Nicole is still attending the “Ortho
Kids” swim therapy at our
local hospital Delnor community hospital
The program has helped her tremendously
The ongoing battle with greedy Tap Pharmaceuticals aka: Pharmacy Solutions continues.
It seems that since it is not their child who needs the meds, they are not very helpful.
Thankfully, the funds from the Nicole Wright Benefit fund have helped us tremendously with the 250.00 per month out of pocket costs.
January 21st We had an appointment with the Neuro Ophthalmologist, and the doctor told us that they would need to perform eye muscle revision surgery on Nicole.
We expected this, and with everything she has gone through in the past. We are not too worried about this procedure. Surgery day is set for the middle of February.
February 16th. Nicole had her eye muscle revision. And as we expected. She did fine. Soon she will be her old self again. The tough part will be keeping her quiet while she heals.
February 28th Jim and Rita Cotti from Cotti’s Bar (Elburn, IL), allowed Sara Flint to hold a Tupperware party at their business. To raise funds for the Nicole Wright Benefit Fund. The party was a success, and it netted about 500.00
Thank You to Sara Flint, her husband Mike, her mother in-law Mary Flint, Jim & Rita Cotti (Cotti’s Bar), Denise Pree, Ken & Mary Gustafson (Glidden’s Drug Store), Mr. & Mrs. George Kanakaris (Papa G’s Restaurant), Paisano’s Pizza & Grill, Jedd Stanek, And the many others who helped out in one way or another.
March 16th Nicole had tryouts for her talent show at school. She will be singing at the talent show on May 20th, and is really looking forward to it.
April 10th Elburn Lions club sponsored Nicole to go to Drury Lane theatre in Oak Brook Terrace. Where the Oak Brook Terrace Lions Club hosted the annual “Someone Special Awards” The event consisted of a banquet and a play. Nicole had a great time.
April 18th Nicole's mom woke up with a "Curtain" covering half of her right eye (field of vision). April 20th mom had surgery to repair a torn retina. Her retina had torn almost 1/2 the circumference of her eye. We should know in a few weeks if mom will regain any vision in that eye. And a few months to see if it will stay. Some people who are very near sighted get this type of tear.
May 2nd I am so proud of Nurse Nicole. She stayed right by her mom's side and provided much needed comfort, support, and assistance. Without Nicole's help, things would have been much harder.
May 12th Nicole's mom had her follow up appointment for her eye.
The doctor noted an increase in scar tissue forming, and told us he would need to do another surgery.
It was decided to wait till after Nicole's MRI which would also allow her eye an extra week to heal from the previous surgery.
May 19th Nicole had her MRI at Children’s Memorial. The
results were not so good. But could have been worse.
In
addition to the areas we have been watching, Nicole now has a tumor on her brain
stem. The "Brain Tumor Board" {BTB} meets on May 20th and will review
her case to decide the best course of action.
The
treatment would likely be Chemotherapy and Radiation.
May
20th Nicole
opened the Howard B Thomas school Talent show
May
21st
Nicole's Neurosurgeon, Dr. Tomita, called. The Brain Tumor Board discussed Nicole's
case and decided that since Nicole is doing so well right now, and is not
showing any symptoms from the new tumor. The BTB felt it would be best to wait 3
months and perform another MRI, review those results, and then decide what to
do.
Of course If she has any problems, they will make that decision sooner.
This is very scary, but we have confidence in the Team at Children's so we
will wait.
The Radiologists report showed possible interval growth of an area on her spine. We were at 1 year intervals on her spine and up to now those tumors have been stable. They also decided to have another MRI of her spine when they do the Head and Orbits.
June 19th Grandma flew Nicole, Mike Sammie & Dad down to visit her in Florida. For an all expenses paid vacation. We really missed Mom, but she has a new job and could not take off work for the trip. Especially with the time she had to take off due to her recent eye surgeries. It was a little easier since we talked to Mom on the phone every day we were gone.
We had a very busy week. The high points were: A visit to the Alligator farm and Go Cart track in Saint Augustine, Give Kids the World in Kissimmee, Walt Disney World, collecting shells along the beach, lots of pool time and most of all lots of hugs.
June 27th We had an early flight home, and we all were wiped out. We are all glad to be at home. {Home sweeeeet home.}
July 10th We took Nicole to One Step at a Time Camp. She couldn't wait to get rid of us so she could start her fun.
July 11th Saw friends we haven't seen in a while.
Shared songs and stories of hope and encouragement during "Celebrate the
Children".
We Took a tour of the new lodge. WOW!
Need I say more?
And as usual Nicole couldn't wait to get rid of us so she
could start her fun.
July 24th Dad picked Nicole up from camp. Nicole had so much fun, saw lots of friends and made many new friends. The worse part of summer camp at One Step at a Time Camp is the last day when everyone has to go home. Since poor mommy had to work and couldn't pick Nicole up with me, I took Nicole to mom's work to see her. Both were very happy.
Nicole has one thing to say. "I can't wait till next year!"
August 4th Nicole had her MRI. The MRI showed little or no growth of the new tumors. Thank God!
We will have our next MRI in 6 months.
August 11th Nicole saw Dr Tomita, and Dr Goldman. Both were pleased with Nicole, and Dr Goldman ordered some tests.
November 12th Nicole had an eye exam at Children's. We found that her prescription for glasses changed and she is slightly less far sighted. we guess this is just from getting older and bigger.
November 17th Nicole had an appointment with the Endocrinologist. All is going good, but she is still hypertensive, and has persistent Tachycardia They did a couple of tests. They think it could be caused by her Lupron. I think it is more likely caused by the Adderall, Ritalyn, or from the damage to her Hypothalamus.
November 26th Nicole had a great Thanksgiving.
She, Michael and Samantha are looking forward to Christmas.
Nicole is
still pain free, and happy. Thanks to God!
December
13th Nicole has complained of a headache for 4 of the last 5
days. Even though they were controlled by Tylenol, I took Nicole to Children's
Memorial. We found that the programmable shunt valve had changed from 1 to 1.5
which was causing too much CSF to drain causing the headaches.
We have
had this before. The shunt drained too much and caused the walls of the
ventricles to come in contact with the catheter causing it to clog and fail.
We
can't help but think that if we hadn't been watching her closely we might have been
spending Christmas in the hospital having a shunt revision.
I can't stress this enough guys. You know your child better than anyone else, including the best doctors in the world. Watch your child and if you see a change don't hesitate to seek attention. It can save your child's life, or as in the above example save them an unnecessary surgery.
December 14th Nicole had a very close call today. We were at
the Meijer store in Saint Charles looking at toys for the kids to put on their
list.
Nicole was looking at a bicycle helmet when she began shouting. I looked closer
and saw a fishing lure (three inch long with two three part hooks) partially
stuck in her hand almost up to the barb.
She shook it out before I could get her to hold still and it got stuck in her
coat. A pair of wire cutters, a band aid, and an incident report later we went
home.
I say it was a very close call because the lure was inside of the helmet and if
Nicole would have put it on her head, I am sure it would have stuck in her scalp
compromising her shunt.
A guaranteed 2 weeks in the hospital along with a minimum of two surgeries one to
remove her entire shunt system and to externalize her shunt Second to install a
new shunt system.
Then of course the daily culture tests to see if there is any infection. And the
pain of having a PIC line inserted
Not our idea of a fun way to spend two weeks with our daughter.
I am not upset with Meijer stores, it is impossible to control everything. I was
however a bit disappointed at the slow response and that fact that while we were present, nobody checked the area for more hazards
I wish I could have 5 minutes with the sadistic monster who's prank could have
cost a precious child her life.
Christmas 2004 Nicole had a great Christmas. She really enjoyed her special visit from Santa. How nice it was of him to take time from his hectic schedule to stop by for a special visit, in addition to his normal nighttime visit.
Of course Mom & Dad got the best gift of all. We got to see a smile on her face and we got Nicole for another year.
As always Please keep Nicole in your prayers
They really DO work!