Adjustments

Adjust, adjust, adjust! You know your busy when the clock falls back and you are excited because you can get a 25 hour day in order to "catch up to life!" Yes, it has been like that. Oceana is adjusting to non hospital life one day at a time. Obsessive over SIMS, she was playing non stop (as much as she was allowed) until Dad accidentally left it in Kyla's room at the beach house during Halloween Weekend. Ocean City featured a business trick or treat event on Saturday that was reinforced by a residential event on Sunday. Oceana was a rock star (appropriately so) blowing off the wig that didn't fit her well and exposing her dark shiny regrowth pronounced by a widow's peak. Eddie Munster or a rock star....lol. It didn't matter, a good time was had by all!

Oceana is now enrolled in cyber school. We are currently waiting for the materials so that she may actually begin. The Cyber School takes a few weeks in order for the materials to arrive; this is a good thing to know before hand as a family may consider to start the enrollment process sooner, rather then waiting for such things as a broviak (central line) to be removed. Certainly, we did not anticipate this delay. Oceana's cyber school should begin by Nov.14th.

Hip hop dance, gymnastics and karate are all of Oceana's choices for physical exercise and peer social interaction. As long as she has the interest and discipline to do so, we plan to encourage her participation. She's not there yet, as Oceana is easily winded when playing with the neighbor (Emily Dinella) as well as with both Kyla and Tai. Oceana is slowly building back her endurance even though she is becoming quite strong and solid. She has gained over 15 pounds since we left CHOP August 16th.

Today we return to Outpatient CHOP. A CT scan has been ordered so that we may hopefully not see FUNGI NODULES. Vfend is the antibiotic of CHOP choice, produced by Pfizer costing over $3000.00 a bottle for 120 (200mg) pills. Do these qualify as "super pills?" I suppose we will find out today if she has indeed overcome the Fungi. In addition, Osh will have her blood drawn today. This is not fun, AT ALL. Since Oceana's Broviak has been removed, she must now get stuck in order to give a blood sample. This, my friends and family, is a "NIGHTMARE" for Osh. Admittedly, the second time Oceana went through the "sticking" process, she did much better. We hope that today it will not hurt and that she will tame her vivid imagination and phobia regarding blood.

As we have had to take measures one day at a time in order to cope and adjust to our newly found hospital diagnosis, We now are taking measures in order to readjust our lives so that we can continue to strengthen Oceana. We are especially grateful for all the love and positive energy that we have received from all of you. Knowing that there is so much love in our family helps encourage Oceana to want to achieve her definitive goals.