In Thanksgiving.....

I have much to be thankful for this year....

• SLEEP



After over 19 months of poor sleep, sometimes sleeping less than 8 hours a night, often awake by 5am and/or awake for 2-3 hours around 1-2am, Ben is sleeping.  It has been over a week since I have gotten up with Ben, although he has been up in the night the last two nights (and has fallen back to sleep without needing me).

• HUSBAND

Last year Dave left the US in early November and missed: Thanksgiving, Christmas, New Year's, Valentine's, Ben's 1st birthday, Easter, our anniversary (dating, marriage, and engagement), Mother's Day, and his birthday.  This year, he is home.  He just realized he has never spent a Christmas with Ben.  I am thankful he is here.

• PROGRESS

Last year Liam didn't know to look at the camera and smile, but this year he does.  Last year Liam only used scripts and delayed echolalia and rarely more than 2 words together.  Today Liam speaks in complete sentences.  Last year Liam didn't know it was the holidays or what Santa was.  This year he can name days of the week and knows the difference between holidays.  With every day that passes, I am increasingly hopeful that Liam will just be quirky and different but will have a totally normal life.

19.5 months

Liam was exactly 19.5 months when Ben was born.  These are some pictures my sister-in-law Michele took of him while I was in the hosital having Ben.

He looks so happy, so chubby (look at those chubby legs and that size 5 diaper), and like he has so much hair!  He also looks so much like a baby still, and he very much was.  He had maybe 20 words, but rarely used words at all except to label things.  Today Ben is 19.5 months; he has much less hair, is about 10 pounds thinner and 3 inches shorter (wears a diaper a size smaller and clothing 3 sizes smaller).  Ben has 100 words or so, frequently uses them to request demand things.  As much as Liam seemed like a baby when Ben was born, Ben seems even younger to me now.  The pictures are bittersweet because back then I had no concerns about Liam's development and every hope that Ben would be an easier baby than Liam was.  Liam and I had no clue how much this guy would change our lives:

It is a good thing that life happened in this order.  Ben's constant crying helped to highlight Liam's auditory defensiveness which is what prompted me to seek help for Liam, and I have a feeling if Liam had remained an only child, he would have gone undiagnosed until school age.  At 19.5 months, Ben is a very difficult and generally unhappy child.  As difficult as it was to nurse Ben while Liam climbed the couch or colored crayons on the wall, it would be much more difficult to nurse a newborn today while carrying Ben and walking circles around the house for 1-2 hours just to quiet the screaming for a bit.  Ben refuses to share Mommy, pushing Liam off my lap or hitting him for trying to talk to me, but Liam has always been a very generous big brother and allowed Ben however much attention Ben wants that day.

Ben is now the same age Liam was when he became a big brother, and I am really glad to never have to experience 2 under 2 again.  In fact, I am certain that after the last 19.5 months, I am done having babies altogether. 

Living in the Moment

I started doing yoga in October.  The class meets while Liam is at school, and there is daycare available for Ben.  The class is more Yoga-esque than true yoga.  The teacher incorporates alot of Pilates into the class.  One of the thing she reminds us is to live in the moment.  I have struggled with this idea my whole life, but can really see the value of it.  I read a novel this weekend about a single mom raising a son with autism and it repeated this message alot, and it is probably even more important with special needs kids to embrace where they are at this moment instead of looking ahead or behind.

So for today, Iam living in the moment.  I am not worrying about whether Liam will be potty trained this summer.  I am not thinking back to a few months ago when Ben was happy all the time and wondering what changed.  In this vein, Dave and I have decided our family is complete.  I am tired of thinking ahead to a time when it might feel complete or planning for another baby.  I want to live in the moment and enjoy where we are right now and treasure the age my boys are at this moment.  As we know, the moment passes too quickly as it is.

I am sure tomorrow I will be back to thinking ahead, but I am treasuring being able to live in the moment on this day.

Third times a charm?

Ben and I travelled 1400 miles each way last week for him to see a pediatric GI specialist at Seattle Children's Hospital.  This makes his 3rd different GI since last August, but who's counting?  The flight down was interesting as I had caught the stomach bug going around our house and spent the trip puking my guts out in the middle of the Anchorage terminal, on the plane in a barf bag, and then again in the terminal in Seattle.  If travelling alone with a toddler, I don't recommend doing it with a stomach bug.  Seattle was beautiful--very warm and the hotel was in a great area.  This is fortunate, as we'll be going back.

I wasn't expecting much from the appointment.  I know my friends keep telling me what a great advocate I am for the boys, but I often feel defeated, as if I keep fighting and keeping failing to get them what they need.  All I wanted out of the appointment was a prescription for more Prilosec and a promise to scope Ben to look into the causes of his reflux.  I have been concerned for months about the possibility of Ben having eosinophilic esophagitis and have asked both of his previous ped GIs about whether we should be looking at food allergies, though I never mentioned the disorder I feared he had.

Ben's new GI specialist is Dr. Burpee which cracks me up.  I shared with him Ben's history, and he noted that he was not at all concerned about his size: 32 inches (30th percentile) and 23 pounds (15th percentile).  Dr. Burpee asked me alot of questions, and focuses his concerns on 3 main areas: Ben's difficulty in swallowing food, his excema, and the fact that Ben STILL spits up while on Prilosec.  He said this constellation of symptoms, especially the fact that the solids Ben struggles with the most to swallow are chicken and pasta are symptomatic of eosinophilic esophagitis.  This website (http://www.apfed.org/ee.htm) has more information about the disorder, but it is a serious autoimmune condition that involves multiple food allergies and mimics reflux.

Our course of action is two fold: tripling Ben's Prilosec dosage to 5 mL twice a day (10mL compounded at 2mG per mL) and having an endoscopy to biopsy lesions in January.  For the scope, Ben will go under general anesthesia.  I am praying he doesn't have eosinophilic esophagitis, but am glad he is being scoped so I never have to wonder if there is something more serious going on.

It is probably nothing.....

but after berating myself for not pursuing Early Intervention with Liam sooner when I first noticed his sensory issues and problems with transitions, I am not taking any chances.  Liam started to be difficult at 14-16 months, but everyone assured me it was "normal"and I ignored my Mommy instinct.  I learned how to control Liam's environment to avoid themeltdowns, and then when Ben was born chaos ensued.  Looking back, both Liaam and I were so unhappy, and now that he is receiving adequate therapy, he is such a different kid that I wished I had called earlier to save us all the months of heartache.

Ben is such a different child from Liam, and definitely has a different developmental path.  Nonetheless, over the last 2 months, he has gone from simply being high needs to being just outright angry.  All Ben wants to do all day is have me hold him and walk circles around the house.  I feel like I have a newborn.

Then there is this....

He walked heel to toe for 6 months and just recently his heels have raised.  I read everything I could find and walking on toes after 18 months is a definite problem.

I e-mailed Early Intervention, and they agreed that Ben qualifies for an evaluation for sensory and motor issues.  I feel sick to my stomach thinking about it, but I don't want the months of misery I had with Liam either.

Ben also heads to Seattle this week to see the pediatric GI specialist at Seattle Chidlren's Hospital.  I am hoping that between both of these upcoming appointments, I can find a happier Ben that is willing to play with his brother instead of cry everytime Liam touches him.

Liam's first parent/teacher conference

Liam had his first parent/teacher conference on Wednesday.  Unfortunately for me, the night before he also had his first stomach bug.  The sweet boy was such a trooper about getting sick, but me and Dave were up all night with him.  He was better the next day, while we were total zombies.  My brain was very fuzzy when I went to his conference, but I did come away with lots of valuable information.

-Liam met all his speech goals in less than 2 months.  IEPs are written to last a year, so his is going to have to be re-written to update and make new speech goals.

-Liam has accomplished ALL pre-academic skills in the preschool curriculum.  His teacher said the only thing left to teach him is 6 year old material, and that isn't approrpiate, especially since he uses his strong academic skills as a social shield.  Making him smarter will hardly help the poor guy blend in with other kids.  At home, Liam is taking an interest in spelling and can now spell Ben and Mama, in addition to Liam.  At home, we don't discourage his academic interest, and I imagine he will always be ahead of the curve on academics.

-One of Liam's IEP goels is attending to "non-preferred activities" but his school hasn't found any non-preferred activities.  Somehow my high needs constantly trantruming toddler has morphed into a sweet, obedient,easy-going preschooler.  I am certainly not complaining about this.

-Liam continues to struggle with socialization.  He only engaged in pretend play with peers 16% of the time.  He loves his friends at school and when we get together, I watch how hard his classmates work to include Liam.  He just struggles with this area.  We need to make him stronger here b/c I watch him interact with typically developing peers and they aren't nearly as kind or willing to try so hard with Liam. He is already being isolated and left out if playground and open play type settings, and poor Liam responds by smiling at the mean brats that are sticking their tongues out at him and making fun of him.  I am so glad that school is a safe environment for him.

-Liam either doesn't exhibit his sensory seeking behavior at school or it isn't bad enough to get anyone's attention.  Liam engages in lots of crashing and vestibular sensory seeking at home, and I certainly find it disruptive, but I was told he doesn't do it at school so they don't feel a need for him to engage in OT. 

Liam really is a joy these days and I am amazed continually by how far he has come with therapy.  He is such a happier child than he was last November when he was diagnosed.

Halloween and the value of social stories

I have dreaded getting Liam into costume every year since 2007 when he was too small to protest.  This year his ABA tutor did alot of social stories with Liam about Halloween and wearing his costume.  On Halloween, Liam started crying and demanding his normal pants, so I went into his room and fetched the story that he had colored with his ABA tutor and reminded him about his costume.  He happily put it on, and I didn't hear any complaints the rest of the night.  Even more amazing...he went trick or treating!  He needed me to stand right with him for security and needed verbal prompts to remember to say "tick or treat" and "thank you" but he DID it.  He was still saying yesterday "I love trick or treating.  I love being a dragon."

Ben was not nearly as happy about being a giraffe.