I Love My Daddy

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.

Doing Great

I am late again with the blog... sorry :-(

It was a very busy week and it's not going to get any easier. The girls started school Kyana in 4th grade with Mrs. Justl (4th/5th grade combo); Taylor in Kindergarten with Mrs. Buxton (Kyana's kindergarten teacher and an awesome person all around) and Amber continues to go with Amanda her Oral therapist.

On Tuesday, Amanda found a bottle by First Years which has the same feel as her pacifier from the hospital "soothie". What a great find, she took 3 cc on Tuesday, 10 cc on Thursday and today 15 cc... she is progressing. I didn't think it could happen but we will start doing home trials this week. I will have to get some bottles myself to have a back ups. We also started physical therapy... finally... on Monday, Wednesday and Friday.

I don't have any pictures to add this time but I will next time... my external hard drive crashed without warning or explanation but my wonderful husband brought it back to life. I would have lost all my pictures and videos of the girls... ALL.

So my girls have given me no personal time unless I decide to become a vampire :-)
Kyana has school from 8:15 to 2:35pm Monday through Friday possibly going to gymnastics on Fridays. Taylor has school from 8:15 to 11:45am Monday through Friday would like to find something for her to do after school once a week. Amber has oral/physical therapy 9:00am to 9:45am Monday through Friday with the usual once, twice or more times a week doctor appointments. This week Tuesday E.N.T. says she might have an ear infection due to extra fluid in the left ear; we will do antibiotics for 10 days. Wednesday is Ophthalmology to see if she will need surgery on right eye again to remove the scar tissue. Thursday is Neurology... also finally. I hope they don't cancel or reschedule this one.

As always, thank you for your good thoughts, prayers and positive energy. I will add pictures and update on Sunday :-). Take care.

Our Busy Week

It was a very busy week... sorry I am late not our usual Sunday night. We had all the cousins over, the kids had a great time, we laughed, we ate, and everyone went home.

Amber started last week with an easy Monday but on Tuesday we are up bright and early. Tuesday we met Dr. Zadeh, genetics. She had nothing new to say, just that all the syndromes they could test her for, they've tested her for and it's all negative. They will have to wait to see how she continues to grow and develop to attach a syndrome to her. The next appointment will be in six months. She did say that anything this syndrome could have caused it has already done so, there should not be any new developments due to what she has.

On Wednesday, we saw Dr. Sami, Ophthalmology in Orange. He saw that her right eye is still pulling the pupil away from the center due to scar tissue. We have a new and different eye drop to see if this will help. If it does she will be fitted for contact lenses in two weeks, however, if it does not help we will need to go in for surgery. The surgery will be to remove the scar tissue and allow the pupil to be round again, it should be an outpatient procedure in and out.

On Thursday, we saw Dr. Grant, GI in Mission Viejo. This was an exciting appointment. We made some changes to her feeds. One we are skipping her 1am feeding so instead of 8 times a day she eats 7 times but the same amount in one day. We also added rice cereal to her milk once a day, we do this at her 10pm feed so that it helps her last through the night until 4am. We are able to get a little more sleep time. We also learned that her MicKey button will be changed every 3 to 6 months. We can bring her in to the office to get it done or do it ourselves at home... I am not sure we are ready for that adventure so when it's time we will take her in.

On Friday, we had our big Neurology appointment that got cancelled. After several calls back and forth with their office we still don't have a new date and time. I hope we hear something this week.

Amber continues to grow 13 lbs 8 oz and 24 inches long, she is doing great. Oral therapy is still going on Tuesdays and Thursdays she is progressing according to the therapist but in my eyes we have a long way to go :-( Please continue to pray for her progress, and continue to send possitive energy our way. Thank you so much for your love and friendship.