Wow it's almost 4 months since I've updated!  Mama has been busy! 

EOS and food- Sam's scope in August came back clear for any eosinophils!  We got the go ahead to restart new foods again. He ate cucumber for a few days and it clearly gave him too much acid.  He woke up a few nights vomiting and we stopped that.  Bummer since he really loved them!!!  Started apples again and he's been doing well with those.  He's also now eating freeze dried strawberries, red grapes, cantaloupe, and cape cod potato chips along with banana and carrots which he was already eating.  He still only eats 2 x a day and small amounts.  We tried sweet potato fries with him a few days and he loved them but then he got a cold.  Need to try those again along with regular potatoes for fries, mashed or roasted.  Going to try turkey with him for this thanksgiving. He did love that so I'm hoping he still will and he doesn't have any reations!   Working on cutting back his formula- he's still on EO28 splash and usually drinks 28-32 ozs. a day.  We've had problems getting the splash approved again through insurance due to Sam's biopsies being clear, him gaining weight steadily (60th% now) and he's over 2.5 years old.  Harvard Pilgrim denied it several times.  We are now with Blue Cross Blue Shield of MA and I'm waiting on the approval from them.  Thankfully we had some great friends, the GI doc and Nutricia themselves help us with formula and we've gotten a good supply at no cost.  Each case cost $115 with no insurance and that's only 27 individual boxes which would last just over 6 days!  Craziness!  I need to check in with BCBS to see what the hold up is!!!

We finally got MassHealth Commonhealth supplemental insurance approved for Sam!  That is a huge relief!!  I originally applied for him back in April and kept getting denial letters.  Finally got a contact (from another EOS mom) and got some much needed help with the disability portion of MH.  We even got them to backdate the start of coverage day to April when it was finally approved in October!  Waiting on some reimbursements now for co-pays we've made to docs and the pharmacy!  Finally something good for us and we are very thankful!

ABA update- We changed ABA providers in September and are very happy with the 2 therapists.  He receives 10 hours a week from them.  They are a bit different than the last provider in that they don't do as much table work.  They are able to run trials with whatever he is doing and even if we go out into the community to get him used to going to different playspaces.  Next on my list is to visit a restaurant with him and the therapist. 

Daycare- He has been going to daycare 3 mornings a week since September and does well for the most part. He's come a long way from when he first started.  He tolerates the other kids being around him, sits for circle time, plays appropriately and even initiates some peer interaction. With the help of the ABA therapists we had the Providers start using PECS with Sam while he's there.  He really thrives on a routine and knowing what's going to happen next.  I think that's helped him and them out tremendously with less tantrums or frustrations.  Some mornings I have to literally "drag" him out of the house to go but then I come back to pick him up and he doesn't want to leave.  My goal for January is to try and get him to nap there but we shall see.

Speech- every day he has been saying new words, even little ones like "eye" and "toe" yesterday!!   He has been repeating words upon request a lot recently or at least attempts to.   His speech is still very delayed though and he hardly ever puts 2 words together besides "all done" or "go outside" for instance which he usually doesn't say either.  He had a re-eval done by early intevention at 30 mths and he tested at 16-18 mths.  It is hard at times hearing how behind he is to his peers and that we can't have even a small conversation with him.  But we are confident that he will catch up with the continued services he gets at home and hopefully at the integrated preschool he will start at his 3rd birthday on 3/29/11.   The 1st steps have begun for his evaluation which should take place between January and February.

Sam does continue to be a very bright, energetic and affectionate boy!!!   He is the biggest mush ever and loves hugs and kisses!   He loves being tickled, hiding under the blankets on the couch and playing with us, dancing, using his imagination to play with his stuffed animals (pretends his diapering them or cleaning them up), going shopping with his cart, bag and keys, loves coloring and playdough, puzzles, cars and trains and of course let's not forget he still LOVES watching Mickey Mouse Clubhouse and now Timmy Time!!!   All he ever says is "Ickey or T" for Timmy!  

As Thanksgiving approaches we are very thankful to have such a special child in our lives who makes us see what the important things are and makes us better people every day!  Love him more than anything!!!    

I can't believe tomorrow, 8/5 marks one year ago that Sam went under for his 1st Endoscopy which gave him the dx of EE!

On 8/16 he will have a baseline scope and biopsies to make sure all is clear before starting new trials. 1 year later and he still can only eat 3-4 foods. We still have such a LONG road ahead of us!   We haven't trialed any foods since March when we took a break to clear him up and switched both GI and Allergy docs.   Not sure what foods we are going to try first but I do know we are going to do it very slowly this time, no rushing and making sure he's done having reactions before starting another trial.   We have learned so much these past few months.

I would like to try cucumber and rice pasta with him again since he loved those so much.  We stopped them because he was still getting sick OFTEN but was scoping clean.  It could have been the reflux pain that was still making him sick.  That is well under control now with him on Nexium 2x a day, and zyrtec.   I think he only had 6-8 "painful episodes" in July compared to 12 the previous months.

ABA update- Sam continues to do very well with his ABA therapist.  It's been almost 4 mths now.  He masters each new "trial" she gives him either that day or within a few days.  We were going to add on 2 sessions in the afternoon but I think it would be too much for him and don't think he needs additional "table work".  I do think he needs a weekly Occupational therapy session and will talk with our coordinator from EI next week (she's on vaca now).   He still gets upset when going to places that he does not know and is only happy when he's in a swing.  I think weekly OT sessions will help this and give us further tools to use with him at home every day.  I have been giving him a quick sensory input before leaving the house for daycare now.  

Daycare- It's been 1 mth and Sam is doing MUCH better at daycare.  He went from having awful dropoffs with crying and vomiting 3 x to this week NO crying when I dopped him off and him getting excited upon arrival to the providers house.  He has gotten upset when his ABA therapist leaves at the end of her session but settles down after 15-20 mins.  I'm so proud of him and hope he continues to thrive and become more comfortable with being there.

Speech- he continues to say the same few words consistently- all done, no, dada, outside, T for tv, Ickey for Mickey, car, key, door.   He signs "more" and "want".  He calls me "Sacey" but is starting to say Mamamama so hopefully that will change soon.  Speech sessions have taken off slowly between sick cancellations we had and doc appts.  This week he has speech 2x and the same next week.  Hoping that will help him take off with what is on the tip of his tongue!!

I think that's it for now.  Thank you for keeping up with us.  This last year has been ROUGH, getting better but still challenging every day.  Having an EE and PDD child is a tough combo!   I'm so glad to have some great supportive Moms out there who know exactly what we are going through!  Love ya all!  

Long week of going into Boston this M, W and Th. for allergy skin patch test.  Monday he got 24 skin patch put on his back.  These are little tiny flat disc with food in them to test for a delayed allergic reaction.  They are taped onto the back and are taken off 48 hours later.  Today we met with Sam's Allergy doc who looked at his back again.   The skin patch results show "slight" reactions to chicken, oat and peanut! Those will be the last on the list of foods to trial when we start new foods again!  The chicken makes ALOT of sense as everytime we gave him chicken with rice pasta he would get sick and we kept thinking it was the rice pasta!

Will be setting up a date for a baseline scope in about 6 weeks- mid August.  If the scope and biopsies are clean we will began to introduce new foods again.  Will meet with docs and nutritionist to discuss after the scope.

I found a GREAT home daycare center for Sam where he will be starting 2 mornings a week soon with the plan of increasing to 2 full days.  One of my friend's daughters goes to the center as well so that may be helpful to Sam.  We have been doing weekly visits 2x to get him used to going there and hope to leave him for an hour in the next week to see how he does before leaving him for a morning!

Sam has been doing EXCELLENT with his ABA therapy sessions.  He's able to sit at the table and "work" for most of the session with short breaks in between and I'm able to stay in the other room or even upstairs to get some other things done.  yay!  His vocabulary is blossoming with the consistency of car, keys, outside (mostly), all done, oh no, uh oh, dada, kiki for mickey and probably a few others I'm forgetting. He says these words in the right context and associates objects correctly.  Ex:  while visiting the new daycare center- after playing there for a while he says "all done", walks over to the gate and says "car"!  yay!  I knew my child was smart!  lol!!  We are very proud of his hard work these last few mths and are excited to see him continue to grow and learn more!!! 

Thank you for checking in!

Had follow up visit at MGH today.

Plan: 1) continue on Nexium and watch for more improvement over next few weeks, 2) start zyrtec 5mg. a day (crush pill into powder and mix into drink), 3) scheduling patch test for food and environmental allergies (he had one 1 year ago for food only), 4) scope in August. If scope is clear and vomiting stops will start reintroducing foods again by Sept.  Again I have to say I'm very pleased with making the switch from Children's to MGH!!! We talked with other parents there today doing the same thing! These doctors really listen to what we say and do not want to rush anything! The GI doctor put his hands on Sam's face before leaving and said "love you"!   oh and Nutritioniist wants us to stop smarties and dum-dums. She's worried about his teeth from the acid, vomiting and sugar and hardly lets us brush his teeth! I've been worrying about this too and am going to make an appt. with a dentist soon who see special needs kids. We're also making an appt. with the Child Psycologist to talk without Sam and then with him there at a 2nd appt.  Feeling a bit better tonight about everything!

• Wednesday, June 9, 2010 1:17 PM, EDT

  This morning Sam had a follow-up appt. with the Neurologist who gave him the PDD dx.  After an initial upset about getting weighed and puking on mommy he did very well and was interacting with the doc!  Doc said he is making good progress, has great eye contact and in a few years may not be considered "on the spectrum" if he continues to get better with social interaction and various situations, etc.  I told him everything he's been doing in the last few weeks alone; imagination play with cars and trains, shopping with his food cart and bag, playing with his friends and our next door neighbors.  Obviously there are days that are still very difficult but he's definitely taking big steps ahead!!  Oh weight estimation after subtracting his weight from mine (I had to hold him to get him weighed) and minus his clothes plus sneakers (yeah real accurate weight) is around 28 lbs. which is about a 2 lb. gain in the last 3 mths.  Very good despite all the vomiting but he has been drinking 32-36 ozs. of EO28 splash a day and a few times has had 40 ozs.
  
  He has a follow-up appt. at MGH's Food Allergy clinic on Monday to see the GI, Allergist and Nutritionist again.  He's still been vomiting a few times a week.  I figured it out yesterday from the food log journal I update and he vomited 13 times in March, 12 in April, 8 in May and 4 in June already.  So we'll see what the good docs have to say.  I think he needs a 2nd medication or maybe increase the Nexium.  
  
  After his appt. this morning we stopped at a playground where he went on the swing 3 x, a jumpy car and was climbing on one of the play structures and going up and down the slide.  yay!
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• Sunday, May 30, 2010 7:06 PM, EDT

  Sam had his upper GI barium swallow done on Friday at MGH's Pediatric Radiology.  It was the WORST procedure by far to watch him go through and we are glad that is done with!!   Love our new GI doc! I can't say how happy we are that we changed docs a few mths ago! Paged the GI doc later on Friday to talk about the barium results.  He called back that night! He said refluxing was seen on the xrays due to the EE. We have an appt. in 2 weeks with him and the Allergist and are going to talk about adding a 2nd PPI (Proton Pump Inhibitor) since he is still vomiting and in pain several times a week.
  
  He is currently drinking about 40 ozs. of EO28 splash.  Stopped eating banana and will eat cucumber every few days.  But he vomited shortly after eating that the last few times.  Right now we're happy with him drinking more formula and getting sick less.
  
  Went to a cousins birthday party today and Sam had a very difficult time with all the people and the noise in the house.  I don't blame him at all but it feels like sometimes we can't even take him to gatherings between worrying about him getting his hands on food and him getting overwhelemed and upset.  It's much easier to stay home and not get everyone worked up.  I did enjoy talking to 2 of my cousins.  Learned that another cousins son is autistic.  Some of the things she was telling me about this 6 year old do remind me of Sam at times.   My other cousins son is allergic to dairy, shellfish and nuts.   He is 3 mths older than Sam and really wanted to play with Sam.  I felt bad for the boy that Sam wasn't interacting with him but hopefully that will change one day.
  
  I've been trying to remember to work with Sam on sensory input at home by doing squishes, bouncing on the ball, airplane rides, jumping and swinging.  I notice how much calmer he is when he gets this kind of input a few times every day.   I'm going to talk to our ABA therapist about what else we can do to make things easier on Sam when going to public venues, parties, outings, etc.  I really don't want to be stuck inside the whole summer and hope we can get a chance to do a few fun things as a family. 
  
  We have weekly speech therapy sessions starting on June 16th through Early Intervention.  I'm sure that will help him out tremendously.  His consistent words to date are still; dada, ok, all done and sometimes outside.  that's it.  He says a few other things here and there but not often.   I'm also waiting on getting a 4th day of ABA therapy started, hopefully in a few weeks.
  
  Thanks for checking in and thinking of Sam and us!  
  xo
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• Thursday, May 20, 2010 12:20 AM, EDT

  FINALLY...Sam is starting to express to us visually when he is in pain!!! After vomiting this morning he was holding his belly, whining and crouching down. His therapist was here and is helping TREMONDOUSLY to get him to be more expressive! I asked if he wanted medicine and he pointed to the kitchen where his meds an...d droppers are kept! OMG- I almost cried! Gave him mylanta for break-thru reflux symptoms!

• Friday, May 14, 2010 10:11 PM, EDT

  Sam happily drank both cups of formula again today with the Nexium powder mixture in them.  I just hope it works and he gets enough of the med since he left a tiny amount in the cup both times.  I tried giving it to him with a dropper tonight but he wouldn't take it and I didn't have the strength to fight with him on it which would probably have turned into a battle ending in tears and vomit!   I'll settle with him getting MOST of his med and work on getting him to take all of it over time.
  
  I'm very touched by several people who attempted to Eat Like Sam for a day today!!!   I attempted this myself and even though I witness first hand every day what he eats or doesn't eat it was a huge struggle for me to not be able to grab whatever I wanted to out of the fridge, add milk to my coffee or eat any of my bad foods that I tend to stop for these days!  In a way it reminded me of trying to follow Weight Watchers in that I'm always thinking of food so it was a struggle for me in that sense too!  I broke down at 5 p.m. and ran to MaryLou's to get a "real" coffee!!  Sam chomped away on his lolipop as I sucked that thing down!!!   Please keep in mind that he drinks at least 32 ozs. (30c an oz=960 calories) of special Neocate splash formula a day and is not starving or craving foods like you may have experienced today.
  
  Sam's friends at playgroup this morning ate bananas and dum-dums just like him! I LOVE them! His buddy Nicholas had 3 bananas (1 before we got there) and Franco had THREE pops! lol!!
  
  Again I thank you and do not forget the little things that people do to show their love and support for us!
  
  xo
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• Thursday, May 13, 2010 9:02 PM, EDT

  It's been a few weeks since I've written..pretty much a lot of the same thing during that time.  Only been eating banana and some cucumber and some days no food and just formula with vomiting a lot and not taking a medication! 
  
  But yesterday and today he seems to be feeling better, VERY happy, no pain or vomiting!  Maybe his esophagus has cleared up from all the foods that weren't agreeing with him and his ear infection/cold is gone.  Still questioning seasonal allergies.  He seems ok this past week with that.
  
  Got his GI doc to prescribe Nexium powder packets.  It's 10 mg. 2 x a day and you mix it with 1 tbsp of water then add it into some juice or formula.  I put it in his last cup of formula tonight and he didn't seem to notice but he also didn't finish the full 8 ozs. so I'm not sure.  Will try it in juice tomorrow or less formula with it.
  
  He has been eating a whole banana plus cukes the last few days.  yay!
  
  Have an upper GI barium swallow scheduled for 5/28.
  
  Tomorrow is Eat Like Us for a day challenge to kick off the EOS Awareness week!  I would like to thank everyone who is willing to try this for Sam.  We appreciate all of your thoughts, concerns and prayers!! 
  
  Sam has been doing good with ABA therapy.  It's a slow work in progress but we had a big breakthrough yesterday and hope to continue moving right along.  He's been saying more some words; go, outside, door, key, juice, kitty and maybe a few others!  yay Sam!
  
  Much love from us!
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• Friday, April 23, 2010 10:30 PM, EDT

  Why do I even bother offering him food when he seems content drinking Neocate splash? 
  Our Nutritionist said to offer him some of the foods that he has been turning down at least every other day. I get so tired and discouraged of trying though when most of the time he starts gagging and pushes his chair away from the table. :-( Today he ate a bunch of apple slices but started gagging and vomited ALOT!   I feel like not asking or offering him anything and seeing if he starts looking or pointing out to food.  What to do?  What to do? 

• Thursday, April 22, 2010 10:27 PM, EDT

  Busy week!  Sick visit to the pedi on Monday.  He has an ear infection and was put on antibiotic.  Doing MUCH better today!!!  He had fun at a playdate yesterday with some friends I worked with at BCBSMA.  Was upset at first but then had a great time!  Had to take him to a doctor appt. for me and he did awesome there!!!
  
  Started ABA services last Tuesday.  That's been a huge adjustment and we are taking it slow.  Working on building a trusting relationship with Sam and the Therapist before she really puts him to work!  :-)  3 days a week so far.  He did great today, only cried a few mins.  He also has said a few words this week; key, juice, door and "tato" for Mr. potatoe, his BFF that he holds onto.  The therapist was using Mr. Potatoe as his reward toy today!
  
  4th day in a row that he would not take the Omeprazole in the applesauce. I thought it was because of him being sick but I think he's caught onto what is in it and starts spitting it out when I try to shove it in his mouth!  Need to call GI doc to see what else we can try.
  
  He vomited M-W but he was very upset each time.  No vomiting today, yay!!!
  
  I'm enjoyijng some quality alone time with my favorite little boy while Steve has gone back to work this week.  The week has flown by!!!
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• Monday, April 12, 2010 11:44 PM, EDT

  Appt. today at MGH Food Allergy Clinic.  Sam started crying AS SOON as we walked into the office!  Got him out of the stroller and he puked twice on the floor!  Got put in a room and he was still very upset in there and vomited 2 more times!  Allergist came in who we met before and LOVE!  He's awesome!  He suggested one of us take Sam for a walk and the other stay in to talk.  So I had Steve take him since I'm more thorough on everything!  :-)   I met with the Allergist, GI and Nutritionist without them.  Went over EVERYTHING!!!   I think their eyes could have popped out if they didn't restrain themselves when I talked about how fast we did all the food trials!   The Allergist said any food that they have problems with can stay in their body from 4-6 weeks!  This explains everything now!  We never waited that long before trying something new.  Our stupid doc never mentioned that once!   The Allergist today was also surprised when we trialed wheat recently since that is one of the major trigger foods.   My eyes are now open to our view on our old doc and I can't believe she never suggested any further GI testing for motility of the digestive system with all his gagging, choking and vomiting. It's as if she was just about trying foods and scoping every 6-8 weeks.  And since Sam's 3 biopsies have been clear she would basically say ok let's move onto more food and not figure out why he's still having all these symptoms.  It HAS to be the reflux and couldn't be anything else, could it? yes I'm being wise here!   So the docs suggested doing an Upper GI barium and Food Challenge with tracers to test for motility in his digestive system.  there could be reasons why he's not swallowing and digesting food correctly and it comes back up so often.
  
  For the next 3 weeks we are not to give him any new foods.  He may still have traces of other foods in his system that are making him sick.  We will keep him on banana, applesauce and offer him cuke and cantaloupe if he'll eat it.  If the vomiting stops then we can restart either chicken or turkey since he did well with those and the Nutritionist was impressed how much he loved them.  If he continues to vomit we will increase the Omeprazole (prilosec) to 20 mg. 2x a day.   They also said that once we can hopefully get him to stop vomitting he should be able to eat all of the foods that we have restarted since the last 3 biopsies were clear.  I'm not so certain on this yet.  Will have to see.  We have a follow-up appt. in 2 mths with the 3 of them again. 
  
  Also liked the GI doctor a lot!  He gave us his pager # and said to always contact him with any questions, concerns or to go over test results.  I reallye liked the Nutritionist too and think we'll work with her a lot once he can eat more food.  She gave me more of an insight to when he was an infant and toddler and having pain, started vomiting a lot at age 1.  She said there was probably milk in all his cookies plus we gave him yo baby yogurt and cheese sticks early on, not knowing of course.  uggh!   Learning so much now!! 
  
  Glad today is done with!  Was a very long and exhausting morning!
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• Wednesday, April 7, 2010 12:37 PM, EDT

  Well our baby is now 2!!  Wow- where did the time go?!!!  
  
  We survived his small family birthday party!  Made him rice cupcakes with chocolate frosting. Used kosher for passover chocolate chips to melt for the frosting.  He had some Sat. and Sun. and got very sick Sunday night!    Cleared up in a few days.  Then on Friday 4/2 he got a few bites out of a cupcake at playgroup.  He's so quick and I wasn't going to fish it out of his mouth!!!  Saturday we had friends over and he got a lick of frosting.  Sunday he got 1 piece of chocolate!  GRRRH!!  Sunday night he woke up in pain and vomited ALOT!!   He did great yesterday!  And then today he vomited while eating his banana!  Not sure what's going on!  He hasn't been eating much at all!  Mostly just banana and applesauce.  Not good!  He's gagging at the site of food or he will grab something and just play with it.  I'm thinking that he has seasonal allergies and it could be causing his EE to flare up!
  
  On Monday, 4/12 we have an intitial consult at MGH's Food Allergy clinic.  Look forward to that!
  
  On 4/27 we have an appt. with Childrens EGID program.  That will be with our current GI doc who we are not crazy about.  We are ready to leave Childrens for MGH but will see how these appts. turn out.
  
  Today he had a 6 month re-eval from Early Intervention.  He did great on things he couldn't do last time. Obviously speech and expressive language not so great!   There were 3 people here at the same time including his Educator Christie.  He did very well with all of them and didn't cry at all!  He sat on my lap, threw some things or pushed them away but also completed a lot of tasks that they showed him to do.  Very proud of him!  So in less than 6 mths he's done very well with just an Educator!  Those weekly sessions didn't start until December so it's actually only just over 3 mths!!!
  On 4/14 he starts ABA therapy.  That will be 3 mornings a week for 2.5 hrs. each time.  Early Intervention thinks he'll do very well with this frequency and will be blossoming in no time!  They suggest that we try their Language Group with the ABA Provider being there as well and start starting this summer.
  
  One of the ladies explained to me why he doesn't keep still and is always on the move.  She said he he gets overstimulated and excited.  He doesn't know what to do and how to take it all in and focus on one thing for long. I think the ABA therapy will help with this!
  
  pheww- think that's it for now! 

  
  

  
  

  • Thursday, March 25, 2010 12:33 PM, EDT

    Sam woke up at 10:45 last night crying and screaming!  He vomited ALOT on his carpet and also in the bathroom.  Took a while to calm him down.  His scream was so ear piercing and scary!  I couldn't soothe him and he wouldn't take the mylanta or juice that I offered him.  Felt so helpless just sitting there waiting for him to calm down.  Getting him cleaned up and dressed again was a huge struggle.  My poor baby!!!  Finally got him back to bed after an hour or so. 
    
    He's been fine today for the most part.  Had a 2nd EI session today as she will be away next week.  He did VERY well!  He sat on the Educator's lap and said "hug"!  I couldn't believe I actually heard it!!  He also said "all da" for all done, "no" and "hat" for Mr. Potatoe heads hat and was putting it on his head. YAY!!!!  Now if we can keep him talking into his next visit which is in over a week!
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  • Wednesday, March 24, 2010 9:24 PM, EDT

    Sam did VERY well with the new Educator starting last week!  By the end of the session he was hugging her and playing peak-a-boo!  The OT had a visit later that same day and he did GREAT with her too!  We were very happy!  
    
    He was doing well with alot of things until the last few days!
    
    Having doubts that turkey is a safe food for him afterall! He's been eating it off and on since Thanksgiving. But we never trialed it "alone". We always tried a new food either a week before or after.  Yesterday and today we give him turkey. And today he's very "off" and VERY difficult! He vomited alot tonight after his bath for which he screamed through. He was drooling again and holding onto objects! He went to bed holding onto a tube of toddler toothpaste and a chewy toy!!! :-( Again I believe the EE brings out these behaviors in him!
    
    Today we had ABA services come to tell us about their services and see what Sam needs help with.  That was a good 2+ hours.  The lady isn't sure yet when they will have slots open for Sam.  I may have to call another company as well to see what their availability is.  Really want to get this started within the next few weeks!
    
    Saturday is his family birthday party and to be honest I'm not looking forward to it.  I'm just not in the mood to play Hostess but I'm hoping to put on a smile for his sake and pray that everything goes well including with him feeling good! 
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  • Tuesday, March 9, 2010 10:23 PM, EST

    Sam's mood and behavior has still been "off" today.  I'm thinking it's the rice culprit that is doing it!  I just want my happy boy back and none of this VERY difficult "don't change my diaper, get me dressed or even try to put my socks and shoes on" whining, throwing himself down on the floor and crying temper tantrum toddler monster!  ha!  It's so hard to tell if this behavior is typical "terrible 2s" or if he's not feeling well from the EE and really does not want to be bothered.  We are definitely seeing a pattern though so if we get our silly Sam back in the next few days we'll know that it's from the rice!
    
    Tonight I was talking to my mom on the phone and he kept saying "I di....I di....I di....I di....I di....I di.....I di....I di....I di.."!  over and over again!  It was so fricken cute and I know his Nana loved hearing him try to talk and say "I did it"!!!   He was happy and having fun!
    
    Had EI session today and a visit from the Intake lady/Psychologist.  He was upset at first as he had just got up from his nap, had lunch and washed his hands at the sink in the bathroom but wanted to keep playing in there.   Perfect timing for them to show up and he was not happy!!!   Took him a bit to calm down and finally had a good session with his Educator.  We are working on getting his ABA services setup along with additional OT and ST (speech).  Hoping to start this new therapy for him by April!!   His current Educator will be ending her services with him next week and going on maternity leave.  I'm bummed with that and wonder if Sam will be looking for her when the new girl starts.  

  • Monday, March 8, 2010 8:13 PM, EST

    Made Sam banana rice bread and banana rice muffins over the weekend and he wouldn't try either.  Was hoping to trial rice flour with him but that's a no go.  He did eat plain rice crackers 2 days in a row and is clearly having negative reactions from that.  Went to check on him sleeping last night and he had vomited sometime in his sleep.  Big mess all over the bedding and his favorite puppy blankies.  Today his mood was "off" and he had loose and stinky stools. So 'we're officially done with rice!
    
    Going to take a break the rest of the week to let him clear up and also give us a break.  All these back to back trials are really getting to us!  Not sure what we're doing next.
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  • Friday, March 5, 2010 12:11 PM, EST

    GI appt today went well despite him being upset at times which is expected.   She is pleased with how he is doing and his weight has gone up to the 25% and height is 30%.   We will be pushing back his next scope due to the failed wheat trial.  We will trial rice flour next.   I have some recipes that I want to start making and am going to do a banana bread with rice flour and applesauce.  Also picked up some kosher for passover marshmellows, chocolate chips and cotton candy from the Jewish Butcherie on the way home!   Will be trying those with him too!
    At the end of the visit we mentioned Sam's Neuro appt. from yesterday.  She was taken back a bit and seemed concerned.   We told her we wanted him to be seen for his language delay and sensory processing issues.   We told her the diagnosis that the Neuro doc gave him.   She was VERY adament to say that we should NOT be giving him that label!   It is ok to use it to get the additional therapy services but for us to not think that he is on the autism spectrum AT ALL!  She is convinced that the sensory issues are in fact contributed from his EE.   She said for all the time that he's been in pain, gagging and feeling like he's being choked that he is going to have problems processing various sensories.   Felt relieved to hear this!
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  • Thursday, March 4, 2010 1:09 PM, EST

    We had a Neurology appt. this morning for Sam to discuss his speech delay and possibly sensory processing disorder.
    The doc gave Sam a diagnosis of Pervasive Developmental Disorder (PDD-NOS).   Doc said it's mild and even hard to say that at age 2 he does have that since he's only able to see a certain amount of Sam's behavior at the appt.  (this diagnosis does fall under the Autism spectrum but he is not autistic).  I think his real diagnosis should be Sensory Processing Disorder but we wouldn't get any additional services with that and right now he only has an Educator from Early Intervention which we haven't seen much of a difference in him yet from that.   Doc also said he definitely has a developmental language delay. He suggests having weekly speech therapy, Applied Behavioral Analysis services http://www.brighttots.com/aba_therapy.html  and possibly OT.  At the appt. Sam was crying a lot but did settle down to point to his nose, ear and belly.  He also looked at the picture cards, pointed to the cat and "meowed"  lol!  I forgot to ask him if he should still have the Educator from EI as well.  I'm going to give EI Intake Coord a call shortly.
    
    We also made an appt. for ENT/Audiology to check his hearing.  He did suggest that!  It's on 3/31 but I think Sam has his 2 year appt. that day too, need to double check.  Lastly he said we could do some bloodwork to check on his genetics, etc.  He gave us an order sheet and we can have that done during his next scope while he's under anesthesia!  ha!
    He also got weighed and measured at first which he screamed bloody murder at!  Not sure if the results are accurate but he measured 33.5 inches and about 25.12 lbs.   So that's up 1 inch and 1.2 lbs. in 2.5 mths- pretty good!!
    
    I think we covered everything we could.  phewww!  So glad that's finally done!   Now if I can keep on top of all these weekly services plus his GI appts!  oy!  Glad I can be this kid's personal secretary!  :-)
    
    

    • Saturday, February 27, 2010 8:52 PM, EST

      Restarted wheat yesterday for the 2nd time. Took almsot 1 week off in between. He had 4 GREAT days of no vomiting, eating ALOT of safe foods, WONDERFUL mood, etc! He had 1 serving of wheat crackers yest and today. By this p.m. he was on the floor in screaming pain, gagging, coughing, vomiting and inconsolable! His behavior was awful thru the day too!  We have a GI appt. on Fri. and will discuss then.
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    • Sunday, February 21, 2010 9:19 PM, EST

      Like they say "all good things must come to an end"!   Sam woke up from his nap today with vomit all over him and his bedding!   Have no idea when that happened as we didn't hear any coughing or gagging!   I had company over but put the monitor on and kept listening for him at the end of his nap as it was going onto 3 hours.  I'm so pissed at myself cuz we gave him rice pasta last night!   Too much adding things in while trialing wheat!  He hadn't had rice pasta in over a month and we stopped it before as he was vomiting every time he had it.  But that scope came back clear so I thought we'd give it a try again.  uggh!  NO more rice products while trialing other major triggers!   Now we need to wait a few more days until trying wheat again!   I hate this!!!   I'm so inpatient and just want to know already what the heck he's allergic to!   And I feel bad feeding him the same things EVERY SINGLE DAY!!!  bananas, applesauce, cucumbers, maybe apples or cantaloupe...all depends on his mood but that's it for the most part!  So I don't want to hear about non-EE kids that eat the same thing every day too..at least they can eat WHATEVER they want!  Obviously I'm a bit frustrated tonight! 
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    • Friday, February 19, 2010 8:06 PM, EST

      another good day!   No vomiting YET and he was very hungry today!!  He ate a whole banana between breakfast and lunch.  Finished off the rest of the turkey, 1 container of applesauce (between lunch and dinner), some cucumber and cantaloupe!!   That is ALOT for him!!   Obviously he's feeling better but we still don't know if it was from the wheat, reflux or a cold.   We'll restart wheat again either Sunday or Mon.
      
      Went to Stardust gym this morning and that didn't go well.  He was happy and smiling for 10 mins and then complete meltdown.  Finally took him out of the gym room and he just had a ball running around their front room, looking around and touching everything!   Really need to find an indoor playspace to take him to where he can enjoy himself and learn the consistency of going every week. 
      
      

      • Thursday, February 18, 2010 10:58 PM, EST

        A great day- no vomiting, coughing or wheat!  We figured we'd take a few days off from wheat since he has been vomiting and has had a few loose and stinky stools!!   We also started him back on Prilosec today.  We are using the gneric brand capsules to open them up and mix the beads into his applesauce.  He took it with no hesitation, didn't even know it was in there!  yay!  He was in a much better mood today!  I think we'll stay off the wheat for the weekend and try it again on Monday after the prilosec may have kicked in a little.
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      • Wednesday, February 17, 2010 9:32 PM, EST

        We went to the EE Support Group mtg. this past Saturday.  It was so refreshing again to talk with these other parents whose child/ren have the same chronic illness. As we get further into this process of food re-introductions it is becoming more difficult to understand why Sam is vomiting when his biopsy comes back normal.  Is it his reflux?  Did we feed him too much?  Is it because he has a cold and cough?  So many questions and we can't always figures it out.
        
        His next Endoscopy will be on March 17th.  We just started a wheat trial on Friday 2/12 so that scope and biopsy will test for the wheat allergen.   So far we've only given him cheerios and some crackers.  Need to add more wheat foods to see how he will react.
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      • Friday, February 12, 2010 10:33 PM, EST

        Went to playgroup this morning.  After a few initial whines and hesitation Sam did great and had fun!  phewww!  I actually came home with a sigh of relief instead of feeling emotionally drained!   I swear I can never tell how each adventure out of the house is going to be with him.  I guess it depends on how he is feeling and if anything or anyone triggers his sensories or if his EE or reflux is bothering him. Who knows!
        
        This morning we started wheat foods with him.   Only gave him a few cheerios and a few cinammon graham sticks.   He was fine until after naptime.  He was drinking his formula and all of a sudden gagged and puked ALOT in the living room.   We cleaned that up, Steve used the steam cleaner, gave him applesauce shortly after that and Sam vomited again within a few mins.  Poor Steve dragged the steam cleaner out again!  Thank god for that thing!  Otherwise our living room carpet would be a big MESS and SMELL like PUKE!!!  We didn't give him much else to eat after that.  He was not in any pain before or after so we were scratching our heads on that.  Could the wheat have given him a reaction already?  Don't know but I wrote everything down, that's for sure!  
        
        He just woke up at about 10:00p, was crying and gagging but that was it.   Please let him sleep through the rest of the night!
        
        Tomorrow we are going to the EE support group mtg. at Children's hospital.
        
        going to check on him now as I just heard a whine.  Hope he is ok.  He was sitting up and crying again but then laid back down.  uggh!   Not sure what is going on but don't like it!!  

my fave pics from the week

Daddy and Sam watching Handy Manny

Running, running and running

attempting to paint, lol!

Goodnight baby!

thoughts for a Friday

What an exciting title, haha!  Went to playgroup this morning at Sarah's house.  After a few initial whines and hesitation Sam did great and had fun!  phewww!  I actually came home with a sigh of relief instead of feeling emotionally drained!   I swear I can never tell how each adventure out of the house is going to be with him.  I guess it depends on how he is feeling and if anything or anyone triggers his sensories or if his EE or reflux is bothering him. Who knows!

This morning we started wheat foods with him.   Only gave him a few cheerios and a few cinammon graham sticks.   He was fine until after naptime.  He was drinking his formula and all of a sudden gagged and puked ALOT in the living room.   We cleaned that up, Steve used the steam cleaner, gave him applesauce shortly after that and Sam vomited again within a few mins.  Poor Steve dragged the steam cleaner out again!  Thank god for that thing!  Otherwise our living room carpet would be a big MESS and SMELL like PUKE!!!  We didn't give him much else to eat after that.  He was not in any pain before or after so we were scratching our heads on that.  Could the wheat have given him a reaction already?  Don't know but I wrote everything down, that's for sure!  

He just woke up at about 10:00p, was crying and gagging but that was it.   Please let him sleep through the rest of the night!

Tomorrow we are going to the EE support group mtg. at Children's hospital. So thankful to have my friends Sarah and Stefanie coming over to watch Sam.   We really want to be able to focus on the speaker at the meeting and talk with the other parents there.   Hope Sam does good with his babysitters.  :-)

I was an emotional mess yesterday and cried a few times while I was driving.  I kept telling myself that who was I kidding putting on my strong front face all the time?  Half of the time I don't know whether I'm coming or going and how I get up every morning!   But I know I do it for Sam.   Deep down though I am not taking care of myself that well.  I've been doing alot of emotional eating again, feeling very anxious, tired ALOT and just not happy or very cranky!   I need to make some serious changes!

going to check on him now as I just heard a whine.  Hope he is ok.  He was sitting up and crying again but then laid back down.  uggh!   Not sure what is going on but don't like it!!   Time for bed for me, hopefully!

biopsy results are in

Spoke with his GI doc last night.  She said Sam's biopsies were normal which means that he is not allergic to any of the foods that we reintroduced from his last scope in mid-Nov. til this one.  We were really confused at first though with him vomiting every day again for over a month! She said that is from his acid reflux and it got worse when he had a stomache bug and then a cold and maybe still lingering on a bit. who knows! This whole thing still confuses me!!! He vomited during dinner tonight but I think Steve gave him too much food. He has a very strong gag reflux too so that doesn't help! For now we're giving him mylanta every day but will probably go back to a prescription med again.

She wamts us to start giving him turkey again since he was doing well with that and loves it. If he is not vomiting after a few days we can start WHEAT for the 1st time since last summer! We'll do another scope after 4 weeks of wheat to see if any allergens show up. The goal is to only introduce the trigger foods now with a scope 4 weeks after starting each one- providing all biopsies are normal. We are expecting the milk or soy to be positive and will do those last.

I am looking forward to trying cheerios, bread, wheat pasta and crackers to name a few!   We'll do at least 1 wheat serving a day!

Sam had a good EI visit yesterday again.  He really likes the Educator alot and ran up to her with open arms when she came in.  So cute!!!  

Had a tough time with him at a Moms brunch this morning.  It was at Stefanie's house and he was fine at first, happy and playing.  I got there early to get situated and give him something to eat before everyone else came.   The kids were pretty loud and using toys that made a lot of noise.  I think all the noise was bothering Sam as he would not go back into the playroom and was miserable for the rest of the time. Obviously I wasn't happy either and worn out by the time we got home from him crying and carrying on. uggh!  Calgon take me away!!!

He really surprised me today!

This morning Sam, Steve and I went to an indoor playspace.  We met a few of my friends from the Moms clubs with their kids too.  This was our 1st time going to this place called the Totplex.  I was a little nervous how Sam was going to do but we went.   It's a big indoor soccer field (I think) with tons of clumbing structures, slides, jumping houses, cozy coupes, these little rollar coasters (will have to put a picture) and lots more.  And ELMO was visiting!   It was VERY crowded with kids and adults. 

When we first got into the big play space he was a bit clingy and whiney.  But all of a sudden he saw one of those cozy coupe cars and he went running!   Guess he found his comfort zone/toy!   yay!  I had a great time watching him, taking pictures, chatting with the other moms and watching their kids play too.  I helped Stefanie out a little bit with Nicholas.   Glad I could help her while Steve was with Sam.  

He also surprised me when he was in one of the cars and a little girl was trying to push her way in it with him.  He pushed her out of the way and down she went.   Wow- that's my baby sticking up for himself!   Go Sam!!   lol!   I did feel bad though and said sorry to the girl and her mom (I assume).  no biggie- it happens all the time.  I'm just used to it happening to Sam and him not doing it to other kids.  Guess he's getting a little more aggressive now that he's growing up!  That a boy!

I was so happy and proud that he had a GREAT time even with all that was going on there!  Yay for my Sammy!

• 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.

good day

I have to say even though I felt like I didn't sleep well last night and clearly remember being awake at 2:30 a.m. thinking about everything, I felt pretty good today.  I didn't nap today and got a few things accomplished!

Sam's EI visit with Sarah went well.  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 Sarah 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.   We are going to have a talk with the OR staff as soon as we get called in about trying to keep our area more calm for him; less light, noise and people in his face.  It's bad enough that he has to be there and then to have all these sensory stimulation- it's just too much for him.  Oh shit I forgot to ask my friend Stefanie if we could borrow her portable DVD player.  uggh!   Well I'm sure we'll survive without it but next time definitely!!   Oh now that I remember we tried to use the hospitals laptop last time to watch the Disney channel online and that didn't work but I bet if I bring a Mickey Mouse DVD we can play it on their laptop.  Score!

Now I hope that I can sleep well tonight and not be thinking about tomorrow and anxious in the morning.  Might have to take a little happy pill to help me with that!  haha! 

successful Walmart trip!

Feeling better today!


It's the little things like a successful trip to Walmart that make me happy, lol!   I had my list all written out and in order of the locations of the store.  Had to take Sam with me as Steve was at an interview.  I wasn't sure if I was cutting the time close to Sam's nap by the time we would get back but I looked at the time when I was at the checkout and it was 11:00 which meant I could have him home and in the crib before 11:30.   Granted now it's 12 and I know he's still up.  haha!

I bought a few things to start working on the Sensory Integration Diet with him.  Will write more about that later.  Want to get offline so he can fall asleep and I can do a few things before Sarah comes from EI.

Sensory overload!

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.  I found out the other little boy who gets upset too is only 1 day older than Sam.   I enjoyed watching that boy today, he was too cute.   I could see Steve getting upset during the group and felt bad in a way.  But then again I'm the one that's been going through all these activities with Sam 99% of the time so it was good that he gets to experience how emotional it is too.   Steve went to his therapy appt. this afternoon and is still pretty emotional tonight.  Why am I always the one that has to put on the strong face for us?  I actually came home and had a good cry today after putting him down for a nap.  Made me feel a bit better.

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.  Steve had his appt. so I met with her alone which was fine.  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.  It scares me in a way because this is how I get with anxiety and I wonder if I've attributed any of this to him.  I'm not blaming myself but I still wonder.   It also makes me realize how I will do anything to help Sam get better and function like a normal toddler but I still need to help myself and face my fears too.   I guess he comes first though.  Eventually I'll get there too!

Back to the OT visit today- she 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! 

We also spent some time scooping and dumping dry macaroni in a container.  He did ok with it until he started throwing it all over the floor then we said all done!   We're also working on putting shapes into the sorter, nesting and stacking up cups. 

Tomorrow afternoon Sarah comes for his weekly visit.  And Wednesday morning we have his scope.   Busy start to the week!  I'm tired already!