Many Blessing for Amber

It was another busy week for Miss Amber. We've started Physical Therapy on Mon/Wed/Fri at 9am. She already has Oral Therapy Tues/Thurs at 9am, so it's a very busy week. Kurt's brother Daren came for a visit. We spent Kurt's birthday with the Varricchios and had lunch with his Grandparents today.

During the week Amber saw Dr. Crocret (ENT), he said she had fluid in her left ear and prescribed an antibiotic. Saw Dr. Sami (Ophthalmology) and found out the eye drops were not helping, they will have to go in to remove the scar tissue on right eye. Also on Wednesday we noticed some bleeding from her feeding tube site. Thank you to Molly Rapini and Janel Groussman for all your medical advice. The next day we saw GI and Neurology. GI said it would be fine and that the antibiotic for the ear would also help with her feeding tube area. The Neurologist was another story... it was a scary Thursday and Friday. Thank you to my mom, Robbie Baranoff and Katrina Fineberg for covering with Kyana and Taylor while we were dealing with Amber.

We had been waiting and looking forward to our appointment with neurology, to learn more about Amber. Dr. Lott came in touched her soft spot on her head, walked out, reviewed the films from CHLA CAT scan and CHOC's MRI, touched her head, walked out, touched her head again and asked if there were any changes or if Amber had been irritable. We said yes on and off but we thought it was the new eye drops, the increase in milk volume, the cereal we were adding to her night time milk, or skipping her 1am feeding. He said I need you to go to the ER to get a CAT Scan of her brain, I feel she is having pressure and will need surgery right away to relieve the fluid. He sent us to St. Joseph's next to CHOC in Orange because they have the pediatric neuro surgeon there. After four hours of waiting, doing the scan and waiting, they felt the fluidwas not significant enough to do surgery right away. We had the option of admitting her into the hospital for them to check her in the morning or coming back in the morning to see the Neuro surgeon. We took her home and came back in the morning. Dr. Muhonen said there was no need to do a shunt, which is a lifelong, life changing procedure to relieve fluid pressure from the brain. He said any baby that has been through what Amber has goine through would be irritable. The things to look for in Amber is lack of activity, sleeping a lot and golf size bump from her soft spot. We were relieved, my prayers were answered. We will have to follow up with both Neurologist (keeping track of her outside brain activity, moving, talking, walking, etc.) and a Neuro Surgeon (keeping track of her inside brain activity, flow of fluid and brain growth). The surgeon said the amount of frontal brain fluid should go away with age, about 18 to 24 months old. He also said the brain fluid was caused by the heart defect.

It was a good ending to our week, Kurt's birthday and family time. Thank you for caring about my Amber :-), for all your good thoughts, positive energy and prayers.