Sam's EI Educator named Sarah came today for his weekly visit. My mom and sister were here at the same time to celebrate my birthday which is tomorrow. I actually stayed in the dining room this time and let Sam follow Sarah out to the living room. He did very well and didn't come to find me at all! It amazes me how she can keep his attention for so long and have that much patience to keep redirecting him when he starts to lose interests with something. She said she was teaching him to sign "me" along with all done which he does already. Tonight when he was in the booster seat he kept signing ME! I was so happy! I was questioning earlier whether he's learning anything from these weekly sessions but I think he is!
He's also starting to finally blow kisses with his hand to his mouth which I know my mom and I have been waiting for. Need to go call and tell her!
Tuesday, January 26, 2010
Monday, January 25, 2010
Lots of updates
This note is all over the place with my thoughts on a lot of updates from the last several months...
My goal for 2010 is to use this blog for Samuel's overall progression for his EE condition, speech delay and him changing into a big boy every day. I can't believe he's going to be 2 years old in almost 2 months!!
Since I last wrote back in August Sam has had 2 more Endoscopies. We had him on the liquid only diet for 2 mths, another scope in October showed his esophagus had cleared up. We slowly started more foods, 1 at a time and rescoped again on 11/18. That scope showed his esophagus still free of allergens which was a good sign even though he would still vomit every few weeks. He was much better than before. Starting around 12/22 Sam started vomiting again and EVERY SINGLE DAY, sometimes several times a day and projectile vomit. I contacted our GI doctor to discuss and we decided it was time to schedule his next scope. The doctor had us stop the last 2 foods which we reintroduced- chicken and rice pasta. He still continued vomiting but also came down with a stomache bug and a cold which probably was making his reflux worse= more vomiting. But still we wonder- was he vomiting that much from the EE or from being sick? Hope we can find out but having our doubts! It's all such a guessing game! We had to cancel his scope on 1/19 because of him being sick. It is now scheduled for 2/3 and my goal for this next week is to keep him happy and healthy!
The last semi-accurate stats on Sam were about 24.6 lbs. and 32.5 inches in mid-Dec. @ 20% for weight and height- roughly. It's so hard to get accurate measurements on him as he has a meltdown at the doctors office and even when we had the Nutritionist at our house from Early Intervention.
Sam had an evaulation from Early Intervention back in September (I think- forget already). He scored low (12 or 13 mths when he was 18.5 mths) on speech, communication and cognitive interaction. In other areas such as gross motor skills, self care and a few others he scored 15-16 mths. It took a while to get the services to start. We began weekly sessions with an Educator in early December. We missed 2 weeks during the holidays. Sam was very upset when Sarah came back for the 1st visit after those 2 weeks. He cried at first and jumped on his zebra for a bit until he calmed down. He did great the following 2 weeks. We've been working with him on communicating using sign language. He can sign- more, all done and eat. Been working on doing- drink and help but nothing yet. He doesn't always do the signs either and we have to make sure we always use them every day, all the time! His only words are dada, mama (not consistently again), Nana and ok. He says other things that sound like he's repeating words but again they are not consistent.
We started Early Invervention Group with Sam 2 weeks ago. This will be every Monday from 10-11:45. It is like "school" for him with structured activities; open play time, snack time, circle time with songs, climbing structures in a different room, art time, lunch and goodbye. I really think it's ALOT at that age during that short of time but we'll see. He did pretty good on the first day. There was only 2 other kids there, plus Sarah his Educator and an Assistant. He cried as soon as we walked in the door and the room but settled down after about 10 minutes. He played some but would cry again at every transition. He would sit on the chairs at the table and eat or take part in the activity. Overall Sarah and I think he did very well. There was no group last week because of Presidents day. We did go to Group this morning and here is my intake on that:
I prepared Sam well this morning for his EI Group. I showed him Sarah's picture at home and told him we were going to "school" to play with her and other kids this morning. I said that Mommy would be with him and we would play, sing, do arts and eat. He seemed very happy even though he was shaking his head no. We got to the building and he was smiling. He was fine walking into the classroom but than did a complete 360. The room was loud with all the other kids and adults. There were 2 Occupational Therapists (OT) in the group today. One other boy (same exact age as Sam) was very upset and crying. Sam began to cry and become very upset. I repeatedly told him he was ok and took our jackets off so he knew I was staying too. Sam continued to cry hard for a while, seemed like forever to me. I sat on the side and tried to comfort him but he didn't respond to that. I let him do "his thing" which one of the OT's suggested as well. They could see that he wanted to play and explore but everytime he'd calm down he would soon start crying again. This continued for the whole 1.45 hours we were there. I think he was only calm for a few minutes here and there. When he wasn't crying he was ready to fall asleep on my lap. He did not do any activity. He would not sit on the chairs at the table to eat or play. I let him sit on my lap. During art time he would just throw the paint brush on the floor and push the paper away. During circle time he would cry, kick his feet and lay on me. He would not try anything in the gym room including the climbing structure with slide or the tunnel, both of which we have at home. He just stood there crying and screaming. I wanted to do the same! By the end of Group we were both exhausted and covered with snots, applesauce and paint! He was calm once we saw we were leaving. Looking forward to talking to his Educator Sarah tomorrow at our weekly session. Hoping for a little input from the OTs even though it was there first time seeing Sam. Next week Steve is going with us so he can see what it is like and maybe Sam will do better. I do hope that he will get better each week and benefit from Group. If the OTs and Sarah think after another 3 or 4 times that it's too much on him we'll have to stop and wait. I at least hope they will assign us an OT to come out to our house, even biweekly would be nice though I know he does better with weekly visits.
I'm convinced that Sam has some type of Neurological Disorder, maybe Sensory overstimulation. I'm not sure and am not an expert but know what goes on with Sam and how he responds to different situations. We cannot take him to a restaurant anymore. First it was because of him not eating but now he gets upset and cries a lot. He doesn't do well at parties with a lot of people that he doesn't know and if it's really loud. He doesn't like a lot of noice and to be startled with any noises. He does not like other kids to be in his space or be too close to him. He does well playing alone. If his playmates get too closed to him and he's upset he will either scream or try to hit them. He does like adults and tends to go towards them over kids. He will also explore everything else at someone's house or play area rather than the toys- trying to figure out every button, switch or lock. When he finds an object that he likes a lot he will not let go of it. I don't even try to get it out of his hands. Today he held onto the spoon that we used for his applesauce from 10:30-12:30, would not let go of it! He loves to jump up and down on your lap or on the jumping zebra. He will close his eyes and shake his head from side to side. There has to be some sensory stimulation that he needs from that. He usually gets upset if a stranger comes into the house but eventually calms down and gets friendly but still keeps his distance.
Trying to think what else...I'm very happy that I'm finally sitting down and writing all of this as it's always going around in my mind thinking- what is wrong with my child besides his GI condition?
I'm still at home with him full time and not sure when I will get back to work. We need to work through all these issues first before we can even try putting him into daycare. I never ever thought that becoming a parent would be so challenging and draining. Some days I don't know how we make it through- when he's at his worst and not doing well, it takes every last piece of energy out of us. Other days it is definitely a reward and a joy! But we do know that we will not be having a 2nd child. We do not have it in us to care for and open our heart to more children. Plus it would not be fair to Sam. He needs everything we can give him and he may always have this GI condition. Personally I really think I would have an emotional breakdown if we had Sam plus a newborn right now. No thank you! Nothing against any of my mommy friends but we are happy and content with our 1 special boy!
Besides all of this he really is a sweet and happy boy. He is silly, loves to laugh, loves watching TV- favorite is Mickey Mouse, reading books, listening to music, playing with puzzles, cars, trucks, trains, loves his puppy blanket, loves his Nana and our good friend Stefanie. I know he loves Vanessa and Nora too but we don't see them as often. He loves to play outside, go for walks and to the playground! Cannot wait until the weather gets nicer out for him to play!
Sam does a lot of imitating of things that we do now. For instance he'll take a measuring cup and pretend he's putting food in our cats bowl. He can brush his teeth, take off his socks and jacket, will take a wet one to wipe the table, can point to his nose, toes and sometimes head, mouth and fingers. He is learning so much at this age. Now if he would just communicate better with us!
He still sleeps 11-12 hours at night and will do 1 nap during the day of 2-3 hours. Sleep is one issue that we've never had, thankfully! We need a break somewhere with everything else going on!
Sam will be 2 on March 29th and I just hope we can figure out what is going on in his little mind during this next year. We are going to make 2 separate birthday parties; 1 for my family and friends and the other with Steve's family. It will just be easier on Sam and us too. Sam's family isn't as very involved and I just can't be myself with our families together, too complicated.
phewww- think that's it for today! Will be back soon!
My goal for 2010 is to use this blog for Samuel's overall progression for his EE condition, speech delay and him changing into a big boy every day. I can't believe he's going to be 2 years old in almost 2 months!!
Since I last wrote back in August Sam has had 2 more Endoscopies. We had him on the liquid only diet for 2 mths, another scope in October showed his esophagus had cleared up. We slowly started more foods, 1 at a time and rescoped again on 11/18. That scope showed his esophagus still free of allergens which was a good sign even though he would still vomit every few weeks. He was much better than before. Starting around 12/22 Sam started vomiting again and EVERY SINGLE DAY, sometimes several times a day and projectile vomit. I contacted our GI doctor to discuss and we decided it was time to schedule his next scope. The doctor had us stop the last 2 foods which we reintroduced- chicken and rice pasta. He still continued vomiting but also came down with a stomache bug and a cold which probably was making his reflux worse= more vomiting. But still we wonder- was he vomiting that much from the EE or from being sick? Hope we can find out but having our doubts! It's all such a guessing game! We had to cancel his scope on 1/19 because of him being sick. It is now scheduled for 2/3 and my goal for this next week is to keep him happy and healthy!
The last semi-accurate stats on Sam were about 24.6 lbs. and 32.5 inches in mid-Dec. @ 20% for weight and height- roughly. It's so hard to get accurate measurements on him as he has a meltdown at the doctors office and even when we had the Nutritionist at our house from Early Intervention.
Sam had an evaulation from Early Intervention back in September (I think- forget already). He scored low (12 or 13 mths when he was 18.5 mths) on speech, communication and cognitive interaction. In other areas such as gross motor skills, self care and a few others he scored 15-16 mths. It took a while to get the services to start. We began weekly sessions with an Educator in early December. We missed 2 weeks during the holidays. Sam was very upset when Sarah came back for the 1st visit after those 2 weeks. He cried at first and jumped on his zebra for a bit until he calmed down. He did great the following 2 weeks. We've been working with him on communicating using sign language. He can sign- more, all done and eat. Been working on doing- drink and help but nothing yet. He doesn't always do the signs either and we have to make sure we always use them every day, all the time! His only words are dada, mama (not consistently again), Nana and ok. He says other things that sound like he's repeating words but again they are not consistent.
We started Early Invervention Group with Sam 2 weeks ago. This will be every Monday from 10-11:45. It is like "school" for him with structured activities; open play time, snack time, circle time with songs, climbing structures in a different room, art time, lunch and goodbye. I really think it's ALOT at that age during that short of time but we'll see. He did pretty good on the first day. There was only 2 other kids there, plus Sarah his Educator and an Assistant. He cried as soon as we walked in the door and the room but settled down after about 10 minutes. He played some but would cry again at every transition. He would sit on the chairs at the table and eat or take part in the activity. Overall Sarah and I think he did very well. There was no group last week because of Presidents day. We did go to Group this morning and here is my intake on that:
I prepared Sam well this morning for his EI Group. I showed him Sarah's picture at home and told him we were going to "school" to play with her and other kids this morning. I said that Mommy would be with him and we would play, sing, do arts and eat. He seemed very happy even though he was shaking his head no. We got to the building and he was smiling. He was fine walking into the classroom but than did a complete 360. The room was loud with all the other kids and adults. There were 2 Occupational Therapists (OT) in the group today. One other boy (same exact age as Sam) was very upset and crying. Sam began to cry and become very upset. I repeatedly told him he was ok and took our jackets off so he knew I was staying too. Sam continued to cry hard for a while, seemed like forever to me. I sat on the side and tried to comfort him but he didn't respond to that. I let him do "his thing" which one of the OT's suggested as well. They could see that he wanted to play and explore but everytime he'd calm down he would soon start crying again. This continued for the whole 1.45 hours we were there. I think he was only calm for a few minutes here and there. When he wasn't crying he was ready to fall asleep on my lap. He did not do any activity. He would not sit on the chairs at the table to eat or play. I let him sit on my lap. During art time he would just throw the paint brush on the floor and push the paper away. During circle time he would cry, kick his feet and lay on me. He would not try anything in the gym room including the climbing structure with slide or the tunnel, both of which we have at home. He just stood there crying and screaming. I wanted to do the same! By the end of Group we were both exhausted and covered with snots, applesauce and paint! He was calm once we saw we were leaving. Looking forward to talking to his Educator Sarah tomorrow at our weekly session. Hoping for a little input from the OTs even though it was there first time seeing Sam. Next week Steve is going with us so he can see what it is like and maybe Sam will do better. I do hope that he will get better each week and benefit from Group. If the OTs and Sarah think after another 3 or 4 times that it's too much on him we'll have to stop and wait. I at least hope they will assign us an OT to come out to our house, even biweekly would be nice though I know he does better with weekly visits.
I'm convinced that Sam has some type of Neurological Disorder, maybe Sensory overstimulation. I'm not sure and am not an expert but know what goes on with Sam and how he responds to different situations. We cannot take him to a restaurant anymore. First it was because of him not eating but now he gets upset and cries a lot. He doesn't do well at parties with a lot of people that he doesn't know and if it's really loud. He doesn't like a lot of noice and to be startled with any noises. He does not like other kids to be in his space or be too close to him. He does well playing alone. If his playmates get too closed to him and he's upset he will either scream or try to hit them. He does like adults and tends to go towards them over kids. He will also explore everything else at someone's house or play area rather than the toys- trying to figure out every button, switch or lock. When he finds an object that he likes a lot he will not let go of it. I don't even try to get it out of his hands. Today he held onto the spoon that we used for his applesauce from 10:30-12:30, would not let go of it! He loves to jump up and down on your lap or on the jumping zebra. He will close his eyes and shake his head from side to side. There has to be some sensory stimulation that he needs from that. He usually gets upset if a stranger comes into the house but eventually calms down and gets friendly but still keeps his distance.
Trying to think what else...I'm very happy that I'm finally sitting down and writing all of this as it's always going around in my mind thinking- what is wrong with my child besides his GI condition?
I'm still at home with him full time and not sure when I will get back to work. We need to work through all these issues first before we can even try putting him into daycare. I never ever thought that becoming a parent would be so challenging and draining. Some days I don't know how we make it through- when he's at his worst and not doing well, it takes every last piece of energy out of us. Other days it is definitely a reward and a joy! But we do know that we will not be having a 2nd child. We do not have it in us to care for and open our heart to more children. Plus it would not be fair to Sam. He needs everything we can give him and he may always have this GI condition. Personally I really think I would have an emotional breakdown if we had Sam plus a newborn right now. No thank you! Nothing against any of my mommy friends but we are happy and content with our 1 special boy!
Besides all of this he really is a sweet and happy boy. He is silly, loves to laugh, loves watching TV- favorite is Mickey Mouse, reading books, listening to music, playing with puzzles, cars, trucks, trains, loves his puppy blanket, loves his Nana and our good friend Stefanie. I know he loves Vanessa and Nora too but we don't see them as often. He loves to play outside, go for walks and to the playground! Cannot wait until the weather gets nicer out for him to play!
Sam does a lot of imitating of things that we do now. For instance he'll take a measuring cup and pretend he's putting food in our cats bowl. He can brush his teeth, take off his socks and jacket, will take a wet one to wipe the table, can point to his nose, toes and sometimes head, mouth and fingers. He is learning so much at this age. Now if he would just communicate better with us!
He still sleeps 11-12 hours at night and will do 1 nap during the day of 2-3 hours. Sleep is one issue that we've never had, thankfully! We need a break somewhere with everything else going on!
Sam will be 2 on March 29th and I just hope we can figure out what is going on in his little mind during this next year. We are going to make 2 separate birthday parties; 1 for my family and friends and the other with Steve's family. It will just be easier on Sam and us too. Sam's family isn't as very involved and I just can't be myself with our families together, too complicated.
phewww- think that's it for today! Will be back soon!
Monday, August 31, 2009
Reflux and eosinophilic esophagitis
A little update on Sam's GI condition. He went from having reflux since 1 mth old to now allergies on his esophagus "eosinophilic esophagitis". Here's a link as it's hard to explain. http://www.childrenshospital.org/clinicalservices/Site2664/mainpageS2664P9.html
Basically he has a delayed reaction to food, his esophagus is enlarged and that's what causes him to be in pain, vomit, etc. He's been on a liquid diet (only can have Neocate Jr. formula, juice/water, lolipops and freeze pops). We have to go back to do a skin patch test soon in hopes that something will show up positive and do another upper scope of his esophagus in October when the inflammation should be down. Slowly we will introduce foods again but only 1 at a time and every 3 weeks he'll have another scope done to check for allergens (eosinophils).
He's now discovering food again which is making things much harder on me when we go to any gathering with kids and there's food, he wants to eat and he can't! I have to run around grabbing it away from him. This just started on Friday.
I was hoping to start him in daycare 2 days a week in a few weeks but it's not working out. He cries and vomits and is just not ready. Timing is not good. I was really hoping daycare would work so I would have some time to myself and he could be with other kids but I'm trying to accept that he still needs me every day to comfort him when he's not feeling well. phewww...that's what's going on with him.
Me- I have my good and bad days. Been very emotional today and crying off and on. But I'm reaching out to different resources to get some activities planned for the fall. It makes me feel good that people who I barely know want to help out in any way they can if you just speak up and ask!
Basically he has a delayed reaction to food, his esophagus is enlarged and that's what causes him to be in pain, vomit, etc. He's been on a liquid diet (only can have Neocate Jr. formula, juice/water, lolipops and freeze pops). We have to go back to do a skin patch test soon in hopes that something will show up positive and do another upper scope of his esophagus in October when the inflammation should be down. Slowly we will introduce foods again but only 1 at a time and every 3 weeks he'll have another scope done to check for allergens (eosinophils).
He's now discovering food again which is making things much harder on me when we go to any gathering with kids and there's food, he wants to eat and he can't! I have to run around grabbing it away from him. This just started on Friday.
I was hoping to start him in daycare 2 days a week in a few weeks but it's not working out. He cries and vomits and is just not ready. Timing is not good. I was really hoping daycare would work so I would have some time to myself and he could be with other kids but I'm trying to accept that he still needs me every day to comfort him when he's not feeling well. phewww...that's what's going on with him.
Me- I have my good and bad days. Been very emotional today and crying off and on. But I'm reaching out to different resources to get some activities planned for the fall. It makes me feel good that people who I barely know want to help out in any way they can if you just speak up and ask!
Wednesday, July 9, 2008
A Wonderful Day!!!
Well I had a GREAT time at my mom's mtg. today. Next week is the last meeting for it but we're going to try to continue it on at least biweekly and take turns at each others houses or meet somewhere. There are only 5 of us so it's really nice! We stayed 1 hour past the time that it ended today and we could have kept talking more and more!
After my group I ran into one of the OBs from my practice and talked a few mins. Had her check for me to see if the high risk docs were in that I used to always see at the hosp. but they were off. Then she checked to see if any of the nurses were in Triage that I used to see all the time for my NSTs and the 3 times I went to the hosp. for my pinched nerve. One of them was there and I saw her and the other girl will be there next Wed. so I'll stop by then. I can't wait to see her as she helped me out almost every time I was there! It's so good to visit people that had helped you out in need during your PG!
Two times today Sam started crying when someone else was holding him but as soon as I took him he was fine!
And lastly Sam is definitely going through a growth spurt! He's downing a couple 5 oz. bottles now a day! And taking more naps but still short ones. Tonight he fell asleep on Steve around 7ish, woke up at 8 and we gave him a bottle and he was asleep at 8:20! We brought him upstairs, I changed his diaper, swaddled him and he took a little bit more of the bottle and was out cold. Put him down in the crib at 8:30 and he was OUT! yippy! 1st night for that so I hope he STTN and we can continue this! I am surprised as I got him off schedule when I was out earlier!
I wish every day was as good as today was!
Tomorrow I take Sam to the Pedi again to check on his weight and make sure he's on the right dose of Prilosec. He's been doing good the last few days except still spitting/vomiting his med at times.
After my group I ran into one of the OBs from my practice and talked a few mins. Had her check for me to see if the high risk docs were in that I used to always see at the hosp. but they were off. Then she checked to see if any of the nurses were in Triage that I used to see all the time for my NSTs and the 3 times I went to the hosp. for my pinched nerve. One of them was there and I saw her and the other girl will be there next Wed. so I'll stop by then. I can't wait to see her as she helped me out almost every time I was there! It's so good to visit people that had helped you out in need during your PG!
Two times today Sam started crying when someone else was holding him but as soon as I took him he was fine!
And lastly Sam is definitely going through a growth spurt! He's downing a couple 5 oz. bottles now a day! And taking more naps but still short ones. Tonight he fell asleep on Steve around 7ish, woke up at 8 and we gave him a bottle and he was asleep at 8:20! We brought him upstairs, I changed his diaper, swaddled him and he took a little bit more of the bottle and was out cold. Put him down in the crib at 8:30 and he was OUT! yippy! 1st night for that so I hope he STTN and we can continue this! I am surprised as I got him off schedule when I was out earlier!
I wish every day was as good as today was!
Tomorrow I take Sam to the Pedi again to check on his weight and make sure he's on the right dose of Prilosec. He's been doing good the last few days except still spitting/vomiting his med at times.
Thursday, July 3, 2008
3 months and changing fast!
Wow- I've really noticed a difference in Sam today!!!
To begin with, yesterday was a very busy day as we had my New Mommy group at the hospital and then took the train into Boston to visit Steve at work. Today was Steve's last day at his USCG job so his co-workers wanted to meet Sam. We had a very good but LONG day yesterday and I think Sam and I were both recovering from it today. Yesterday he was so good, hardly fussed at all while we were out for 10+ hours. Today he was GRUMPY and wanted to be held all the time. He would not nap and only slept 7.5 hours through the night last night. He puked on me when I finally got him sleeping! that Alimentum smells AWFUL!!! Had to bathe him and I took a shower afterwards! Had to swaddle him in order for him to calm down and nap. Tonight I was trying to get him to sleep with his arms out of the miracle blanket but that didn't happen. He was crying for a bit so I finally went back in and rewrapped him with arms in the blanket! Now he's sound asleep (I think).
Besides the crying today from being overtired he finished three 4.5 oz. bottles and was very happy and content just sitting in his infant seat in the kitchen while I cleaned up the sink, etc. He is laughing out loud more, cooing and trying to talk.
I have to say that the last few days I've relaxed more too and am not so much on edge! I don't feel as "afraid" of if he's going to start crying again or what's going to happen next. Finally at almost 14 weeks I feel a bit more "normal"! haha!
Ok I'm tired and will write more soon. I should have started this blog a while ago.
I LOVE LOVE LOVE and am SO IN LOVE with my Baby Sam!!!
To begin with, yesterday was a very busy day as we had my New Mommy group at the hospital and then took the train into Boston to visit Steve at work. Today was Steve's last day at his USCG job so his co-workers wanted to meet Sam. We had a very good but LONG day yesterday and I think Sam and I were both recovering from it today. Yesterday he was so good, hardly fussed at all while we were out for 10+ hours. Today he was GRUMPY and wanted to be held all the time. He would not nap and only slept 7.5 hours through the night last night. He puked on me when I finally got him sleeping! that Alimentum smells AWFUL!!! Had to bathe him and I took a shower afterwards! Had to swaddle him in order for him to calm down and nap. Tonight I was trying to get him to sleep with his arms out of the miracle blanket but that didn't happen. He was crying for a bit so I finally went back in and rewrapped him with arms in the blanket! Now he's sound asleep (I think).
Besides the crying today from being overtired he finished three 4.5 oz. bottles and was very happy and content just sitting in his infant seat in the kitchen while I cleaned up the sink, etc. He is laughing out loud more, cooing and trying to talk.
I have to say that the last few days I've relaxed more too and am not so much on edge! I don't feel as "afraid" of if he's going to start crying again or what's going to happen next. Finally at almost 14 weeks I feel a bit more "normal"! haha!
Ok I'm tired and will write more soon. I should have started this blog a while ago.
I LOVE LOVE LOVE and am SO IN LOVE with my Baby Sam!!!
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