Nicole is still attending the “Ortho Kids”  swim therapy at our local hospital Delnor community hospital
The program has helped her tremendously

February 24th Nicole had her MRI today. It is getting harder to sedate her for the MRI. This time we were lucky, her breathing was not as bad as the last time in September. The original tumors have remained stable, but the spot we have been watching has increased to approximately 9mm. {The radiologists report showed that the new spot is now 10mm in diameter.} The Neurosurgeon wants to monitor this. The shunts appear to be working since the Ventricles are small.

February 28th Nicole saw her neuro-ophthalmologist, who after examining her said everything appeared to be the same, that is good news.

February 19th Our local Lions Club (Elburn Lions) sponsored us to go to the "Someone Special awards" which is hosted by the Oakbrook Terrace Lions Club. And was held at the Drury Lane Theatre.

We saw a play called "Aladdin" and we all had fun. Nicole said "my favorite part was when the people got married". She said "I like happy endings"

March 23rd Off and on for the last few weeks, Nicole had shown some of the signs of shunt failure.
Today we took her back in to Children's Memorial, where they confirmed that her shunts were failing.
We went in Wednesday evening, Nicole last ate around 5PM, and we had to wait till 4PM Thursday to get a spot in the Operating Room. The poor kid was quite hungry by this time.

After the surgery, Dr. Tomita came out and told us that both shunts were clogged, and that he replaced them both.

Friday morning, Nicole wanted to eat everything in site. But was happy.

Let's see how many miles we get out of these shunts.

May 7th Nicole scratched the scab off of one of her shunts, opening the wound.
This compromised the integrity of her shunt.
They called in a team to remove her shunts, and install external shunts. {EVD's}
After they externalized them, they monitored her for infection.

As if this wasn't enough, I went home to prepare for work, and found that my sump pump failed, and we had 1/2 inch of water in our basement.

May 13th, Nicole had a CT scan in which they injected contrast into her EVD to see how well it communicated (traveled) in her Ventricles.
The Great news is that it not only went where they were hoping. But it also went to the 4th ventricle and to the spine, which was unexpected.
This could mean that she may not be shunt dependant anymore. They are conducting several tests to determine this.

As of 5/15, all tests for infection have been negative, Thank God.
At the moment, they are monitoring the CSF pressure, and are planning another CT scan 5/15 in the morning.
The pressure stayed stable, so they removed the external drains.

May 17th Good news! We brought Nicole home from the hospital.

So far we are headache free, we are hoping and praying that she stays that way.
This leaves the question. Why was she having all the problems with the shunts.
The doctors could not provide an answer.
We won't look a gift horse in the mouth.

May 25th we rushed Nicole into the hospital with symptoms of Hydrocephalus. The doctors installed an EVD to drain the excess pressure.

They will monitor her and try to decide what type of new shunt to install.

On Tuesday  the doctors decided to close the EVD, and see how her pressure held.
They closed it around 10 AM, and around 5 PM, she complained of a headache, and vomited. They promptly opened the valve, and she was back to her normal self right away.

On Thursday the doctors installed a new shunt system, this one was located at the back of her head instead of toward the front like the previous ones. The doctors said that the ventricle is larger toward the back side, and that it may not clog as easily.

The new shunt is programmable, so doctors can make adjustments without having to open her up.

May 31st We brought Nicole home on Saturday. 

June 3rd Tuesday, Nicole's school , Howard B Thomas elementary school, had an assembly where the kids who were in the talent show last Thursday could perform again.

Nicole was honored to open, and sang "You are my sunshine".

This was great since she was so disappointed to miss the talent show.

June 11th  Nicole had her stitches taken out and had a CT scan. 

No headache complaints, since the new shunt was installed, and the CT showed no hydrocephalus.

June 28th  It has been 4 weeks since we brought Nicole home. So far she has had NO headaches.

This is the first time in a long time that she has gone this long with no headaches. She is a very very happy girl.

Thank You God for placing your healing hand upon Nicole.

Summer camp starts next week 7/5 for two weeks and Nicole is very excited about going.

July 5th We drove Nicole up to Williams Bay, Wisconsin for camp. This year Nicole is staying at the newly build lodge.

After dropping Nicole off at camp, Mom, Dad, and the twins went to Delavan, Wisconsin where we watched two fireworks shows.

July 6th we went to camp for family day, we listened to inspiring stories of Love, Courage, and Friendship. We sang songs, and had a great time.

July 16th 10 days, no word from Nicole. This is good news. Today, Nicole, and her fellow campers,  will be at "Fun Day" hosted by the Elburn Lions Club. At Fun day the kids get to ride in Police cars, Ambulances, and Fire Trucks. They get to play with the Lights, Siren's, and PA. But the most popular attraction is when they get to pet "Akron" the Elburn Police department's K-9. The kids keep Akron and his handler Ptlm Brian Schopp running. But they LOVE it.

July 19th we picked Nicole up from camp. Nicole said she "had sooooo much fun", "I  made so many new friends", and "I want to go back to camp next year"
And the best part of all Nicole says "I had NO HEADACHES! " 

July 29th It has been nearly 9 weeks since the last shunt revision, and not even one headache. Thank God. Nicole is really enjoying her summer this year. Finally.... It's been a long time coming.

Nicole's next MRI is set for September 10th.

September 10th Nicole had her MRI. The scan showed little or no growth of the spot we have been watching. And no growth of the original tumors. Thank God. 

This has been the best summer Nicole can remember. Her quality of life has changed dramatically because she has no more headaches.

Nicole is back at school, and LOVES her teachers.

Nicole will be starting back at “Ortho Kids”  swim therapy at our local hospital Delnor community hospital starting in October. This will help her a lot.