| Sunday, November 4th Jake has infections in both great toes. That is probably why he has been feeling a little off these past few weeks. There was a mix-up (surprise) at the hospital over the orders and they didn't do a culture on Jake's urine so we don't know if he has a UTI or not. The doc's office said the urinalysis came back negative which supports a negative culture and sensitivity, but we won't know for sure unless they do another one. I don't think Terri's going to do that. When we first discovered the toe infections we tried to get an appointment with a local podiatrist. I guess it's 'welcome to the real world' because he wouldn't even consider accepting Jake as a patient. Know why? Because Jake's on Medicaid - State medical insurance. |
| We have also discovered that it is extremely difficult to find a dentist that will accept Medicaid. This is a sad, money-hungry world. But there are exceptions and we are fortunate enough to have found medical people who don't care about what insurance Jake has. |
| Jake has again broken his chair. The whole 'body' part of the chair is loose. When he calls National Seating he says, "Hi, this is Jake" and the woman asks "what is broken now?". We have tried to stress to Jake that he needs to pay attention to his equipment, and he has improved. I think it's partly an 'age' thing. He doesn't pay attention to details as well as an adult would. Yes I know he's an adult now, but he's really still a kid. |
| Word from the Courage Center is early January admittance. |
| Sunday, November 11th Jake's toe infections seem to be clearing up. Daily soaks in salt water, plus application of triple antibiotic ointment cream did the trick. We did NOT cut out the toes of all his shoes, as recommended by one health care official. Her reasoning was that when Jake has a spasm his feet move and must rub against his shoes. We buy his shoes one size larger than needed, plus we get a wide width shoe. (His feet are narrow). |
| Jake shaved himself on Tuesday! He was given a script that allowed him to attend an Occupational Therapy session at Froedtert. He was very proud of his shave job. He did fairly well. |
| His tummy tube was (finally) pulled on Friday. After he got home he was psyching himself out about the sounds and smells emanating from that hole. That is, until he discovered that his friends were grossed out about it. Then he started enjoying psyching out his friends. What a kid. :) The doc says that the hole should close up in 36 hours. |
| Sunday, November 18th Jake has an appointment to see the sci doc on Monday. The medication regimen that the doc wrote out for us is not working. This was a trial period - Terri would adjust the meds every 3 days and if the spasms didn't improve she would go to the next set of instructions. She has tried almost all the different variations that the doc prescribed and it is not working for Jake. He either becomes too sleepy or experiences too many spasms. We can't find a happy medium. |
| On Monday they are going to discuss the Baclafen pump. If this is what they decide on, it will mean another surgery for Jake. |
| He's had a 'bug' the last few days but seems to be better now. |
| Terri has been Jake's main caregiver since the accident. After he came home from the hospital she tried to get a caregiver to come in for daily a.m. cares but no one was available that would accept Medicaid. I have encouraged her to try again. It takes her 2-1/2 hours every morning to get both herself and Jake ready to leave. It is difficult to find someone who is available and will accept Medicaid but I think she is going to look into this again. |
| Word from the Courage Center is early January admittance. |
| Sunday, November 25th Jake was given an automatic toothbrush from his dentist, which I think was pretty nice of him. Jake has mastered a technique. Terri put a handle on it - a 'U' shaped piece of plastic - and Jake slips it over his hand. We supply him with 2 plastic cups - one for water supply, the other for spitting. We then squeeze some toothpaste onto his tongue. He starts the toothbrush with his chin, retrieves the toothpaste from his tongue, and spends 2 minutes on the lower teeth. He rests his arm for a couple of minutes, then the procedure is repeated for the upper teeth. The reason Jake thought about putting the paste on his tongue was because of his first attempt at brushing his teeth. He discovered that you can't put paste on the brush, then start it with your chin, and then put it in your mouth :), and Jake can't start it once it's in his mouth. |
| He is still having digestive problems. We are trying to figure out why. It started shortly after the tummy tube removal. He's stopped eating all fruits and fruit juices. We can't think of any new foods, drinks, meds, that would be causing these problems. We have decided that we need a GI doc referral. |
| We've had a visitor since Tuesday. Kris and Mark went to Kentucky over Thanksgiving to visit Mark's mom Dorothy, and they asked if we would dog-sit. Mollie is a small dog, very timid and frightened of everything. She was abused by a former owner. We were concerned that Jake's huge motor chair would send Mollie into hysterics but it didn't. They took to each other immediately. It wasn't unusual to walk into Jake's room and find Mollie sleeping on Jake's lap. |