The Last

Sorry this took awhile to post. I've had a rough last 6 months due to my own health problems and I was hoping and waiting for them to go away....planning to post about Gus at that time. Unfortunately, the problems are not leaving any time soon and I am unable to continue this blog. Thank you for your prayers and support for Gus. He is still doing well.

Gus has been recovering very well from hip surgery. Unfortunately, he has been also losing weight steadily over the past spring and summer. We kept adding calories to his food, hoping that it might add some weight to him but no matter what we did, he would eat less of rich foods. The result was weight loss.

To make sure that Gus was able to handle drinking thin liquids, his doctor recommended a swallow study. They take several months to schedule but it finally happened a couple of weeks ago. The results of the study was that Gus could barely eat enough to maintain his nutritional needs, let alone drink anything. He had been able to handle eating all of his food before (last winter), but he can't do that now.

We like to theorize over and over about what happened, why, and what we could have done differently.... One of the possible reasons for this was that when Gus started to lose weight, he also started the intense therapy program which was very physically demanding (although he did enjoy it). At the same time, his diet changed with many of the calorie-heavy foods taken out. We guess that Gus was probably too tired to maintain the energy he needs to eat and was hungrier than we realized. As a mom, that was a little disturbing to me.

And so....I met with a nutritionist at the local hospital. We are now making our own formula at home and Gus gets most of his nutritional needs through his g-button again. Thankfully, he stills loves the taste of food so we feed him 3 meals a day, but it doesn't add up to much. He's already gained .4 pounds!

As everyone knows, anyone is happier with a full stomach. Since we have begun this, Gus has rarely complained, had more energy, and sleeps like a log....which makes me happy....which makes everyone happy.

One more note....we've stopped the intense therapy from the Institutes for the Achievement of Human Potential (out of Philadelphia) because the help we had to do it is no longer available.

I gave up for the hips to fit into the wheelchair and took the sides off the wheelchair instead. He fits great now. He loves being in his wheelchair now thanks to the surgery. He has no problems sitting and seems completely comfortable. We get to start full therapies in a couple of weeks. Thank you for praying.

quick update - Gus is doing much better. He is now moving on the floor happy to get his toys. The swelling is much less so tomorrow I think he'll fit in his wheelchair! I'll take him for a walk if he fits in. thank you for your prayers!

We are home. Thank you for praying. Gus' pain is under control and he is content to be home. The turning point was yesterday, when the pain medications were delivered on a better schedule. We are keeping them up here at home. Again, thanks for praying.