10 Months Out

Grace's recovery continues. She still experiences headaches through the day that slows her down at times, but she remains committed to her school work and rehab therapies. November 19th will be 10 months from her surgery. Grace has re-learned how to walk in that time, go up and down stairs, and stand-up from a chair. The other day Grace fell--a constant hazard for the hemi. With only one hand to use it is difficult to stop a fall or brace yourself. We always try to be nearby and we have been fortunate in that Grace has only fallen twice since surgery. Grace is now learning how to navigate life one-handed including buttoning a shirt, typing on a computer, tying a shoe lace, preparing food, reading a book and everything else that you can think of. Grace can raise her left elbow to about shoulder height now. Through it all Grace retains her grit and determination as well as that sense of humor. Thanks again to the field hockey girls who raised $1,300 at the Goals For Grace fundraiser. I will post some pictures next time.

Schoolwork

We had a meeting with all the individuals at Grace's school that are providing assistance to her. Speech and language, OT, PT, teachers, special services, vision impairment, medical, and pychology professionals were all in attendance and working together to make sure that Grace is receiving the absolute best opportunity to achieve. We are fortunate to have so many dedicated people working with us and to be in the Darien School system. Grace's loves school and she is dedicated to doing her school work regardless of how long it takes. Grace continues to recover from her surgery and we are hopeful that she will gain strength. I continue to lay the groundwork for initiating research into Rasmussen's. There is an overlap between refractory epilelpsy and Rasmussen's that suggests that advancing our understanding of Rasmussen's would help our understanding of epilepsy. Refractory means that the disease does not respond to drugs and this is exactly what charaterizes the intractable seizures of Rasmussen's as well as certain types of epilepsy. There are several organization's devoted to epilepsy, but Rasmussen's for the most part is not part of the research effort put forth by these groups. The hemisphrectomy surgery is such a blunt response and I would like to see if there is more that we can do to have children avoid this type of drastic and life altering surgery.

Goal For Grace

Grace continues with her rigorous therapies. Five days a week she sees therapists that work on her legs and left arm. Sunday and Monday are her "days off" and on those days she is on the treadmill working on her gait and leg strength by walking without holding on to anything and walking "sideways." Additionally, Grace receives occupational therapy during school on her arm learning how to live a one-handed life and to also restore the use of her left arm. The arm in the hemis is the most difficult to get back. The dexterity of the hands does not return, the wrists usually hangs limp. Weight bearing is one of the keys to rewiring the brain, that is why walking returns and the arm is more problematic. If the hemis did the wheel barrel all day where someone holds the legs and then you "walk" on your hands eventually the arm would stengthen as the legs do from walking. Grace's exercises are becoming more rigorous as each week she gains marginal strength and recovery in her legs and torso. Amazingly, Grace does have seem to have some movement in her left wrist; that is from a lot of hard work. Grace's efforts continue to inspire and the girls field hockey fall program run by the Darien YMCA and supervised by Kelly Vegliante sponsored the Goals For Grace fundraiser. Grace visited the girls during one of their practice sessions, recieved a warm welcome and was given some T-shirts and bracelets that said Goals For Grace. Darien has a top notch girls field hockey program and it is due to their team spirit and the dedication of the participants and coaching staff. Grace and the girls share a common determination to beat adversity through hard work and dedication. Blue Wave Pride is truly inspirational!

You Gotta Have Friends

Progress is never achieved in a straight line, it involves setbacks and bumps in the road. This week was an example. Trips to the doctors, sleepless nights, early departures from school, and so on, but in the end we pushed forward keeping our eye on the bigger picture: we are in a better place then we were a year ago. I spoke to a father this week who is wrestling with the decision to have the hemisphrectomy surgery for his 8 year old daughter. He had tried an experimentral treatment that we had considered, but after six months it stopped working and the seizures returned. His daughter has already lost the use of half of her body. He is trying to get into Johns Hopkins for the surgery; that is not easily done due to the number of families with serious neuroligcal issues that are seeking Hopkins' expertise. My heart went out to him and I told him that unfortunately there are not many treatment options; I encouraged him to have the surgery. Grace's buddies came through again this weekend as they painted a local storefront with Halloween decorations. It is a great town wide event for the 6th, 7th, and 8th graders as they "compete" to paint the best decorations across the town's storefronts. Pizza for lunch capped off a fun morning. In December I will be traveling to Boston to meet with eight top neurologists who will be in Boston to attend the American Epilepsy Association's annual meeting. Traveling with me will be Cris Hall, co-founder of the The Hemisphrectomy Foundation. We plan to discuss how best to jumpstart the research efforts to find a cure for Rasmussen's Encephalitis. There are several paths that may be of interest such as starting a nationwide tissue bank, creating an animal model, or sponsoring a high caliber research conference devoted exclusively to Rasmussen's. Cris and I are both excited that we have been able to assemble some of the best thinkers in the field to determine our next steps for research.

Grace and Michael

Saturday was a great day. Grace walked out on the field with Michael (#30) for the coin toss as friends and family cheered her every step. The Friends For Grace were in action as well as Grace's friends worked the stands and a tent where they sold baked goods and friendship bracelets raising $2200 for the Foundation. Grace was absolutely ecstatic as these wonderful girls surrounded her the entire game with their love providing Grace with a real sense of normalcy. Topping off the day was a great Darien win; the team is now 3-2 and gaining momentum at just the right moment in their season. A 28 yard touchdown reception by Michael started the day game off right as he scored Darien's first points. We have two great kids and their worlds came together today for a celebration of Grace's triumph over adversity. Everyday we are fortunate that Grace's progress continues as the hemisphrectomy surgery does not guarantee a life without seizures. Thank you to everybody who made this day happen. Blue Wave pride lives on!

The Friends For Grace Strike Back

These are the fabulous Friends For Grace who came together last Friday to make the bracelets that will be for sale at the Homecoming Game on October 17th. Now this is what team spirit is all about! Thanks to Jill Walker and Karen Dunn for organizing this event and teaching our children what compassion is all about. See you at the game.

Holiday Cards/Team Grace

Go to http://www.hemifoundation.org/; click on Christmas Cards and then scroll down to Grace. That is original artwork done by Grace exclusively for the Hemisphrectomy Foundation Christmas Card Fundraiser. Order a package of cards for a worthy cause.

The Friends For Grace will be back in action at the Varsity Homecoming Game on October 17th (game time 2:30 pm). Two close friends of the Wohlberg Family, Jill Walker and Karen Dunn, are organizing fundraising activities during the game that will be “manned” by Grace’s friends at Middlesex Middle School. Grace’s buddies will be instantly recognizable by their Team Grace T-shirts. Friendship bracelets will be on sale and a bake sale will take place during the game to help raise awareness for RE. The fundraising activities by these girls are a continuation of the great town spirit and generosity that we have experienced ever since Grace’s diagnosis. Later today 14 girls that comprise Team Grace will be gathering to make the bracelets. Thanks again to one and all!

Grace will be walking in a local fundraiser this Sunday, October 11th for the JR Schoen Memorial Foundation. Come out and support the Foundation. Grace's physical recovery continues, she is now exercising on her dropped left foot without any supporting device. This is incredibly difficult and fosters the recovery of her left lower leg which is now atrophied and weak due to lack of use and weight-bearing. This exercise will improve her gait and allow her to wear a smaller supportive device over time.