Our New/Old Normal, part 2

continued from part 1

It took a couple of months to finish and the final report itself is 21 pages long.  The school psychologist had Alexander self report, she had his teacher, OT and ST therapists complete evaluations, she conducted classroom observations, and Mark and I complete questionnaire after questionnaire.  The tests bore out what we already knew.  His IQ is 111 or above average.  He has a superior vocabulary but delayed processing speed.  Areas of significance include emotional control, initiation, working memory, planning/organizing, organizing materials, and monitoring.  ADHD was ruled out but attention problems were highlighted as well as adaptability, functional communication, attitude towards school, and activities of daily living. 

Perplexed by his speech pattern, his ST called a stuttering expert at CHOP who indicated he has seen the same pattern in people with Autism.  This was about the same time that the latest series of parent questionnaires started to scare me.  His pediatrician did not think it was ADHD and began asking questions that scared me.  We were headed in a direction that I was desperate to stop.

That’s when we got a phone call from the school psychologist and speech therapist.  They didn’t want to send home the parent questionnaire for Asperger’s without giving us a heads up, which was a good move.  Three days later the reports were completed and we were told that “results of the social-emotional and behavioral assessments along with the testing results, the data from the questionnaires, as well as the observations indicates that Alexander demonstrates behaviors that are consistent with the characteristics of children with Asperger’s Syndrome.”  

I spent the weekend alternating between crying, raging, drinking wine, cursing God, painting my kitchen blue, researching Asperger’s, bargaining with God, searching for ways to blame myself, and then landed firmly in denial.  Mark was unfazed and that fazed me.

How could this possibly go unnoticed for so long?  Taken separately each of the traits that I now suspect are tied to Asperger’s could be explained away.  Much of them were exactly how Mark was as a child.  The trains obsession, the picky eater, the meltdowns and on and on.  I became depressed and felt like such a failure.  Still I dragged my butt to work and commiserated with my colleagues who also work in the disability field. 

It was a miserable few days and I was so disappointed in myself that I couldn’t stop looking at my son differently.  Not negatively per se, but with eyes that know too well the struggles that go along with disabilities and the immense load of work that had just landed on my shoulders to ensure he will have everything he will need.

continued HERE

Trains

On our way home from the water park on our mini Spring Break get away, we stopped at a railroad museum. As Alexander and his dad are borderline obsessed with trains, it sounded like a great plan. Except that they didn't open for the season for another week and the gates were locked tight. A staff member drove up just as I was about to break the bad news. I did my best impression of a silver tongue devil and voila, we had permission to enter. The same weekend our local little mall had their annual model train show, which we of course attended, both days. This slideshow is for you big 4 year old boy!

Ear Tube Follow Up and Audiology

Most importantly, it was a good visit. In and out in 1 hour to ENT and audiology is a world record. Sophie's ears look good and the hearing test went well. The results are pretty much the same as in October. Her hearing is pretty good with a mild loss in the low pitches. Follow up in 6 months.

The trip, however, was another story. We got into town with a smelly engine and without a stroller with which to haul our stuff. While I took Soph to the appointments in a borrowed hippo shaped wagon from the hospital, Mark and Alexander found a shop within walking distance of SLCH. Appointments were done by 12:30 but the car hadn't been checked out yet. We spent the day between the 2nd floor entry way with the trains that are mounted around the perimeter of the ceiling and in the cafeteria.

We heard from the shop that the AC compressor was bad and they did not recommend trying to drive it home. If the belt broke, it would possibly cause serious damage to the engine and we would be stuck on the side of the road. Mark's dad concurred. They couldn't get to it until today, so we had to decide if we would be staying overnight or renting a car to get home. Staying would have meant rescheduling ST, the tub surround repair (major leak into the basement from the main floor) and Mark missing 3 classes. That and we had no supplies or Sophie's meds or extra food out for the cats. Thankfully, RK and Julie came to the rescue and drove in from St. Charles. We are borrowing RKs car and returning it, probably Wednesday, which meant that we were able to drive the 3 hours and be home last night. Thank you RK! On the way home, driving through the rain, Alexander had a potty accident and he ended up with a brand new pair of St. Louis Cardinals pjs. I was fully convinced that my water would break (as we're not technically supposed to be travelling out of town) and well, it would have fit the theme of the day.

I spent the day hysterically laughing to the point of tears, which is dangerous given my near full term pregnant status. The car could have broken down in the rain on our way, causing us to miss our appointment and stranding us, who-knows-where. It didn't. We thought the over due oil change may have been the problem and were planning to just get an oil change. Had we done that, instead of taking it to a shop, it would likely have broken down on the way home. Had we remembered the stroller, Sophie might not have had such a good nap in the cafeteria, in the bed we made for her in the hippo wagon. She doesn't nap well in the stroller. Had we left right away after the appointments, I would not have had the yummy onion rings that I love. As our little comedy of errors continued to develop, I couldn't help but see quite clearly how much worse it could have been.

2nd floor entry, trains

Cheesy post-nap grin

Alexander working hard on Noggin.com in cafeteria

You're Fired

When was the last time that such a thing was wonderful news? I'll tell you when. When we were told not to ever come back, when we crossed an 'ologist off of Sophie's list. When Sophie was born there were 3 findings regarding her heart including a small muscular VSD, PFO and small PDA. None of the findings required any action beyond monitoring. Last February, Sophie had a repeat echo cardiogram that revealed that she only had a small PDA. Yesterday she had another echo and I am overjoyed to announce that the small PDA has closed on its own and we no longer have need of a cardiologist! That's right. Dr. Heart fired us and we couldn't be happier.

Other health updates are that Sophie is working on tooth number 8, a lower left molar. Next week we travel back to St. Louis Children's Hospital for an appointment with her ENT and audiology. This time they plan to isolate her ears to find out how each one is hearing. We have also been worked into the schedule with opthomology. After Sophie's last check up, we were told to come back in a year. However, the eye that she had Strabismus surgery on has begun turning inward and upward slightly, once again. I already knew that it is not uncommon to need repeat Strabismus surgeries, but am hoping that won't be the case.

In archiving my videos recently, it struck me how much she has changed in her 19 months on Earth. She's no longer my little baby. She's getting bigger and doing more every day. This update is not meant to be a comparison or brag and it is not my wish to upset any other extra special moms who I know love her. I'm proud of Sophie's accomplishments and I know you are too, just as I am proud of the little ones I've come to know and love.

Sophie has added the word 'boo' to 'peek.' Her favorite words are Daddy, baby, and Bubba (Mom/Mama comes in much further down the list). She waves and says 'bye bye' consistently and in the right setting. She even shouts it if the person she's greeting is far away. She's a millisecond away from cruising and pulls to stand like a champ. She could set world records in speed crawling. She kisses with puckered lips and sound vs. her original open mouth slobbers. She makes car and train noises when playing with Alexander's toys. She's developed a giggle and sense of humor that's contagious. Sophie nurses once at night and I expect to wean her by the end of the month. Straw drinking was a long and wholly worthwhile learning experience and without her ST, I'd be tandem nursing! She's great at putting toys 'in' (even when its other things like Daddy's slipper 'in' the bathtub or a ball 'in' the toilet). She has a great attention span, even with new toys, and gets very focused and intense. She seems to understand questions, like "where's Daddy?" because she often points with her index finger (though not every time). She often complies to requests like, 'hand me the toy.' She loves books and anything her big brother likes. In fact, she thinks her brother is the coolest guy around. She's such a social butterfly and she draws people to her where ever she goes. She also has developed a little princess attitude when she doesn't get her way, though it's so cute, its hard to get mad when she's being a stinker. In a word, we think she's pretty great.

(blog note: in the new menu bar, the VIDEO and CONTACT sections have been updated)

Lunch with Santa on the Train

Know any kids who like trains? Yesterday we took a ride with Santa on a train and had a jolly old time. Lunch consisted of peanut butter and jelly sandwiches, sugar cookies, chips and Capri Sun juice packs. Mark and I got such a kick out of the squeezy silver juice containers that you puncture with a straw. Neither of us had had one since we were kids. The 'orange flavored juice blend drink' tastes the same as it did 100 years ago.

As for Alexander's tooth, well, it may be a 'black tooth' just like his daddy had as a kid. The x-ray showed that there wasn't a fracture to the tooth, but the dentist believes he had to have bumped it. Neither Mark, myself, or preschool can remember any such 'trauma' as it's called. Likely the tooth was bumped and caused damage to the nerve which died, turning grey. The only chance that it will lighten up and heal is if it was only a bruise-like injury. These can lighten up after about 6 months as blood flow to teeth is not good. We'll keep an eye out, especially for an abscess as that would require pulling the tooth, just like his daddy. Mark's little brother had a black tooth too. However, after going on a bike ride with his cousins and knocking 5 teeth out (including the black one), they didn't have to watch it anymore. Yikes!

Home Messy Home

There's nothing like sleeping in your own bed after being out of town. We got home very late last night after spending more than a week in good ole Iowa.

The trip in summary:
Waterloo: 5 nights. Urbandale: 1 night. Ankeney: 2 nights. Gas $ (don't want to think about that). We stayed with family, saw old friends and finally met new ones in person (Isabelle, Brigette, & Josie)! There were; 2 birthday parties (baked 40 cup cakes), 4 cook outs, gallons of sunscreen, mosquitos the size of Cessnas, a trip to Parkersburg and New Hartford to see the tornado damage, a trip to Iowa City/Coralville to visit with our college friend Amy and her gorgeous daughter Isabelle~who is already 2, a trip to Train Land train museum in Colfax, visit to the Cedar River (sand bags in Cedar Falls, broken train bridge in Waterloo), 2 malls, 2 pools, 1 trampoline (lots of bruises on Alexander), 3 serious potty/diaper - car seat issues (Alexander had 2, Sophie just 1). Good thing they are both easy seats to clean, yuck!, 1 set of lost keys (car and house), 2 bonfires, many s'mores, mojitos, and a bazillion pictures taken.

Today we have to unpack, clean up the cat messes (clumps of fur all over the carpet and a hairball on MY Bed/Blanket that I was too tired to do more than take off the bed last night). My Google Reader is Full. Yes, Iowa does have internet access so stop making jokes about not having electricity. They got electricity and running water at least 50 years ago people! Need to reschedule Sophie's ST and PT today as both kids have colds. Oh, and we're leaving again in a week for Tennessee.

More pictures to come. In the meantime, here is what the sky in Iowa looked like as we approached Waterloo. Ya, I took car photos of clouds. What?

Caboose Ride

When KATY CABOOSE rambled down the train tracks,

The engines were steamers with puffing smokestacks.

She was a caboose who disliked being last

With an endless black cloud of smoke rolling past

Katy had little hope she would ever get loose

Or ever be anything but a caboose.



"From now on," Katy promised, "I shall never complain.

"I'll be a happy caboose at the end of a train."

"The Caboose Who Got Loose" written and illustrated by Bill Peet

That Toddlin Town

Thursday we drove to Chicago for the BEST date night ever. We stayed at the Marriot Renaissance which was just across the street from the Chicago Theatre where M and I had tickets to see Eddie Izzard. It was a swank joint, the nicest place we've been as a family. It had a little something for everyone. M's mom joined us on the trip as our sitter. We all enjoyed a dip in the 4th floor pool (Sophie's first swim & she loved it), tangerine smoothies, & very nice digs on the 13th floor, plus it overlooked the El. The window in our room was huge and Alexander spent much of his time standing in it with his forehead pressed to the glass looking down on the trains. We were so close to the theatre that M and I didn't leave our room until 10 minutes before showtime. Eddie was amazing, of course.
We wrapped the night up near by at the Emerald Loop.
Best date night ever!

Meet Me in St. Louis Part 2

St. Louis Children's Hospital is really an amazing place. From the time you walk in the doors you are greeted with smiles. The security guard asks if he can help you find your way. Everyone is patient and they all seem to really care about the children and their families. Everywhere you look there are things to help take your mind off of the reason for your visit. On the outside of the building, there is a giant metal down spout shaped like an elephant's head whose trunk whisks the rain water away. The awning is a blue butterfly. Inside there are fish tanks, a magical ball machine, and colorful paintings on the walls, all done with the utmost attention to detail. A child's voice announces each floor in the elevators. Alexander's favorite place is the 2nd floor hallway where large model train tracks are hoisted around the perimeter of the ceiling encased in plexi glass. He's spent quite a bit of time there already chasing the 3 sets of trains that chug above his head.

On our first visit to Children's we saw 3 doctors and one therapist. Our time was spent in colorful office spaces and waiting rooms. The HD biopsy, however was a little different. For this visit Sophie was admitted and was fitted with a wrist band. We all needed name badges (Sophie's Mom, Sophie's Dad, Sophie's Brother). I expected to be taken into an office like the others we had been in. As Nurse Charlie escorted us, my heart stopped as a very, very premature baby was wheeled by in an incubator. My breath actually caught in my throat and I found myself choking up. I hadn't expected to see anything like that. I think I actually stopped walking for a second. Charlie gently touched my shoulder and whispered, "There but for the grace of God. Ok Mom, take a big breath in...now let it out. You've been there before haven't you?" Now Sophie wasn't that small when she was born, but she was in an incubator, naked, hooked up to tubes and beeping machines that look like fish finders.

To get to our room we passed by a busy nurses station (just like in our NICU) and saw lots of other children in beds with tubes and parents with worried looks and beeping fish finders (just like our NICU). I was surprised to feel so off kilter. It was a relief to get into our room and shut the door.

Nurse Charlie was lovely. She took her time explaining the procedure. She asked if we had any questions and let Sophie and I examine the instrument that they would be using to do the HD biopsy.

It looks complicated and scary, but only the silver part is inserted. The syringe-like part gets pulled back to create the suction and the trigger is pulled snipping off a small piece of tissue that has been sucked into the side of the silver part (hence the name, rectal suction biopsy).

Sophie's doctor was Australian and had a lovely accent and bedside manner. He took 3 samples and was done in a matter of moments. As the tissue is taken from an area that doesn't have pain receptors, Sophie barley fussed at all. We'll get the results in 7-10 days.

That night for dinner we visited Blueberry Hill in the Loop. M was in heaven as they had his favorite childhood pinball game "the Twilight Zone" AND Fat Tire on tap.
Alexander made lollipops out of cheddar cheese balls and then started eating the rest of his dinner with a toothpick.

On the way back to the car we popped into Vintage Vinyl Records and stepped back in time. M and I met in college while working for an independent record store. We both thought these stores had gone the way of the dinosaur and were so happy to find this place. As we perused the CDs encased in plastic shucks (those darn things broke many a fingernail back in the day) and records (as in actual vinyl - the only real way to listen to music) we were near giddy. The clerks with scenester clothes and bored expressions made me smile. There was even a live "performance" of local rap artist Ruka Puff promoting a mixed tape of St. Louis rappers. It was quite loud and the kids looked confused as to why we would be there. We figured a few minutes wouldn't do any real hearing damage. The best part was when M discovered a cash of Blowfly CDs. It wasn't just that they had at least 10 copies that cracked us up, but that they were filed next to Kids Corner CDs. {For those who are unaware, Blowfly's bio reads, "Before there was Kool Keith, Old Dirty Bastard or 2 Live Crew - before there was hip hop, for that matter - there was Blowfly, performing X-rated songs with a funky groove." I can't even list titles of his songs here. Goggle him, you'll see.} Only an independent store like this and the one we worked at stock this type of... art?

Alexander got a special treat as we came upon an old trolley car nearby which promptly became his favorite. M has decided that it would be amazing to get a job at Wash U just so he could shop at Vintage and stop by Blueberry Hill for the beer and games.

Then today was Sophie's pre-op appointment with opthomology.

Marlo retested her eyes and its true, her left eye is turning in a bit more than during our last visit (I thought so and should have trusted my Momologist instincts). But, she got even better measurements this time and we will proceed with Strabismus surgery on her left eye and nasal lacrimal tear duct surgery on both eyes on May 19th.

All things considered, it was not a bad trip.

The train gene

Today we went to our 2nd model train show. We are convinced that Alexander get's his love of trains from his daddy. I've never heard of a train gene, but if it exists, I'm sure Alexander has it.