Sharing the comfort by which we have been comforted and the helpful hints by which we have met the uncommon needs of our family.
Welcome!
My hope is that there will be some resources here for families with special needs. Instead of reinventing the wheel, I have included resources that point to other resources. The posts here are simply reporting some of the things we have tried to make our daughter's experience more comfortable and productive. Please add any experience you have to help us and others help our children.
Topics
- Augmentative Communication (2)
- End of Life (5)
- Equipment (18)
- Feeding Pump (5)
- Feeding tube (3)
- GI (2)
- Medications (5)
- Reflux (1)
- Seizures (1)
- Vision (1)
Sunday, July 27, 2008
Special Needs Bike Trailer
Monday, July 14, 2008
Wheelchair Lift
We have a wheelchair lift and the process of shopping and deciding on a lift can be frustrating. We spoke with several providers and many were difficult to deal with. We finally went with Classic Coach in Spartanburg, SC because Joe there was great to work with and was a great listener. He is very familiar with different equipment options and is a good educator. When searching for a provider, it is good to find someone who has a hands-on familiarity with the different equipment and what is possible in different vehicle types.
In our case we found a 2000 Dodge Ram conversion van with the high roof. We wanted the ability to have Macayla sit in the middle section of the van behind the driver seat and still leave room to sit in the captains chair in the middle section on the passenger side. This meant we had to have a rear-entry lift. We have found this to be very helpful in parking as handicap parking is usually hard to find. With the rear entry we can park in a normal space and still unload. The drawback is packing for trips. The only open space in the van for packing is the rear section, but that impedes loading and unloading Macayla on long trips. We removed the original bench seat in the rear of the van, but Joe at Classic Coach installed a special, two-person fold-away seat in the rear section. It gives extra seating when necessary, but folds out of the way the rest of the time.
We have a Braun Millennium Series lift that has a solid platform and folds up into the back door of the van (they are barn-door style). This is a fairly simple lift and has worked well. We have only had one problem with it when a hydraulic hose leaked. Other than that it has held up well for the last two years. A friend of ours has a side-entry lift that folds out of the way of the door after it folds up into position. It is nice because others can still access the van through the side door when the lift is stowed. Our lift blocks the entire rear door in the stowed position. However, our friend's lift is a bit more complicated and has had a few frustrating glitches with all of its safety features. They also must park somewhere that has enough space on the side of the van for loading and unloading. There are obvious trade-offs for different lifts and designs, but when you have a good provider who can help educate and brainstorm through the decision-making process. The Classic Coach website has some great pictures of different options and it has links to three major lift companies that are worth checking out.
Friday, July 11, 2008
Apnea Monitor
Since Macayla started having grand mal seizures that stopped her breathing, we started using an apnea monitor. It measures heart and respiratory rates through two (sometimes three) leads that attach to Macayla's torso. If her rates go too high or low, it will alarm. So far, we have found that most of the alarms are false, but they are not too frequent as long as we hook her up correctly. The most frequent false alarm has been a "loose connection" when she manages to rub one of the leads off. There is a soft, velcro belt that goes around her chest where the leads are and that helps keep them in place. Macayla is still squirmy enough to rub the leads off. It has alarmed a couple of times for apnea and low heart rate, but nothing was wrong. Her heart rate drops during deep sleep sometimes and this morning a yawn set off the apnea alarm.
Another option we considered was a pulse/ox monitor where the lead is attached to a finger, toe or even around the foot. It measures their pulse and oxygen saturation. If either gets out of range, it will alarm. Macayla moves her feet and hands too much for one of those to work at night, and we question if we could get a good reading on her considering the poor circulation in her hands and feet. Overall, we have been pleased and even relieved by the apnea monitor. It allows us to leave Macayla in her room knowing that if a seizure starts we will be aware of it. So far it has provided peace of mind and only a few false alarms.
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