Staying in CA for a while

To be sure they knock out everything, the doctors have put Amanda on a 14-day antibiotic treatment. She is now 3-4 days into the treatment and will stay in CA until the treatment is done and she is completely recovered.

Please continue to pray for Amanda, Susan, and Dan.

Dana

Doing better

Amanda has been readmitted to UCLA hospital and is receiving antibiotics. She is improving and will probably stay in the hospital for a couple more days.

Susan, Dan, and Amanda will stay in CA until Amanda is completely stabilized and able to travel.

Dana

Amanda may be readmitted to UCLA today. She has a urinary tract infection, and they are going to do a spinal tap and EEG to see if anything is going on that is causing her to be uncomfortable and scream. There continues to be no sign at all of any seizures, so we hope this is a relatively minor setback.

Please keep Amanda, Susan, and Dan in your prayers.

Dana

Amanda I. Update

Amanda has been released from UCLA and is resting comfortably in our room. We will stay locally for a few more days and then try to hitch a ride home. We were blessed to come out here on a flight through Corporate Angel Network and hope to return the same way. Hopefully, we will return to NC sometime this weekend or next week.
This is the first time I have been on the computer since before the surgery so I wanted to thank all of you for your warm thoughts and prayers. God is good and He has definitely made His presence known to us, to Amanda and to those we have met along this journey. We are humbled by the amazing people that God has placed along our way - from friends flying 2600 miles to give blood, to friends on their knees praying for us, to uplifiting emails and letters, to new friends made in the hospital, to the wonderful doctors and nurses caring for our precious child. Thank you!
We are so thankful to everyone and especially to God for allowing Amanda to be blessed and be doing so well. Neurologically, she is doing great -- no seizures since the surgery (Praise God!!!!!). She is pretty fiesty given as she still has quite a bit of pain, but the doctors say that it is good that she is so fiesty. Every so often she opens her eyes and yells at the top of her lungs to let us know that she definitely has an opinion on things. Each day, she gets a little bit better. She has actively played with toys, smiled once (a few days ago), and finally got her voice back so we can hear her (she had lost it due to a thrush infection). She has started eating again and has held down all of her food for over 24 hours. All the signs are good that she will continue to do very well. We humbly thank God for giving her the strength and spirit to get through this surgery. We are faithful that God has healed Amanda through this surgery and that she will continue to touch lives (as she has ours) for many, many, many, many, years to come.
God tells us in His word that He will hear our cries and save our children and He has proven true to His word. "We can do all things through Christ who strengthens us!!" Praise God!! Thanks again for all of your warm thoughts and prayers. May God continue to Bless you and your families.
Susan

Leaving the Hospital Today

Amanda is leaving UCLA hospital today! Hopefully, the whole family will be headed home to NC within a matter of days. Katie will be delighted to have her Mommy, Daddy, and little sister back home.

Thanks to all for your prayers and support during this time.

Dana

The First Smile

Amanda smiled for the first time this morning. She seems to be feeling much better, and they may release her on Monday to go to the hotel for a week. Big sister Katie has Aunt Is and Uncle Howie visiting her this weekend in NC.

All around good news!

Dana

In a regular room

Amanda has been sleeping a lot in the regular room, allowing Susan and Dan to catch up on their sleep, too. Things are still going very well, and we are hopeful that Amanda will be released from the hospital within a few days.

Our prayer going into this period was for a miracle, and that is exactly what we are seeing. God's glory and goodness are very clear to all of us!

Dana

A message from Grampa Jack

Dear Friends Of Amanda,

I was blessed to spend 7 days with my beautiful granddaughter Amanda in California. I returned to Houston on Monday. As you have read in the posts, Amanda slowly is recovering from the surgery.

I had the opportunity to spend time with Amanda, Dan, and Susan before and after the surgery. Every minute spent with my special granddaughter is the best time I could possibly have. Her smile is so captivating, her spirit so dynamic, her blue eyes so full of life.

Thank you for your prayers, messages of hope, and best wishes. You mean so much to Dan, Susan, Amanda, Katie, and the entire Ivancevich and Hermanson families. Real friends and family help all of us through the roughest moments in life. Each and all of you provide a safe harbor for the families.

Susan and Dan represent what parents should be in difficult times: loving, attentive and focused on Amanda without forgetting about 6 year old Katie home in North Carolina. Pegi and I are so proud of Dan and Susan as they care for Amanda every minute as she forges ahead.

I want to take a moment to thank the two Georgia friends who traveled to California before the surgery to donate blood. If there is ever anything I can ever do to repay you, please call and I will do my best for you and yours.

There still is going to be a bumpy recovery road ahead for my Amanda. She is a scrapper and does her best. I talked to Dan today and Amanda is holding her own and slowly making progress. She is agitated by the hospital confines, the awkward dressings and constant but necessary interuptions. Each doctors' visits are postive in her fight to return home as soon as it is safe to leave the UCLA area.

Please continue your prayers and positive thoughts for a baby girl whom I know will grow up to be a beautiful young lady.

Grampa Jack I.

Moving to regular room

Amanda will be moved to a regular room later today or tomorrow. While she has been very agitated, the doctors are pleased with her progress.

After about 5 days in a regular room, they hope to move Amanda to the hotel across the street for about a week before arranging a flight back to NC.

There has been no sign of any infantile spasms since the surgery, so everything is looking very positive at this point. Keep praying for continued good news!

Dana

Talked with Susan

I talked with Susan last night. She and Dan are holding up well and trying to keep Amanda comfortable during this important recovery period. Amanda is still progressing as the doctors expected.

Thanks again for all of your prayers. I know that your prayers have lifted up Amanda, Susan, and Dan - as they lifted me up when traveling to UCLA and back. Many events and conversations during the trip made God’s presence and power very clear.

Dana

Still Going Well

This is the toughest part of the recovery for Amanda - now through the next 3-4 days. She is dealing with swelling and some fever as the doctors expected. Susan and Dan are taking shifts in the ICU with her. The team at UCLA has truly been fantastic, both on a technical level and an interpersonal level.

Dana

Doing Great

Amanda's doctors said this morning that she is doing extremely well. She has been moved out of the highest risk ICU to a lower risk ICU. She has been moving her right hand, a great sign that there may not be any right side loss at all. Susan got plenty of sleep last night and is ready to take on the next 4-5 days.

Thanks to all for your prayers and support. God has made many things come together in a short time!

Dana

Mailing address in CA

If anyone needs the mailing address for Susan and Dan in CA, it is:

Susan Ivancevich
UCLA Tiverton House
900 Tiverton Ave.
Los Angeles, CA 90024

It will probably be 2-3 weeks before Amanda is cleared to return to NC.

Dana

Message from Dan

Amanda's surgery was completed about 3:15 PST. Surgery went much faster than expected. The surgeon met with us and told as that the surgery went better than expected. His direct quote was "I like to say that it has been a normal day at work, but today I can say that it was better than a normal day at work."

The surgery progressed as expected but just quicker. They were very pleased with how Amanda handled everything in surgery. She was stable the entire time and they needed less than one pediatric unit of blood for the surgery (just incredible). Amanda was released to recovery where she stayed for about an hour and then she was taken to the Pediatric ICU where she will spend the next 4 or 5 days.

The doctor has forced us to go back to the hotel to get a night of rest before tackling the next few days.

As always, Susan and I are thankful for all the thoughts and prayers. We still need them though, so keep us in your thoughts and prayers. I will keep you updated as I am able.

Thanks again.

Dan

Surgery Went Great

I just got the call that Amanda is out of her surgery. The surgeon said it went as well as could be hoped. It appears that Amanda had no brain functionality on the left side. Thus, it appears that her right brain had already started taking on some of the left brain activities. They believe her right brain may have been operating her right side movements, which means she may not have lost them!

Amanda will experience some swelling the next few days, and she will probably have a fever for 3 to 5 days. This is part of the healing process. She should be in the ICU for the next 5 to 7 days.

Thanks for all of your prayers to date. Please pray for continued recovery. Heather

More recent picture

Here's a picture from August.

A Break from UCLA

Susan, Dan, and Amanda have been out of the hospital for a few days. They are staying at a hotel just across the street from UCLA and have managed to walk around the area quite a bit.

There are a few test results outstanding, but things are still on course for Amanda's surgery on Friday. Thanks so much to Amy and her father, who flew to LA and back today to give blood for Amanda.

Thanks again to all.

Dana

Amanda's Picture

Here is a picture from Amanda's first Birthday party.

Amanda I.

Amanda's surgery is scheduled for Friday, October 14th at UCLA hospital. Below I have posted Susan's earlier description of Amanda's situation. Since Susan's message below, the diet and other medications have not been successful in reducing the infantile spasms and other seizures. UCLA has developed a surgical technique to isolate the area of the brain triggering the seizures, so that they don't spread to the other side of the brain.

Thanks to all for your prayers and support.

Dana

*********

May 27, 2005

Our wonderful little angel Amanda turned one this week!!! I have attached some birthday pictures so you can see how big she is getting. I also wanted to thank all of you who have prayed so diligently for her during the pregnancy and during the last year. Your prayers are truly making a difference. The next few paragraphs summarize Amanda’s amazing journey through her first year, and outline what she has in store in the coming months.

As many of you know (and many do not), Amanda had a stroke while she was still in the uterus. The fact that she survived the stroke itself has amazed her doctors. During her first 6 months of life, Amanda did very well. She was a little delayed in certain areas but was progressing well.

Then in December, she started having seizures and was diagnosed with something called Infantile Spasms, a very severe form of epilepsy of infancy. Despite the grim prognosis associated with this diagnosis, Amanda has significantly outperformed the mean and continues to have the most amazing and loving spirit you could ever imagine.

After her initial treatment, she remained free of the Infantile Spasms until late March when a brief virus initiated a relapse which then caused her to lose certain skills that she had previously acquired. As she continues to rebound from the relapse, she has been regaining many of these skills.

Although the Infantile Spasms are currently under control, she continues to have other types of seizures despite being on the maximum possible dose of two anti-seizure medicines. In spite of all the medications, shots, and continued seizures, she has a very engaging personality and loves to smile, laugh, and play. She continues to progress well in her therapies and is truly a happy energetic little girl.

Amanda has a truly wonderful neurologist in Raleigh, NC and her case has been reviewed by two leading teaching/research hospitals to evaluate treatment options for her. We are thrilled that she has been accepted into the ketogenic diet program at Johns Hopkins as a treatment for her epilepsy. Assuming all pre-admitting blood tests come back acceptable, we are scheduled to start the diet on June 6, 2005. She will be admitted to the hospital and will stay there until June 10.

Amanda is truly our hero. In the 12 months I have had the privilege and joy to know her, she has taught me more than any person I have ever known. She brings joy to every day and continues to teach us everyday what it means to be a survivor and to appreciate every moment of the wonderful life God has given us. I know that God has a wonderful plan for her on this earth. She has already blessed me and my family more than words could ever describe. I am so thankful that God has entrusted me to serve as the mother to this precious gift. It is in this spirit that I humbly and gratefully ask you to remember Amanda in your prayers as she heads into the next several months of medical treatments. Also, please feel free to put Amanda on any prayer lists you can think of and/or to pass on this prayer request to anyone you think might be willing to pray for her.

Prayer can and does make a difference. Our Lord is the great physician and prayer is the strongest medicine out there. We thank you for your continued prayers, support, and friendship!! God puts special people like you in the lives of those who need you most and we sincerely appreciate you being in our lives!!! Thank you so much and may God Bless you and your families always!
~Susan