Two diagnoses down, two to go...

I have been diagnosed with Fibromyalgia and Áine has been diagnosed with Mood Disorder (in her case a classic presentation of depression).

I have started meds and received multiple injections. Áine will be starting a new sleep med in a couple of days since returning to her sleepless ways last week and an anti-depressant to follow in the coming weeks.

The two pending diagnoses are: micro vascular disease (MVD) and Rheumatoid Arthritis. Both for Alexia. Should have results about the former the late part of September and the latter by the first week in October. Testing and appointments to complete first.

Happy Monday!

A unique perspective

Ciara took this shot of some fish swimming in a tank at the Aquarium of the Pacific on a recent trip with Dad and Brendan. I thought it was gorgeous and looked more like a painting.

It's cardiac, kids.

Some of you have been following my health saga beginning in January of this year. Still not feeling well and not being heard, I made myself an appointment at the Women's Heart Center at Cedars-Sinai for August 5. It was some of the best 6 hours I have ever spent. I had a one-hour consultation with the cardiac nurse practitioner, followed by a 30 minute session with the cardiologist. Then an EKG, lab tests, and chest xray. I go back in about a month for a follow-up and in the mean time will be scheduled for a specialized cardiac MRI and they have referred me to their rheumatologist as they suspect lupus, and after that appointment I will be scheduled for an angiogram to get me on the right meds. Never in my life have I felt so validated! To be listened to by a doctor, to not be told it's in my head or to drink ginger ale - the apparent magic cure-all. I am so glad I went. After my EKG, they came back in the room with big smiles and said... "You are the owner of an abnormal EKG." The happiness was because now the insurance will approve the MRI. So it's a mixed blessing to be sure. But all along I just needed someone to legitimately listen to me. And at least now the plan is to treat before something major happens. The cardiologist wrapped up her time by sheepishly saying they should have an official diagnosis and treatment plan by the end of September as if she was embarrassed for it to take so long. Hello??? At the very minimum I have been dealing with my internist since January of this year. 8 months. I can wait until the end of September thankyouverymuch.

Additionally, it would seem that Aine is presenting with signs of bipolar disorder and to this end she has an appointment with Brendan's neuropsychiatrist at UCLA on Mon 8/30/10 to confirm the diagnosis. Following almost 5 months of days of sleeping 90 minutes and being wide awake and alert the rest of the time, she abruptly starting sleeping 12 hours at night and spending the rest of her day lying in bed not eating and managing to only drink about 8-10oz of rice milk per day. She has bouts of silent crying in her awake hours. There is talk of a brief hospital stay to get IV fluids and meds in her. In retrospect she has had these month long periods a few times in the past two years especially. Because she always has such other pressing health issues, the bipolar issue has not been looked at as a possible explanation. However when looking at the pattern of behavior it needs to be addressed. Additionally, this was about the age was when Brendan was diagnosed with bipolar. However, he rapid cycles, while Aine appears to have a more classic presentation. Once we get a firm diagnosis and she is put on medications I will post an update. Hopefully we can get her more stabilized and get some strength back into her before school starts.

We are awaiting word from UCLA for a date for her BAER (hearing) test with sedation. Her pediatrician tried to go through CHLA and after two weeks of waiting, when I spoke with the scheduler earlier this week, I was told that they don't take anyone above 52 pounds for that test. Guess I missed something in the "Childrens" part of CHLA ;o)

Guest Blogger -- Ciara! -- Knotts Berry Farm

We just survived the Sierra Sidewinder!

Start of the day...

In the hotel...

Going home..

Hey everybody! It's Ciara! I have so much to say today.

Okay so on Friday my mom and I went to Knotts Berry Farm and we had a blast! We started off the day by heading towards the Jaguar - which we rode 4 times that day! It was so fast. After, we went on the swings that spin around and around by Fiesta Village we rode that three times. As well as The Log Ride and Bigfoot Rapids we got soaked on those two! We also got lunch at the Johnny Rockets there. DO NOT EAT THE CHEESEBURGERS THERE!!! We then decided to go to the hotel, but we first went to Tuti Fruiti for some frozen yogurt. After we checked in and settled in, we went back to the park. We rode all the rides again which were so fun in the night. We also rode the Sierra Sidewinder it was so fun! IT WAS SUCH A FUN DAY!