Spencer is getting tested for Ohdo Syndrome next Tuesday. It's bitter sweet. I'm excited and nervous. It would be nice to confirm he does have it, but we are living in a state of where ignorance is bliss. They are doing the testing in the lab at Cincinnati Children's. Doctor Hopkin convinced his buddies in the lab to test some new powerful equipment by using Spencer's blood. Otherwise, our only other option was to send it to England and pay out of pocket. While the blood test may confirm that Spencer has Ohdo, it also may come back negative (but mean he still has it) or inconclusive. Either way, it's a start!
Recently I've been thinking a lot about potty training. While I realize Spencer isn't really ready yet, I figured we would give it a shot. I almost have him sitting on the potty. I have decided to switch him to pull-ups, mainly because he's a big boy now. We always told ourselves that we would never treat Spencer any differently because of his disabilities, and if he was a normie he would be wearing pull ups now. Spencer is very excited about the concept of wearing big boy pants:) One mom managed to get her non-verbal non-walking kiddo to become potty trained, so who knows! We're still going to do diapers later in the evening and at night. As soon as we can convince him to sit on the potty, which he did at the store and now he won't (of course), we're going to keep him on a loose schedule. The kid has been on a 3 hour schedule his whole life, so maybe it will work, who knows!
Friday, February 10, 2012
Thursday, February 9, 2012
Feeding Tube Awareness Week: Day Six
Topic - What do you want clinicians to know about the day-to-day life with a feeding tube?
That I know what I'm doing. I'm more educated on feeding tubes than our surgery doctor who manages our g-tube care (she even says as much). The only time I'm going to call the doc is when there is a clog I can't get undone or we need to go up in size. So when I do call, it's important. I'm also here as a lifeline for other parents who are knew at the whole tubie thing and have no clue what they are doing.
I also think it should be mandatory for all hospitals to teach parents how to change a gtube before they leave the hospital after surgery. Our surgery doc was AMAZED that we change his tube ourselves.
That I know what I'm doing. I'm more educated on feeding tubes than our surgery doctor who manages our g-tube care (she even says as much). The only time I'm going to call the doc is when there is a clog I can't get undone or we need to go up in size. So when I do call, it's important. I'm also here as a lifeline for other parents who are knew at the whole tubie thing and have no clue what they are doing.
I also think it should be mandatory for all hospitals to teach parents how to change a gtube before they leave the hospital after surgery. Our surgery doc was AMAZED that we change his tube ourselves.
Feeding Tube Awareness Week: Day Five
Topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.
We have been very fortunate to have a couple really amazing hospitals who actually know what a feeding tube is. At our Children's hospital tube feeding is a pretty regular thing. We've only had to go to the ER a couple times since the move, so we haven't really had too many problems. We usually get more grief over doing a blended diet.
Spencer does a blended diet because it's better for him than formula and he tolerates it well. In the tube feeding community, blended diet is not the norm. Our biggest crisis we've had with tube feeding naturally involves the tube and his special diet. Spencer had to stay overnight in the hospital for his cleft palate repair. I called in advance to make sure his diet could be accomidated. I was assured by two different groups of people that it wouldn't be a problem.
After the surgery we were taken to our room. I had made it very clear and had them tell the floor charge nurse that we had a special diet. When I requested food later that night all hell broke loose. They didn't have any pre-made blends that could be sent up from the formula room like the told me. I basically got purees from the cafeteria and had to blend it myself with no blender nor even a bowl. I had to get them to give me Elecare and mixed parts of the puree with it. I was super crazy pissed.
Another instance where blended diet nor tube feeding has really been understood is at our WIC office. We left an amazing WIC office back home. Yeah you had to wait a million hours, but the staff knew Spencer and knew I knew what I was doing. We come here and the nurse barely even knew what a feeding tube was, let alone the blended diet aspect. I had one nurse practically shove Elecare down my throat. It wasn't until I told her that formula is full of awful crap for kids and we don't need it that she shut up about it. If my kid can survive on food that his dad and I can eat, then I am adamantly against giving him formula. I know some kids need it to survive, Spencer is fortunately not one of those kids.
We have been very fortunate to have a couple really amazing hospitals who actually know what a feeding tube is. At our Children's hospital tube feeding is a pretty regular thing. We've only had to go to the ER a couple times since the move, so we haven't really had too many problems. We usually get more grief over doing a blended diet.
Spencer does a blended diet because it's better for him than formula and he tolerates it well. In the tube feeding community, blended diet is not the norm. Our biggest crisis we've had with tube feeding naturally involves the tube and his special diet. Spencer had to stay overnight in the hospital for his cleft palate repair. I called in advance to make sure his diet could be accomidated. I was assured by two different groups of people that it wouldn't be a problem.
After the surgery we were taken to our room. I had made it very clear and had them tell the floor charge nurse that we had a special diet. When I requested food later that night all hell broke loose. They didn't have any pre-made blends that could be sent up from the formula room like the told me. I basically got purees from the cafeteria and had to blend it myself with no blender nor even a bowl. I had to get them to give me Elecare and mixed parts of the puree with it. I was super crazy pissed.
Another instance where blended diet nor tube feeding has really been understood is at our WIC office. We left an amazing WIC office back home. Yeah you had to wait a million hours, but the staff knew Spencer and knew I knew what I was doing. We come here and the nurse barely even knew what a feeding tube was, let alone the blended diet aspect. I had one nurse practically shove Elecare down my throat. It wasn't until I told her that formula is full of awful crap for kids and we don't need it that she shut up about it. If my kid can survive on food that his dad and I can eat, then I am adamantly against giving him formula. I know some kids need it to survive, Spencer is fortunately not one of those kids.
Wednesday, February 8, 2012
Feeding Tube Awareness Week: Day Four
Topic - How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?
When you have a kid with special needs, you find out who your fair weather friends are. We have had several friendships waver off, and we've had several that have become stronger or didn't change at all. I have friends who don't ask questions and I have friends who ask tons of questions. I have also gained many, many friends through babycenter and facebook. Some of these people I consider my closest friends, even though most of them I haven't met in real life.
I reconnected with my father shortly before Spencer was born. Since then I also have become quite close to my step mother and my aunt, all of which live across the country. My aunt is a nurse who has fostered or adopted several children with various special needs. I know at one point and time she had 4 tubies. She has been a great source of advice and a great person to share tubie humor with. My parents, referring to my dad and step mother, have been so supportive, even though they have yet to meet Spencer. The point to stress here is, and keep things pertaining to awareness week, is that they don't see the tube. They see am amazing kid, not Spencer's genetic disorder.
Most of you know we moved three hours from home last September to be closer to my in-laws. My mother in law jumped right in to tube feeding and never looked back. I force FTA gear on her all the time and she loves it. While both of my parents in law have never treated Spencer any differently, my father in law has been quite hesitant about the feeding tube. We assure him that he won't break Spencer, but he is still cautious, which is understandable. My sister in law is starting to learn a lot more about feeding tubes and is learning how to feed Spencer. My brother in law, who doesn't really even touch small children in fear of breaking them, has even done a tube feeding.
The most constant question we get at family reunions is, "how's he doing?" Everyone in the extended family knows about Spencer and his tubie. I believe a lot of it is how we approach the topic. We have always talked about Spencer and his medical issues positively. We don't make a big deal out of his delays nor his feeding tube, and it really rubs off on the family (and the general public too). In our family, his tube isn't a big deal. They see him grow and thrive because of all our hard work and especially his tubie!
And us. How do I explain how awareness has helped my husband and I? I was fortunate to have a great team at the hospital. I'm also addicted to google. Anyhow, after we found out Spencer needed a feeding tube, we became experts. That's how I found the group on Babycenter and in turn found FTA. The hardest part about having a child with special needs was feeling alone. Facebook has given me a sense of community and we're not in it alone. My husband I are no longer the ones becoming aware. We are spreading awareness. We are now the person that people who are looking for help find. We educate and promote.
My kid has a feeding tube and he's doing awesome. Anyone can see that.
(I must also mention that last year we went rogue. We started doing a diet of blended foods through his tube. Luckily we had our medical team on our side. I would have never learned about BD without some also parents who also do it:)
When you have a kid with special needs, you find out who your fair weather friends are. We have had several friendships waver off, and we've had several that have become stronger or didn't change at all. I have friends who don't ask questions and I have friends who ask tons of questions. I have also gained many, many friends through babycenter and facebook. Some of these people I consider my closest friends, even though most of them I haven't met in real life.
I reconnected with my father shortly before Spencer was born. Since then I also have become quite close to my step mother and my aunt, all of which live across the country. My aunt is a nurse who has fostered or adopted several children with various special needs. I know at one point and time she had 4 tubies. She has been a great source of advice and a great person to share tubie humor with. My parents, referring to my dad and step mother, have been so supportive, even though they have yet to meet Spencer. The point to stress here is, and keep things pertaining to awareness week, is that they don't see the tube. They see am amazing kid, not Spencer's genetic disorder.
Most of you know we moved three hours from home last September to be closer to my in-laws. My mother in law jumped right in to tube feeding and never looked back. I force FTA gear on her all the time and she loves it. While both of my parents in law have never treated Spencer any differently, my father in law has been quite hesitant about the feeding tube. We assure him that he won't break Spencer, but he is still cautious, which is understandable. My sister in law is starting to learn a lot more about feeding tubes and is learning how to feed Spencer. My brother in law, who doesn't really even touch small children in fear of breaking them, has even done a tube feeding.
The most constant question we get at family reunions is, "how's he doing?" Everyone in the extended family knows about Spencer and his tubie. I believe a lot of it is how we approach the topic. We have always talked about Spencer and his medical issues positively. We don't make a big deal out of his delays nor his feeding tube, and it really rubs off on the family (and the general public too). In our family, his tube isn't a big deal. They see him grow and thrive because of all our hard work and especially his tubie!
And us. How do I explain how awareness has helped my husband and I? I was fortunate to have a great team at the hospital. I'm also addicted to google. Anyhow, after we found out Spencer needed a feeding tube, we became experts. That's how I found the group on Babycenter and in turn found FTA. The hardest part about having a child with special needs was feeling alone. Facebook has given me a sense of community and we're not in it alone. My husband I are no longer the ones becoming aware. We are spreading awareness. We are now the person that people who are looking for help find. We educate and promote.
My kid has a feeding tube and he's doing awesome. Anyone can see that.
(I must also mention that last year we went rogue. We started doing a diet of blended foods through his tube. Luckily we had our medical team on our side. I would have never learned about BD without some also parents who also do it:)
Monday, February 6, 2012
Feeding Tube Awareness Week: Day Three
Topic - Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires
We feed Spencer a blended diet. Every night a make him a blend usually consisting of around 5 oz of meat, 2 c soy milk, 1 6 oz container of soy yogurt, 2 oz almonds, 1 avocado, 2 tbsp olive oil, 1 c fruit, 1.5 c of veggies and whatever else I need to make up 1700 calories a day.
Spencer gets his first feed at 9am. I hand bolus his feeds in, meaning I take a 60ml syringe and attach his feeding tube extension in and push the food in his stomach. I then give him at least an ounce of water after. He eats again at noon, 3, 6, 9, and midnight.
Spence does eat orally, so we give him snacks throughout the day.
Compared to most parents our tube feeding schedule is pretty simple. Aside from wiping off his tubie everyday or cleaning it during a bath, it doesn't require a lot of care. What really makes our life complicated are all the non-tubie related stuff we do everyday!
We feed Spencer a blended diet. Every night a make him a blend usually consisting of around 5 oz of meat, 2 c soy milk, 1 6 oz container of soy yogurt, 2 oz almonds, 1 avocado, 2 tbsp olive oil, 1 c fruit, 1.5 c of veggies and whatever else I need to make up 1700 calories a day.
Spencer gets his first feed at 9am. I hand bolus his feeds in, meaning I take a 60ml syringe and attach his feeding tube extension in and push the food in his stomach. I then give him at least an ounce of water after. He eats again at noon, 3, 6, 9, and midnight.
Spence does eat orally, so we give him snacks throughout the day.
Compared to most parents our tube feeding schedule is pretty simple. Aside from wiping off his tubie everyday or cleaning it during a bath, it doesn't require a lot of care. What really makes our life complicated are all the non-tubie related stuff we do everyday!
Sunday, February 5, 2012
Feeding Tube Awareness Week: Day Two
Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.
Spencer has always had a feeding tube. He started with an NG tube, a tube that went through his nose and to his stomach, when he was a day old. He had his gtube tube placed when he was a month and a day old.
Spencer has a feeding tube because he never mastered eating. Along with his suspect genetic diagnosis, SBBYS Ohdo Syndrome, he also has something called Pierre Robin Sequence (PRS). Long story short, PRS caused Spencer's jaw to stop growing at some point and caused a host of issues. He has micrograthia, otherwise known as a small jaw, cleft palate, larygamalacia, tracheamalacia, and broncheamalacia, all are abnormalities of different parts of his airway system, some stenosis (narrowing of the airway, and cranio facial muscle weakness. He never figured out how to suck, breathe, and swallow at the same time because of these issues. He took from a special bottle pretty early on, but never more than 30mls a feed (an ounce). His wicked reflux didn't help any.
We had a discussion with his feeding therapist pretty early on in the NICU, after it was clear Spencer was struggling to make progress. She said we could keep the NG, in hopes he would figure it out, or get a gtube put in surgically for the long term. Our guts (mine and Jimmy's) told us it was going to be a long road and we decided on the Gtube. This has been the best medical decision we have ever made as Spencer promptly stopped taking the bottle as soon as he came home from the hospital.
At 6 months Spence started eating solids and then winter hit. He became a snot machine. The increased mucous made it nearly impossible for him to tell there was anything in his mouth, so he stopped eating. He never ate a lot, but it kind of broke my heart when he stopped all together. We never gave up, but didn't stress him out over it.
A few months after his first birthday, I started doing a blended foods diet with Spence...essentially I put foods in a blended and feed it through his feeding tube. He stopped puking. A few months after that he started letting me put food back into his mouth. Studies have shown that kids who do a blended diet are more likely to start eating orally. Spencer still struggles with eating, but he does eat! His most recent diagnosis of sensory integration disorder is also a huge barrier in his eating, but the more progress he makes the better his eating gets.
Spencer has always had a feeding tube. He started with an NG tube, a tube that went through his nose and to his stomach, when he was a day old. He had his gtube tube placed when he was a month and a day old.
Spencer has a feeding tube because he never mastered eating. Along with his suspect genetic diagnosis, SBBYS Ohdo Syndrome, he also has something called Pierre Robin Sequence (PRS). Long story short, PRS caused Spencer's jaw to stop growing at some point and caused a host of issues. He has micrograthia, otherwise known as a small jaw, cleft palate, larygamalacia, tracheamalacia, and broncheamalacia, all are abnormalities of different parts of his airway system, some stenosis (narrowing of the airway, and cranio facial muscle weakness. He never figured out how to suck, breathe, and swallow at the same time because of these issues. He took from a special bottle pretty early on, but never more than 30mls a feed (an ounce). His wicked reflux didn't help any.
We had a discussion with his feeding therapist pretty early on in the NICU, after it was clear Spencer was struggling to make progress. She said we could keep the NG, in hopes he would figure it out, or get a gtube put in surgically for the long term. Our guts (mine and Jimmy's) told us it was going to be a long road and we decided on the Gtube. This has been the best medical decision we have ever made as Spencer promptly stopped taking the bottle as soon as he came home from the hospital.
At 6 months Spence started eating solids and then winter hit. He became a snot machine. The increased mucous made it nearly impossible for him to tell there was anything in his mouth, so he stopped eating. He never ate a lot, but it kind of broke my heart when he stopped all together. We never gave up, but didn't stress him out over it.
A few months after his first birthday, I started doing a blended foods diet with Spence...essentially I put foods in a blended and feed it through his feeding tube. He stopped puking. A few months after that he started letting me put food back into his mouth. Studies have shown that kids who do a blended diet are more likely to start eating orally. Spencer still struggles with eating, but he does eat! His most recent diagnosis of sensory integration disorder is also a huge barrier in his eating, but the more progress he makes the better his eating gets.
Saturday, February 4, 2012
Feeding Tube Awareness Week: Day One
Topic: Why awareness is important to my family - What would be difference for me/my child if tube feeding was better understood?
One time I took Spencer to the Aquarium and a friend and I sat down with our children to eat lunch. Spencer needed to eat, so naturally I fed my child. I pulled up his shirt and hooked him up to his bolus and did our thing. I was vaguely aware of the lady sitting at the table next to us staring at us. After his feed, my friend said, "That lady was staring at you the whole time...rude ass people. I don't know how you do it."
The problem is we're used to it. Every time I feed my child a full meal in public we get stared at. If tube feeding was better understood, I could feed my child in public like any other mother would, breast or bottle. Some day, Spencer will notice the stares and that bothers me. Eating, no matter how it happens whether it's by tube, bottle, iv, or breast, shouldn't be a sideshow. It's how my kid survives.
One time I took Spencer to the Aquarium and a friend and I sat down with our children to eat lunch. Spencer needed to eat, so naturally I fed my child. I pulled up his shirt and hooked him up to his bolus and did our thing. I was vaguely aware of the lady sitting at the table next to us staring at us. After his feed, my friend said, "That lady was staring at you the whole time...rude ass people. I don't know how you do it."
The problem is we're used to it. Every time I feed my child a full meal in public we get stared at. If tube feeding was better understood, I could feed my child in public like any other mother would, breast or bottle. Some day, Spencer will notice the stares and that bothers me. Eating, no matter how it happens whether it's by tube, bottle, iv, or breast, shouldn't be a sideshow. It's how my kid survives.
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