurse to 'find Estrella'. Estrella was on triage duty that night and we waited a full hour and a half for her to have time to see us. Bobby's breathing had returned to normal and we considered signing ourselves out and taking Bobby to Children's, so convinced were we that the blood draw attempt would fail.
Finally, Estrella came into the room. She was an older woman, with gray streaks in her dark hair. She had glasses that sat low on her nose, as if she were more a librarian than a nurse. She studied Bobby's arms and feet for a long time, finally settling on his left foot. We held Bobby still as the needle went under his skin. I held my breath watching for blood to flow out. And it did.
"Thank God," Estrella said softly, repeating her praise just as Shafik repeats "It's OK baby. It's OK baby." For Estrella, Bobby actually fell asleep in the middle of the blood draw.
I thanked Estrella, telling her that she was only the second person to successfully draw blood from Bobby on the first try. "I prayed for it," she said.
She was so sincere. I was very touched. Obviously Estrella is very skilled at what she does. Her coworkers defer to her and she equaled the accomplishment of the very best phlebotomist we know. But for all her skill she doesn't forget the power of prayer. And in doing so she saved my little boy a lot of unhappiness and pain.
Most importantly, Bobby is fine now. Maybe a little too fine as tonight, his first night home, he figured out how to pull on his g-tube cord so that the iv pole its attached to rolls across the floor. It's a good trick, a pretty smart trick I must say, but one we can definitely do without.
The hospital was interesting as always. Because he had had some vomiting and diarrhea he was put in isolation. At Children's isolation also means no roommate, which is a huge boon. It's rough to share a room at the hospital - first of all the rooms are tiny so mama ends up sleeping on a fold out chair jammed against Bobby's bed. A day or two of that kind of closeness is way too much. More important than that, who wants their sick baby in such close quarters with another sick baby? Bobby has gotten more viruses from the hospital than ailments our 11 hospital visits have cured. Lastly, a children's hospital is full of angry parents - parents who want their child discharged; parents who don't want to share a room; parents who don't believe the doctors are doing enough for their child; parents who are tired of dealing with residents and want to talk to a 'real' doctor. When I'm the angry parent, I don't really want a roommate listening in on my discussions about Bobby's care. When our roommate has an angry parent I balk at having to spend my day swimming in the negative energy. So, while I'm not happy Bubs had diarrhea, I will say that if he has to be hospitalized, I'd just as soon it be for something that lands him in isolation.
This hospitalization also marked Bobby's first ride in an ambulance. His labored breathing on Monday night was something new - I was used to his old huffing and puffing from congestive heart failure, but this was something scarier. He was breathing in loudly and forcing air out by puckering his mouth and blowing through his lips. At first I thought it was just a new oral activity for him, like raspberrying or fish face kisses. But as time wore on I became more and more worried. So I called an ambulance.
The paramedics showed up in about 3 minutes. Living next to a fire station is often a nuisance, with the loud sirens at all times of night. But living next to a fire station on Monday night was a blessing. They hooked up Bobby to a pulsometer to check his oxygen levels. Those were fine, but still I wanted him to go to the emergency room.
We ended up at Weiss Memorial hospital a few minutes from our house. It was our first visit to somewhere besides Children's. The care was good, although its much different to be in a hospital that's used to serving adults. The nurses didn't wear smocks with Sesame Street characters on them. They had to search for the right sized blood pressure cuffs. The only diaper they had was for a 30 pound baby. And, they had to search for someone to draw blood from Bobby.
Bobby is, as they say in the phlebotomy business, a 'tough stick'. I've watched a heart surgeon struggle to draw blood from him. Bobby's required an ultrasound for someone to find a vein in him. The angriest scar on his body is from an IV placement in his wrist that was so botched he required stitches.
At Children's, we only allow one phlebotomist to take Bobby's blood. Shafik has worked at Children's for 20 years and is unquestionably the best at what he does. He has arrived on the heels of the vascular access team, specialists in 'tough sticks' who often fail to get blood from Bubs. Shafik draws the blood in his first try. He's so skilled that Bobby doesn't always have time to cry. Shafik patiently searches for a vein, all the while comforting Bobby with his thick Arabic accent 'it's OK baby. Sorry baby. I'm almost done baby. It's OK baby. It's OK baby'. Without him, I'm afraid Bobby would look like a pin cushion now, so full of holes from failed sticks. To us, a good phlebotomist is as valuable as any member of the hospital staff. He has saved Bobby an unbelievable amount of suffering.
So at Weiss we were very concerned about Bobby's blood draw. If staff trained to work with children couldn't successfully get blood from Bobby, what could we expect of these folks? Sure enough, the first nurse came in, looked at his feet and his arms and then shook her head, telling our primary nurse to 'find Estrella'. Estrella was on triage duty that night and we waited a full hour and a half for her to have time to see us. Bobby's breathing had returned to normal and we considered signing ourselves out and taking Bobby to Children's, so convinced were we that the blood draw attempt would fail.
Finally, Estrella came into the room. She was an older woman, with gray streaks in her dark hair. She had glasses that sat low on her nose, as if she were more a librarian than a nurse. She studied Bobby's arms and feet for a long time, finally settling on his left foot. We held Bobby still as the needle went under his skin. I held my breath watching for blood to flow out. And it did.
"Thank God," Estrella said softly, repeating her praise just as Shafik repeats "It's OK baby. It's OK baby." For Estrella, Bobby actually fell asleep in the middle of the blood draw.
I thanked Estrella, telling her that she was only the second person to successfully draw blood from Bobby on the first try. "I prayed for it," she said.
She was so sincere. I was very touched. Obviously Estrella is very skilled at what she does. Her coworkers defer to her and she equaled the accomplishment of the very best phlebotomist we know. But for all her skill she doesn't forget the power of prayer. And in doing so she saved my little boy a lot of unhappiness and pain.
9/1/09
8/18/09
8/5/09
Assessment Time
Its been a long couple of weeks here in Grunsted land. We've been going through Bobby's 1 year assessments (delayed because of all of his surgeries). The results have been disheartening. His Physical Therapy assessment showed him at the same age equivalency as his 6 month assessment. He came out as 4-5 months. To some extent, we just flat our reject that score. He is much, much stronger than he was 6 months ago and his general health and fitness aren't even comparable to winter time. But he has yet to achieve any of the major milestones - he can't roll over tummy to back by himself, he can't sit, he can't crawl, he can't walk. Etc.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
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