Well… maybe not a week because I don’t think I can recall what I did last week at this time, but a summary more or less of what’s been happening most recently in our life. In an effort to save my brain from trying to connect one thought to another in nice neat paragraph form, I’m just going to list in the order in which my brain can recall some of the more recent happens in our life.
1. Lucy had an appointment with her GI doctor yesterday. In many respects it was one of our easiest appointments. We didn’t make any changes to her current feeding schedule or medications. Her GI didn’t get all worked up over her loosing a few ounces from last months appointment because as well all know, Lucy was sick. Things with Lucy have really remained the same GI wise since the middle of November. We should be feeling good about this appointment; however, there is a lingering concern over what we are going to do when Lucy can no longer grow on the calories and feeding rate that she is at currently. Attempts to increase her feeding rate have been unsuccessful, her motility is slow…poor…pathetic…just plain stinks. When we try and bump her rate she is miserable, often lays on her back, hiccups, and makes horrible noises I have only heard a sick cat make…it is just not good! Our attempts at increasing her feeding rate with a GJ tube proved to be unsuccessful as well. Her intestinal motility is just as slow if not slower than her belly. She is malabsorbing her food. In other words the food is going in her at a fast rate but her body cannot process the nutrients fast enough, hence all of the diarrhea. Increasing her calories per ounce is what we have been doing to keep her growing, but we are reaching the point where we can no longer do this and keep her hydrated. Motility medications are not seen as being beneficial for Lucy, there is concern about the neurological side effects of these drugs on kiddos like her. Frankly, whenever I hear that there is a potential for neurological side effects it scares the c**p out of me. We are forever weighing the pros and cons of any medicine, procedure, test... There simply is no manual or “how to guide” for Lucy, we will just continue to do what we have been doing all along, try and make the best decisions for our girl.
2. We are gearing up to celebrate Lucy’s second birthday on Friday! Our little red headed girl is soon going to be two. Some have said that they can’t believe that she is going to be two, already. For us, the last two years have in many respects been the most life altering two years of our lives.
3. On a much lighter note, we can finally see our grass again. Most of the snow has melted and the temps are in the fifties. This year more than usual we are looking forward to spring. Once again I missed the boat last fall and did not get any spring blubs planted, in Sophie’s words “shucks” is all I have to say.
4. Speaking of Sophie, she is in heaven scavenging our house for presents she can wrap in gift bags for Lucy’s birthday. Everyday she asks me if today is Lucy’s birthday. “No”, I tell her, “Lucy’s birthday is in x amount of days”, to which she replies gleefully, “so it’s tomorrow!” I think future party planner could be a potential occupation for Sophie.
5. I attended my first UMDF meeting in Philadelphia this weekend. I am feeling led to do something…. to help raise awareness of mitochondrial disease, which will hopefully raise funds, which in turn will ultimately lead to finding a cure for this baffling disease that affects our family and so many others. I was asked if I would help serve on the board and work with the committee that organizes the Annual 5k Walk for Energy. I guess this is the something I was led to do. I am looking forward to helping organize this event, getting sponsors, and creating teams to walk in honor of our Lucy Grace and many others who are affected by mito. I will have much more information on this in future blog posts, you can count on that!
6. We had an appointment last week, or maybe it was the week before, with the developmental pediatrician at DuPont. I can’t remember anymore what appointments happened when, going to appointments is so our norm. All I am going to say about it is, whoa! I’ll dive into the details of this at a later time. One good thing that came out of that appointment was a referral to the augmentative communication specialist. Nine calls have been made so far to outpatient therapy to set up this appointment, I think it will be lucky number ten that will actually get a scheduler to call us back.
7. Jack has been playing indoor soccer for the last month and the team he is on is actually doing well. So unlike his fall soccer team who were unable to win a single game. He is enjoying it, and we are all having fun watching him play.
8. Once a year at Megan’s school the kids publish a story that they have written. The stories get typed, bound, and displayed in the library for all to read. Megan’s story was entitled “Picking Pumpkins at Wal Mart”. Yes folks, this year we took the kids to a pumpkin patch in Amish country on a Sunday. F.Y.I. the Amish do not work on Sunday, hence the title “Picking Pumpkins at Wal Mart”. When I went to read Megan’s book, the first page read “dedicated to my mom and dad”.
It’s late and this is getting rather long. Here’s hoping for a “good”nights sleep.