Run4Leah-CureNF

Adelaide Made a Difference!

Adelaide Manth (right above & left below), grandma to Leah Joy was laid to rest today, January 26, 2012 at the age of 73. 

At her service, her eight grandchildren lead the gathering of family and friends in a tribute by singing the song they often sang to their dear grandma, "You Are My Sunshine".  The NF2 community and Run4 Leah/Cure NF will sorely miss Adelaide's volunteer efforts and dedication to raising awareness for Neurofibromatosis.  Raffles, registration tables, golf tournaments, spaghetti dinners and Buffalo Marathon packet pickup and water stations are just a few of the places you could find Ade's smiling face and "ready to help" attitude.

It certainly won't be the same with out her, but she showed us all how one person CAN MAKE A DIFFERENCE!

NCIS' Abby Loves Leah's Costume!

"Pauley absolutely LOVED your costume! She had me take this pic for comparison. Very spot-on!", said Chris Walid, writer for NCIS and a Manth family friend from the NCIS set in California.  One day Leah hopes to make it out to California to meet Chris and Pauley in person!  Leah enjoyed her first week back at school and continues to recover from her surgery nearly 4 weeks ago.

Also in November, members of the Run4Leah Team completed the NYC Marathon in support of the Children's Tumor Foundation (CTF) who, like NF Inc Northeast, raises awareness and research funding for Neurofibromatosis.  Exceeding their fundraising goal of $12,500; Tom Mooney, Anne Patterson, Dan Patterson, Carol Flaherty and Deb Kavcik completed what for many was their first marathon!  Carol, a marathoning veteran, lead the pack finishing in 4:20, while running companion Stacey Oar finished up at 4:30 and the remaining group at 5:30. Simply fantastic.  Numerous training injuries ranging from knee & back issues to a concussion were overcome and all ran across the finish line and still had enough energy to go out and celebrate afterwords!

A great big "THANK YOU" to all of the team's sponsors and family members who supported many a long training run on weekends!

 

 

A Little Halloween

An update for all of our loyal Blog followers...

Since returning from the hospital Leah has been busy gaining strength and mobility/range of motion in her neck.  She was able to go to school for a short while to celebrate the Halloween Parade with her teachers and classmates.  On Halloween night, she even Trick-or-Treated for a few hours.  She was Abby from NCIS- the computer savy researcher with all the facts!

 

 

Happy to be Home!

Leah said good-bye to "wild & crazy hair" as the Doctor gave her the okay that her incision was healed enough to tolerate a shower.  To top off the day, you can see she enjoyed a visit from her teacher, Mrs. Silverberg, who surprised Leah with a cake showing a picture of her whole class wishing her well & a speedy return to school!  Very cool...

See Ya Hospital!

Leah heading home Sunday evening!

Day #4 Post-Op

Turned the Corner Saturday!!

Leah had a teriific day Saturday--No headaches and was able to take several walks, visit the play room and enjoy some short visits from her cousins, aunts & uncles.  Her appetite still hasn't come back and from the photo you can see her IV is still in, but she is getting stronger every day.  The hospital play room is all decorated for halloween and lots for pumpkins have been given silly faces by the kids.  If all continues to be good Saturday night and Sunday morning, Leah hopes she will be able to go home Sunday or Monday, at the latest!

Post Op - Day#3

Friday was up & down for Leah.  She was out of bed & visited the play room, ate a bit more but didn't drink enough and was put back on IV fluids to prevent dehydration. By mid afternoon she had developed a terrible headache that placed her back on the morphine and into bed.  After a good rest, she perked up by 8pm and was able to get a good night's sleep.

Saturday morning wake up report is good--no return headache and enjoyed a decent breakfast!  Looking forward to feeling better and being able to read more blog comments, play some cards and take a few more walks today.  If she can keep her fluid in-take up, the IV will come back out today.

 

Wild & Crazy Hair Day!

 

Day # 2 - Post Op

Making Progress!!

Leah is off the morphine and on some "lighter" pain meds and was out of bed twice today!  Once for a short walk and once to move over to sit in her chair for a bit.  Still not too comfortable and not happy with the "hospital routine", but eating a bit more, watching some TV and was very happy to see Christopher and Erin after dinner.

P.S. From Leah: Have a good night everyone and a very big "hello" to Meadow Elementary!!  My Dad rec'd the Jumbo Cards you made me today & he says he'll bring them in to show me tomorrow :)

 

Evening Update- Day #1 Post Op

The photo doesn't lie---

A tough day for Leah but some good news--  Leah was moved out of ICU this evening and hopes for a better night tonight.  Had a little bit of a chocolate chip cookie, but spent most of the day resting. Typically, day 1 is usually the hardest for Leah, as the anesthesia takes a little while to fully wear-off and she is on pain medication to keep her reasonbly comfortable, which can make her a little "out of it".

The comments have been wonderfully supportive and John & Linda hope Leah will be up to hearing some of them tomorrow.

A big THANK YOU for all the "best wishes" & prayers received!

Post - Op Day #1

A typical tough first day for Leah. Not much sleep, lots of pain and not happy at all. Apologize for the late update, John was with Leah at her post op MRI & is now waiting for Doctor update.

Will post more after dinner!
Keep the comments coming!