Cathy is slowly getting into a rhythm with all the new asthma stuff. Maria of course is not happy about the face mask or the nose spray and it’s sometimes a struggle to get her to take it. Cathy has had to wrap her in a blanket to get her to stop struggling sometimes. It’s a tough balancing act similar to what we faced with her seizure medicine. We want to give her some measure of control although obviously not to the extent she doesn’t take the medicine. Letting her make some decisions helps make the experience less miserable plus is part of that wacky “people with disabilities are human beings who have rights” idea. Using the ReliaDose to give her the seizure medicine means that she can stop sucking and take a break. She still has to get all the medicine but at least she has some control.
It’s a bit harder with the mask. We have to keep the mask tight against her face through the entire treatment which lasts six breaths. If she turns her head or pushes the mask away, the seal breaks and the medicine gets out. However the harder we force her the harder she fights. I think that once we all get used to it things will go more smoothly, just like the other meds, but it’s not fun in the short term.
However it’s not all bad news. The state has approved habilitation care and an augcom device for Maria. Habilitation means teaching someone a new life skill, not to be confused with rehabilitation which is the re-teaching of a lost life skill. We do habilitation with her all the time, teaching her something as simple as pulling her shirt over her head, and it wasn’t until a year or so ago we realized that that was a payable benefit. Sue has been trained as the habilitation person though they are still working out the bureaucratic nitpicks like setting goals.
The augcom (augmentative communication) device, as you may remember, is a device that helps Maria talk to us by pushing buttons. She will be evaluated next Friday at home to see which augcom device would suit her. They range from a single large button that can play a sound or activate a toy to dynamic computer touch screens that can have hundreds of commands. Obviously the latter would be too complicated for Maria but they will try to find a device that fits her needs, her abilities and her likes and dislikes. For example she loves music and responds to it so we want a device we can add short clips of music to so she’ll have the eat song, the bath song, the milk song and so on. I have no idea how we’ll choose the right music but will figure something out.
Finally, we had another one of those moments where we take pleasure in odd things about Maria. Today I was pleased to see Maria was scared of getting pinched by the buckle on the helmet strap at hippotherapy. Why? She has never been pinched by that buckle but she has occasionally been pinched by the one in the car seat if we aren’t careful, though not for several weeks. The fact she was scared of it means two important things. One, she is anticipating an event that happened weeks ago rather than forgetting it as soon as it has happened. More important, she is associating an event on the seat belt buckle to an event on the helmet strap buckle. The fact she can recognize that two completely separate objects have something like the risk of pinching in common is a HUGE cognitive development step. So although it sounds bizarre, we are very excited that Maria was afraid of getting hurt.
I was reading about Maria and wanted to let you know she is in our thoughts and prayers. Our company is the one that makes ReliaDose, which was invented by a mom whose son wouldn’t take his medicine.
Please let us know if there is anything we can provide you to help out, such an accessory pack for ReliaDose (additional syringes, etc.).
Take Care,
Dreama Kirby
Chief Marketing Officer
Thanks for your thoughts. We love ReliaDose and tell everyone (therapists, doctors, parents) about it. The only change I’d love to see is the option of faster flow nipples for kids with swallowing problems. Other than that, it’s been an absolute lifesaver.