I wasn’t sure Friday was ever going to come this week, we are looking forward to this weekend! Lucy has been awake for only three of the last 24 hours, she is really wiped out! She went to sleep for the day at 4:00 yesterday and I woke her this morning at 9:30 for therapy. She is very floppy and unable to stand on her own today. We are always surprised when she regresses like this, but we have learned that regression is not uncommon for mito kids. We are hopeful that with more sleep and nutrition that she will get back to baseline soon. Of course we are going to keep a very close eye on her, if things get worse we will be in contact with her doctors. Needless to say, I was up every few hours last night just checking on her to make sure she was doing alright. I am looking forward to taking a nap sometime this weekend.
We joined the United Mitochondrial Disease Foundation during Mito Awareness Week and since then we have been getting lots of information about the foundation and all of it’s fundraising efforts. This weekend our local UMDF chapter is hosting an Oktoberfest and we are going to join them in the fun and festivities and maybe meet some local families who are dealing with similar issues. It should be fun for our entire family, it was about this time last year that Drew and I were in Munich enjoying Oktoberfest .
I was going to finish writing this post last night and then publish it, but we fell asleep right after we put the kids to bed. Lucy’s balance was slightly improved after she took a five hour nap. I was able to sit her down on the ground and not have her tip over. I’m going to take that as a sign of improvement. After feeding into the j-tube for the last 24 hours Lucy is dealing with diarrhea. This is what we were hoping would not happen, this is known as dumping syndrome. This is most likely happening because the rate at which we are feeding her is too fast, not allowing her body to absorb the nutrients. We are running her at the rate we fed her through her g-tube. One of the main reasons for getting the j-tube was so that we could increase the feeding rate, and get her growing at a more optimal rate. We are going to have to reevaluate our plans. She also managed to pull her J-tube out about three inches, the design of the tube is not ideal but it is the best they have for little ones Lucy’s size. Somehow I knew when I saw the finished tube that it was not going to last very long, but I wasn’t expecting it to come out this soon.
Our kiddos were exhausted today and not terribly anxious to leave our house. Lucy slept for nearly six hours this afternoon, which meant that we did not go to the Oktoberfest that we were looking forward to. This is the kind of adjusting that we have learned to do, the old us would have woke the sleeping baby and convinced the kids to buckle up in the van and go out on an adventure. I think that the new us is realizing that sometimes the best laid plans sometimes need to be put to rest, literally!