Run4Leah-CureNF

High Performance Boaters Throttle Up for Leah!

 

On August 12&13^th, the WNYOPA’s 25^th Annual Poker Run was held to benefit a local charity providing Lake Erie fishing and boating excursions to disadvantaged and differently-abled youth, as well as to raise funds to help defray the $20,000 cost of obtaining a service dog for Leah.   The Buffalo Poker Run has grown over the years and event Chair, Steve McKie and his wife Chris, have been avid Run4Leah/CureNF supporters for the past 9 years. They pitched the idea of taking on two charitable organizations this year and won overwhelming support from the WNYOPA and the Poker Run Committee.   Run4Leah/CureNF volunteers and the Manth family jumped at the opportunity to lend an extra hand throughout Friday’s registration at Buffalo’s premier waterfront location, Templeton Landing, and to share Leah’s story with numerous boat drivers and their crew members.

Leah & big brother Christopher

Ann Patterson, John Manth, Leah & Marybeth Shaw check out the scene at the docks

The sun was shining, the humidity was heavy and the marina was bursting with colorful high performance powerboats and their energized and very generous teams!

Some of the seventy high performance power boats participating in the event

The event was an overwhelming success, bringing in $7,000 through the Poker Run and another $14,000 through the private donations and raffles, all to bring Leah’s acquisition of a Hearing and Service Dog to reality!! We are overwhelmed by the generosity and energy of this group of boating enthusiasts including WNY natives and friends from as far as Florida and into Canada. We could not have done it without you! Leah has had several interviews with the placement coordinator at 4 Paws for Ability located in Ohio, the contract has been signed and the money has been paid, so we now await the birth of Leah’s service dog. Stay tuned to this blog, Facebook and Twitter for further updates!

We cannot thank the McKie Family and all of their friends at WNYOPA enough for making this dream a reality for Leah!

John, Linda, Christopher, Erin & Leah Manth receive the generous donation from Poker Run Committee Chair Steve, his wife Chris, and doaughters Megan & Maddie

Wrapping Up in LA!

Post-Op day 7, Thursday 8/25

2:30pm west coast time

Leah spent the past few days resting at the Seton Guest House next to the hospital. She is doing well for 1 week post op from a major surgery. She has some discomfort, itching and sensitivity to light and is still very tired, but getting stronger everyday.

Today she met with her doctors who think she is doing great. She is scheduled to get the stitches behind her ear out tomorrow afternoon. There are a few in her ear which our local ENT can remove in a few weeks.

Tomorrow morning we will be heading to the set of the hit TV show NCIS, to see the filming and studio and meet some of the cast. Our good family friend Chris Waild is a writer and producer for the show, some of you may recall he wrote an episode a few seasons back where NF2 was featured. It will be along day for Leah but she is totally excited for the experience.

We are scheduled to fly out on the red eye back to Buffalo Sunday night into Monday morning. If Leah feels up to it we will try to change the flights by a day to get home sooner.

 

A Special Day!, Friday, 8/26

Spent the morning on the set watching them film an episode of NCIS. Super cool. Mark Harmon and the entire cast & crew were super nice !! And Leah got to see Abby's lab and received a video greeting from Pauley Perette the actress who plays Abby.

 

 

LA Surgery, Post-Op Day 4,

Post-Op Day 4,  1:00 pm west coast time
Monday, 8/22/16

DISCHARGED FROM THE HOSPITAL!!!





Leah was discharged from the hospital and will be staying at the Seton Guest house for about a week  which is right on the hospital grounds.  She is still in some discomfort and very tired and in need of a lot of rest.  We will be hanging low for a few days while she gets her energy back.  Leah is sooooo glad to get out of the hospital and thinks she will be able to get more rest without so many interruptions throughout the night. She'll return to the hopostal at least twice before leaving LA for follow up evaluations and suture removal.

Thanks so much for everyone's kind thoughts and prayers during the past week. We will not be sending anymore daily updates unless needed.  

Have a good week,
The Manth Family

Post-Op Day 3 - Sunday Updates

Post-Op Day 3, Sunday, 8/21/16

9:15am, West coast time

Leah had a restless night as she had a very difficult time getting comfortable. Her neck is bothering her quite a bit, probably from the positioning of her head during surgery.  The medical team approved her wound dressing (head wrap) could be removed and they will leave it off to let air get to the incision site.  They also removed the drainage tube from her belly, so starting to feel a little bit more human again!  Her IV will remain in until she is discharged.  Leah was able to get out of bed, sit up in a chair and watch the last of the Olympic events. She even ate an entire bowl of oatmeal for breakfast!


5:45pm, West coast time



Leah's had a pretty good day, eating more and spending more time sitting up in a chair.  Pain is a little better and she was awake more than previous days.  Leah had a nice visit from Frank, Ellen and Elizabeth Waild who are old family friends from North Tonawanda who now live in LA.  She also had a visit from Summer, the therapy cat!!   All in all, a pretty decent day. 

Post-Op day 2, Update #2

Post-Op day 2, Update #2
7pm west coast time, Sat 8/20/16

Leah had a difficult day today, which is typical of the second day after major surgery.  She is uncomfortable and just feels crummy, however, she did manage another small walk.  We also took a break from the Olympics and found the Buffalo Bills preseason game on television. None of the staff knew what a "Buffalo Bill" was, but at least they won their game!  Her low grade temperature continued on and off throughout the day and both her head and jaw continue to hurt and cause a lot of discomfort. 

Let's hope tomorrow will be a better day !

LA Surgery, Post-Op Update, Day 2

 

Leah - Tough-in' It Out!

Day 2 Post-Op Update, Sat 8/20/16
9:20am west coast time

Leah had a low grade temperature all night and had a restless sleep.  Still extremely tired and her head pain continues. Occupational Therapy and Physical Therapy came in this morning and did some teaching. They got her out of bed and we did one lap around the nurses station.  Leah felt a little dizzy but her balance was pretty good.  Back in bed and sound a sleep now. Will update later this afternoon /evening.

 

LA Surgery, Post-Op Update, Day 1

Day 1, Post-op Update #2, 7:30pm West Coast Time, Fri - Aug 19th

 

Leah has had a BIG day today!

She had to get our of bed and walk a few yards --- reluctant to so in fear of intense head pain and nausea.  Nurses reassured Leah it would be okay and prepared her in advance by giving her pain meds and anti-nausea medication to increase her comfort level.

She was moved to a private room on a regular floor and is therefore out of the Intensive Care Unit (ICU).  Although still in pain and extremely tired, she is off of supplemental oxygen. Leah was a real trooper though and got out of bed for a second time for about 10 minutes!!  She tried to eat dinner but still does not much of an appetite (who would with that pile of potatoes!!). She just need lots of rest and some solid nights of sleep. Tomorrow will be another challenging day as both Physical Therapy and Occupational Therapy will work with Leah to get her walking more and assist with her improving her balance.  It will be another big day  on the road to recovery!

Have a good night everyone and thank you for all the positive thoughts, prayers and words of encouragement!!

Love, The Manth Family

 

LA Surgery, Post-Op Update, Day 1

Post-Op Update, Day 1, Friday, Aug 19 - 8am West Coast Time

Leah had a decent night in the ICU.  It was a rough start to the night, but improved a bit in the wee hours of the morning, and she and Linda were able to get some sleep.  As expected, her heads hurts considerably, she's nauseous and she'd prefer not to move!  Unfortunately, recovery goes better the sooner patients get up and moving and her medical team will have some lofty goals set for today.  The next few days will be a challenge for Leah, John and Linda as they get through the toughest milestones in her recovery.

 

LA Surgery Update #5

 

Surgery Update 5,
8:00pm West Coast Time, Thur 8/18/16

We know it is getting late but we wanted to send one last update tonight. Leah is resting in ICU.  Her medical team is managing her pain to keep her comfortable as she will be quite sore --her head, ear and even her jaw will hurt.  Additionally, she has a drain in her abdomen where they had to harvest some fat to fill in the mastoid area (behind her ear) with.

We all hope to get a few hours sleep tonight and will send another update late Fri morning after rounds/doctor visits.

Thanks again and keep the good thoughts and prayers coming for a smooth recovery!

 

LA Surgery Update #4

Surgery Update 4,
5:10 West Coast Time, Thur 8/18/16

After 9 hours of Surgery Leah is done. Things went extremely well. They believe that Leah should not have any additional paralysis on the right side of her face. They had to take out the cochlear and vestibular nerves, so as expected she will be completely deaf on the right side. The Auditory Brain Stem Implant (ABI) was implanted successfully. While we won't know if it is working until it is turned on when we return to Los Angeles in November, everything looks as good as it can be. We cannot tell you how relieved we are and how appreciative of everyone's prayers and support!! Our NF community and our family and friends ROCK!!

Leah will be taken to the ICU and we hope to see her in a half hour or so.

We will continue to update everyone during the recovery phase pm