Lindsay was scheduled for surgery February 10, 2010. At first I was going to go to the RMH on February 9th, but at a later date opted to just come up on the 10th. However this silly snow storm changed that and on February 8, 2010 I found myself taking the same route I took a year ago. We are in the same room we were a year ago.
Today it was hard not to want to wrap her up in bubble wrap to make her safe.
Tomorrow I will be sending her back to the OR. This time I will be by myself when she goes. I sort of think it will be easier this way.
Lindsay-becca.... I love you baby. Remember God is with you always...
Friday will be 4 months status post Gabe's 4th Craniosynostosis surgery. Of course this is the child that should have only needed 1 surgery. Yep... That is him. :)
Gabe-May 2009 1 month before Craniosurgery #2
Gabe-October 2009 14.5 weeks status post 3rd cranio surgery. Going in for Cranio surgery #4 this day. You can see the "lump" just in his hairline and how is sinks down. This was 1 place where his skull collapsed.
Gabe-January 29, 2010. Almost 4 months status post 4th Cranio surgery. Don't let the above picture fool you. We still have Good Days, Bad Days and Horrible days. Our bad days are now so manageable that we still consider them Good Days. We have horrible days weekly, but our Good Days out number our horrible days. THAT is success. I have noticed that Gabe is more sensitive to barometric pressure changes. And he seems to be accomodating to a low pressure much more quickly than before. But we have a ways to go before we are bottomed out on our shunt. We do know that he will need at least 1 more surgery. We will go as long as we can before doing it again. We had an MRI a couple weeks ago. Things look good in his skull. However his brain GREW another 130 cubic millimeters. At this age the brain should not be growing. Things are cramped a bit in his skull, but this is not the time to worry about it.
We are taking the time to appreciate our Luck. Dr. Frim told us going into Gabe's Surgery in June that there was no documentation to show how Gabe would respond to his head being made bigger. He was pretty sure that we were going to make him worse. He was honest with us and told us that. He said if we chose to make his head bigger that it would be a Leap Of Faith. I am so grateful that Dr. Frim was up to the challenge to take that Leap of Faith.
I have my little boy back. He runs and plays and *I* nearly have a heart attack when he almost bumps his head on anything (since we still have huge holes in his skull). It is so nice to be able to talk to him and have him remember what we spoke about. It is nice to not to have to feel like living with Gabe is like 50 first dates or ground hogs day. We still have those days when his pressure is high, but it is not every day. He still has neuropathy and we use a wheelchair when we have to do any significant walking or standing. But he is outside living again.
I have come to accept that fact that MY normal is not other people's normal. I have come to accept the fact that Gabe will always have some degree of pain, but when we can manage that pain with Tylenol or Motrin and not methadone, loratab and antidepressants (used for nerve pain) that we have improved. Gabe will never be allowed to play football or soccer. We will always have a shunt and chiari symptoms. We will need another 1 (or more) cranio surgeries and that is all a fact of life. I have to embrace that. This is the journey that we are on. I am not sure why we are on this journey, but it is not mine to question. God has given me the strength to get through the dark times when I "just know" I could not get through them. He has put people in my life to help me walk this journey.
My amazing children walk through this journey, not knowing any better and accepting what they have been given. They are strong and brave. They push through and survive and succeed at whatever they set their minds to. They might have more pain when it is over or it might take them longer because they have to stop to rest... But I look at them and realize that somehow along the way, they have learned to be strong, graceful and brave. I do not believe that I can take credit for that. God must have come to them and touched them while they slept to teach them this lesson. It is a lesson that I and so many others struggle with.
I am so blessed. We are all so blessed. We have our children to hold onto and hug.
My mom took Gabe to ST and OT today. The OT came to talk to my mom about how conscientious Gabe is and my mom shared the story with the OT that Gabe comes by it honestly since his mom would stay in at recess to make sure that her work was done completely and correctly.
Gabe: My mom went to school here?
Gramma: Yes Gabe. So did Auntie Becca and Uncle Bill.
Gabe: Wow! That is an old school!
Gramma: Even (Great) Aunt Paula went to school there.
Gabe: WOW!!!! That is a R-E-A-L-L-Y OLD SCHOOL!!!!
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.
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!!!
I am a stay at home mom to 4 amazing homeschooled kids. Lindsay and Gabe will be 7 (1/28/02), Hannah is 5 (8/5/03) and Fayeth is 3 (5/3/05).
Our children have a range of medical issues, but that just makes our family that much more fun. :)
