Wednesday, September 30, 2009


Chair or mecha-droid? 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.

Convaid push chair Trying a new stander

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. A lot of people and one little boy 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.

Saturday, September 12, 2009

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.

Gift from Aunt Caitlin Birthday balloon
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.

Reading with Grandparents
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 and Dad A doll for Ollie
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.

Making a wish A taste of cake - yuck!

Friday, September 11, 2009

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!

Birthday boy: Oliver turns two!