Posts
Things are going very well for Tyler. For a week now, he's been eating like there is no tomorrow. We are noticing his cheeks are beginning to fill out :) he actually is asking to eat and signed eat all on his own. I was in the kitchen and he walked up to me grabbed my hand and kind of threw it up toward the counter and then signed eat. He's really looking forward to eating as he asks to be put up in his chair at the table! We are no longer eating at the little table watching a video to get him to stay seated. We also do not have to use any type of supports such as books, etc. He's just happy to be there eating and at school the other day, he ate his full lunch all on his own! WOO HOO... things are really coming along in terms of his eating. one of the goals on his IEP has to do with him touching his food with his fingers, etc and that's also going well. He ate pineapple with his fingers and the sticky/wet of it didn't bother him. In the past, he's gotten upset or would obsess over his fingers/hand until we'd wipe away whatever was on his hand.
Back in November, Tyler had a bad bout of diarreah when we added in a new supplement to his diet. That experience caused him to start to rebel against diaper change...we dealt with this off and on until we got the norovirus and then of course with all that diahreah he definetly did not want his diaper changed so he'd do whatever he could to try to get out of it and protest while the diaper change was occuring. You learn in ABA 101 to not give any attention to bad behavior and give all kinds of attention to good behavior. Therefore, when changing Tyler's diaper, it is imperative that when he is throwing a fit, that no attention is given, we don't even give him any eye contact. We jsut change the diaper as fast as possible and then walk away. However, when we know he's gonna struggle with it, i.e. diarreah times or when he's not well, etc. we put supports in place before he acts up, i.e. we'll give him a toy before we lay him down tochange his diaper or we'll sing before we change the diaper so that we are helping him get through it. but if that does not/is not working and he begins to act up, you stop that support.. then if he stops acting up.. it's ok to start the support again. I'm not sure if any of that makes sense but essentially that's how we get him back to behaving appropriately during diaper change. It's working... he doesn't protest every diaper change anymore and his fits are taking less time to subside.i.e. he starts to whine or resist and realizes it's not getting him anywhyre, he stops.
Speaking of diaper change, we are beginning to potty train ben. He was ready for a while but didn't seem interested. Now he's interesetd and gets a jelly bean every time he goes potty on the big boy potty. We are gonna get him some pull ups this weekend. He's really doing a good job at going on the potty and looks forward to wearing big boy underwear like daddy!
We have an appt next week with Tyler's teacher and speech pathologist to discuss how Tyler is doing at school compared to his goals, etc. we are excited to announce that he has learned how to ride a bicycle and can now peddle faster than the teachers can walk and they can't keep up! They are gonna take video of him next week for us so we can show you. So cute! He also played trains with another kid in the class room which is huge. We have a lot of fights over trains/tracks in our house and he's usually pushing people away so it's great that he was interacting with another kid at school.
Steve and I also joined a parent support group at the school. THey provide child care onsite so it's fun for Ben too cause he feels like has a chance to go to school. THey actually watched the kids in Tyler's class room this week which was great since Tyler is familiar with it.
Friday, January 30, 2009
Thursday, January 22, 2009
12/22/09
I know it's been quite a while since I've written and many of you were worried about Tyler, sorry it's taken me so long to get back to updating the blog. Let's see... when we woke up last Saturday morning, Tyler had taken a turn for the worst. He had vomitted again and I could visually see all the food that we were able to get into him the day prior so I knew what little calories he had ingested were not being put to any good use! He was very sick looking and wanted to just lay in my arms and cry. Steve wasn't home and Ben was feeling great so I was struggling with keeping Ben happy, getting him breakfast, etc. and keeping Tyler content. My worry was mounting for Tyler. This would be day #7 that he had gone w/o really eating and to know taht hew as getting worse not better was really wearing on me. Steve made some calls to try to figure out where/how we could get him in to a doctor and avoid the hospital. We found somewhere to take him and luckily grandma was coming for a visit so she could play with Ben while we took Tyler in to the doc.
The peditrician we met with was AMAZING. She spent a good 45 minutes with us answering all our questions and she was very empathetic. She has a baby with neurological trouble and as a result has numerous feeding/sensory issues so she totally could understand our pain. In fact she said I used to agree with everyone else when they said, "if a kid is hungry, they will eat, they will not starve themselves", she goes, I now know, THAT"S NOT TRUE! Nope.. it sure isn't. Many kids with autism have eating issues. I think I posted a video once of a kid with autism who was anorexic becuase eating just caused him so much pain that he just chose not to eat. Kids with autism are far from typical! So anyway, she told us that as long as they are getting fluids and not dehydrated (which tyler showed no signs of dehydration) that they can go a good 10 days w/o eating so to call back on Tuesday if he hasn't gotten any better. We felt so relieved! I mean, still worried but at least we knew that we werent' making any mistakes by not taking him to the hospital. Oh, he was down to 25 lbs and we packed him full of fluid that morning so he was probably more int he 24 lb range. Tyler spends the rest of the day kind of being teh same, just laying on my lap, oaccsionalyl getting up to play and then coming back to my lap. Grandma was a great help cause she could play with Ben, Dad could get things done around the house, and I could hold Tyler.
Sunday morning rolls around and Tyler made a completel 180.. he ate a whole bowl of cereal for breakfast and was playing and smiling, it was great. My mom came down for a visit that morning as well. We were all happy to be back to normal or so we though. Steve's mom got sick Sunday night and is just now recovering. Got a call Sunday night that the youngest daughter of daycare was sick.. next night their sun, next day their older daughter and then last night, a call from teh oldest daughter saying the mom had gotten it. I found out yesterday talkign to some parents at Tyler's school that they ended up closing down the school when Tyler was out. We got a sheet from school explaining the norovirus and that it takes a minimum of 3 days after the person feels better to not be contagious and can be up to 10. wow! So we haven't had daycare this week, obviously and Steve and I have taken intermitten days off (except today) so that we could care for the boys. Ben has been having a great time since Tyler is in school most of the day, Ben has been getting spoiled. I took him to teh natural history museum yesterday to see dinosaur bones and he had a ton of fun. Today Grandpa is spoiling him :) We are hopign next week everything will finally get back to normal.
I also wanted to say "YEAH" I'm really excited Obama is now the president. Attached is a link to his agenda and he talks about autism and his plans for autism if you are interested.
http://www.whitehouse.gov/agenda/disabilities/
The peditrician we met with was AMAZING. She spent a good 45 minutes with us answering all our questions and she was very empathetic. She has a baby with neurological trouble and as a result has numerous feeding/sensory issues so she totally could understand our pain. In fact she said I used to agree with everyone else when they said, "if a kid is hungry, they will eat, they will not starve themselves", she goes, I now know, THAT"S NOT TRUE! Nope.. it sure isn't. Many kids with autism have eating issues. I think I posted a video once of a kid with autism who was anorexic becuase eating just caused him so much pain that he just chose not to eat. Kids with autism are far from typical! So anyway, she told us that as long as they are getting fluids and not dehydrated (which tyler showed no signs of dehydration) that they can go a good 10 days w/o eating so to call back on Tuesday if he hasn't gotten any better. We felt so relieved! I mean, still worried but at least we knew that we werent' making any mistakes by not taking him to the hospital. Oh, he was down to 25 lbs and we packed him full of fluid that morning so he was probably more int he 24 lb range. Tyler spends the rest of the day kind of being teh same, just laying on my lap, oaccsionalyl getting up to play and then coming back to my lap. Grandma was a great help cause she could play with Ben, Dad could get things done around the house, and I could hold Tyler.
Sunday morning rolls around and Tyler made a completel 180.. he ate a whole bowl of cereal for breakfast and was playing and smiling, it was great. My mom came down for a visit that morning as well. We were all happy to be back to normal or so we though. Steve's mom got sick Sunday night and is just now recovering. Got a call Sunday night that the youngest daughter of daycare was sick.. next night their sun, next day their older daughter and then last night, a call from teh oldest daughter saying the mom had gotten it. I found out yesterday talkign to some parents at Tyler's school that they ended up closing down the school when Tyler was out. We got a sheet from school explaining the norovirus and that it takes a minimum of 3 days after the person feels better to not be contagious and can be up to 10. wow! So we haven't had daycare this week, obviously and Steve and I have taken intermitten days off (except today) so that we could care for the boys. Ben has been having a great time since Tyler is in school most of the day, Ben has been getting spoiled. I took him to teh natural history museum yesterday to see dinosaur bones and he had a ton of fun. Today Grandpa is spoiling him :) We are hopign next week everything will finally get back to normal.
I also wanted to say "YEAH" I'm really excited Obama is now the president. Attached is a link to his agenda and he talks about autism and his plans for autism if you are interested.
http://www.whitehouse.gov/agenda/disabilities/
Friday, January 16, 2009
1/16/09
Steve and I discussed last night just how emotional hard it is to be Tyler's parent. The worry we have for him is unexplainable, we never worry about Ben the way we worry about Tyler. So everyone is back to normal, including Ben who is eating like champ and pooping up a storm, yeah, except Tyler. Tyler vomitted again at daycare yesterday, sigh. He's definetly low on energy and obviously not himself. I did forget to mention in my previous blog that we are obviously not giving him any supplements right now as we don't want to do anything to upset his system more than it is. Our trouble now is that he's gone so long without eating anything of significance that his tummy is so weak that it can't tolerate a lot of food or liquid at one time and by a lot I mean, we only give him one chicken nugget an hour and then 1/4 cup of juice or milk. He made it until abotu 5 p.m. at daycare yesterday and then vomitted and then was lethargic again aftet that. It's a fine line between giving him what he wants and what we want him to have (feast after feast after feast) and giving him just enough to keep him going and get him slowly back to recovery without vomiting. each time he vomits then makes it harder for him to eat the next time, sigh. I told Steve last night that I Just want to get back to our normal stressful life with his our battle with autism. Because at least with that battle, we know Tyler's immediate health is not at stake and we just have long term goals in mind. This eating/drinking/vomiting/diarreah situation is just so concerning an we have no one to discuss our concerns with. I called his pediatrician the other day to ask how long he can go on so few calories before it gets dangerous and we shoudl take him to the hospital and I found out our peditrician has left the office. I asked why I wasn't notified in a letter, they said that they had postings around the buliding. Our kids rarely go to the doc so I had no idea. I asked what we do if we need to see a doc and they said we can see another doctor (regular) until they find a new peditrician. Well explaning Tyler's history to a new doctor is tough but someone who isn't in peds is even tougher and taking Tyler in on a weak stomach, not good either. Tyler gets very upset during exams and occasinoally vomits (the whole reason' we'd be there) so for someon enew that doesn't understand how you have to go about examning him and the patience involved and the things he despises (like checking his ears) well it's all just a nightmare.
Ok, so everyone please see a big prayer and cross your fingers that our little guy turns around soon because if we do not see any major improvement by Monday we'll probably take him to the hospital to ensure his immediate health is not at risk. Sigh..
Thursday, January 15, 2009
1/15/09 Whew....
Whew!!!! That word would best describe how I feel now that we seem to all be on the road to recovery. Tyler brought home the Novovirus from school and it has wreaked habit on our household since Saturday. If you dont' know what the virus is, it causes massive diarreah and vomitting. Let's see, this is how it all played out.
Saturday night: I hear Tyler coughing through the monitor, sounded like he was gagging just a bit so I assumed he was getting a cold, he never cried or seemed distraught so I did not bother him.
Sunday morning: Ben and I wake up and are playing. It's now 8 a.m. and I haven't heard from Tyler, I go up to check up him and see that sometime in the night he had vomitted everywhere (poor guy slept in it :(). I wasn't aware of just how sick he was quite yet, just assumed something upset his tummy. We sat down to eat breakfast, Tyler wasn't interested in eating but did drink his milk so I had a hunch that he wasn't feeling well. Then suddenly he vomits everywhere. Ig et up to take off his clothes and clean him up and clean up the floor, once I get him out of the chair, i can hear him start to gag so I race him into the kitchen to the sink he begins spraying liquid everywhere.. we make it to the sink. I hear Ben running to the kitchen and shout, please stop, don't come in. I can just imagine him running in, slippin gon the vomit and cracking his head on the floor. he listedn, thank goodness. As i'm standing with Tyler at the sink, Ben is telling me Clifford is licking Tyler's puke on the floor. Yum! Ok so you get the point, Tyler definetly not doing well on Sunday...Sunday night rolls around and Tyler is able to drink a bit of fluids and hold it down so we are happy about that, everyone else seems fine. We decide I'd stay home with Tyler on Monday and send Ben to daycare.
Monday: Dad goes to work, drops Ben at daycare and Tyler and mom stay home. Tyler not interested in eating but holding down small bits of fluid at a time. Vomits if given too much at a time. Around 9 a.m. mom feels queezy... by 10;30 mom is in roug shape and asks Steve to come home from work. Steve gets home from work after lunch (not that there was any lunch at our house) and mom retreats to the bedroom for an afternoon of vomitting, diareeah, etc. dad cares for Tyler and picks up Ben from daycare. Nighttime rolls around.. tyler eats a few pretzels, yeah, Ben seems great and so is dad. Dad brings mom some crackers and finally a glass of water (hadn't been able to drink all day) and the boys are down for the night... 9:30 p.m. Steve comes in.. Ben puked everywehre, oh goodie.. I take Ben to the bathroom for massive clean up, Steve deals with bedding, Ben's crying wakes up Tyler (who is so wheepy from being ill and he wants mom). After cleaning up ben, mom rocks both ben and Tyler in rocking chair while dad finishes cleaning up bedding. Ben pukes in chair before we could get him the bucket.. round 3 pajamas.. actually we let him sit half dressed with bucket. I tell dad that he needs to vomit a good 6 times before we can even attempt to lay him down. I got about 3 out of him and we decided to get him in a bath to clean up. We had our bucket for those wonderful moments. Dad was able to calm Tyelr down and get him back to bed. I beg dad to wash his hands and do his best to not breath in the puke air.. how do you avoid it right. So Ben pukes another 2 times in the bath tub and twice as I got him out. We made a bed for ben beside my bed with his bucket and towels on hand. In total, Ben puked 10 times in two hours and hten for the remainder of the evening was dry heaving every 25 - 30 mins. POOOR KID! It was hard to see him go through it all. Hew as so tired he couldn't sit up and was so floppy when I tried to sit him up to get his little bits into the bucket..there wasn't much left in him but enoguh that i didnt' want him to swallow it as that's what he would choose to do had i left him. Sorry I know this is all gross but there is a reason for me writing thi sall down and you don't have to read it if it's grossing you out. Oh.. so let me got back a bit.. as soon as we got Ben in bed and resting.. I hear Steve in the bathroom, oh no, it got him too. I asked him to use the restroom downstairs so that we wouldn't wake up Tyler again so then I was playing "on/off" with the monitor all night. Cause the monitor would pick up Steve puking downstairs so I'd have to turn it off cause I didn't want it to wake Ben as he was getting so little rest anyway, but then I couldn't turn it off cause if Tyler woke up and needed somethign In eeded to know, so we played on off with the monitor. Between the on/off fun monitor game and helping Ben with his dry heaves, there wasn't much sleeping on mom's part which was tough after a day of vomitting/diarreah and no drink and food.
Tuesday: Ben somehow wakes up ready to watch a movie and snuggle at 6 a.m., WHAT!!! Ok so Ben and mom get up. we let dad rest after his night of vomitting. Tyler wakes up and his worse than he was the day before. I'm super worreid, he's very lethargic and whimpery and seems to be doing worse than Ben. Boys are competing for Mom's "love" and aren't so interested in sharing it. Both boys vomit up their juice aka breakfast which wasn't a lot but we go back to giving them a sip or two at a time. Everyone is tried and Tyler I am unable to console Tyler so mid mornign I take Tyler upstairs to rock him. Daycare runs tot he grocery store to get us popsicles, she was free since our kids weren't coming that morning. I am able to get Tyler to rest so I lay him down and go lay down myself. Steve and Ben hang out and then also both take a nap. Mom is thinking by evening everyone should be feeling better by evening. When Tyler wakes up from his nap, he is still not well, wants more and more milk but we are afraid of him vomitting and we can't get him to stop crying. We consider taking him to the hospital and contemplate incridbly negative consequences of that action (will explain later). I'm convinced I have to figure out a way to get him feeling better. Ben waks up and feels good and eats popsicles. oh, Ben somehow did not get the diarreah. By Tuesday night we are thinking that we are diong good, Tyler is coming around and playing, ate a few pretzels and a couple of bites of yogurt and Ben is happy.
Wednesday: Mom needs to go to work for 1/2 day and dad is home with kids.s ays no one will realy eat but everyone seems happy and is playing and holding down fluids. Mom gets Tyler up from nap and sees he had vomitted. So a quick assessment is done to determine what is cuasing the vomitting as he was the first to get sick and we all feel better so he should as well. this brings me back to why I wanted to get this all written down and have a timeline in place..
Your family may experience the flu and the hell it can bring but you can never fully understand what it's like to be TYler and get the flu and as his parent the amount of worry that goes into making the best decisions. Tyler has still not really eaten anything, not since Saturday. We assessed the cause of his vomitting yesterday and discovered it is all a sensory issue, i.e. he relates drinking and eating to vomitting so everything having to do with those things causes him to gag. i.e. if he sees his cup, he'll gag, if you then do not distract him and remove the cup, he'll vomit. Yesterday afternoon, I racked my brain for all of the training I've had to come up with some solutions, change the environment, get distractor (new baby einstein video) change the way he eats the food, change the way I give it to him, etc. Nothign was really working. called a friend, my guardian angel amy to see if she's experienced this with her son who also has food sensory issues but she hadn't. I had also attemptd to call Carrie. I try not to bother her but I'm so worried about Tyler's overall health. She calls me later that night and gave ma few new suggestions and helped to calm me down. Tyler's been through the stomach flue once before, when he was a year old and it was a nightmare then too. it took him 2 weeks to really start eating again. I wanted to document all of this and the timeline to help me in case this happens in the future.. so I know as a mom, that if my little guy goes numerous days without eating that I don't need to be so worried, that he'll pull out of it, he's just not a normal kid that does things in a normal way and it takes him longer to pair happiness with eating again. So both boys are at daycare today, Karen is wonderful and is going to implement all the strategies that Carrie gave us such as only giving one small piece of food at a time and nto having a plate or bowl in site, making it very very fun. we notice if he does gag an we remove the items that make him gag and quickly do a fun activity, then he doesn't vomit. overall we want him to not gag or vomit so he can remembver that eating is good adn won't make you sick and continue to do it more and more.
Hospitlization for Tyler would be a nightmare, he can't hold still so he'd have to be sedated, we are very limited on what we can put into his body as a result of his diet and of course in terms of immediate health concerns we'd do whatever we needed t do but we wouldn't want to introduce anything he hasn't had in a year because that could also make him sick plus we don't want to undo all of our hard work. If bvomitting causes such strong feeligns towards eating, imagine what a hospital, sedation, IV's and a feeding tube would do to him long term. Gosh.>I just don't want to have to do that. So everyone cross your fingers taht our littel guy will soon begin eating again so we don't have to worry anymore and thanks CARRIE... for all your help! She also has a collegue who is an expert with food issues so said to call back in a couple of days if we've not seem improvement.
Worry #2: Ben has not pooped since Saturday.. sigh.. he has the poop of steel. We got him prune juice and tried to give it tohim in apple juice but he won't drink it. We did manage to get him to drink benefiber for kid and earning jelly beans if he drank it. His belly hurts of course and he doesn't want to eat either although he hasn't gone without eating nearly as long as tyler and ben wants to eat, he's just so full that it hurts. so until we can get him eating a more balanced diet we are going to give him benefiber every day and keep working on rewards for eating whole grains and vegetables and mom will be looking for ways to sneak them in :)
Ok so that's us.. it's a grandma weekend, yeah... we can't wait for Grandma to come visit this weekend
Saturday night: I hear Tyler coughing through the monitor, sounded like he was gagging just a bit so I assumed he was getting a cold, he never cried or seemed distraught so I did not bother him.
Sunday morning: Ben and I wake up and are playing. It's now 8 a.m. and I haven't heard from Tyler, I go up to check up him and see that sometime in the night he had vomitted everywhere (poor guy slept in it :(). I wasn't aware of just how sick he was quite yet, just assumed something upset his tummy. We sat down to eat breakfast, Tyler wasn't interested in eating but did drink his milk so I had a hunch that he wasn't feeling well. Then suddenly he vomits everywhere. Ig et up to take off his clothes and clean him up and clean up the floor, once I get him out of the chair, i can hear him start to gag so I race him into the kitchen to the sink he begins spraying liquid everywhere.. we make it to the sink. I hear Ben running to the kitchen and shout, please stop, don't come in. I can just imagine him running in, slippin gon the vomit and cracking his head on the floor. he listedn, thank goodness. As i'm standing with Tyler at the sink, Ben is telling me Clifford is licking Tyler's puke on the floor. Yum! Ok so you get the point, Tyler definetly not doing well on Sunday...Sunday night rolls around and Tyler is able to drink a bit of fluids and hold it down so we are happy about that, everyone else seems fine. We decide I'd stay home with Tyler on Monday and send Ben to daycare.
Monday: Dad goes to work, drops Ben at daycare and Tyler and mom stay home. Tyler not interested in eating but holding down small bits of fluid at a time. Vomits if given too much at a time. Around 9 a.m. mom feels queezy... by 10;30 mom is in roug shape and asks Steve to come home from work. Steve gets home from work after lunch (not that there was any lunch at our house) and mom retreats to the bedroom for an afternoon of vomitting, diareeah, etc. dad cares for Tyler and picks up Ben from daycare. Nighttime rolls around.. tyler eats a few pretzels, yeah, Ben seems great and so is dad. Dad brings mom some crackers and finally a glass of water (hadn't been able to drink all day) and the boys are down for the night... 9:30 p.m. Steve comes in.. Ben puked everywehre, oh goodie.. I take Ben to the bathroom for massive clean up, Steve deals with bedding, Ben's crying wakes up Tyler (who is so wheepy from being ill and he wants mom). After cleaning up ben, mom rocks both ben and Tyler in rocking chair while dad finishes cleaning up bedding. Ben pukes in chair before we could get him the bucket.. round 3 pajamas.. actually we let him sit half dressed with bucket. I tell dad that he needs to vomit a good 6 times before we can even attempt to lay him down. I got about 3 out of him and we decided to get him in a bath to clean up. We had our bucket for those wonderful moments. Dad was able to calm Tyelr down and get him back to bed. I beg dad to wash his hands and do his best to not breath in the puke air.. how do you avoid it right. So Ben pukes another 2 times in the bath tub and twice as I got him out. We made a bed for ben beside my bed with his bucket and towels on hand. In total, Ben puked 10 times in two hours and hten for the remainder of the evening was dry heaving every 25 - 30 mins. POOOR KID! It was hard to see him go through it all. Hew as so tired he couldn't sit up and was so floppy when I tried to sit him up to get his little bits into the bucket..there wasn't much left in him but enoguh that i didnt' want him to swallow it as that's what he would choose to do had i left him. Sorry I know this is all gross but there is a reason for me writing thi sall down and you don't have to read it if it's grossing you out. Oh.. so let me got back a bit.. as soon as we got Ben in bed and resting.. I hear Steve in the bathroom, oh no, it got him too. I asked him to use the restroom downstairs so that we wouldn't wake up Tyler again so then I was playing "on/off" with the monitor all night. Cause the monitor would pick up Steve puking downstairs so I'd have to turn it off cause I didn't want it to wake Ben as he was getting so little rest anyway, but then I couldn't turn it off cause if Tyler woke up and needed somethign In eeded to know, so we played on off with the monitor. Between the on/off fun monitor game and helping Ben with his dry heaves, there wasn't much sleeping on mom's part which was tough after a day of vomitting/diarreah and no drink and food.
Tuesday: Ben somehow wakes up ready to watch a movie and snuggle at 6 a.m., WHAT!!! Ok so Ben and mom get up. we let dad rest after his night of vomitting. Tyler wakes up and his worse than he was the day before. I'm super worreid, he's very lethargic and whimpery and seems to be doing worse than Ben. Boys are competing for Mom's "love" and aren't so interested in sharing it. Both boys vomit up their juice aka breakfast which wasn't a lot but we go back to giving them a sip or two at a time. Everyone is tried and Tyler I am unable to console Tyler so mid mornign I take Tyler upstairs to rock him. Daycare runs tot he grocery store to get us popsicles, she was free since our kids weren't coming that morning. I am able to get Tyler to rest so I lay him down and go lay down myself. Steve and Ben hang out and then also both take a nap. Mom is thinking by evening everyone should be feeling better by evening. When Tyler wakes up from his nap, he is still not well, wants more and more milk but we are afraid of him vomitting and we can't get him to stop crying. We consider taking him to the hospital and contemplate incridbly negative consequences of that action (will explain later). I'm convinced I have to figure out a way to get him feeling better. Ben waks up and feels good and eats popsicles. oh, Ben somehow did not get the diarreah. By Tuesday night we are thinking that we are diong good, Tyler is coming around and playing, ate a few pretzels and a couple of bites of yogurt and Ben is happy.
Wednesday: Mom needs to go to work for 1/2 day and dad is home with kids.s ays no one will realy eat but everyone seems happy and is playing and holding down fluids. Mom gets Tyler up from nap and sees he had vomitted. So a quick assessment is done to determine what is cuasing the vomitting as he was the first to get sick and we all feel better so he should as well. this brings me back to why I wanted to get this all written down and have a timeline in place..
Your family may experience the flu and the hell it can bring but you can never fully understand what it's like to be TYler and get the flu and as his parent the amount of worry that goes into making the best decisions. Tyler has still not really eaten anything, not since Saturday. We assessed the cause of his vomitting yesterday and discovered it is all a sensory issue, i.e. he relates drinking and eating to vomitting so everything having to do with those things causes him to gag. i.e. if he sees his cup, he'll gag, if you then do not distract him and remove the cup, he'll vomit. Yesterday afternoon, I racked my brain for all of the training I've had to come up with some solutions, change the environment, get distractor (new baby einstein video) change the way he eats the food, change the way I give it to him, etc. Nothign was really working. called a friend, my guardian angel amy to see if she's experienced this with her son who also has food sensory issues but she hadn't. I had also attemptd to call Carrie. I try not to bother her but I'm so worried about Tyler's overall health. She calls me later that night and gave ma few new suggestions and helped to calm me down. Tyler's been through the stomach flue once before, when he was a year old and it was a nightmare then too. it took him 2 weeks to really start eating again. I wanted to document all of this and the timeline to help me in case this happens in the future.. so I know as a mom, that if my little guy goes numerous days without eating that I don't need to be so worried, that he'll pull out of it, he's just not a normal kid that does things in a normal way and it takes him longer to pair happiness with eating again. So both boys are at daycare today, Karen is wonderful and is going to implement all the strategies that Carrie gave us such as only giving one small piece of food at a time and nto having a plate or bowl in site, making it very very fun. we notice if he does gag an we remove the items that make him gag and quickly do a fun activity, then he doesn't vomit. overall we want him to not gag or vomit so he can remembver that eating is good adn won't make you sick and continue to do it more and more.
Hospitlization for Tyler would be a nightmare, he can't hold still so he'd have to be sedated, we are very limited on what we can put into his body as a result of his diet and of course in terms of immediate health concerns we'd do whatever we needed t do but we wouldn't want to introduce anything he hasn't had in a year because that could also make him sick plus we don't want to undo all of our hard work. If bvomitting causes such strong feeligns towards eating, imagine what a hospital, sedation, IV's and a feeding tube would do to him long term. Gosh.>I just don't want to have to do that. So everyone cross your fingers taht our littel guy will soon begin eating again so we don't have to worry anymore and thanks CARRIE... for all your help! She also has a collegue who is an expert with food issues so said to call back in a couple of days if we've not seem improvement.
Worry #2: Ben has not pooped since Saturday.. sigh.. he has the poop of steel. We got him prune juice and tried to give it tohim in apple juice but he won't drink it. We did manage to get him to drink benefiber for kid and earning jelly beans if he drank it. His belly hurts of course and he doesn't want to eat either although he hasn't gone without eating nearly as long as tyler and ben wants to eat, he's just so full that it hurts. so until we can get him eating a more balanced diet we are going to give him benefiber every day and keep working on rewards for eating whole grains and vegetables and mom will be looking for ways to sneak them in :)
Ok so that's us.. it's a grandma weekend, yeah... we can't wait for Grandma to come visit this weekend
Friday, January 9, 2009
010909 Update
Here's a pic of Tyler on his way home from school today.
Sorry I haven't updated in a week, things have been very busy getting back into the swing of things and into our normal schedule. The good news is that Tyler had an amazing week back to school. They were amazed at all the signs he picked up over break and are doing things at school to help reinforce the signs. Just yesterday he picked up two more: Rooster and squirrel. He's doing really well and we are planning ways we can get more opportunities for him to use his new signs at home. He really loves the baby signing time videos and so we plan to keep getting those videos's, it teaches him and us. Tyler's aunt got him baby signing time flashcards and we are working on those too. If grandma can make it this weekend (darn winter weather) we'll work with dad and grandma on sign language drills with the flashcards. It's one thing to know the signs but in order to use them daily you actually have to know them without having to think about them.
Ben knows that Tyler goes to school and is started to say he wants to go to school like the penguins in happy feet. He also is beginning to say "your killin' me" too funny.... he's so darn funny. We've also begun to talk to him about autism especially since he's in his "why" stage. For example, why can't I eat my toast while sitting in a chair with my blanket or why can't Tyler have this food, etc. So it's a good opportunity to start explaining it to him. In fact the other day he goes, I hope Tyler can go to school with me one day and i said me too baby.. that's my dream! ben is very big into snuggling. If he happens to wake up before I'm ready for work, he lays in our bed watching cartoons while I finish getting ready and about every one to two mins. he goes, "mommy, come snuggle with me".. how can your resist that! He loves love loves attention and we try to give him as much as we can. We started talking the other day of the fun things we can start doing with Ben now that he's a bit older and are making sure that we aren't holding him back on opportunities because of Tyler's situation. It's a constant struggle that we do the best we can to manage.
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