Our Life with Milly
Milly’s aid supply 2018/2019
A visit to the Rehab fair in Karlsruhe is a must for us. Such a fair is a great opportunity to inform oneself about care and aids and to check and compare them on the spot.
This year Rehab was especially important, because Milly needs new aids due to her growing. So far she has been able to continue using all her old aids, just one size bigger. But even in this case the supply is not without problems. We had to object because the health insurance company rejected the therapy tricycle and the rehab buggy Swifty. Unfortunately, we were badly advised with the standing trainer. Milly had received the approval for a new model. However, this proved to be unsuitable and dangerous in everyday life due to Milly’s strong resistance when entering the aid. An application for a change of supply is now underway. This is very annoying because Milly should use her standing trainer twice a day and we cannot offer her training for weeks now.
Meanwhile Milly also needs a new wheelchair. The new wheelchair is very important to us. It is supposed to replace the rehab buggy in the future so that we don’t have to justify the double care to the health insurance all the time. But the new wheelchair needs considerably more functions for this. When providing medical aids, so many details have to be taken into account that we cannot discuss them in detail here.
Just two examples: With Milly’s current wheelchair, the Simba from Sorg, the anti-tipper hardly works at all. Due to the lack of accessibility in public spaces, however, we need it all the time. In public transport it must be able to be swung in and out again within a second, because otherwise we won’t be able to get on and off the bus and tram quickly with the wheelchair.
The seat unit must also be more comfortable. Milly can only stay in the Simba for a short time. This is good from a therapeutic point of view, because she has to straighten her upper body. But in the long run she does not succeed. Starting in autumn 2019, Milly will be attending school and will have to master a 45 – 60 minute ride in a wheelchair to school every day. With her current wheelchair she would be completely exhausted upon arrival. Since the new wheelchair will be used more and more in school, Milly also needs tilting for this reason, i.e. the backrest and footrest must be gradually adjustable.
At least when it comes to providing aids, one would have to be a prophet for a clinical picture like NBIA. We do not know how Milly’s illness will change. Should things arise that we did not yet know and could not take into account when applying for the aid, we were unlucky. With the new wheelchair we decided to consider Milly’s current health condition. Because the new wheelchair means more functions. But these have the disadvantage that it will be harder for Milly to drive the wheelchair by herself. Milly can drive it theoretically, but it is harder than with the old model. Since she is currently not interested in steering the wheelchair herself, we had to focus on all the other requirements.
But for the new wheelchair, too, we are preparing for an objection procedure, because the tilting function is not part of the standard equipment paid for by the health insurance companies. In other words, most health insurance companies do not take into account clinical pictures that could deteriorate. The service providers only pay fixed amounts, but the costs of the tilting function exceed these amounts. By the way, we chose the Swingbo model from Hoggi for the new wheelchair.
But Milly’s work on Tobii showed us that changes can occur within a few months and that she can acquire skills. The Tobii is a learning computer that is operated by eye control. On many levels Milly can play different games and train her cognitive abilities. You can also add videos or pictures from her everyday life. The Tobii gives her the opportunity to communicate via symbols and only with the help of her eyes. So much for the theory. Just three quarters of a year ago Milly wasn’t able to deal with Tobii. Since the beginning of the year Milly has been working with Tobii, symbol cards and gestures in kindergarten. Since then we have always said that Milly grows up in four languages, if you consider understanding the German language as a language.
Milly’s preschool teacher Anni asked us for an appointment in the kindergarten at the beginning of April. She wanted to show us how Milly uses Tobii. To be honest, Markus and I drove to the appointment without much expectation. Anni placed us in a dark corner so Milly wouldn’t be distracted by our presence. She turned on Tobii and Markus and I thought we didn’t see right. Milly played a game by eye alone and then told Anni that she was done. She picked up the corresponding symbol. From the start of school in autumn 2019, we therefore want to tackle the application for this great tool. We hope that Tobii will enable Milly to initiate communication with her environment.
A large project is still the necessary car conversion. We are currently using a special rehab car seat in our van. But Milly is gradually becoming too heavy to lift her from the buggy or wheelchair into the seat every time. Now we have found a Dutch make, the Rolpollo, which would safely lift Milly with a wheelchair through the side door into the car.
It took us a lot of research and appointments with car mechanics to find a solution to our problem. Since our trunk is often stuffed with Milly’s tools, wheelchair access to the rear is out of the question. That would have been the easiest solution. But we have to lift Milly from the side into the car. The lift would have to be placed under the van, which is not possible with our car. The alternative swivelling lift seat proved to be too unsafe and unsuitable for children, as the lifting load would remain the same. So we applied for a passenger hoist. But here you have to lift the support column in and out after every lift transfer. This costs time, space and lifting effort. Milly would also have to sit in the sling all the time, as it would be too cumbersome to place the sling under her all the time. That’s why we were thrilled when we discovered the Rolpollo at Rehab. It would be the ideal solution for our van. Now we are in the process of clarifying the installation possibilities and the financing.