We are still here, I just haven’t had much time to blog recently. To be honest, I have had a difficult time finding the right words to describe what we have been feeling. We are working at grasping what getting Lucy’s diagnosis means. Since I last posted we saw Lucy’s neurologist. She discussed with us what she thought of Dr Shoffner’s report, she agreed with his recommendation to start Lucy on on the Lecovorin as well the mito cocktail. She also discussed the results of Lucy’s EEG. Seriously, I was kidding when I wrote about her EEG coming back abnormal because she had a tantrum when they placed the leads on her head, but abnormal findings are what we have. We discussed doing a 24 hour ambulatory EEG in the next month or two to get a better idea of what Lucy has going on inside her head. We all agreed to give Lucy a break from the hospital setting as well as any testing for the next few weeks, she deserves one!
Since her neuro appointment I have spent A LOT of time trying to get Lucy the medications she has been prescribed. You would think that I could just go to the pharmacy, drop off the scripts, and pick them up when they are filled, think again. Lucy has been prescribed a very specific brand of CoQ10, she can only use this brand as it is the only CoQ10 that is absorbed correctly in mito patients. Of course our pharmacy does not carry this brand, we need to go through the process of having them supply it so that insurance will pay for it. We need letters of medical necessity for the CoQ10 so that insurance will cover the cost of the medication. Dr Shoffner’s office has sent us the needed documentation for our insurance, now we need to contact our case manager at Blue Cross and have her do her job. We have also had issues with the Leucovorin, it comes in two forms a pill and an injectable. After many conversations between her doctors and the pharmacy, it has been decided that we will use the pill form of the Leucovorin which means that we will need to grind the pill into a fine powder, dissolve it in water, and push it through her g –tube three times a day. I ordered a pill grinder from a medical supply company, hopefully we can start Lucy on the Leucovorin just as soon as our pill grinder arrives. Live and learn, right!
On a totally different subject, Sophie celebrated her fourth birthday last Wednesday! Four, oh my where has the time gone? Sophie had a very royal (and very hot) birthday, she celebrated her day at Dutch Wonderland a local children’s amusement park. Sophie is growing up and is a very beautiful, courageous, strong willed, very funny, intelligent, determined, loveable little girl! Her fourth year has a lot in store for her and we are looking forward to experiencing with her all that life has to offer her!
The last few weeks have been full of events and activities in our house, again another reason for my lack of blogging. We have been to museums, parks, pools, playgrounds, gone on picnics, the movies, the beach, eaten numerous ice cream cones, had our fair share of pizza, visited the inner harbor in Baltimore, went to Erie to visit family, biked, walked, strolled, and scooted around our neighborhood. We are learning to adjust to Lucy’s needs and adjusting our daily life to fit her needs as well as meeting the needs of our other kids. We avoid the heat as best as possible, allow her to sleep as much as her body requires, and keep her daily routine as routine as possible. Some days are better than others, but hey live and learn. We have done our best to eek out the last few weeks of summer before the kids go back to school tomorrow!