Physical therapy
Joseph received passive range of motion exercises every day. Since his physical therapist only came once a week, we videotaped her doing all the exercises with Joseph. We could play the tape and watch and listen to the therapist while doing the exercises with Joseph and we were constantly reminded of the correct way to do the exercises.
We began to receive catalogs for children with special needs and we saw lots of mirrors, and at that time Joseph loved to look at himself and giggle. Rather than pay the price in the catalog, Joseph's Grandpa went to Walmart and bought an $8 mirror and nailed together a couple of pieces of wood to prop it up. Joseph loved looking at the baby in the mirror while he did his exercises.
The first device we used was a set of splints for Joseph's hands. Each one was just a piece of soft material that wrapped around Joseph's wrist and thumb. Once we got Joseph's thumb pulled out of the tight fist he made, the rest of his hand would relax and open.
We had orthotics made to support Joseph's feet and ankles. He always managed to squirm out of them, so they really weren't much help.
You can see a picture of Joseph in his stander on the "positioning devices" page.
Swallowing Therapy
A nurse that specialized in children and swallowing came to our house once a week. She first started coming when Joseph began eating less (7-8 months). At the time he was eating stage 2 jar baby food and baby cereal from a spoon and formula and juice by bottle. She introduced us to exercises which were mostly stroking the facial muscles. She also encouraged us to rub his gums, tongue and the insides of his cheeks to remind him of sensations and to encourage him to suck.
To get Joseph to eat more the nurse suggested making his food more "flavorful." She suggested things like putting ketchup in his cereal or pickle juice in his vegetables. She recommended trying juices that weren't sweet. After only a few days Joseph's favorite foods were oatmeal with ketchup, sweet potatoes with pickle juice, and sweet potatoe juice or carrot juice. We also added dry instant breakfast mix to Joseph's formula to increase the calories and nutritional value.
When Joseph was 11 months old he lost his ability to swallow. In the preceeding months we had to suction him more frequently, but the total loss of ability came rather quickly. One day Joseph started sucking on his bottle, then he coughed and sputtered then cried. We tried thickening liquids, different positions, etc., but nothing helped. By 2 days later Joseph had lost a visible amount of weight and he was dehydrated. He cried because he was hungry, he would suck and try to eat, but he could not swallow.
On September 7, 1997 a g-tube was placed in Joseph's stomach. The procedure went well and he had a very good recovery. We continued to give Joseph the opportunity to eat by mouth. At first he would eat a couple of spoonfuls of food, but that ability quickly disappeared. We would dip our finger in food and put it in his mouth while we poured formula into his stomach. Joseph sucked and chewed on our fingers and seemed to enjoy it.
The last months of his life red starburst candy was Joseph's favorite. If we put any other color starburst in his mouth he would just sit there or close his eyes. When we put a red one in his mouth his eyes would open wide and his tongue would start moving. We always had to suction the goo back out, but we could tell that he enjoyed it so we did it to the end.
Aquatic Therapy
Joseph always loved the water, but as he lost muscle tone it was harder to safely have him in the water. We were told that Hunter and CJ both benefitted from being in a jacuzzi or hot tub. Since we didn't have a lot of money to throw around we first went to Joseph's pediatrician and asked about aquatic therapy. He thought it was a good idea and sent us to a local place that handled such things. The physical therapist there tried a few different things, but basically Joseph just floated and she moved him closer to and then away from the jets in the pool. She had a couple of different floats/supports that helped a great deal, as you can see in the picture. When we came home after the first session Joseph took at 3 hour nap! That night he slept 7 consecutive hours -- a record for him. By 4:00 the next afternoon we had a hot tub in what used to be our TV room.
By the time we got the hot tub Joseph was having a difficult time controling his body temperature. The hot tub was kept at about 98 degrees F and we had a space heater on in the room so he wouldn't get chilled when he got out. The therapist recommended that the room temperature be within 10 degrees of the water temperature. We were always dripping with sweat by the time we got Joseph dressed.
We took Joseph in the hot tub almost nightly and he would always arch is back and try to throw his head back into the water. He slept much better after being in the tub and it helped us too :-)