Been awhile since I posted, so I thought I would do a general update:
Em is continuing to recover after her appendectomy. It still is up and down for her, but generally she is doing well. She still has a lot of stomach pain, particularly when she over does and her pain medication wears off. The Miralax is working very well and has addressed a lot of her issues and she truly wishes she had tried it sooner. [We recommend trying the Miralax in cold apple juice (not too sweet, not too sour) and letting it dissolve thoroughly!] Her appetite is still very poor and she still gets full after a few bites but I think we are seeing some small signs of improvement. Could just be wishful thinking though… The weight loss has slowed and she is hopefully going to start at least maintaining where she is.
Em started water therapy last week and did really well – except that we stupidly scheduled therapy two days in a row for the first week. Seemed like a good idea at the time, but it totally kicked her butt. However, she managed better than I expected and it was a pretty big accomplishment considering all she has been through. She did have a big increase in pain though after the second visit, so we will need to let them know so they don’t add in more in this next week. The therapists are ones she has worked with for the last few years, so they know her and she knows them. And, they are my husband’s co-workers/ friends, which helps my comfort level. At any rate, I think Em is going to really benefit from a few weeks of therapy -hopefully it gets her jumpstarted and feeling better and stronger. She is scheduled twice a week for the next 3 weeks and then we will see where to go from there.
We had a family event to go to this weekend and that is always a challenge for Em, especially after her back to back therapy sessions . It involved a 2 hour car trip each way and going to an outdoor party where it ended up raining and cold. But, it was for a very good cause and Em wouldn’t have stayed away for anything. Seeing friends and family (and having a couple slobbery dogs to love on) is almost always worth the expenditure of energy it takes and I think she enjoyed herself. She will pay for it for a few days but that is better than never doing anything fun.
We got registered for the EDNF Learning Conference, thanks to a ‘donation’ from my parents. With the conference being in Cincinnati, I hated to miss it but just couldn’t see how to afford it. My parents stepped in so we could go and we really appreciate it. Even Em wants to go – previously she has rejected any suggestion that she meet other kids like her or anything of the sort. But she is starting to talk about it and asked to go to the Conference with us. I just don’t see how she would be able to do the full weekend, but I am hoping she will be able to come down for one day/afternoon and maybe participate a little in the kids program. I know it would be good for her so I am hopeful that we can get her there for at least a day. I know I am looking forward to it now that I know for sure I am going!
I think that is all my updates for now – BTW, I am still working on my Emergency Plan and will be posting soon about some ideas I have about making it work. (See Surgery/ Emergency Tips Parts 1, 2, 3 and 4) I haven’t forgotten and I am working on it! It is a big task but I am anxious to try out a couple ideas and share them with you, if they work!