• Wednesday, February 3, 2010 10:42 PM, EST

  4th scope- Today couldn't have gone any smoother!   We got Sam up at 5:20a and were out the door within 10 mins or so.   It was the BEST experience by far for the 4th scope!   I spoke up to the RN before going into to pre-op.  Explained to her about Sam's sensory issues and how the lights, people in his face plus him being there is all too much and results in a horrible experience for him and us.  She understood and with no hesitation put us in a private room.  The room had windows and we shut the lights off.   There was a screen tv on the wall and we were able to watch some of Handy Manny and Mickey Mouse.  Sam was so calm and happy!  I even changed him into his little jonny while he was watching tv.  We got him weighed and he didn't fuss much but Steve held him and then Steve got weighed by himself to subtract the difference.  It was an estimate because of his clothes on but he probably weighs about 25.6 lbs.  Steve spoke with the doctors outside the room to go over a few things and answer questions.   Sam was fine going with daddy and walking away from me to go to the OR.  Steve said he was VERY upset as soon as they walked in there and until he was put under anesthesia.   He slept 30 mins after the procedure which he usually wakes up sooner than that.  He was very calm after waking up, sat on my lap and had almost 2 freeze pops!   Got home just after 10 but he didn't fall asleep until after 11.  I think he napped until close to 3 and so did we!  That was nice!   We won't know the biopsy results until Friday at least.    The doctor was putting in a request to have them read ASAP.  We will call our GI doc on Friday to see if she has anything for us.  I need to ask her a few questions too besides the tests results.
  
  The last 2 nights Sam woke up at 9 a.m. and vomited!   Monday he only ate banana, applesauce and rice chex.  Yesterday we only gave him banana and cantaloupe.  Something is clearly bothering his poor belly and esophagus!  I just hope that it shows up on the esophagus.  Today we only gave him formula and he had a little applesauce.  I left a message to get him an appt. with the EE Nutritionist at Children's.  We haven't seen her yet.  Last time we met with the regular nutritionist and I still wonder if he should be having rice chex which she wrote down as a safe food but I've heard otherwise from one of the Mom's with the EE support group at Childrens.
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• Tuesday, February 2, 2010 10:46 PM, EST

  Sam's EI visit went well today.  He only napped 1 hour before and we had to wake him so he was getting a little grumpy with her.  But I was able to stay in the other room again and he was ok with that.   I talked with her about a few things to work on with Sam; starting a task (building blocks, puzzles, etc), finishing it and cleaning up.  If a whole puzzle is too much to keep his attention we will start with 3 pieces or only a few of the building blocks or shapes for the sorter until he can complete more without getting frustrated and moving onto the next thing.  
  
  Tonight I inflated the exercise ball that I bought earlier.  Was trying to get him to sit on it but he wouldn't.   I laid him on it and he seemed to like it but not for long.  He enjoyed hitting the ball, pushing it and picking it up to throw.  I think even those are all good pressure movements to work on.
  
  Also had him use the vibrating toothbrush to get the sensory motion but I did put his toothpaste on it too.  He didn't like it at first but warmed up to it and brushed his teeth a little.   He constantly has his fingers in his mouth but I don't think it's due to teething.  So we're trying to give him other things to chew on or get vibrating sensations to stimulate the oral sensories.  (I think that's how to explain it).
  
  Put him to bed at 6:45 tonight and have to get him up at 5:15, leave the house at 5:30 and be at Childrens Hospital in Waltham for 6:30 with his Endoscopy at 7:30.   I'm hoping that doing some of these sensory activities today will possibly calm him tomorrow but not counting on it.  
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• Monday, February 1, 2010 10:48 PM, EST

  Well I think it's pretty official that Sam does have a form of Sensory Processing Disorder.  We went to Group from Early Intervention this morning.  Steve went with us and I thought maybe he would do better with both of us there but no such luck.  Sam was just as upset and even vomited a few times.   He quieted down at times but only when he came to me to be held and was resting his head on me.   He had no interest in anything the other kids were doing.  There were only 3 kids there today so it was pretty quiet.  While we were there this morning we spoke with one of the Occupational Therapist.  She said that Sam is not ready for this group and can see how stressful it is on him and us.  I asked her for an OT home visit and she actually had a cancellation for this afternoon.  I grabbed it!   She came while Sam was napping which was fine since we weren't going to work directly with him.  I asked her all the questions I had and we went over everything.  She gave me papers on the sensory integration diet.   I still need to read everything to understand a little more about the issues that Sam is having.   Obviously I know what bothers Sam but I'm trying to understand how the brain works with the whole nervous system and each component of auditory, smell, touch, movement, etc.   We have lots to work on with Sam in order for him to get to a place where he starts processing the outside world around him.   He gets overstimulated and shuts down. 
  
  The OT suggested we do at least 1 outdoor activity with him a week where he can have a positive experience and not be upset.   She thinks swimming would be a good option and we are going to give that a try.   She said the pressure of the water on can help his sensories.  Still trying to understand how it will work and if he'll like it but it's worth a try.  We belong to the YMCA and never go so what better time to get back but now?!
  
  I'm going to work on making a daily "structure schedule" for us to follow with Sam for activities, meals, naptime, etc.  I hope this will help all of us.  Tonight I sat Sam on my lap and we played with playdough on the table.   Tried to get him to play with it at group this morning and he wouldn't.  Tonight he wouldn't touch it at first.   He kept poking it with the little tools but finally touched it, smelled and licked it, lol!   It was a good time!  
   

• Monday, January 25, 2010 10:52 PM, EST

  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'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 I think he did 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 the Educator'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.
  
  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. 
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• Monday, August 31, 2009 10:15 PM, EDT

  Following his positive scope from 8/5/09- 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.
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• Wednesday, July 9, 2008 10:23 PM, EDT

  Sam is definitely going through a growth spurt! He's downing a couple 5 oz. bottles now a day!
  
  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 10:27 PM, EDT

  So glad I started writing some of this in a blog and can now copy and paste it into here since alot of time has passed and I just started this website in 2/10.
  
  just over 3 mths-
  
  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. 
  
  Besides the crying today 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.