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.

Yesterday, Gus had his hip surgery - on both hips. It took over 6 hours of surgery. He is in a lot of pain. Last night was miserable for him. The irritation from the tube going down in to his lungs caused a lot of drainage/mucus and was very painful for him. He is at the hospital on continuous pain medications doubled and tripled up. We were trying everything last night for him, to help him sleep just a little. Please pray for him.

He is either crying or sleeping, but not sleeping much. He'll come home as soon as he can. Please pray that he heals quickly and that the pain goes away.

Seeing him pale again, hearing him cough the same 'lungs filled with liquid' cough, and looking at all the wires attached, really shook me up. I know he looked worse 3 years ago, but it was hard to remember that at first. Thank you for your support and prayers.

I'll let you know when he comes home.

For the past four months, we've lived by the timer. 5 minutes, 2 minutes, 30 minutes, depending on what the activity was, we would regularly set the timer and move to the next thing. It was fairly intense but we got into the rhythm of it and it became second nature.

A large part of what I did concerned Gus' hips. The right hip was on its way out and I worked with the inner thigh muscles to try to stop this process. Unfortunately, it didn't work: the right hip went completely out of socket. Now, we have the option of surgery. It is needless to say the bitter disappointment of this was hard to swallow. Loads of chocolate, ice cream, and other avoidables (that are much easier to swallow) were consumed to try to lift the mood, but of course, they didn't work.

Abruptly, our life by the timer stopped. He hasn't had the surgery yet, but the motivation to keep it up waned considerably. Once he has recovered, we will start at square one: reevaluate Gus' development and begin a new program designed for his current stage, whatever that might be at the time.

Currently, our home is quiet – if a home with 5 children can ever be quiet. Maybe just quieter. I can't say it is any less busier, just not ruled by the noise of a beeping timer but rather by the general noise of a mom directing traffic.

During this time of 'quiet' with Gus' schedule (from now until the surgery next week) it has been a fun to watch him play. He spends much of his time playing on the floor with his toys. Six months ago, Gus' muscle control was fairly limited – he couldn't get to his toys very well, let alone figure out different ways of getting them to his mouth.
He knows where his toys are and how to get to them. He quietly scoots around on the floor to the perfect position then gently rolls on to his back just landing him in the perfect place to play with his toys that hang. One of the greatest moments for me as a mom is to watch my kid play by themselves. He did not do this at all 6 months ago.

I also took this time to run some errands in town, taking Gus for the first time in a long time to a store. (His favorite person in the world, Aunt Deborah had just had an appendectomy so he couldn't stay home with her.) He always hated driving so the screaming, sweaty trip to anywhere was hardly worth it. Once in the store, if you didn't keep him constantly entertained, he would be noisy, and irritable. This time, I stepped into another world that hasn't existed for us yet. Gus was quiet in the car or laughing. He was relaxed in his wheelchair in the stores and very easy going in all of the situations.

And one other big thing that I should mention. Raw food. A couple of months ago Gus had blood work done again and it came back with imbalances. We had been feeding him using the diet restrictions and guidelines from the Institutes for the Achievement of Human Potential. The initial diet from them required an avoidance of dairy, wheat, soy, and a host of other normal food items including raw food. They included probiotics into the list of 'must haves', probably to offset the lack of raw food in his diet....but is that really sufficient? After the blood work results came back, I started him on homemade kefir, half a cup every night. We put cheese back into his diet and plenty of butter. After a couple of weeks of this, with of course lots of vegetables, beans and eggs, his belly is happier (less gas, indigestion, constipation, diarrhea, etc.). Before this diet change, Gus would get sick - not really sick, just tired and warm and not feeling well types of sickness, especially if I took him anywhere. Since this diet change, he isn't as prone to illness – even after the pre-op doctor's visit, the Milwaukee Museum of Art, parks and shopping.

As everyone knows that has a child or someone in the family with a brain-injury, if that person is unhappy, everything and everyone is miserable. With Gus being so happy, easy going, and pleasant, our home is currently 'quieter' and happier.

I'll let you know how surgery goes.