May miscellany

Still playing catch-up, so here are some snippets from May. Ollie went to the dentist for the first time this May. There wasn't much good news from the visit, but Dr. Joe was very nice, even making special accommodations to see us off-hours. Ollie produced the expected wailing, gagging and retching, but miraculously he didn't actually vomit on the guy! Pretty much the only fun part of that visit was seeing this cute calf. Dr. Joe grew up on a dairy farm, and raises orphaned calves as a hobby. We got to meet this little girl, who was only weeks old.

It may seem silly, but one of the best things to happen this May was getting this new Childrite seat for Ollie. I was at my wits end and finally found this chair on-line, and bought it on a whim. It has been wonderful. No, it doesn't hold Oliver in the best position for his spine, hips or neck, and he pushes back in it with his feet, but he loves it, and so do I. We use it every day. I don't need to worry about straps and adjustments, I can just plop him in. Here he is in his new "Pumpkin Chair" as we call it, enjoying a book with his grandmother.

May is birthday season in my family, with Shannon, Shami, Jamie, Sean and me all having birthdays. This year we added one more when Jeanine and Sean had their second child, a little boy named Finnegan, on May 5th, sharing a birthday with Shami. Sigh. I don't much care for my birthdays anymore, but at least I get to make a wish… if only one day something would come of them.

Shami's birthday cake, and Ollie meeting Finnegan for the first time.

Lots of other things kept us busy in May, including doctors visits, more meetings with the school district, and sessions with Ollie's OT and PT looking at and trying out old dusty equipment that he might use in school next year. But we also had some fun, including visits from friends, a pleasant walk in the Cornell Gardens, a morning at the Farmer's Market, and a stop at this old train downtown, owned by a local bank. I think Ollie rather enjoyed seeing a train up close, and stepping up onto it with his dad.

I also took Ollie to the local science museum for the first time. It is an amazing place, and I looked around and absorbed all the incredible things there were for able-bodied children to do. I watched the enthusiastic kids running around, and eyed the parents busy attending to their kids and socializing with one another. I listened to all the chatter and excitement. Ollie and I would have had fun there, if our lives were different. But there were few options for Oliver to enjoy. Even most of the table-top activities were set-up in a way that wasn't wheelchair (or stroller) accessible. We did find this "Invisible Orchestra" where a camera would catch Ollie's movement and play music when he moved his arms or legs across a virtual keyboard. I took him out of his stroller, and laid him right on the mat, and let him wiggle around. I think it was fun for him to get that musical feedback from his movements.

April happenings

April was full of small happenings, including Nainai's birthday, a baby shower for Sean and Jeanine, an open house at the vet school, and more. And we had the occasional visit from Mariah, who walked down the street to play with Ollie. But it was a special treat when Kieran stopped by one day, and read a book to Oliver and Mariah.

In April the Cornell vet school had their annual open house. Ollie got to see all sorts of animals, big and small, scaly and furry. Don't miss the photo of Ollie Oinker and his dad ShaMoooo!

My friend Alex visited us for a weekend. Oliver loves her because she is really good at singing the A-B-C song! We had a nice stroll through the Cornell flower gardens with her. That was also the weekend we threw a baby shower for Sean and Jeanine.

We also celebrated my mom's birthday in April. Would you ever guess this birthday girl turned 81? She was hitting the balls out of the park!


Here she is getting ready to blow out the candles, and here is Ollie chillin' with his grandfather, since neither of them wanted any cake...

Finally, here's Ollie spending some quality time with Elmo, Grover, and his doll Davy.

Easter 2010

In April Oliver's Uncle Ian, and his cousins Eamonn and Molly drove down from Canada for Easter. Easter weekend was unusually warm, and we all spent a lot of time outside enjoying the mild weather. This was one of the first times Ollie had been on the swing since the snow melted, and he was loving it. Higher! Faster! More!

We had a belated birthday celebration for Molly, who turned six in March. Here she is with cousin Mariah. And here are a few Easter eggs I decorated.

On Easter Sunday there were several egg hunts. First we had one for the kids at Caitlin and Jamie's house. Then the kids had fun hiding eggs for the adults. And finally we "hid" eggs at our house especially for Eliza and Oliver. We put Ollie in his gait trainer, and we even got him to hold on to his Easter basket just long enough for me to snap a couple of cute pictures.

Oliver's uncle Sean is very much a tech gadget early-adopter kind of guy. He had pre-ordered an Apple iPad and was one of the first to get his hands on one. Here he is showing it off… and I have to admit, it was a beautiful thing to hold and use. We think we want to get one for Oliver, and are thinking of buying this one off of him when he upgrades - any day now!

March outings

We had a hard start to the new year, and by the end of February I was feeling raw with grief. So in March we tried extra hard to get out of the house and go on some outings to get our minds off of things.

In early March, Mariah accompanied us to Cornell's Lab of Ornithology. It is always a nice place to go, no matter the season. The snow was still pretty deep in early March: it comes up to the seat level of the wooden bench. But on this day the weather was mild, and it felt good to be out in the fresh air.

The lab had an exhibit of paintings featuring endangered birds, and one of the paintings (the small blue heron) was by Oliver's former physical therapist.

We also made a trip to our excellent local library. It was Oliver's first trip to a library. He got his very own library card, and we checked out an assortment of books and music CDs for him. Oliver was momentarily distracted by some books on dinosaurs, but over all he was not very impressed. Hopefully he'll have more fun next time.

We've been reading to Oliver about dinosaurs lately. One of his favorite words right now is "paleontologist." So we thought it would be fun to go to the nearby Museum of the Earth. We elicited a few smiles from him, but he was a bit too young for most of it.

At the end of March we met Sean and Eliza at the Cayuga Nature Center. It is an old building, and not wheelchair accessible, which made me unhappy. For now we could carry the stroller up stairs, but I don't think this is a place we will be able to take Oliver to in the future unless they follow through with plans to make it more accessible.

The day was a lot colder than we realized, and we had to borrow a jacket from Eliza to keep Oliver warm. Ollie was confident enough to be seen in pink! Here is a picture of uncle Sean helping to hold him up, stroller and all, so that he could look at a snake.

Watching the Winter Olympics

Not only does Oliver enjoy swinging and spinning, he also enjoys watching other people dance and spin and twirl. Here's a short clip that Meghan caught on camera: Oliver is enjoying a snowboarder's fancy tricks in the air during the Winter Olympics.

Oliver goes sledding

We've had a lovely snowy winter in Ithaca. At the end of December, there was just enough snow on the ground for some very tame sledding. We thought Oliver should enjoy some winter fun, and experience his first sled ride.


Ollie was unhappy being zipped into his snowsuit. He cried so much that we almost aborted the mission, but we persisted. We trekked over to Caitlin and Jamie's house, grabbed a sled, and headed to the top of their tiny hill. Caitlin, Mariah, Shannon and Kieran all came out to join us. Ollie seemed skeptical, but tolerant of the situation. I sat him in front of me on the sled, counted to three, and down we went.

At the end of the ride, Ollie was pretty expressionless, but when I asked him if he liked it and wanted to go again, he gave a smile. A small smile, but a smile nonetheless! We ended up having quite a few rides, and it was good fun until a little snow made its way down his collar. Then it wasn't so fun any more, but who can blame him? All in all, we'll count his first sledding experience a success.

Unpleasant surprises

January and February have been hard months for us. We have had way too much paperwork to deal with, and encountered a variety of frustrating pitfalls trying to get Oliver what he needs. We've had our hands full with doctor's appointments, therapy sessions, snowstorms, last-minute cancellations, and a miscellaneous assortment of other appointments and obligations. We also had some out-of-the-ordinary heartaches, which I am finding it particularly difficult to rise above. We've been sick off and on as well. When Oliver is sick he struggles more than usual with his breathing and swallowing. This of course leads to more reflux, more vomiting, and even less sleep, making it all the more difficult for a brave little boy and his tired parents.

Here are a few of pictures from a couple of unpleasant surprises we had. As if we didn't have enough going on, in January we discovered that Oliver is allergic to peanuts. After a teeny tiny "taste" on his lip during speech/feeding therapy, his mouth started swelling up almost immediately. I rushed him to the doctor and thankfully all we needed was a dose of Benadryl. But this is serious, and the next time we may not be so lucky. Not good, and of course this happened when Shami was away at a conference.

In February Oliver's g-tube button came out again. The water-filled balloon that holds it inside his stomach sprung a leak, and the whole thing came right out. Although it has never been easy, Shami and I have replaced the button ourselves in the past. But Oliver's stoma has grown a bit of a lip, making it more difficult, and we struggled fruitlessly to get the new button in. We tried again and again, while Oliver got more and more upset. If the button isn't replaced quickly enough (within 2 hours) the stoma begins to close up, and surgery may be required. So at 7:00 on a Sunday morning we had to call on our gallant brother-in-law Dr. Jamie. Thankfully Jamie was home, and came to save the day. We were grateful to avoid a trip to the emergency room. Once the button was in Ollie calmed down. Other than the site being a little sore he seemed just fine, so we were able to give him his morning tube feed.

One year in Ithaca

It is amazing how one (long) airplane ride can bring about so much change. It has been one year since Oliver and I came home to Ithaca to stay. Shami and I have never once second-guessed our decision to move back. It was the right thing to do for many reasons. It has been a long year, with many good times and many heartbreaking lows and frustrations. Although we miss our friends and many other things back in Sydney, there is no substitute for being close to family when times are hard, and Oliver is receiving amazing therapy here.

I keep thinking I'd like to post more to the blog, but then life can be so indescribably hard. It is one thing to write and read "every day is a struggle," and another to live it day after day, night after long, long night.

Hopefully we'll have some pictures of our recent adventures on here soon to share with you! And so we start our second year back in the US.

Oliver playing with his cousin Mariah