Sunday, February 28, 2010

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.

Swollen lip 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.

Oops, no button Button back in

Thursday, February 04, 2010

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