Year 2008 in Review

2007 ended with the tummy flu while 2008 started with another round of the tummy flu. In January Lindsay donated 4,000 pop tops to the Ronald McDonald House near the University of Chicago Comer Children's hospital. Fayeth developed a corneal abrasion when a plastic strawberry was thrown in our playroom and Darren and I spent an afternoon in the ER getting that taken care of. We were also informed that our beloved plastic surgeon was leaving the U of C. During the month Lindsay also developed neurocog issues and severe headache and leg pain. The Twins turned 6. That same day Gabe was in the OR having a lumbar puncture done. Based on that Lumbar Puncture, Gabe was scheduled for his 1st shunt revision.

Gabe and Lindsay turn 6!

In February we learned that Fayeth had the potential to one day be a playboy bunny.

Gabe's pain was out of control (which has been the status quo for this entire year). We were scheduled for a shunt revision on February 20th. Before his shunt revision we saw Dr. McKinnon (our beloved plastic surgeon). Dr. McKinnon feels that we need to make Gabe’s head larger. In 3 years it has grown 0.1 cm. Based on his symptoms and his assessment we need to do this to hopefully assist the shunt in helping Gabe’s pressure become more tolerable. Dr. McKinnon was very shocked when we told him that Gabe was symptomatic at 10.5 and when they drained him to 5 he was good.

He told Gabe that this surgery was going to be the nastiest one he has gone through and the cranio surgeries are no walk in the park. The maximum expansion they can achieve with surgery is 1.5cm. That is due to the skin on the skull, that is all the “give” that it has. So the game plan would be to go through and remove the majority of the skull, fracture those bones and wire them into shape with gaps between the bones. Then attach wires to the bones and push them through the skin on his skull. They will then place him in a helmet and the wires will be coming through the helmet. For 3 weeks we will be responsible to increase the tension on the bone and the bone will gradually stretch the skin. Our goal would be 2.5 cm increase in the head circumference. After we complete those 3 weeks we will keep him in the helmet and let his head settle for 3 weeks.

6 weeks after the surgery he will go back to the OR for a bone graft. At the age of 6 your skull bone will heal itself, but it will not grown new bone to fill in the gaps between the bones. I believe they said that they will take a rib to harvest for the graft. Dr. Frim is not of the same mindset so Dr. M will defer to him.

At the RMH before surgery

Post op Shunt Revision

Less than 23 hours after surgery.

The hardware (compensating device) that they removed and replaced.

During that time we also discussed with Frim Lindsay's issues. He ordered an MRI for her of her head and brain. She was diagnosed with Chiari 1 Malformation on 2/29.

March brought an MRI of Lindsay's spine and of Gabe's head and c-spine as well as a CINE MRI. Gabe had a rough time recovering from the sedation for the MRI.

Lindsay at the RMH before the MRI

Lindsay at Comer Radiology after the MRI

Gabe at DCAM after his MRI

Lindsay's MRI shows that she has slight dilatation to the central canal. Which after talking with the veteran moms basically means that she is working her way to a syrinx. Dr. Frim feels that Lindsay has chiari-pseudotumor syndrome. We are well versed on the risks and contraindications to doing a lumbar puncture on a non decompressed chiari patient, but at this time he feels that it is necessary to get an idea of what her intracranial pressure is. If her pressure is elevated we will try Diamox and recheck her pressure. If that does not work then we will most likely have to decompress her and potentially follow up with a shunt. Based on her other symptoms (neuro/cognitively) he wants Lindsay included in a study for chiari patients. This study will include a neuropsych eval and will evaluate her neuro function pre decompression and post decompression. We are hoping that we won't have a post decompression eval. :) If Lindsay's intracranial pressure is not high then we will treat her symptoms with medication and monitor her with MRI's.

Gabe is Gabe. At the moment Dr. Frim feels that his shunt is functioning the best that it can. We are going to try to encourage him to lie down for 2 hours in the afternoon to see if his body can build up a tolerance and not have so many low pressure episodes. So our goal is not to mess with his shunt right now. :) However when we were looking at Gabe's CINE MRI (Flow study) it showed that he had adeqaute flow to his anterior brain, however posteriorly, he has very minimal flow. Based on his exam, Frim feels that Gabe's headaches are exhibiting the same what he did before decompression. We are going to see a new neuro and decide from there what we feel is best in terms of neuropathic meds. While they have not helped in the past I am not opposed to try them again. If that does not work he will need an exploratory surgery of his decompression site to look for scar tissue since it does not show well on an MRI.

Coloring Easter Eggs-Gabe

Lindsay

Hannah

Fayeth

You mean the Easter Bunny is coming soon!!!

I am an odd child!

April brought a new diagnosis of dysautonomia. We went to the ER with the thought that Gabe's shunt was broken. After 5 days they were able to get his symptoms under control and we could come home. We also had the production of Cinderella. Lindsay and Gabe were mice, Hannah was a pumpkin and Lindsay also was a bouquet. April also brought Lindsay a diagnosis of Pseudo Tumor Cerebri. She had a Lumbar Puncture and her intracranial pressure was elevated.

Lindsay, Hannah and Gabe

Lilly and Lindsay

Hannah

Lindsay as a bouquet

We also had a production as an outreach at East Chic ago Central. Our dancers danced with children from ECC.

Lindsay, Gabe and Fayeth

We also did a performance at one of the local nursing homes.
Miss Angela, Lindsay, Gabe, Alex, Donelle
Hannah, Carissa & Audrey

May brought Fayeth's 3rd birthday. She wanted a Cinderella party and Aunt Becca made her 2 cakes for her 2 parties.

I am 3 today!

My first birthday party. Aunt Becca made my awesome cake.

Gramma and Aunt Becca shoved my face in the cake. They are silly.

We also went to Wisconsin Dells and stayed at the Kalahari. It was SPECTACULAR!!! The resort itself was beautiful, the staff was awesome and we had NO complaints. On the way to the Kalahari Gabe was having horrible pain. When we got there, Darren went to the grocery store and Gabe lied down.

Fayeth (3)-Gabe & Lindsay (6)- Hannah (4)

After being there in the waterpark for a while Gabe started having worsening pain and the vomiting ensued. Gabe's shunt was hinky and we could not find a hospital that was close the the Kalahari that took both our insurance and felt comfortable caring for Gabe. A storm rolled in (Wisconsin has HORRIBLE storms) and we decided to medicate Gabe generously with methadone.

The following day Gabe decided to push through the day and we decided to leave early on Thursday and head straight to clinic. When we arrived at clinic they did an x-ray and a shunt tap. There was a clog in Gabe's shunt and they were able to make his shunt work (better).

Hannah-Lindsay-Gabe (mid May)

Fayeth's official Birthday party on Memorial Day

Lindsay's daisy troop collected and donated 61,100 pop tops to the RMH. (Thus far the total for Lindsay was 30,542)

June brought on of the most magical times of the year. RECITAL! Gabe and Lindsay did their Ballet/Jazz number to Grease Lighting and Hannah did her ballet number to Don't get lost in the crowd.

Lindsay (the sassy one)-Gabe-Hannah (the angel)-the day we had photos taken

We also got to meet up with our friends Ari, Sean, Micaela and Ari's nephew at the Children's Museum at Navy Pier.

Recital Night
Gabe escorting Lindsay and Alex to their seats

Hannah (on the far left) and Miss Angela.

Gabe and the Girls from Grease. Lindsay is on the Far Right

Hannah's Recital Tradition
Hannah falls every year at recital. Here she is with Miss Angela who during their number was able to get Hannah smiling and back dancing.

After Recital
Gabe, Hannah Miss Angela and Lindsay
(lots of pain hence the tears)

They also got to see the #17 Nascar. Matt Kenseth's car

Fayeth took a tumble at Hobby Lobby on 6/20 and ended up needing her eyebrow glued shut.

July brought Discover Camp. You can read about it HERE.

Our super spacious cabin.

Everyone who came to Discover Camp

Gabe and Lindsay at the Ronald McDonald House. Lindsay had ANOTHER LP the next day.

Darren also arranged for Gabe to meet his favorite Nascar Driver, Jeff Burton.
Gabe was able to meet him at the Brickyard and Gabe went to his first NASCAR race.

Gabe at his 1st Nascar Race. The Brickyard.

August brought our sweet Hannah's 5th birthday. Cousin Karley made Hannah's cake.

Hannah is 5!

September-Fayeth's first Dance Class.

October we went to NC and visited Aunt Paula. We also took the kids to Richard Childress Racing and Gabe got to see his beloved #31 car.

Ummm, okay so maybe not just the talent to be a Playboy Bunny, but maybe she will also model on top of race cars.

Gramma-Aunt Paula
Fayeth, Lindsay, Gabe, Hannah

Halloween. All 5 children.

Wisconsin Dells-Wilderness (won't stay there again)

Gabe-Lindsay-Hannah

November: Wisconsin Dells-Sponsored Dinner at RMH-Clinic visit with Frim-Thanksgiving-

On Black Friday Gabe danced at the Mall

All the Party Kids

December: Nutcracker- Daisy Christmas Party- Christmas with the Wilson's- Surgery for Lindsay (9 day stay in the hospital)- MRI for Lindsay- Christmas with the McGraw's- Christmas with my family.

Hannah and Carissa

Lindsay-Alex-Carissa

Lindsay-Gabe-Hannah

The Fan Club

Christmas at Aunt Janes

Lindsay and Baylie making a gingerbread house for Amanda while in Comer. Lindsay was having a drain trial done (she will have a shunt placed in January)

Ice Storm 2008

The trees that I have asked Darren (repeatedly) to take down this spring. We currently have a cracked window.

Our caringbridge page: www.caringbridge.org/visit/gabehartman