Day-13 Wednesday

Wacky Wednesday is here! After calling CHOP to try and schedule an appointment, I called Dr. Soppas and left a message to try and clear up what she told me yesterday. She called back and clarified. She spoke with maria, too. She said that she called CHOP and told them what she would like. We need to wait for a call from them. If the arthritis department doesn’t think they can help, then we will go to cardiology.

Dr. Soppas called Dr. Rusk and he agreed to have Alicia put back on Ditropan.

When I was out doing shopping, Maria asked me to bring back some Thai vegetarian soup for her.

Maria got a bunch of flowers that were sent by my department in which I work. Thanks PSG. You guys and gals are the best. Maria was very happy.

Kathy is here today and working with Alicia. Kathy told me Alicia gave her a great big, long hug. Alicia also gave me one too when she got off the school bus.

Day-12 Tuesday

Tuesday was kind of a good day, except I paniced. But more on that later. The morning started poorly since Alicia had another nosebleed. I spent most of the day cleaning up the blood in her bed. She’ll need a new mattress some time soon.

I was busy at work. Alicia’s new computer arrived from Dell. She’ll be happy and she was.

Maria’s pain seemed to subside throughout the day. When it came time to get Alicia from the bus, I must have fallen asleep on the sofa. They brought Alicia to the door. I told them I didn’t hear the horn, but they said they beeped twice. We have to go out and get Alicia from the bus because they can’t handle her at times. They get annoyed. Oh well!

After a snack, I took Alicia to see the pediatrician (Dr. Soppas) for a regular med checkup. And we got to talking. We first spoke about the frequent nosebleeds this past week. Dr. Soppas suggested I get a humidifier and use saline nose spray and a little vaseline in each nostril at night. I asked if these could be related to Alicia being worried about her Mom. Dr. Soppas said it could.

Then we talked about the frequent wetting situations at school over the past couple of weeks. Since Alicia has had a cold during this time, it could be that she is having her typical lack of control while she is not feeling well. However, ot could be a side effect to the seroquel. She suggested I talk to Dr. Rusk.

Then I asked her about Alicia’s blue hands and feet. This has been a problem for a very long time. But now her OT has mentioned it the last 2 weeks and wanted to know more. Dr. Soppas mentioned that one of the tests Alicia had a CHOP in January was ANA (anti nuclear antibodies). It measured antibodies, I think she said. It was unusually high at that time, indicating an autoimmune disease issue. She also mentioned a disease called Raynaud’s phenomenon. She said it was not dangerous in itself, but could be with another disease. I’ll call her to clarify.

Dr. Soppas suggested we schedule an appointment at CHOP in the Rheumetology/Arthritis department.

Then later when we were eating dinner, I paniced. Alicia was choking on some chicken nuggets. She was having trouble breathing. She was rolling on the floor. I tried to get the stuff out, but couldn’t. I called 911. But while on the phone she somehow got the stuff out and was fine sitting on the floor. I told 911 to cancel the ambulance. Unfortunately, the police showed up. They wanted to help. I told them about Alicia and they thought we should still go to the ER. I thanked them and apologized again.

I guess I am getting stressed out.