So, on Tuesday, X was weighed and measured. He gained .6 pounds in 12 days and has grown 1/4 inch. I called the GI doctor to see if we needed to add the hour back on his feedings. I still haven't heard anything. We worked so hard to get him to eat high calorie foods those 12 days. I hope it was enough weight gain.
We've also been working on increasing the rate of his feedings. Before our hospital stays in Feb and March, he was only getting 60ml of formula per hour, was hooked up to his feeding pump 20+ hours a day, and we had to drain stuff out of his stomach into a diaper while he slept ( called venting). When we were discharged from the hospital X was at a rate of 80ml per hour and we vented at night for just a few weeks.
Now, X is at 84ml per hour and we are not venting him at all. I do not miss venting him...we had so many leaks and it was a pain when he had to get up to pee in the middle of the night. I would have to hold this heavy diaper and help with tubing and his backpack, all around 3:00 am.
I would LOVE to get him up to 90-100ml per hour, but I don't know if that will work for X. We are increasing his rate by 1ml/hr every 5+ days. Which is a very slow way to increase, but if we go too quickly he will start throwing up again and we will be back to 60ml/hr. When X had the ng tube he was up to 86ml/hr until we tried the bolus feeds and everything went downhill.
Anyway, the good news is, X is gaining weight again and he is at a fast rate for him. He is hooked up from 6pm until 8:45am. He loves getting unhooked so early in the morning and it seems like he is getting hungrier earlier in the day and he is definitely hungrier in the evening.
Oh, and this boy, Mr. X? He is a maniac in the water. I am pretty sure he will be swimming before the summer is over. He is fearless and could care less if water gets up his nose or in his mouth. He is beginning to swim underwater. Really underwater, not just his face in the water. I do not know where this fearlessness comes from. It wasn't that long ago he would scream and cry when he needed his hair washed. Crazy.
I know at times my posts probably sound like a whine-fest. I do realize that we are blessed and fortunate. I don't think we have things worse than everyone else or that our family is unique. Sometimes all this stuff with the feeding tube is overwhelming and an inconvenience ( and yes, an inconvenience is not a horrible thing. I'll take inconvenient over the hospital stuff we had any day). And it's scary because we don't know why X won't eat enough and we don't know why the decrease in the amount of the protein in his formula stopped the vomiting. Those are two pretty big unknowns. I know God knows exactly what is going on, but I do not. So, I am learning to trust in the midst of the unknowns. Not an easy thing for me. I'll chalk it up to character development. But to be honest, I wouldn't mind a little less "character" in my life ;).
one of these times I'm going to leave all the autocorrect words in my post. it will read like a Mad Libs passage.
- Posted using BlogPress from my iPad
Sunday, July 29, 2012
Thursday, July 26, 2012
Camping!!!
The last week of June into the first week of July, we went tent camping at the Fall Lake campground near Ely. It took a little more planning and packing, but we did it!
We reserved an electrical site and brought the blender and a mini fridge ( thank you again Amy for that idea).
We could have made margaritas!
I measure out and labeled those throw away sippy cups so we could measure out X's formula and store it in the fridge. Then we threw away the cups so we didn't have to worry about having to clean the cups. The only things we needed to wash we're his feeding tubes and the blender. That was a little tricky, but we did it.
Not your typical looking camping picnic table, but it worked for us. Trying to measure out the formula into the cups with swarms of Mosquitos eating away at our hands and legs was less than pleasant. A screen tent is on our wish list now.
We used a bottle warmer by Bambinoz that is ingenious! It's a plastic thing filled with clear fluid (like a flexible ice pack). It has a little metal disc in it. We snapped the disc, the fluid turned cloudy and the pack turned solid and hot. We were able to keep the cups of formula warm for up to an hour in the insulated bag that came with it. Then, in the morning, we just placed the packs in boiling water to reset them and they were ready for the next night.
We recharged X's feeding pump at the electrical box during the day (that was a little nerve racking, having this expensive piece of medical equipment just sitting outside plugged into a post). Other than the cares of X's button, it was like a regular camping trip.
These boys are made to live outdoors.
(he does have shorts on). I love how he doesn't act like there is anything different about him. Children are amazing. They really are resilient.
He is eating raisins. Raisins!
What is it about sleeping children that is so perfect?
Camping was filled with the usual. S'mores, good food, hiking, swimming, climbing trees, and fun. It really wasn't any different than camping before. We actually skipped X's feeding the first night ( our GI doctor said we could skip all 3 nights if we wanted to....we didn't). And he had shortened feedings the other two nights ( he was only hooked up right when he went to bed until he woke up).
We only spilled the formula one night for the middle of the night feeding ( pouring a formula filled bottle into a small opening, with only the light of a flashlight was a little trickier than we thought...next time we'll bring a lantern). I was terrified a skunk or raccoon would try to get in because it smelled the formula ( have I ever mentioned how utterly nasty this stuff smells?). The tubing kinked up a lot as well, so that was a little annoying because this shrill beeping goes off. And I have to say that beep is about 20x louder in a tent.
It was definitely harder keeping the area around his button clean, and we are still dealing with the effects of that. I'll take care of that area differently next time we go camping ( I've agreed to go in the fall when there aren't any bugs).
Overall, it was a fun camping trip. The boys had a blast and it felt good knowing we were able to give X that experience.
Since we don't know how long X will need to have the feeding tube, I never want to tell him " no, you can't do that because you have a feeding tube". I don't mind saying "yes, you can do this, but we may have to do this a little differently". But I don't want to say "no, you can't". And so far, we've been able to do that. That makes me smile.
We reserved an electrical site and brought the blender and a mini fridge ( thank you again Amy for that idea).
We could have made margaritas!
I measure out and labeled those throw away sippy cups so we could measure out X's formula and store it in the fridge. Then we threw away the cups so we didn't have to worry about having to clean the cups. The only things we needed to wash we're his feeding tubes and the blender. That was a little tricky, but we did it.
Not your typical looking camping picnic table, but it worked for us. Trying to measure out the formula into the cups with swarms of Mosquitos eating away at our hands and legs was less than pleasant. A screen tent is on our wish list now.
We used a bottle warmer by Bambinoz that is ingenious! It's a plastic thing filled with clear fluid (like a flexible ice pack). It has a little metal disc in it. We snapped the disc, the fluid turned cloudy and the pack turned solid and hot. We were able to keep the cups of formula warm for up to an hour in the insulated bag that came with it. Then, in the morning, we just placed the packs in boiling water to reset them and they were ready for the next night.
We recharged X's feeding pump at the electrical box during the day (that was a little nerve racking, having this expensive piece of medical equipment just sitting outside plugged into a post). Other than the cares of X's button, it was like a regular camping trip.
These boys are made to live outdoors.
(he does have shorts on). I love how he doesn't act like there is anything different about him. Children are amazing. They really are resilient.
He is eating raisins. Raisins!
What is it about sleeping children that is so perfect?
Camping was filled with the usual. S'mores, good food, hiking, swimming, climbing trees, and fun. It really wasn't any different than camping before. We actually skipped X's feeding the first night ( our GI doctor said we could skip all 3 nights if we wanted to....we didn't). And he had shortened feedings the other two nights ( he was only hooked up right when he went to bed until he woke up).
We only spilled the formula one night for the middle of the night feeding ( pouring a formula filled bottle into a small opening, with only the light of a flashlight was a little trickier than we thought...next time we'll bring a lantern). I was terrified a skunk or raccoon would try to get in because it smelled the formula ( have I ever mentioned how utterly nasty this stuff smells?). The tubing kinked up a lot as well, so that was a little annoying because this shrill beeping goes off. And I have to say that beep is about 20x louder in a tent.
It was definitely harder keeping the area around his button clean, and we are still dealing with the effects of that. I'll take care of that area differently next time we go camping ( I've agreed to go in the fall when there aren't any bugs).
Overall, it was a fun camping trip. The boys had a blast and it felt good knowing we were able to give X that experience.
Since we don't know how long X will need to have the feeding tube, I never want to tell him " no, you can't do that because you have a feeding tube". I don't mind saying "yes, you can do this, but we may have to do this a little differently". But I don't want to say "no, you can't". And so far, we've been able to do that. That makes me smile.
Tuesday, July 24, 2012
Here and Now
Today I am having a harder time struggling with anxiety over X. I think it's for several reasons.
1). Last night the news had a segment on Whooping Cough. They had videos of children coughing. I've had seen these same images last week and they didn't affect me, but this time Craig pointed out one of the little boys looked like X. When I saw this little guy coughing so hard, I almost threw up and had that "zing" of adrenaline. I was almost back in those months leading up to our last hospital stay when X was so ill.
2). This morning X woke up stuffy and coughed on the gunk in his throat and immediately became nauseated. The puke bucket was back out, his feeding was paused and he was a bit panicked, but he was able to breathe through it and was okay. That definitely brought me back to the days of him being so sick ( he is so gaggy that any gunk in his throat makes him gag, and his tummy is so sensitive that any coughing makes him nauseous).
3). Tomorrow he'll get weighed and if he hasn't gained even a couple ounces, we need to add an hour to his feedings.
4). In October, X will have his feeding tube changed. For whatever reason, his system doesn't do well with these changes. Fall will be here before we know it.
5). Once fall is here, the flu and cold season begins. Whenever X gets any type of illness it results in throwing up and decreased feedings and weight loss.
6). N had his recheck for the patch on his eardrum last July. He still has a mild hearing loss and the audiologist said he had a small opening in his eardrum. For a while we thought N needed another surgery. Then the ENT removed some gunk from N's ear and he almost fainted. Poor guy had to lay down for a good 20 minutes in the office. He, thankfully, does not need surgery. The opening is the size of a pinhole, so we are good for now.
Sometimes I don't understand why I have the anxiety. We have had 3 months without throwing up or nausea (until this morning). And I am so grateful for these months. This is the best summer we have had in 5 years. I suppose some of this is to be expected. As long as I don't sit in the anxiety and dwell on all the things that could go wrong. The reality is, I have way more to be thankful for than to be worried about. Sometimes writing my worries down helps me to see the truth.
The truth is, X is not throwing up and we are not in the hospital. X is growing taller, even if he isn't gaining weight at the moment. He is wearing 4T shirts and shorts now. Last year at this time he was wearing 18 month shorts and 2T shirts. 3T shirts were huge on him. He is eating a huge variety of foods. Last year he would only eat crackers, cooked broccoli and peas, sun butter and jelly sandwiches and lunch meat. He would gag looking at most other foods and cry when foods were in his plate. We have a plan that works when he throws up when he is ill to keep him out of the hospital and help him tolerate his feeds. And the plan has worked. The doctors now understand X's GI system, even though he defies most medical sense and they understand I am not over exaggerating his symptoms. The radiologist knows where to place the g-j tube so X can tolerate it.
Okay, I think I just discredited all those anxieties. Sometimes I feel like a crazy person with all these thoughts swirling around. And luck you, you get a glimpse into my craziness ;). I would shut the share function off on this post, but I think I'd lose the whole post. Next time I'll shut the share function off on these types of posts before I start typing. And the next post will be about our camping trip earlier in the month.
- Posted using BlogPress from my iPad
1). Last night the news had a segment on Whooping Cough. They had videos of children coughing. I've had seen these same images last week and they didn't affect me, but this time Craig pointed out one of the little boys looked like X. When I saw this little guy coughing so hard, I almost threw up and had that "zing" of adrenaline. I was almost back in those months leading up to our last hospital stay when X was so ill.
2). This morning X woke up stuffy and coughed on the gunk in his throat and immediately became nauseated. The puke bucket was back out, his feeding was paused and he was a bit panicked, but he was able to breathe through it and was okay. That definitely brought me back to the days of him being so sick ( he is so gaggy that any gunk in his throat makes him gag, and his tummy is so sensitive that any coughing makes him nauseous).
3). Tomorrow he'll get weighed and if he hasn't gained even a couple ounces, we need to add an hour to his feedings.
4). In October, X will have his feeding tube changed. For whatever reason, his system doesn't do well with these changes. Fall will be here before we know it.
5). Once fall is here, the flu and cold season begins. Whenever X gets any type of illness it results in throwing up and decreased feedings and weight loss.
6). N had his recheck for the patch on his eardrum last July. He still has a mild hearing loss and the audiologist said he had a small opening in his eardrum. For a while we thought N needed another surgery. Then the ENT removed some gunk from N's ear and he almost fainted. Poor guy had to lay down for a good 20 minutes in the office. He, thankfully, does not need surgery. The opening is the size of a pinhole, so we are good for now.
Sometimes I don't understand why I have the anxiety. We have had 3 months without throwing up or nausea (until this morning). And I am so grateful for these months. This is the best summer we have had in 5 years. I suppose some of this is to be expected. As long as I don't sit in the anxiety and dwell on all the things that could go wrong. The reality is, I have way more to be thankful for than to be worried about. Sometimes writing my worries down helps me to see the truth.
The truth is, X is not throwing up and we are not in the hospital. X is growing taller, even if he isn't gaining weight at the moment. He is wearing 4T shirts and shorts now. Last year at this time he was wearing 18 month shorts and 2T shirts. 3T shirts were huge on him. He is eating a huge variety of foods. Last year he would only eat crackers, cooked broccoli and peas, sun butter and jelly sandwiches and lunch meat. He would gag looking at most other foods and cry when foods were in his plate. We have a plan that works when he throws up when he is ill to keep him out of the hospital and help him tolerate his feeds. And the plan has worked. The doctors now understand X's GI system, even though he defies most medical sense and they understand I am not over exaggerating his symptoms. The radiologist knows where to place the g-j tube so X can tolerate it.
Okay, I think I just discredited all those anxieties. Sometimes I feel like a crazy person with all these thoughts swirling around. And luck you, you get a glimpse into my craziness ;). I would shut the share function off on this post, but I think I'd lose the whole post. Next time I'll shut the share function off on these types of posts before I start typing. And the next post will be about our camping trip earlier in the month.
- Posted using BlogPress from my iPad
Monday, July 23, 2012
Tomorrows
I am so thankful for tomorrows! This morning was a good morning.
X did a fantastic job at feeding therapy. He ate small bits of tortillas wrapped around avocado and black beans like it was nothing. He had never had black beans before and was a little hesitant for about 30 seconds, but then it was all systems go! We have come so far from a year ago. Whenever he would look at a new food he would gag, get cranky, leave the table and often have a meltdown. We couldn't get him to sit at the table with us and mealtimes were loud and stressful. Now, he runs to the table excitedly and asks, "what's for supper?!". There isn't anything he won't at least try. It's amazing.
Today I was talking to a new therapist who was observing his session and I was explaining all this to her when it hit me. He has come a looong way! Its easy to forget that when I am in the day to day stuff and dealing with the feeding tube. I am grateful for this reminder. I don't know how long X will need his feeding tube (nobody knows) but I do know he is improving and growing and eating, so I don't think it will be forever. It could be years I guess (but I really hope not).
There is no way he would have eaten anything like this a year ago.
I feel that when I start to lose sight of how well things are going, or when I am caught up in the frustrating stuff, God gently helps me see the bigger picture. For that I am grateful.
X did a fantastic job at feeding therapy. He ate small bits of tortillas wrapped around avocado and black beans like it was nothing. He had never had black beans before and was a little hesitant for about 30 seconds, but then it was all systems go! We have come so far from a year ago. Whenever he would look at a new food he would gag, get cranky, leave the table and often have a meltdown. We couldn't get him to sit at the table with us and mealtimes were loud and stressful. Now, he runs to the table excitedly and asks, "what's for supper?!". There isn't anything he won't at least try. It's amazing.
Today I was talking to a new therapist who was observing his session and I was explaining all this to her when it hit me. He has come a looong way! Its easy to forget that when I am in the day to day stuff and dealing with the feeding tube. I am grateful for this reminder. I don't know how long X will need his feeding tube (nobody knows) but I do know he is improving and growing and eating, so I don't think it will be forever. It could be years I guess (but I really hope not).
There is no way he would have eaten anything like this a year ago.
I feel that when I start to lose sight of how well things are going, or when I am caught up in the frustrating stuff, God gently helps me see the bigger picture. For that I am grateful.
Sunday, July 22, 2012
Hunger
August 16, 2011
Well, the adventures with Maddox continue. We met with his GI doc last Tues, expecting to hear that Maddox was normal, just a little guy, but normal. Turns out that isn't the case. Maddox is not eating enough and is showing some signs of malnourishment in his blood work. He won't eat more than 1200 calories and he should be eating between 1500-1800. His white blood count was also low, so they rechecked that. (we haven't heard the results yet).
They are also checking him for Shwachmann-Diamond Syndrome. It has to do with the pancreas not working properly and troubles with bone marrow. But I am not too convinced he has that, and neither is the Dr.If he does have it, it is easily treated with enzymes, although he would need a bone marrow biopsy 1x/year.
The Dr also said that we need to do a feeding tube for Maddox. One that goes through his nose. The reasoning behind this: Because Maddox has never eaten much (because of the allergies and reflux), his body is in an aneorexic type state, so he doesn't feel hungry like he should and he fills up quickly. Which is why he isn't eating enough food. I met with our family Dr and he agreed with the plan, I talked with our nutrionist and she also agreed and has seen very good results with children like Maddox.
My biggest concern is the feeding tube. They don't sedate the children when they place the tube in through their nose and it is very uncomfortable. I also don't know exactly when we feed him with the tube. The Dr mentioned feeding him while he sleeps at night, but Maddox moves around so much at night, I don't know how that would even work. I would be afraid he would pull it out while rolling around and let the food go into his lungs. I obviously have a lot of questions for the Dr. I am waiting to hear from his nurse to see if she can get me in touch with some families who have done this before (Dr.'s idea). As soon as I ask my questions and talk with a family we'll schedule the appt, which I am sure will be right away.
sigh
I was hoping this month would be a nice relaxing month of hanging out at the beach and gearing up for school. next year.;)
So, that is what's going on around here. just tying to feed Maddox and sneak calories in where I can. We did go campling this past weekend. I'll have a post about that soon.
Well, the adventures with Maddox continue. We met with his GI doc last Tues, expecting to hear that Maddox was normal, just a little guy, but normal. Turns out that isn't the case. Maddox is not eating enough and is showing some signs of malnourishment in his blood work. He won't eat more than 1200 calories and he should be eating between 1500-1800. His white blood count was also low, so they rechecked that. (we haven't heard the results yet).
They are also checking him for Shwachmann-Diamond Syndrome. It has to do with the pancreas not working properly and troubles with bone marrow. But I am not too convinced he has that, and neither is the Dr.If he does have it, it is easily treated with enzymes, although he would need a bone marrow biopsy 1x/year.
The Dr also said that we need to do a feeding tube for Maddox. One that goes through his nose. The reasoning behind this: Because Maddox has never eaten much (because of the allergies and reflux), his body is in an aneorexic type state, so he doesn't feel hungry like he should and he fills up quickly. Which is why he isn't eating enough food. I met with our family Dr and he agreed with the plan, I talked with our nutrionist and she also agreed and has seen very good results with children like Maddox.
My biggest concern is the feeding tube. They don't sedate the children when they place the tube in through their nose and it is very uncomfortable. I also don't know exactly when we feed him with the tube. The Dr mentioned feeding him while he sleeps at night, but Maddox moves around so much at night, I don't know how that would even work. I would be afraid he would pull it out while rolling around and let the food go into his lungs. I obviously have a lot of questions for the Dr. I am waiting to hear from his nurse to see if she can get me in touch with some families who have done this before (Dr.'s idea). As soon as I ask my questions and talk with a family we'll schedule the appt, which I am sure will be right away.
sigh
I was hoping this month would be a nice relaxing month of hanging out at the beach and gearing up for school. next year.;)
So, that is what's going on around here. just tying to feed Maddox and sneak calories in where I can. We did go campling this past weekend. I'll have a post about that soon.
Frustrations
X is getting tired of his feeding tube. I am too. I don't blame him. He's so active and has to lug this backpack around wherever he goes while he is hooked up. At night he has all this tubing that sometimes wraps around his legs or torso. He usually needs to pee around 4am and needs help because he's half asleep trying to move around with the tubing and backpack (our bathroom is downstairs and he is just too big for the potty chair we had in his room).
The other morning he was demanding that I get him a shirt from his bedroom. When I did not comply with his "request", he burst into tears and screamed " but I don't want to have to carry my backpack!!!!". My heart sank. I compromised and carried the backpack and tubing for him while he picked out a shirt.
Tonight I decided one of these mornings N (our oldest son) and I will wear backpacks with a long string coming out of it attached to our waist for one hour. Just so we can empathize more with X. N is not thrilled about this plan. At. All. Which tells me this will be an excellent experience for everyone.
Ever since camping three weeks ago, X has been having issues with granulation tissue. It's extra skin that grows up around the opening where the Mic-Key button enters his stomach (it's called a stoma, but that word gives me the heebie-jeebies...I don't know why, it never used to). He didn't have any before camping and now I can't get rid of it. It can get out of control pretty fast, so it's something I want to get rid of as soon as possible. To help, I have been taking the tubes off of his button when his feeding is done, so they don't pull on it. He cannot stand having them taken off or put back on. Not because it hurts, but because it interrupts whatever he is doing. I try to do it at the same time everyday, but that isn't always possible. There is usually a lot of screaming and yelling involved. I'll probably have some form of hearing loss soon. It doesn't happen all the time, but definitely the majority of the time.
It's hard to balance it all (at least for me). Tonight was a rough night and I was less than patient with X, and it's nights like these when I want to chuck the thing in the trash can. However, I can't deny how much his feeding tube has helped him and continues to help him. I belong to two groups on facebook that are about feeding disorders and feeding tubes and I know we are blessed beyond belief. The days and nights aren't always easy, but Jesus continues to give me everything I need and thankfully there is a lot of grace and mercy involved. X has been given everything he needs to do this, and I see that on a daily basis, which blows my mind at times. N is learning things on so many different levels, it's astounding. So, we'll continue on this path, with the hope that X will be able to wean off his feeding tube.
The other morning he was demanding that I get him a shirt from his bedroom. When I did not comply with his "request", he burst into tears and screamed " but I don't want to have to carry my backpack!!!!". My heart sank. I compromised and carried the backpack and tubing for him while he picked out a shirt.
Tonight I decided one of these mornings N (our oldest son) and I will wear backpacks with a long string coming out of it attached to our waist for one hour. Just so we can empathize more with X. N is not thrilled about this plan. At. All. Which tells me this will be an excellent experience for everyone.
Ever since camping three weeks ago, X has been having issues with granulation tissue. It's extra skin that grows up around the opening where the Mic-Key button enters his stomach (it's called a stoma, but that word gives me the heebie-jeebies...I don't know why, it never used to). He didn't have any before camping and now I can't get rid of it. It can get out of control pretty fast, so it's something I want to get rid of as soon as possible. To help, I have been taking the tubes off of his button when his feeding is done, so they don't pull on it. He cannot stand having them taken off or put back on. Not because it hurts, but because it interrupts whatever he is doing. I try to do it at the same time everyday, but that isn't always possible. There is usually a lot of screaming and yelling involved. I'll probably have some form of hearing loss soon. It doesn't happen all the time, but definitely the majority of the time.
It's hard to balance it all (at least for me). Tonight was a rough night and I was less than patient with X, and it's nights like these when I want to chuck the thing in the trash can. However, I can't deny how much his feeding tube has helped him and continues to help him. I belong to two groups on facebook that are about feeding disorders and feeding tubes and I know we are blessed beyond belief. The days and nights aren't always easy, but Jesus continues to give me everything I need and thankfully there is a lot of grace and mercy involved. X has been given everything he needs to do this, and I see that on a daily basis, which blows my mind at times. N is learning things on so many different levels, it's astounding. So, we'll continue on this path, with the hope that X will be able to wean off his feeding tube.
Jumping In
I've been meaning to start a blog related to our youngest son's feeding issues (I'll refer to him as X) for a while now. X has had a feeding tube for almost 11 months now (we were told it would be a 3 month gig). He received a tube through his nose (n-g) tube Aug 29, 2011 and later received a g-j tube (one tube goes to his stomach, the other part goes to his small intestine) Dec.9th, 2011.
I've been blogging about it on my family blog, but that's really all I have been blogging about, and that is not all our life is about, so il decided to go with a separate blog.
I'll try to move posts from my other blog (if that's even possible), but for now, I'll just blog about where we are at right now.
X needed to get a feeding tube because he stopped growing and stopped gaining weight. His growth curve was flat. He didn't eat much, gagged just looking at most foods, and refluxed. He has several food allergies (but we are down to 5 foods from 15) which also get in the way of him taking in enough calories. He receives feeding therapy 1x week and that has made all the difference for him.
X is doing great right now. He is eating a lot more variety of foods (fresh fruits and vegetables), however he is not eating high calorie foods, which means he hasn't gained weight in 2 weeks and chances are we'll need to increase the amount of time he is on his feeding tube. sigh. We just decreased the amount of time he was on it by one hour 3 weeks ago.
One hour may not seem like much, but in our world, it's one more hour of freedom for X. Currently, X is hooked up to his feeding pump from 6pm until 9am. If he wants to play outside after supper, he needs to wear this little black nylon backpack and run around with 320ml of formula in it. That isn't all that fun when its 80-90 degrees out with high humidity while running around and playing on the playset. It also means we don't go to the beach after supper to cool down on hot days, because he can't exactly swim or immerse himself in the water with the feeding pump.
Last year I rigged up the pump and backpack with plastic bags so he could play in the sprinkler and play a little in the lake, but he is way more adventurous now, so that won't work. If we have to hook him up at 5pm, that would just stink.
So that's where we are at. I still can't believe it when I see X walking around with an apple while we are at a park and chomping away at it. It brings tears to my eyes. Or like today, he was munching on pea pods and baby carrots and crackers while at a park like most other kids. You would have never thought he needed a feeding tube. Somedays I just cry with thankfulness as he is eating and at his excitement to eat. Crazy huh? How just the simple act of my son eating food brings such joy to my heart. But that is our world at the moment and we are in a good place and I will continue to live in the moment and be happy.
I've been blogging about it on my family blog, but that's really all I have been blogging about, and that is not all our life is about, so il decided to go with a separate blog.
I'll try to move posts from my other blog (if that's even possible), but for now, I'll just blog about where we are at right now.
X needed to get a feeding tube because he stopped growing and stopped gaining weight. His growth curve was flat. He didn't eat much, gagged just looking at most foods, and refluxed. He has several food allergies (but we are down to 5 foods from 15) which also get in the way of him taking in enough calories. He receives feeding therapy 1x week and that has made all the difference for him.
X is doing great right now. He is eating a lot more variety of foods (fresh fruits and vegetables), however he is not eating high calorie foods, which means he hasn't gained weight in 2 weeks and chances are we'll need to increase the amount of time he is on his feeding tube. sigh. We just decreased the amount of time he was on it by one hour 3 weeks ago.
One hour may not seem like much, but in our world, it's one more hour of freedom for X. Currently, X is hooked up to his feeding pump from 6pm until 9am. If he wants to play outside after supper, he needs to wear this little black nylon backpack and run around with 320ml of formula in it. That isn't all that fun when its 80-90 degrees out with high humidity while running around and playing on the playset. It also means we don't go to the beach after supper to cool down on hot days, because he can't exactly swim or immerse himself in the water with the feeding pump.
Last year I rigged up the pump and backpack with plastic bags so he could play in the sprinkler and play a little in the lake, but he is way more adventurous now, so that won't work. If we have to hook him up at 5pm, that would just stink.
So that's where we are at. I still can't believe it when I see X walking around with an apple while we are at a park and chomping away at it. It brings tears to my eyes. Or like today, he was munching on pea pods and baby carrots and crackers while at a park like most other kids. You would have never thought he needed a feeding tube. Somedays I just cry with thankfulness as he is eating and at his excitement to eat. Crazy huh? How just the simple act of my son eating food brings such joy to my heart. But that is our world at the moment and we are in a good place and I will continue to live in the moment and be happy.
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