Merry Christmas!

Here's wishing everyone a very merry Christmas, and a happy holiday season!

Fun with charts

We don't talk much (on the blog, at least) about our daily battle with Oliver's reflux. So, how much has Oliver been throwing up lately? We decided to feed our very detailed records into my scientific plotting package and see what came out.

The pictures tell the story... The tiny circles represent small spit-ups, while the largest circles represent more than Oliver's full feed volume coming right back out. (The fine print: Internal reflux and episodes of churning and heaving where nothing comes out are not recorded here. And we've grouped vomit times into five bins: early morning, post-breakfast, post-lunch, after-dinner, and late night.)

The regularity with which Ollie throws up after breakfast is pretty remarkable. Will the December chart tell a different story? Stay tuned for the next exciting episode of Fun With Charts!

Thanksgiving 2009

Thanksgiving is a very special holiday in the US, and it is the busiest travel period of the year, as people travel long distances to be with friends and family. This year we cooked dishes to share and got dressed up and traveled almost a full tenth of a mile down the road to Caitlin and Jamie's house for Thanksgiving dinner. It was a wonderful gathering, with eighteen of us around the table, including Eliza and Oliver, their older cousins, aunts and uncles and grandparents. Although Ollie joined us at the table, he didn't actually eat (of course). But after dinner, Meghan's cousin David treated him to some piano playing, and Ollie loved that.

Waterfalls and fall colors

As the bumper sticker says, "Ithaca is Gorges", and that's especially true in the fall. For a brief period of time the leaves are a spectacular mix of green and red and gold, the waterfalls are gushing, and the sunsets light up the evening in flaming colors. This year we managed to get out on a few local walks, and in spite of the unseasonable early snowfall, we enjoyed some lovely fall weather. Below, a handful of pictures from around Beebe Lake, Ithaca Falls, Taughannock Falls, and Stewart Park.

Halloween 2009

Last year Oliver was a (very cute!) pirate for Halloween, but it was a pretty quiet day for us since it isn't a big thing Down Under. But this year, in the US and with lots of cousins around, it was a much bigger event. Although we are patching Ollie's right eye even more now than a year ago (6 hours a day), I thought he should dress up as something different for Halloween. I thought about it, and finally had an idea. I found some red fleece pajamas in a box of hand-me-downs, and I bought some blue socks for his feet and hands. My mom helped to sew a fox snout and ears onto a red fleece hat we had, and made a red tail to match. Voila, the cutest Fox in Socks ever! (For those of you not familiar with Fox in Socks, he is a character from one of Oliver's favorite books by Dr. Seuss.)

I am not sure how much of the concept of Halloween Oliver grasped, but we had fun talking about it beforehand. I told him how children dress up in different costumes, and that he was going to be Fox in Socks. I explained how they go out and knock on neighbors doors and say "Trick or Treat" to get yummy candy that they like to eat. When I would ask him what he was going to be: a pirate? an elephant? a robot? he would shake his head No No No... until I asked, Fox in Socks? and then he'd give a big grin!


So in the evening I suited Ollie up (he didn't fuss too much, luckily!) and we went out Trick or Treating on our street with some of his cousins. I recorded "Trick or Treat" onto one of his talking buttons, so that he could say it himself. Some of the neighbors who are not familiar with Oliver's cerebral palsy probably thought it was weird, but I guess I have to get used to that, or at least try not let it bother me so much. It was both a fun and sad time for me, watching the kids running, playing, talking and collecting candy. I wished things were different for us, and especially missed Shami, who was away for the week at a meeting in England. But I did my best to put on a happy face, and I think Ollie had a fun experience. And he was an awfully cute Fox in Socks!

In the photo: Jeanine, Eliza, Sean, Devon, and Kieran in the back. Caitlin, Shannon, Oliver, and Mariah in front.

Homecoming Day Anniversary

Today is the two year anniversary of Oliver's discharge from the NICU in Sydney, the day we brought him home for the first time.

Unfortunately we marked the day with an early morning Ophthalmology appointment at the Children's Hospital in Rochester. After a long, mostly sleepless night with Oliver, we were pretty exhausted even before the 2+ hour drive there. But luckily the appointment went smoothly enough. The good news is that Ollie's eyes are improving slowly but steadily, and there is a small chance that he might not need surgery to align them after all. We'll have to keep patching his right eye for 6 hours a day, and go back for another exam in 3 months.

Autumn is a beautiful time of the year in central New York, and we enjoyed the vibrant fall colors while driving to Rochester and back. On the way back home we drove by Cayuga Lake and made a quick detour to see the breathtaking Taughannock Falls as a treat. We even managed to get a smile from Oliver!


It was all going well, and we were on track to get home well before Ollie's afternoon feed, when... we got a flat tire. We were only a few miles from home! Shami was a star and we were able to put the spare tire on, which was enough to get Shami to work, and Ollie home in time for his lunch. Thankfully, after the morning's excitement, the rest of the day was fairly quiet and laid back.

Snow!

Ithaca got an early start to the winter yesterday, and the light snow that began in the afternoon continued into the night. By 3 AM there was over an inch on the ground. (I know because I was up!) But despite two nights of little sleep with a sick boy and Shami away, seeing the beautiful peaceful snow outside in the morning lifted my spirits. Ollie and I looked out the window as we read "Snow", by P.D Eastman and Roy McKie. I also got a bowl full of snow for Ollie to put his hands in. Conclusion: it is cold and wet!

By noon it had melted away, though there is more snow in the forecast through Sunday. After a wet cool summer, it looks like we may be in for a long, cold, snowy winter. But it sure is pretty.

A brand new cousin

Speaking of cousins, we'd like to extend a long overdue 'welcome' to Oliver's new cousin, Dhimaan (also known as Marco Polo).

Oliver's Uncle Tuku and Aunt Uttara (or Tuku Kaku and Uttara Kaki in Bengali) had a little boy on August 28th. Thankfully everything went smoothly, and he and his mom are healthy and happy. Unfortunately for us, they live half way around the world in New Delhi, so I fear it will be a very long time before we get to meet the little guy.

But isn't he gorgeous!?!

Canadian cousins

We had a weekend visit from Oliver's uncle Ian, aunt Wei, and his cousins Eamonn and Molly. They live in Canada and we don't get to see them very often, so it was a lot of fun to have them stay with us.

It was especially nice for Wei to visit, as she hadn't seen Oliver since our visit to Ithaca from Sydney in June of 2008. Oliver took to her pretty quickly, and enjoyed dancing with her!

We had a belated 9th birthday party for Eamonn. Shami cooked a meal (with some help!) for 16 people... 18 including Eliza and Oliver. Everyone enjoyed the food and the chaos.


Pizza was on the menu the next night. Here is Oliver with his littlest girl cousins: Mariah, Eliza and Molly.

Where is the letter S?

Here's Oliver playing with Mum and showing off his letters.

Equipment

Today was a big day. Two people from a medical equipment company came down from Syracuse to deliver some pieces of adaptive equipment we've been waiting many, many months for: a specialized car seat, a gait trainer (walker), and a positioning push chair. They also brought two items for Oliver to try out before we place orders for them. So we still have to wait for a high-low positional chair, and a standing frame... Of course we need these two pieces now, and I am worried it will be many more months before we get them.

Ollie did amazingly well amidst a lot of commotion: two parents, two therapists, a nurse, and two men he'd never seen before, all trying to force him into contortions with strange new pieces of equipment. Luckily he was in a pretty good mood to start with, and we put on a Sesame Street video ("1 2 3, Count with Me", his current favorite) to distract him from the stress, which did the trick.

So far we have been using old loaner equipment, none of which is fitted correctly to him, and some of the items look like they are 20 or so years old. We're grateful to finally have some of our own stuff, and will wait anxiously for the chair and stander to come. But I'd just like to say that I hate the equipment. I hate that Ollie needs them, I hate how big they are, I hate how difficult they are to work with, I hate how ugly they are, I hate how expensive they are, I hate how many hoops we have to jump through to get them and how long it takes to get them, and I hate that I have to feel so grateful to have them. But they will help Oliver to be positioned correctly, help him to bear weight on his legs, and help us get around with him, and so I am grateful for them.

One other thing: I just don't understand why adaptive equipment has to look so horribly ugly and scary. Some of these things look like killer robot drones from Star Wars, ready to unfold and zap you. Ollie is a little boy, and he shouldn't have to use such awful looking stuff. I bet if Apple, for example, made this sort of equipment, they could make it look nice, fun, and maybe even inviting. Yes, there are constraints with all the ways these pieces need to fit together, but I am sure it could be done. In the meantime, we are stuck with a houseful of big, cumbersome, scary looking things that cost a fortune. The positioning stroller and the gait trainer cost almost 4,000 dollars each! Thank goodness our costs are covered by insurance and Early Intervention, at least for now.

Oliver's second birthday

On his birthday, we tried very hard to make sure that Oliver had a happy and relaxed day. We gave him a break from therapy appointments and even a day off from his daily eye-patching. We set up a birthday table for him, with a bright and cheerful home-made toucan sign (since he is 2!), a birthday balloon, and of course gifts. Luckily, Ollie was in a pretty good mood for most of the day.

Aunt Caitlin stopped by for an early morning visit to wish Ollie a Happy Birthday.
Ollie even played with his birthday balloon for a bit.

Ollie's grandparents stopped by and he enjoyed reading some books with them.

In the evening we had a big family gathering, with pizza and salad. Ollie was a little overwhelmed by it all at first, but did settle down eventually. Then, we opened some gifts.


Unfortunately it wasn't a vomit-free day (is it ever?) so we had a quick wardrobe change. But Ollie looked just as cute in this Indian tunic as he did in his red shirt from FabIndia... Thanks Uttara Kaki and Tuku Kaku!

Ollie got so many things: books, pajamas, dvds; and from Aunt Caitlin, Uncle Jamie and his cousins he got a little doll that looks just like him (well, almost). We named him Davy.

We thought that you shouldn't have a birthday without a birthday cake, even if you couldn't eat it. Ollie actually loved it when the whole big group started singing 'Happy Birthday To You', all at once! I helped him make a wish, and then gave him a little taste of icing. Blech! All in all, it went as well as could be expected. Now on to another year.

Two years

Oliver is two years old today.

Happy Birthday - it's such a sweet and simple sentiment. One that most people can take for granted. I will say the words, and accept them from others with a smile, for the love and good thoughts they wish to convey. But for us, today, the words ring hollow. I will smile, we will give gifts, take pictures, and even have a cake. But I cannot forget that it is the anniversary of a terrible day. It is not a day my heart can celebrate. I thought it might be a little easier to bear this year, but it is not.

It has been a very long hard year, leaving many of our hopes and aspirations for Oliver's development unfulfilled. Among other things, Oliver still cannot roll over, sit, eat or use his arms and hands to play with toys. He cannot hug me, hold my hand or say "mama". He still vomits every day (and sometimes at night), and Shami and I get very, very little sleep. Grief still tears my heart apart each and every day. And the work and exhaustion of caring for Oliver is getting harder and harder as he grows into a boy.

But along with the unrelenting stress and sadness, this past year has brought us many positive changes, accomplishments and even moments of joy. We moved back to Ithaca, and Oliver has adapted to a new country, new people, and a rigorous schedule of therapy sessions. Oliver works very hard at everything, and he has made progress. In the right mood he'll take a spoon with a drop of water on it. Although he cannot roll all the way over, he can roll onto his side, especially if you tell him you'll scratch his back if he does! He holds his head up a little better, and much to our surprise he enjoys "walking" in a borrowed gait trainer. Although he cannot talk, he understands much of what we say, and he is learning to shake his head to say "no". For some months now he has known his shapes, colors and best of all he knows all 26 letters of the alphabet. But most importantly he is a sweet little boy with a wonderful spirit. He laughs a little more now, and it warms our hearts to see his adorable dimple when he is happy. I am proud of him, and grateful for what progress there has been. Yet I will always, always want more. I will always wonder about what he would be doing, the things he would be saying, and the life we would be leading if all had gone well.

The next year will undoubtedly bring us ups and downs, struggles, successes, and heartbreaks. Hopefully we'll be able to share pictures and stories, and keep you apprised of Oliver's progress and accomplishments more regularly this year. But for now, take a look at this handsome, happy two year old!

Ithaca bound

Moving house is always difficult. Managing an overseas move while caring for Oliver, with all his special needs, seemed next to impossible. As much as we hated the idea, Shami and I decided that it made sense for me and Oliver to return to Ithaca ahead of him. I'd get a head start on settling in, paper work, medical care, and getting services for Oliver up and running. Shami would stay behind to tie up loose ends in Australia, not the least of which was emptying our place of two and a half years of stuff. He could manage much more easily without appliances or furniture (or an overnight feeding pump!) by himself than we could with Oliver.

But there was just no way I could travel alone with Ollie... the three of us barely survived our last trip to the US. This plan only became a real possibility because our good friend Fernando came to our rescue. Fernando had been observing at the Parkes telescope, and he was returning to New York City at roughly the same time. He offered to rearrange his travel plans in order to escort me and Oliver from Rozelle to Ithaca, door to door. It was a tremendous undertaking, and we are forever grateful to him. Chivalry is not dead!

It felt like a whirlwind, saying goodbye to people and places, and packing and planning. But before we knew it was time for us to leave. The task ahead was not made any easier by starting out on a 40 hour trip with only 2 hours of sleep. But we were off nonetheless.

The taxi was packed and waiting. Our friend and neighbor Abi and her son Felix saw us off.
Saying goodbye to Shami was very hard.

Shami spent as much time with Oliver as he could, and worried that Oliver would forget who he was.

Our United Airlines 747 taxis away from the gate. (Shami says: And in the foreground, the new Airbus A380 in Qantas colors.)

On the long flight from Sydney to LA we got lucky with bulkhead seats and a bassinet. Oliver barely fit, but I made a little nest for him, and to my relief he was actually able to sleep off and on for a portion of the flight, giving our arms a bit of a rest. And finally, we made it to California!

Our flight out of LA wasn't until evening, so we booked into a hotel room to regroup, clean up, wash feeding tubes, and rest as best as we could.

Fernando, Bag Rambo! Don't mess with him, he'll carry all your bags whether you like it or not!
Oliver enjoyed spreading out and watching his favorite Wiggles DVD.

We had two more flights to go. From LA to Philadelphia, and then on to Ithaca. It was not easy... and I won't even go into the problems we encountered with the airlines losing our luggage in LA. I kept reminding myself that every minute that passed brought us one minute closer to Ithaca. And finally we arrived!

Ithaca was very COLD. When we stepped off the plane onto the tarmac the temperature was 7°F (-14°C), and the wind whipped icy snow in our faces. But it felt so good to be home, I didn't mind.

It was wonderful to have my family greet us at the airport.

Ollie on the drive home, looking out at the snow and wondering what happened to the sun and the Iron Cove Bridge.

Ollie and Mum in front of our new house, "The Garage Mahal."
And finally, Ollie asleep in his new crib. What a long trip...