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.

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.

next

I said I would try to fill you in on the rest of the details and so I'll try now. We are kinda busy with all of this and the nights are late, the mornings are early. The daily discipline is really good for all of us, especially Gus. The benefits outweigh any effort we put into it. His improvements are the encouragement we need to keep going. Here are the things we are doing daily:

1.Masking
We've started a breathing program called masking. We all tend to be a little skeptical in our home, after all that we've heard and seen and it was no different with this program. Masking was the easiest part of the program to do. Every 7 minutes throughout the day, for about a total of 50 times a day, we have Gus breath into a mask for 45 seconds. Doing this improves Gus' ability to breath and therefor get more oxygen to the brain. After two weeks of his masking, his circulation was fantastic. He always had purplish hands, feet, and legs but now, we see no discoloration except slightly on his feet during cooler days. We also notice that his ability to respond has quickened.

One observation made during that week to the Institutes was that Gus yawned a lot. It's not something we've ever paid attention to, we just thought he was always tired. Well, that too has almost disappeared. He now yawns very occasionally which is great because putting him to bed takes less effort and time - he just gets tired and sleeps. Sleeping is also better - his breathing his deeper and quieter throughout the night. (I wake up at all of the noisy breathing so I sleep better now, too.)

2.Choice Board
We were introduced to the concept of a choice board for communication with Gus. We have been very frustrated (both Gus and all of us) with the lack of understanding between us. My mom witnessed this while we visited them last fall. During meal times, we would ask Gus if he was all done. We would say, "Gus, if you are all done, look at the napkin. If you want some more, look at the spoon." Unfortunately, this method relied on ability to not just look at an item, but to make sure that we understood that he was looking at it. We also were trying to encourage him to touch the item. We had been doing this for the past year or so and he started last fall to cry each time we asked. We would just stop feeding him and he had no real way to tell us he was still hungry. Gus' vision relies a lot on peripheral so we are not always sure that he sees something. Really, this method was very difficult for Gus and we didn't realize it.

The choice board is simple: a large X with 'yes', 'no', and '? I don't know' written on three on the sections. I held him on lap when first presented with this idea. They instructed me to gently support his hand, move his hand and tell him where the 'yes', 'no', or '? I don't know' was, and then to ask a question and wait for his answer. It requires no vision and only the minutest movement for us to know the answer. I sat holding him, not sure that I was able to communicate with my son, after so long of not being able to. I asked him, "Gussy, do you like to play with Molly?" He laughed and then took a couple of seconds of thinking before moving his hand to the 'yes'. I cried. It was the first answer I had from him since his accident. After that, we asked him everything! We wanted to know what food he liked, if his diaper needed changing, if he wanted to read a book, if he liked ... you name it, we asked it! I felt that more of my son was given back to me. His frustrated crying during meal times completely stopped and because we have a clear way to know what he wants, he is happier throughout the day. (And so are we.) The choice board is modified to fit any question we have: we simply tell him that the 'yes', 'no', or '? I don't know' is whatever the options are currently. It's amazing how well it works.

3. Hips
A major concern we've had with Gus, brought to our attention here, in Madison, is his hip. We didn't know that the right femur was 40% displaced until just a week before the visit out east. Looking at the x-ray, they were able to show us what we could do at home to help prevent the need for surgery. As soon as we came home, we implemented this part of the program, as well. Every day, 6 times a day, we stretch the tight inner thigh muscles, pull his leg into position, and use a special magnesium solution keep him loose. Currently, we are seeing consistent alignment with his legs and he scissors his legs less and less (that's when the legs cross over each other while straight).

4. Slide (aka inclined floor)
The program is a lot but the parts that the kids can help with, they love to do. He continues to go down his slide, 30 times a day. We are working him up to go a meter each time (on the flat floor), after the slide but right now he only goes about 20 inches. His movement on the flat floor with all of his toys has become faster and more purposeful. He also has started to move on carpet, not just on the slippery linoleum.

5. Patterning
We are patterning Gus 8 times a day, each time for 3 minutes. Patterning is when we place Gus on a foam bolster (to protect his hips) and show him how to move his legs and arms, as if to move along the floor. We have a few other movements that we do with him at those times as well.

6. Reading
These next couple of weeks are the weeks that we start the final part of the 6-month program: intellectual. We've already been doing part of this program by having black and white checkerboard walls with simple bright pictures (moveable). Now, we will be implementing the reading program. The next step is to start teaching him words (not expecting him to read out loud, just recognize them).

Thank you for your thoughts and prayers. We can tell the days that you are praying for us.

an intensive home program

The last time I updated this blog, we were taking Gus to an ABM practitioner in St. Louis. This monthly visit was worth its weight in gold. Gus improved each time and it made the other therapies worth the time and effort to go. Splints were needed less and less and Baclofen was decreased. We were happy with the progress and appreciated the insight that both ABM and Feldenkrais practitioners have shared with us. Their knowledge, kindness, and understanding put hope back into us. It was during this time that we found The Institutes for the Achievement of Human Potential, http://www.iahp.org/

Because of this, we are taking a radical change in our daily life: from the myriads of doctors' appointments, therapists, splint appointments, etc., to spending all day, every day doing therapy at home. Time in the car traveling from place to place is almost nothing now. Instead, we live by the timer, constantly set at 5 minutes to do the next thing. Everything we do is part of a program specifically designed for Gus. The program is incredibly intense.

We have learned so much from The Institutes that we'd like to share, but with time limited, I'll share a little bit:

The first big change for us was with food. The diet we had to start Gus on took a lot of adjustment: no dairy, wheat, soy, corn, bananas, tomatoes, rye, salt, processed fats or sugar. We started to change his diet last December, just after the course but now we have the exact amounts of protein, fat, and carbohydrates that he needs. The process is a little complicated with lots of diet sheets to fill out (especially for me who doesn't know how to count calories). He complained at us for the first few weeks but after that, he's had no problems eating his food. He doesn't even mind eating greens three times a day.


He is happy almost all of the time now. He loves this program and although it is a lot of work, we love the difference it makes for him.

Here are some pictures of Gus doing a lot of what he normally does everyday: