Saturday, August 2, 2014

Losing so much so quickly

The Facebook page has been doing such a great job of sharing Daniel's adventures that I've let the blog go I am sad to say. The recent Fox story on Daniel has brought his his joy to so many more. We have been sharing Daniel's adventures but I haven't done an update on Daniel's medical care in a few weeks. It seemed time.

The last time I wrote we were getting used to Daniel's feeding tube, but he was still eating a bit. Tonight brought home that eating is getting almost impossible for him. We were out to eat and Daniel, who still loves chips, genuinely choked for the first time. He had a hard time getting it up and again, for the first time, threw up because he was having such problems swallowing. Sadly, it's another food that he is unable to eat. I know chips were on the caution list but he loves them so much.....

Daniel entered hospice care last week with Gilchrist Kids. Doctors like to call it palliative care to ease parents fear of hospice and the brochure says it's for children with "life-limiting illness."  While we are far from accepting the future, we are not going to turn down a service that helps Daniel because of its connotations. Hospice has been to see Daniel several times already. He has a nurse on his team, a social worker, and a child life specialist. Everyone sadly works with many families in similar situations and they have a lot of good advice. They are acting as the coordinators for Daniel's many doctors in addition to making sure Daniel has all the meds and supplies he needs. The child life specialist even said that they are in contact with an organization that can make a personalized song for Daniel! They write lyrics about him and put it to any type of music he likes. We let her know that Daniel loves Call Me Maybe and Dynamite. I didn't realize until they pointed it out that Daniel has a preference for dance-pop.

Physically, Daniel has deteriorated even more rapidly than we expected even though we were warned. Daniel can barely sit up even when supported now. Everyday it seems we need to find a new way to assist Daniel to do things that were possible last week. He is having more problems with his fine motor control. Games and playing with toys is getting harder each day. It breaks my heart to see him struggle with things that used to be his strongest skills, like manipulating his tablet or playing with cars. A bright spot of the week was that we went to the park with his therapist rather than working with him at home. Daniel was way more willing to be physically active at the park.

This has all been heartbreaking but the worst has been how quickly Daniel has lost his speech. At diagnosis, Daniel could still clearly say about 40 to 60 words. He still has about 10 to 15 on a good day. Words that used to be clear are now slurred. When we tell him to say thank you or prompt him to say bye, it takes several seconds before he can process the request and speak - if he does at all. We are finding new ways to communicate with him. His speech therapist and an adaptive communication team with Frederick County schools is working with us on applications and ways to help him let us know what he wants. They will be delivering an iPad soon with apps picked out for him. We can upload pictures and create storyboards customized with his favorite things. We really hope that this is a tool we can use and change in the long-term to make it easier for him to engage with the world.

The summer is winding down and I feel like the clock is ticking to get done everything we want to do with him while he still have the physical skills to participate. Our schedule is so packed that I made plans for Daniel to go fishing with a friend for August 29th today - that's his first day free. Between doctors appointments, therapy visits, trips, and time with family and friends, Daniel is almost scheduled like a CEO or celebrity. Part of me is worried that we have so much planned. Most of me though is looking for some free time to take Daniel to Sesame Street and Diggerland USA before the good weather ends. The second week of October seems free...