2009 has been a fun and exciting year. A year full of trials and tribulations. We have come through the year pretty much unscathed. Our family has become stronger and better for our journey.
January-
We rang in the new year with my mom. It was our annual fun party that we have finger foods and munchies.
Lindsay donates 50,000+ soda tops bringing her total to 87,872 soda tops.
January 17th the kids auditioned for Coppelia. Gabe was a Soldier Doll, Hannah was a Green Baby Doll and Lindsay was a Floppy Clown Doll.
Lindsay was scheduled for surgery on January 19th to have a foramen magnum-peritoneal shunt placed. That morning we got a call that Dr. Frim had food posioning and we had to cancel surgery. Later that day it was rescheduled for January 21st. The 20th it was canceled for the 21st. It was rescheduled 4 more times before it was set on February 9th.
January 28th, Lindsay and Gabe both turned 7 years old. We did breakfast brunch with Gramma & Grampa, Auntie Becca and Uncle Tom, Auntie Jane, Uncle Bill and Karley. It was a marvelous day.
February
We started the month with the annual Superbowl Party at our house. We had lots of fun with Aunt Becca & Uncle Tom, Uncle Bill & Aunt Missy, Gramma & Grampa, Billy, Eli and Leila. We had great soups and appetizers.
In February Lindsay also got her Beads of Courage up to date. Beads of Courage is a program that was developed to give chronically ill children a visible way to see what they have gone through. Each bead represents something that the child has gone through. Whether it be an IV stick or MRI or Shunt Tap. One of the AMAZING child life specialist at the U of C worked to help develop a program for the neuroscience kids. Lindsay and Gabe LOVE their beads. It is a way to tell their "story" without having to get out a notebook.
February 9th we arrived at the University of Chicago Comer Children's Hospital to have Lindsay's foramen magnum-peritoneal shunt placed and goes into ANAPHYLACTIC SHOCK on the operating table. She goes to the PICU for observation while receiving her epi drip to sustain her breathing and blood pressure. You can read about that HERE or HERE.
February 10th she got MORE beads.
February 23rd Gabe saw the Plastic Surgeon and it was decided that SOMETHING needed to be done to make Gabe more comfortable. Dr. McKinnon would discuss that with Dr. Frim and they would get back to me.
February 25th Darren and I took Lindsay to see the immunologist to decide how we would go about doing her surgery. He was a nice man, but he eluded to Lindsay that her "reaction" as we had called it was actually much worse that she was told by us. On the way home she said, "Mommy, Daddy....Did I almost died?" Eeeks... We told her would would discuss it at lunch and while we were having lunch we had a long conversation. I spoke with Shannon and surgery was set for March 2nd. She was THE only case that day.
Later that night, we celebrated my mom's 56th birthday.
Grampa was a slob. LOL
Lindsay continued to suffer and continued to have ill effects from the anaphylactic shock episode.
February 29th, Lindsay and Gabe and the rest of the Grease Performers performed at Leap Into the Arts.
March
Lindsay went back to the OR again. She was having her foramen magnum-peritoneal shunt placed. This time there would be no paralytic given since that is what she is allergic to. God Blessed us and my mom was with us the day of the surgery.
At the RMH
A little nervous and anxious waiting to go to the OR
Daddy did what he does best during surgery...Sleeps
In the PICU after surgery
On March 4th Lindsay got to meet Ronald McDonald. Normally he does not go to patient rooms but thanks to Mardelle and Lexi from Child Life, Ronald came to Lindsay's room to meet her.
Thursday March 5th we got discharged from the Hospital.
March 10th
Hannah and Fayeth continue to dance...
March 26th Lindsay and Gabe got more beads
March 26th, Lindsay got to meet Jaelyn for the first time. She is a little girl...JUST LIKE HER! Which is very rare to have 2-7 year old females with PTC.
March 28th and 29th Gabe and Hannah performed in the Crown Point production of Coppelia.
March 31st, after a phone call with Dr. Frim, it was decided that Gabe needed surgery to make his head bigger. You can read about that here.
April
4/2 Lindsay develops an allergic reaction on her head to the dermabond that was used to close her incision. We watch her head to monitor for her incision in case it opens up.
4/3 Dr. Frim still working on the details for Gabe's 3rd cranial expansion.
4/7 Told that Dr. McKinnon was having issues getting day privileges for surgery. I emailed the Chief of Surgery pleading our case on why we needed Dr. McKinnon.
4/11 Spoke with Chief of Surgery and approval was given for Dr. McKinnon to have day privileges.
We also dyed Easter Eggs
4/12 We had Easter at Gramma's.
4/16 Spring Ballet Production of Coppelia.
May
5/1 We finally got surgery date for Gabe's surgery. June 24th
5/3 Fayeth turns 4!!!!
5/5 Gabe has fallen a lot, Has increased symptoms. Developed left sides weakness and eye issues
5/6 Saw opthamologist. Gabe diagnosed with Central Scotoma.
Came home and began working on playset with Gramma & Grampa.
5/7 Completed Playset.
5/12 Hannah tries her hand at cutting hair!
5/12-14 At RMH visited with Friends. Fayeth had MRI then Clinic visit with Dr. Frim. Her chiari had herniated further she has a dilated central canal. She needs a sleep study to rule out nocturnal seizures. We also discussed Gabe's surgery.
5/20 Gabe continues to decline, others doing okay.
5/24 Fayeth breaks her right leg trying to coax Gabe into letting her give him a piggy back ride.
5/25 Lindsay, Gabe & Fayeth's birthday party. It is COLD! Gabe, Fayeth and I leave for RMH
5/26 Gabe has MRI, 3D CT and Shunt Tap. We found out Gabe developed a syrinx
5/27 Fayeth has orthosurgeon appt. We do NOT need surgery. She gets a baby blue long legged cast.
5/30&31 Gabe and Lindsay and the Grease Performers perform at Standing Room Only. It is a show with the IBT company and IUN dancers. The Grease performers are the youngest ones! :)
June
6/9 Was RECITAL!!! (The best day of the year!!!)
6/20 Darren turned 37! We celebrated with Gramma and Grampa and Becca and Tom. Becca made another one of her amazing creations.
6/24 Gabe had his 3rd surgery for Metopic Craniosynostosis.
July
7/1 Gabe was molded for his helmet.
July 2nd Gabe was discharged from the hospital. We stayed at the RMH.
July 3rd Gabe and I tried to head home. He started exhibiting signed of Chemical Meningitis.
July 4th Gabe and I made it home.
7/7 We made the trip to Ballert, Dr. McKinnon, Comer for X-rays
7/10 Another trip to Ballert & Dr. McKinnon
7/14 Yet ANOTHER trip to Ballert & Dr. McKinnon. We began the technique called Craniofacial Osteogenesis Distraction.
7/15-7/19 Went to Madison, WI with Kristen S. for the ASAP Conference. (Chiari Syringomyelia Conference)
7/19 Family Advisory Board Sponsored Dinner at the Ronald McDonald House.
7/20 Another trip to Ballert & Dr. McKinnon
7/25 Blisters at wire sites
7/28 Wire sites infected, wires pulled. Funny Store, read HERE.
August
8/5 Hannah turns 6 and Mommy is 35!!!
8/6 Lindsay has xrays, Shunt tap
8/8 Hometown Days Parade as soon as the parade was over we left for DISCOVER CAMP.
8/8-8/16 Discover Camp, Columbia KY.
8/11 HANNAH LOST HER 1st TOOTH!!!!
8/17 First time I noted Gabe's Expanding/Depressing head....
8/24 Bad visit with Dr. McKinnon. You can read about it HERE.
8/29 Hell Hath Froze Over... Mom and Pops finally got MARRIED!!!!
September
Gabe was invited to participate in the Jorge Posada Gala to raise money for craniosynostosis. Unfortunately due to a turn in Gabe's health he missed the event. It was a very sad time for Gabe.
9/4 We had dinner at the RMH for DANIEL's 21st birthday.
9/8 Lindsay had appointment with Orthosurgeon. She is fine, Gabe's pain is out of control. I take Gabe to Comer ER.
9/10 Gabe has Clinic with Dr. Frim.
9/11 We set surgery date for 10/5.
9/12 Nutcracker Auditions & my and Darren's 11th anniversary.
9/13 Parent's Meeting for Nutcracker and Darren and I celebrate our anniversary.
9/23 Fayeth has sleep study done at the U of C.
9/30 We found out Fayeth's sleep study is normal. :)
October
10/1 Gabe has MRI
10/5 Gabe has his 4th surgery for Craniosynostosis. PICU 10/5-late on 10/9, Comer 5 10/9-10/21. Gabe's skull was noted to have collapsed thus causing the 4th surgery.
10/29 Gabe post op clinic visit, Lindsay's shunt is leaking.
10/30 We carve pumpkins, Gramma does it in her own special way.
10/31 Halloween
November
11/4 Post op visit with Dr. Reid
11/11 Fayeth has appointment with Neurologist. Neurologist thinks that Fayeth has PTC.
11/12 Lindsay sedated for shunt tap then clinic, Gabe has a shunt tap in clinic.
11/17 FAB dinner downtown Chicago. :)
11/22 Land of the Sweets Brunch
11/26 Thanksgiving at my moms. We had some special guests.
December
12/1-12/5 Nutcracker
12/7 Mom, the kids and I hosted Dinner at the RMH. Lindsay donated another 185,370 soda tops. This brings her total to 273,242
12/17 The kids made a Gingerbread house for Gramma & Grampa.
12/19 Christmas with the Hartmans.
12/24 Christmas Eve at home with the family.
12/25 Christmas Day at home, that evening Mom/Pops & Becca and Tom come over.
12/28 Christmas with the Raysons.
12/31 A nice quiet day and party with the kids. WELCOME 2010!!!
