IEP meeting

This week we had an IEP meeting for Liam.  Even though his IEP was only written in late August (and re-done in September), he needed a new one as he has made so much progress.  Dave is out of town, so I was on my own for the meeting.  A friend watched Ben, even though he was sick, and Liam played while I met with his teacheer and the school SLP (speech language pathologist).

Liam's speech tests at age level now, but his generalization of language is still lacking.  This means he has the tools but struggles with application.  Liam still has motor planning difficulties, which is affecting potty training and his ability to put on his own outerwear.  Liam has sensory procesing difficulties which means he is easily overwhelmed in a school setting.  The school is making accomodations for this by doing things like putting up a binder in front of Liam while he colors so he has less sensory input or taking him to a quiet area of the classroom to put his outerwear on.  Liam struggles with flexibility in a school setting, and this leads to alot of social anxiety and tears when things go differently than Liam's expectation.  Just hearing this breaks my heart.

One of his goals is to learn to take the perspective of others and identify simple emotions.  The SLP says this will take several years, but it is important to work towards this as it affects reading comprehension in later years.

Another goal is answering "wh" questions.  Right now, Liam cannot answer questions.  He used to echo the question, but now he just says "I don't know" for everything.

There will be a goal of working to learn anxiety management tools like breathing or counting.  The teacher wants Liam to learn to recognize the signs that he is building up to a meltdown so he can attempt to remove himself or calm down before he enters a full blown meltdown.  Once he is in meltdown mode, he cannot handle any other sensory stimuli (like having someone talk to him, hug him, or interact with him at all).  Thiss is another long term goal.

He has several goals towards learning how to engage peers in play (asking instead of demanding) and sustaining a conversation.  He will continue to work towards potty training and learning to dress himself.

Overall, it was a very good meeting.  Liam has made so much progress.  As a mother, I still felt emotional that Liam is still so different from his peers and that the world is so anxiety-producing for Liam.  I just want him to be happy.

Guess it needed to be cleaned anyway

I was in the middle of washing Liam's hair when Ben spit up a good tablespoon or so of chunky food into their shared bath tub.  Now I know what is grosser than cleaning poop out of the tub.

So, part of the battle is getting him to eat and swallow the food (doing those things while sitting in a chair is clearly a lost cause):

Then I need him to keep the food down.  I think I am going to start journaling how often he spits up actual food.  I know he refluxes more often and swallows it.  After that bath, he did that while I was dressing him.  Then there are the time I can just smell the vomit on his breath. :-(

Liam has a cold and is getting worse by the day.....14 more days on my own.....Thankfully, my neighbors have kept my driveway clear so that is one less thing to worry about.

Reflux: The Way Ahead

The fantastic news we got recently is that Ben's biopsies show no inflammation and the ped GI was able to rule out eosinophilic esophagitis.  This is wonderful because the concern was that Ben had an autoimmune condition and worst case scenario was that he might need a feeding tube (thankfully, I know a few people whose kids are thriving with feeding tubes but it is something I'd rather avoid).  There is bad news and that is we are no closer to understanding WHY Ben still spits up at 21 months.  Even with reflux, actual spit up after the age of 1 is uncommon but Ben still does spit up.  Honestly, not having an answer is making me a little crazy.

One possibility is that he has Sensory Processing Dirsoder (SPD), like big brother, Liam and has texture issues to food.  SPD often runs in families and Ben does demonstrate some sensory sensitivity by toe walking.  Another possibility is his dysphagia (medical term for difficulty swallowing) is due to the fact he knows it will likely come back up.  Would you want to swallow chunky food knowing you'd feel it in your throat an hour later?  In either case, the treatment is OT focused on feeding problems.  Since Ben already qualified for Early Intervention, it is one of his goals for therapy.  Last week we tried yogurt covered raisins, cut up grapes, and tortilla chips.  Ben asked for all of them and spit all of them out.  After spitting, he'd happily ask for more.  I think the OT noted one raisin and 1/4th of a grape swallowed.  That is how most meals go.  This week we focus on meats.  The OT also brought some toys that stimulate the mouth and tongue and Ben was happy to play with them but insisted on controlling how much they touched his mouth.

Another possibility is food allergies causing reflux or even celiac disease.  I have asked several times for allergy testing for Ben and keep being told it isn't needed or justified.  I don't know of any other 21 month old that spits up, and I am having a hard time trying to figure out why Ben does.  I can either keep fighting for allergy testing or put Ben on an elmination diet so I can figure out allergies without testing.  I'd much rather get a referral for allergy testing; I just don't trust myself enough to see a difference in reactions during an elimination diet.  I know I saw no difference with eliminating casein, so there is more than just a milk allergy (he might still have a milk allergy but I didn't see a difference b/c he has multiple allergies or maybe he is only allergic to gluten and not milk).  In any case, I'd feel safer with some sort of allergy testing to guide me through an elimination diet.

So, my way ahead for Ben's treatment is

medical: continue with the Prilosec and try to wean him off it every 3 or 4 months and pursue allergy testing,

behavioral: continue OT for feeding issues

alternative: seek out a chiropractor, hopefully one trained in craniosacral therapy to address Ben's reflux

I am really hoping somewhere down the line there are answers.  Liam was a different child once he was diagnosed on the spectrum and started the right therapies.  It was like we turned a key and unlocked Liam's potential, and I want that same thing for Ben.

TDY mantra

No vomiting
No ER-worthy injuries
Minimal meltdowns

* and repeat* *and repeat* *and repeat*

Please make the above be true.  Saying good-bye tonight was hard; the deployment was too recent for me to want a 3 week break.

Progress Report from school

Liam brought home a progress report from school this week.  We were supposed to re-write his IEP this week, but it was re-scheduled for two weeks from now (which means I need to scramble for childcare or bring the boys with me as Dave will be out of town).  The progress report he brought home shows how far he has come on his current IEP.

First goal: Liam will be able to pull his pants up and down as part of the toileting process.

Progress: In August, Liam could not do this at all.  In October, Liam could pull his pants down 100% of the time but could not pull them up at all.  Now, Liam can pull his pants back up 37% of the time.  He does better with pants with zippers compared to elastic waistbands (which goes against conventional wisdom).

Second goal: Liam will accomplish potty training.

Progress: In August, Liam never indicated he had to pee but would pee if trips were scheduled.  In October, Liam remained dry all day at school 20% of the time.  Now, Liam remains dry at school 55% of the time.

Third goal: Liam will verbally indicate when he needs to use the restroom and will independently access bathroom needs (flushing, washing hands, etc). 

Progress:  In August, Liam could not do this at all.  In October, Liam had not accomplished any of this.  Now, Liam verbally indicates the need to use the bathroom before going 33% of the time.

Fourth goal: Liam will engage in age appropriate activities with peers.

Progress: In August, Liam never engaged in pretend play with peers and had difficulty with turn taking.  In October, Liam had no problem taking turns, but never initiated play.  He only engaged in pretend play in 16% of the measured opportunities.  Now, he engages in pretend play with peers in 100% of the measured opportunities and seeks out friends to play with.  This goal has been accomplished.

Fifth goal: Liam will participate in non-preferred activities for 10 minutes duration.

Prrogress: In August, Liam was noted to have a limited attention span.  By October, he was engaging for over 10 minutes in 85% of the opportunities.  Now, the teacher feels this goal has been accomplished.

Sixth goal: Liam will communicate with peers and adults non-verbally and verbally.

Progress:  In August, Liam seldonmly returned greetings.  In October, he responded to greetings 50% of the time and initiated verbal exchangely occasionally.  Now, he verbally interacts continually. :-)  This goal has been accomplished,

I believe the road ahead will be less focus on language and more focus on social interaction, as well as continued focus on potty training and adaptive skills.

In other news, I toured a preschool yesterday.  They are already full for next year (!!!!!!!!) but I will be placing Liam on the waiting list.  My hope is for him to attend the "regular" preschool in the morning and continue special education in the afternoon.  There is a chance that the school I saw would have space for him in the 3 year old class next year (if he were 12 days younger, they would automatically place him in the 3 year old class, but with an August 20th birthday he would technically qualify for the 4 year old).  Given his delays, I wouldn't have any problem with him going into the younger class, but I'd prefer him to be in the 4 year old class.  The school requires once a month parent involvement which means they provide daycare for Ben and I get to assist Liam's class.  I think this school would be a great fit for us, so please cross your fingers they can find space for my special boy.  Of course, it means I have until August to get him fully potty trained, so cross fingers for that as well.

Ben's endoscopy

Our trip to Seattle was easier this time as I didn't have a stomach bug.  Ben did not like his pack and play and would not sleep in it.  I tried several times, and he screamed everytime I put him in it.  Finally, I laid on the bed in exhaustion, and he snuggled into me and started breathing sleepily, so he stayed in bed with me.  He woke at 12:30am, crying, and we re-started the whole process.  At 1:30am, he was asleep again and I was trying to fall asleep.   Our alarm went off at 5:15am and he woke up with me.  By  the time, we got to Children's Hospital, he was an over-tired, hungry mess and it was only 6:30am.

Ben was jumping and trying to leap off the hospital bed, even with the rail while they took his vitals.  The anestheologist offered the option of a "pre-sedative" and I agreed it was probably in everybody's best interest.  Ben relaxed quickly.  The anestheologist allowed me back while they put Ben to sleep with gas.  It took 3 of us (me and 2 nurses) to hold Ben still enough for the anestheologist to put the mak on Ben's face.  I cannot imagine he could have done it without the pre-sedative.  I guess they normally do just gas, but Ben needed a breathing tube and IV due to his severe reflux.  Once the gas put Ben out, I was escorted from the room, so they could run the tubes.

Ben's GI came out as soon as the surgery was done.  Ben's esophagus, stomach, and lower ntestine all look healthy.  The GI took tissue samples that will be biopsied and there is a possibility that the biopsies will show damage, but the GI doesn't expect it.  I will update after I have the biopsy results.  So for right now, Ben's diagnosis is severe reflux.  However, he is  still spitting up weekly and still won't swallow much food.  The GI wants to wean him off Prilosec, but we just started to see results from the increased dosage and I don't want to go back to not sleeping.  I need to see Ben's PCM and come up with a course of action.  In the meantime, Ben has his first appointment with early Intervention tomorrow.  I will talk to his OT about starting feeding  therapy to work with him on actually swallowing  food.

ER visits and regressions make for a rough week

This week has been rough. 

Liam went back to school; he loves school.  But the first two mornings, he cried and said he didn't want to go.  The third day, he came home with a note asking if he was okay at home as he was being distracted and tearful at school; this is not typical school behavior for him.  Liam is having a transition with his ABA therapy.  The tutor he has been working with for 3 months is having a baby soon and going on maternity leave so he is starting with a new tutor.  He has had two or three "mini-meltdowns" during every session within the last week; he normally only has 1 mini-meltdown a week during ABA. 

He just re-grouped from a full on major meltdown--the type I haven't seen in about 6 months.  I couldn't hear it happening and not get involved, especially as he is working with a less experienced tutor who was trying to talk him through it (talking doesn't work for full meltdowns).  I guided him to his beanbag and covered him with his weighted blanket.  The screaming continued for quite some time.  I realized how out of practice I was, as at one point, I dealt with huge meltdowns weekly.  I also confirmed the fact that childcare will be a challenge as few people are equipped to deal with something of that magnitude without training.  I still remember Dave's reaction the first time he saw one after coming home from deployment.  This is only the 3rd one Liam has had since Dave came home and Dave himself is clueless as how to manage one.

Then there was this:

Yesterday, Liam pushed over the boys' couch while him and Ben were on it.  Ben's face smacked directly into the step off the fireplace hearth.  His nose was bleeding, and his cheek got swollen and hard.  I called Dave to come home to help and took Ben into the Elmendorf ER.  We waited for 4 hours.  In the end, Dave came to join us while Liam worked with his ABA tutor.  I left before Ben was seen as it was time for Liam's ABA tutor to leave.  Ben was seen for less than 10  minutes and it was decided the nose wasn't broken.  I called Seattle Children's Hospital today and the nurse consulted the doctor and told me they wonn't know until they see Ben whether his nose is too swollen to go forward with the endoscopy on Monday.  I am really hoping that I don't travel 3 hours by plane and have Ben fast, only for the surgery to be cancelled.

Liam, my budding photographer

Liam has started demanding my camera and wanting to take photos.  These are photos he took before Christmas.  I am going to try to remember to let him take more photos, especially since I got a nicer point-and-click for Christmas (a super-zoom Panasonic Lumix).