GRACE WOHLBERG BLOG

Blog Update

2010-07-08T23:13:00.001-04:00

Please follow us at www.rechildrens.org/blog and join the RE Children's Project Group page on Facebook.

New Blog

2010-04-05T16:24:00.002-04:00

The new blog is up and running at www.rechildrens.com/blog

New Blog

2010-03-25T15:23:00.001-04:00

I will be starting a new blog at www.rechildrens.com/blog within a few weeks.

RE Childrens Project/Last Entry

2010-03-19T22:10:00.000-04:00

We will be home heading early tomorrow and I would like to thank everybody who has helped us get through this most difficult period. Grace is not that well and still very much recovering. There have been so many people that have been so kind to our family that similar to an Academy Award speech there are too many people to recognize and thank, but nonetheless thank you. Hopefully Grace's journey will take us on a more positive path, but that will take months and years to unfold. Rasmussen's Encephalitis is a a rare and devastating disease. There are something like 100 to 200 reported cases a year worldwide, yet RE captures the intellectual imagination and curiosity of many scientists. RE is uni-spheric, that is it affects only one hemisphere of the brain and it mostly strikes children. The cause is unknown. Is it auto-immune or viral, or both? Arthritis is auto-immune, but it strikes both sides of the body and is marked by multi-generational occurrences in families. Yet, RE is marked by intense inflammation (encephalitis) in the brain, a trait of auto-immune conditions. Perhaps an unknown virus penetrates the protective layer around the brain called the blood brain barrier and triggers an auto-immune attack? We do not know...at the moment. In October about 50 scientists will be converging to attend the first conference devoted to finding a cure for RE. This group will not only consist of neurologists and neuro-surgeons, but also include experts form immunology, genetics, multiple sclerosis, and basic science. The conference will be focused on bold and fresh ideas to jumps start new directions in RE research. These individuals are traveling from all over the globe to participate and include scientists from Germany, Italy, England, Australia, and Canada as well as the leading thinkers in the US. About 10 of the participants are accomplished younger people will be the next generation of doctors to lead the way towards a cure. This conference is being 100% funded and supported by your donations to Friends for Grace Foundation and it successor organization the RE Childrens Project, as well as our personal funds. It will take place in Deer Valley, Utah on October 6-8th. This will be my last blog entry on this blog as 100% of my efforts will now be focused on the RE Children's Project. Please visit the website at www.rechildrens.com. That website is in its infancy and will expand and grow to include a blog as well. We need to raise $3 to $5 million to make an initial difference in RE research over the next few years to attract and keep the attention of the best and brightest. We have their attention now; our task is to maintain that focus. If we can crack RE we will crack many other difficult seizure disorders. If this is your first time visiting this blog please scan it in its entirety as I have written a great deal about our experiences from our initial diagnosis through two brain surgeries at two of the leading centers in the US, Johns Hopkins and UCLA. Thanks again to everybody.

Discharge

2010-03-18T15:12:00.002-04:00

We have left the hospital. Grace is very wobbly and still experiencing pain, but we are making the best of it. From top to bottom the pictures are Dr. Mathern, the neuro team, Dr. Raman Sanker, and Ron, Grace's tutor. It is a beautiful day in sunny LA and we are hoping that tomorrow Grace will be up for a some kind of outdoor activity. We are all glad to be back in our cozy apartment and looking forward to going home.

Winding Down

2010-03-17T19:33:00.002-04:00

We have been moved across the hall from the ICU to the pediatric floor. It is much quieter here and we have our view again. It is a beautiful day; bright sunshine in the mid 80s. There was a 4.5 earthquake here two nights ago in Los Angeles, but we all slept through it. Grace is free of all lines for the first time in a month. She is sleeping a lot, but feeling a little bit better everyday. She still is experiencing headaches and dizziness, but that is to be expected. OT and PT came by today to get Grace moving again, not an easy task. A tutor has also stopped by and Grace reviewed her social studies and math homework. Understandably, she is not in school mode at the moment. We will be discharged tomorrow and depending on how Grace's feels we may try to get out on Friday to do something in LA. We are looking forward to the trip home, it will certainly be an adventure. We are so grateful to all of the people at UCLA, they are all first rate individuals. We especially would like to thank Dr. Gary Mathern, our neuro-surgeon who performed Grace's surgery. He is a nice person and a great doctor

Back Nine

2010-03-15T21:01:00.002-04:00

Grace is now free of all lines and we are slowly getting her up and out of bed. She still has headaches and pain, and it will be awhile until she is 100%, but we have been cleared for discharge this Thursday. Our plan is to then fly home this coming Saturday. Grace is very weak and has lost a lot of her mobility the past three weeks. She has a great deal of PT/OT ahead of her, but hopefully the seizures are over her and the next few months she will be able to really benefit from her OT/PT sessions. We are also optimistic that she will have a stronger recovery because her anti-seizure meds have been significantly reduced. We are all ready to head back east and face the rain, snowstorms, school closings, lack of power, and be in our own home.

Sunny California

2010-03-14T00:07:00.003-05:00

Christine left today and headed back to the deluge on the east coast. She was a huge help and Grace loved her company. We had another gorgeous day here in California, but unfortunately we are not here to enjoy the weather. Most of the day is spent in the hospital and our ICU room does not have the wonderful view that our previous set-up had. It is difficult for Grace; we are in a holding pattern and she will not really feel better and heal until she can move around more freely without the lines in her head. The doctors may clamp the lines tomorrow evening to see if her spinal fluid is properly draining internally. If so that will be a big step forward. The neuro team is dropping Grace's anti-seizure meds post surgery to a more tolerable level. We heard that the Lifting Grace event was a big success. Thanks again to our extended Darien football family!

Brain Drain

2010-03-12T22:44:00.002-05:00

Grace has a tube in her head that drains cerebral spinal fluid which is then replaced. She cannot leave the ICU until it is removed. It will be removed when a certain protein level in her blood becomes low enough to allow her head to be sealed. One out of four hemi surgeries develops hydrocephalus, an abnormal accumulation of fluids around the brain that leads to swelling and requires shunt surgery. Shunt surgery is not considered major surgery, but shunts are problematic at times and are never removed. Shunts are an internal drainage system between the head and stomach. Once the tubes are removed from Grace's head we can then determine if a shunt is necessary and begin to arrange for our return trip home. We are in the early stages of arranging additional physical and occupational therapy for Grace when we arrive back home so that she can regain the limited mobility that she had. Thanks for all of the cards and letters. Every night we do mail call and go through your letters. Grace loves it. She misses home!

Slow Go

2010-03-12T01:23:00.001-05:00

Grace is slowly improving. She still has a drain in her head which needs to be removed before we can step down from the ICU. Within the next few days the staples will be removed from her head. Her strength is down and her legs are wobbly. She is facing an enormous amount of work to regain the limited mobility she had prior to surgery. We are hanging in there. Christine Hughes is now here, Grace's Aunt, who always brings a smile to Grace. We are impressed by the UCLA team, they are first rate.

A New Day

2010-03-09T20:43:00.002-05:00

Grace had the dressing removed from her head today which provided some relief. She unfortunately still has a drain coming from her head and IV lines in her that are quite bothersome. She continues to slowly improve and each day receives less pain medication. The doctors are pleased with her progress and said that patience the next few days will be key. We are holding steady. The weather in LA is great. The next few days it will be in the 70s and bright sunshine. Thanks for all of your cards and letters. We read every one of them as well as your blog comments.

Tough Times

2010-03-08T22:51:00.001-05:00

Grace is not herself; she is in pain and under the influence of too many drugs to count. She has had it with hospitals, doctors, lines in her head, being incapacitated, and intense pain. Looking forward to better days.

Grace Recovering

2010-03-07T11:53:00.004-05:00

Grace is in pain and not really herself, but she is on track as far as her recovery goes. Yesterday she sat up in bed for the first time and today she will most likely be moved to a chair to sit upright for a few hours. Over the next few days she will have the lines removed from her body, the staples removed from her scalp, and have her pain medicine reduced. She is beginning to eat solid food again and watch a little TV. Friends continue to stop by and brighten our day. Sheila's brother, Jay stopped by to say hello as did Ernie Johnston whose sister and family,the Lammerts live in Darien. Jack Devita also visited for a few hours. It will be a month or so before we really know if the surgery helped Grace, but we are hopeful and so far there are no signs of any seizure activity. Everyone is excited about the Academy Awards tonight. The locals think The Hurt Locker gets best picture. Many thanks to all of you for your thoughts and prayers.

Day After

2010-03-05T23:03:00.000-05:00

Grace is pretty miserable, but this is to be expected. She is in a lot of pain and is on constant pain medication. She is eating jello and some froyo, and tomorrow will be allowed to eat solids. She is receiving great care in the ICU as there is a 1:1 ratio, one nurse for every patient and Grace has her own nurse 24/7 to look after her. She is running a slight fever which is also expected and her face is beginning to swell. Dr. Mathern rounded today and he was pleased by her progress. We are so fortunate to have great friends to help us out during this difficult period. Sheila Clancy arrived to relieve Ellen Loguidice yesterday and Jack Devita stopped by to spend the day with us. I hear the Lifting Grace event is gathering a head of steam as Darien Blue Wave pride rises again to the occasion again showing one another what a great town we are blessed to live in. Thanks for all of your cards and letters; Grace loves to hear them read to her.

Grace In The ICU

2010-03-05T02:00:00.002-05:00

Grace is now in the ICU. It so difficult to be a parent at this time. Her head is bundled and she has 6 different lines going into her body. She was in great pain tonight and she was receiving all kinds of pain medicine. She will not remember these days, but they are so tough as we try to soothe her and hold her hand. It is not a pretty picture and over the next few days she will experience significant swelling. We have a rough few days ahead. Most hemis develop fevers a few days after the surgery, no one is sure why this occurs, but it does seem to subside. Thank you to everybody from all over the world who have prayed for Grace and supporting my family. Deb is on duty this evening in the ICU and tomorrow I start my tour of duty. Our close and dear friend Sheila Clancy arrived today to provide assistance through the next few days.

Grace

2010-03-04T17:47:00.001-05:00

They are closing Grace up. She will be out of the OR in about an hour and a half. The neuro-surgeon, Dr. Mathern came out and met with Deb and me. He removed and disconnected additional parts of Grace's brain tissue including the insular cortex and was very pleased with the outcome. We have a tough week ahead as the post recovery is not easy. Before the removal of the tissue they did a detailed analysis called neuro-mapping where they attached electrodes directly to the brain to identify and confirm the source of her seizures. Time will ultimately tell if Grace is seizure free, but we are hopeful. Thank you Dr. Mathern and UCLA.

Surgery Started

2010-03-04T12:40:00.002-05:00

Grace went into surgery at 7:30 am sharp. She took in her favorite stuffed teddy bear named Slumbers. Not one negative word or complaint from Grace, she is strong.

Day Before

2010-03-03T22:48:00.004-05:00

We enjoyed a beautiful California afternoon today. First we stopped for lunch to get Fro-Yo (frozen yogurt) which was delicious. Grace wanted to see the Hollywood sign and we drove off to Hollywood. On the way we passed the site of the Oscars and the red carpet was being rolled out. After seeing the sign we went to the Santa Monica Pier where Grace got to hold a parrot and go in the arcade. Afterwards we stopped in the 3rd Street Promenade for a refreshment and headed home for some pizza and Mexican food. The surgery is scheduled to start at 7:30 am PCT and is scheduled for 8 hours. We are told the time is variable and may be more or less. We will be at the hospital at 5 am. Grace is unbelievable.

Friends

2010-03-03T01:09:00.004-05:00

Grace felt well enough today to be released from the hospital. She has not retched or regurgitated in over 24 hours. We went to our apartment and kicked back with two of our dear friends from back home, Ellen Loguidice and Darrell Muessner. They were a huge help with Grace. We ordered for home delivery an afternoon pig-out of chicken wings and played cards. It was great to get Grace out of the hospital and to see her feeling better. One more day and then surgery. We checked out the ICU today where Grace will be for probably a week. Not much space in these rooms and only a pull-out chair for sleep accommodations. Been there done that.

Informed Consent

2010-03-02T01:44:00.004-05:00

Grace is still in the hospital this evening. We are hoping for a discharge tomorrow; she is on the most drugs that she has ever been on. She takes 15 to 20 pills a day and has received additional drugs intravenously. It is quite sad. We met with Dr. Gary Mathern today; he is Grace's neuro-surgeon. He reviewed the entire operation with us and the risks of the surgery versus not doing anything. We sat in a room with a computer screen and he called up multiple pictures of Grace's brain and showed us the evidence that they have accummulated that pinpoints her issues to a part of the inner brain called the insular cortex. It was partially left untouched in her first surgery and it is still connected to her left side. It will be removed during the surgery. There are obviously no guarantees as to the outcome, but we believe that the surgery is our best shot for Grace to resume some kind of "normal" life. Dr. Mathern does a lot of redos and we have great confidence in his ability. We have heard that Blue Wave Pride is alive and well and that there is another Lifting Grace Lift-A-Thon in the works. We are very grateful to Rob and Marj Trifone for organizing this event and raising funds and awareness for RE. Michael is ready to go and will be lifting. The money raised by the event will go to the RE Children's Project (RECP); a charity that I have set up to raise funds to support research for RE. The RECP will be sponsoring a research conference in October that has already had experts from around the world commit to attend the conference. I have also been asked to participate in a group being assembled by the American Epilepsy Society that includes top people in the field, knuckleheads like me as well as Government officials from the National Institute of Health that will address how best to solve epilepsy and related diseases such as RE that are characterized by incurable seizures. Please help me make a difference and donate whatever you can afford to the RE Children's Project. Grace's surgery is scheduled for 7:30 am PCT this Thursday.

Staying Put

2010-02-28T22:00:00.002-05:00

We were not discharged today. Grace experienced bouts of regurgitation that started in the early am hours and lasted around mid-day. Meds were jacked up and some had to be given intravenously, but she has not had an episode since the early afternoon. We are hoping for a discharge tomorrow to let Grace breathe some fresh air for two days before being readmitted for surgery. We are told that the recovery will take 2 weeks. Tomorrow is the meeting with the neuro-surgery team.

Surgery

2010-02-28T00:49:00.002-05:00

We consulted with the UCLA team and we are moving forward with a second surgery for Grace. The surgery will take place on Thursday, March 4th at 7:30 am PST. We have a meeting with the neuro-surgeons on Monday with Grace and we decided to tell Grace today about the surgery. Think about the tough conversations you have had with your kids; this one was another for us in what seems to be an unending series of difficult conversations. Grace takes it all in stride, but in a weak moment she just says I want to go home. She loves receiving your letters and postcards, especially from her friends at school; keep 'em coming. Grace had an MRI today and had the leads removed from her head. We had a visitor today from home and that brightened our day. Tomorrow we will be discharged from the hospital for a day or so of rest before being readmitted for surgery.

2010-02-26T23:41:00.002-05:00

Grace began to experience seizures in the early hours of the morning and she continued to retch and regurgitate through the morning hours. At that point the neurology team had recorded enough information and Grace was knocked out via an intravenous drug. The neurology team reviewed the EEG report and stopped by Grace's room in the late afternoon to discuss their findings. The news is that the seizures were all emanating from the right side and were consistent with the PET scan findings that a portion of the insular cortex was the origin of the seizures. Tomorrow Grace will have the leads removed from her head and will then undergo a brain MRI. On Monday we will be meeting with the surgical team to review the issues and risks regarding an additional surgery.

Waiting....

2010-02-25T21:59:00.004-05:00

We continue to lower Grace's meds and await for her seizures to kick-in. This is a very tricky business; a month ago we could not get control of the seizures and now we are drug levels that Grace was initially on a month after her first seizure in June 2008 without any noticeable effect. When we came to UCLA Grace was on three anti-epileptic drugs (AEDs) and now she is only on one drug. The upside is that Grace is a lot clearer-minded now that the cloud has been lifted from the drugs. We did not see any movie stars today, but we were allowed to go to an outside terrace and let Grace get some fresh air. That was a nice change. In Grace's lap is the pouch in which the wires from 25 electrodes on her head come together and and are hardwired into a computer that is just out of the picture. We met a redo (two surgeries to control seizures) today; a family from the midwest; a 7 year old boy post surgery that is doing well. Pictures don't lie and I need to lose 10 lbs in a big way. Not going to happen here.

The Stars Turn Out For Grace

2010-02-24T19:49:00.004-05:00

Our good friend Reese Witherspoon stopped by to say hello to us. It was great to see her, she is a very nice individual. We are continuing to taper Grace's meds lower to register her seizure activity on the EEG. It is interesting that it takes a certain level of meds to contain the seizures, but once they are contained it is rare that the meds are reduced to a more sustainable level. This appears to be the case now as we continue to lower Grace's meds without effect to date. We know there is some delay to these changes so at some point the seizures will return. The results of the PET scan are in and they did reveal an area of seizure activity in the insular cortex, a part of the inner brain that was only partially removed during her first surgery. That area would be an area for additional surgery. By the way, Reese Witherspoon is not a good friend, just a wonderful person doing a good deed by visiting the pediatric wing of the hospital. It was a thrill to meet her; she has two children around Grace's age and she was just perfect with Grace. I asked the staff to see if Angelina and Brad could stop by tomorrow.

We Love LA

2010-02-22T18:22:00.006-05:00

The pictures show the view from our room. Grace has picked out the three palm trees as her favorites. Grace spends most of the time in her bed, but she does like to move to the window to read her book and look at the activity in the fraternity and sorority houses. We have begun to taper her medicines down to elicit seizure activity. Grace had a PET (positron emission topography) scan today. The PET scan is an imaging technique that provides a color coded image of the brain's functioning rather than its structure. Next up will be an MRI. All of these tests are being done to isolate the parts of the brain where Grace's seizures are emanating from. This not an easy task given the removal of her brain during her prior surgery which changed the inner architecture of her head. The electrodes on her head are at times "confused" given the distance on the right side between her skull and the remaining right side of the brain. This complicates the interpretation of the test results. The issue is whether a small piece of tissue that remained in the front ride side of her head is still "connected" or is a deeper part of the brain that was left untouched on the right side causing the seizure activity. Finally, there is the doomsday scenario that Grace's seizures are emanating from the left side. That would be known as bilateral presentation of Rasmussen's, an extremely rare occurrence. Given our experience at Hopkins it will be another day or so before Grace's feels the full impact of her lowered medicines.

Settling In

2010-02-21T20:41:00.001-05:00

We are checked into the hospital and Grace is wired up undergoing a video EEG. Tomorrow Grace will receive a PET scan, The flight out was uneventful with Grace sleeping most of the flight. Some extraordinarily nice people arranged for Grace to take a limousine from LAX to our apartment in Westwood Village. Grace loved that. The UCLA Ronald Reagan Medical Center is a brand new facility and we have a nice set-up in our room. Although we checked in on a Sunday we did briefly meet the neurology and neuro-surgery teams. The weather in Los Angeles is a nice change from the northeast. It is in the 60s during the day and around 50 at night. Grace as always in hanging in there cracking jokes with all of the doctors that come through. Within the next day or so her medicines will be tapered to allow her seizures to be more prominent.

Hilgard House

2010-02-17T11:23:00.007-05:00

We are getting ready for a big plane ride and trip to the West Coast. Grace will be evaluated by the neurology and neuro-surgery team at UCLA. Similar to Johns Hopkins, UCLA has an excellent and experienced team in epilepsy and hemisphrectomy surgery. Within the next day we will tell Grace we are heading to California for additional testing.

We will be staying at the Hilgard House in Westwood, California. The address is:

Grace Wohlberg/
C/O Seth Wohlberg
927 Hilgard Avenue
Los Angeles, CA 90024

As stated in the previous entry please send only postcards and letters. We request that if you are considering sending a gift, that a donation be made instead to the RE Children's Project. Below is a draft logo for the Foundation. We are still tweaking it a bit. Thank you to everybody who has helped our family get through this difficult situation. Keep those prayers and positive thoughts flowing!

Getting Ready To Leave

2010-02-14T15:07:00.003-05:00

We are finalizing our plans for our trip to UCLA. We will be departing in a week. I will be posting our mailing address in California within the next few days. We ask that you send only letters; Grace loves receiving postcards from anywhere. In lieu of other gifts we prefer that a donation be made to the RE Children's Project Inc. The RE Children's Project sole purpose is to fund research to find a cure for RE. I have been working full out on organizing a research conference focused on RE. The conference dates are October 6th-8th and the venue will be the Montreal Neurological Institute; the organization where Theodore Rasmussen dedicated his life's work to neurology and where he first recognized this devastating disease. During this process I have contacted many experts from around the world and my task at hand is to convince them to get in a room together to advance our understanding of RE. I have made significant headway, but it is not an easy assignment. Below is an e-mail I received a few days ago. The only thing I changed were the names. It speaks from and to the heart. RE is a wrenching disease.

Hi again Seth

My daughter, Rachel, will be 28 in a couple of weeks. She had her first hemispherectomy in 1997. She was 15 and it was her decision (She had to sign the papers). It was hard for a teenager to do. Her seizures continued and she had a second hemispherectomy in 1999 – they thought they had missed something. Both operations were functional hemispherectomies based on the Rasmussen protocol. Her seizures continued and debate continued on the Montreal vs Johns Hopkins approach. They decided to end the controversy and do a complete hemispherectomy. That was 2004. In the ensuing weeks she developed an acute hydrocephalus and had to have a shunt put in. It has been difficult to regulate and she developed subdural hematomas on a couple of occasions. She has been declining since.

In addition to the surgeries she also did IVIG, plasmapheresis, ketogenic diet and pretty well every anti-epileptic medication both on the market and still being studied. She has also been the study of a lot of Brenda Millner et al research in neuropsychology. She is one of the rare left hemis that had normal emotional maturity and who could participate fully with researchers. She is one golden guinea pig, believe me!

But she is also our golden girl. She has been fully aware of everything all along, despite her aphasia and inability to read since the surgery. She is a very engaging lady with incredible patience, insight, and maturity. She volunteered in a nursing home and had been a wonderful spark in the lives of the residents. I still volunteer and take her along, but she is no longer to able to participate. They talk about dementia with RE. I believe we are now starting down that road.

Our hands our full, but so are our hearts. We are a very positive family. Rachel has brought so much joy to so many people – and has touched so many lives with magic. So while I’m a busy lady, I owe it to other families with RE to help out all I can.

My biggest interest, besides the registry, is to find data on the 25% failed hemispherectomies. How many of those kids have died and why, how many still have seizures and why. Not many would show up at a hemi conference, I’m sure!

So, yes, I’d sill like to help out in some way.

Mary

Road Trip

2010-02-11T09:25:00.003-05:00

After seeking advice from other neurologists, neurosurgeons, and epitologists we have decided to seek a formal second opinion from UCLA in Los Angeles, California. We will be traveling to California in about a week for a consultation and evaluation. UCLA has a top notch team consisting of world class individuals. We have not told Grace of our plans and we will hold off until a day or so before our departure. This will not be an easy trip, but we must decide if surgery is the best route to achieve a better outcome for Grace. We are finalizing our plans for the trip and will let people know where we will be staying.

Decisions

2010-02-04T22:04:00.002-05:00

Grace is being loaded with additional drugs without much effect. Additional surgery is becoming a clearer choice. We are in the process of getting second and third opinions as to our next steps.

Heading Home

2010-01-28T19:46:00.003-05:00

Grace was released from the hospital tonight. We will be traveling back to CT tomorrow. We face an uncertain future, but Grace is hanging in there and is rebounding on increased meds. The staff and doctors at Hopkins have been great to us and unfortunately the odds are we will see them all too soon again.

Options

2010-01-27T14:20:00.002-05:00

Grace's MRI on the left side showed no sign of atrophy. For the time being the working hypothesis is that Grace's problems stem from the remaining tissue on the right side. Grace is not doing well as she has been experiencing a great deal of seizures. She is now receiving her meds intravenously and this should help her rebound a bit more swiftly. We are faced with 3 options: 1) increase her seizure meds 2) try immunological treatments such as rituxan or IVIG and 3) additional surgery. All three are on the table and in a sense we will following a parallel course as we prepare for all three options. Hopefully we will be heading home soon. I continue to work on arranging a research conference for Rasmussen's. I have been in touch with 40 of the world's top guns in neurology, genetics, and immunology. Many have expressed interest, but it will be a big do to get these folks in a room together. Many of the docs inquire about the dollar signs that stand behind my efforts and that are available for funding future projects. More on the conference as it takes shape.

MRI

2010-01-26T19:46:00.002-05:00

Grace's electrodes have been removed and she underwent a brain MRI today. The doctors will now review the EEG readings as well as the brain MRI in an attempt to determine what part of the brain Grace's seizures are occurring. We have increased her medicines after having reduced her dosages to register the readings on the EEG.

Hanging Out

2010-01-24T21:03:00.002-05:00

We are in the EMU (epilepsy monitoring unit) and Grace's medicines have been reduced to elicit seizure activity that can be captured on an EEG. The purpose of the EEG is to identify the location within the brain that is producing the seizure activity. This is critical to how we will proceed and what treatment options are available. In Rasmussen's cases we are told that approximately 80% of the hemi surgeries are successful; success defined as seizure free. We are not in the 80%. Some of the unsuccessful surgeries are operated on again if it is determined that the remaining tissue can be safely removed. This is known as a "redo." As disappointed as we are that Grace's surgery did not render her seizure free, we are hopeful that the seizures are emanating from the tissue that was left behind in the right side of the brain. There is a debate among neurologists if Rasmussen's is bilateral and if it can spread from one hemisphere to another, but so far there is nothing in Grace's readings that leads us to believe that her case is bilateral. Interpreting an EEG on a person who has had an anatomic hemi is tricky as the architecture of the brain has been altered and the brain is no longer up against the cranial bones of the skull. The doctors will take a week or so to completely review the output of the test and we will then reconvene to determine our next steps. Grace has been keeping busy doing her homework, reading, playing games, and watching some videos. Thank you all for your prayers, thoughts best wishes, and support of the RE Children's Project.

Wired Up

2010-01-22T21:22:00.004-05:00

We are back at Hopkins. This is a very tough time as we face a lot of uncertainty regarding Grace's future. Grace has 28 electrodes attached to her head and is being monitored for seizure activity. We miss Deb's mom and especially Auntie Lou who passed away a few months back and was such a big presence here at our hotel and at Hopkins during our stay last February. We met with Dr. Ben Carson today, a legendary neuro-surgeon who is supportive of my efforts to organize a research conference devoted to RE.

Heading To Hopkins

2010-01-18T09:41:00.006-05:00

We recently had a lot of fund bowling. Bowling is a great equalizer, at least in my family where we all stink (and it is also a one-handed sport). We all had a blast, especially Grace. Despite the adversity she faces Grace continues to amaze. Grace is committed to her friends, family, school work and maintains that great sense of humor. She continues to adjust to a one-handed life; not an easy task in a two-handed world. Last week I had a conference call with 15 people primarily from the neurology community from around the world and we discussed what we can do about Rasmussen's. There is agreement among these experts that a multi-disciplinary conference focused on RE would be a great way to reinvigorate research efforts to find a cure as well as potentially leap frog our understanding of the disease. The tentative dates for the conference will be in October and I am busy convincing this group that it is worthwhile to attend such a conference. Funds will be needed and I have formally set-up the RE Children's Project to accept funds for our work. There is agreement that if we can unlock RE that it would no doubt produce benefits for other neurological conditions including incurable epilepsy.

Grace's Birthday

2010-01-10T14:05:00.001-05:00

We are celebrating Grace's birthday this weekend. She is now 12 years old. Family and friends have been providing tremendous support ensuring that Grace has an enjoyable birthday. As Grace turns 12 we are now 1 and 1/2 years into our struggle with Rasmussen's and unfortunately, despite a risky surgery we are still very much confronted by the issues presented by this devastating disease. Grace will be returning to Hopkins in Baltimore for testing and evaluation. Seventy-five per cent of hemisphrectomy surgeries are successful; success defined as cessation of seizure activity. Grace does not appear to be in the majority and this will most likely be confirmed by Hopkins. This week I am undertaking the first significant steps towards finding a cure for RE as I launch the RE Children's Project. I will be on a conference call with 12 to 15 of the world's top neurologists and epitologists to discuss a framework for a research conference devoted to path-breaking research for RE. The focus of the research conference will be to include experts from other specialties and diseases such as immunology, oncology, multiple sclerosis, virology, and genetics in order to tap into their collective expertise and develop collaborative projects between research centers. The participants will include individuals from as far away as Germany and Australia. There is very little dedicated research directed towards RE, but hopefully I will be able to mobilize and inspire these dedicated individuals to come together and advance the current thinking relating to RE. I welcome your comments and input on the conference.

We Continue The Climb

2010-01-01T21:34:00.006-05:00

It increasingly looks like there is a small piece of active Rasmussen's tissue that was left behind in Grace's surgery and it is causing problems for Grace. We are evaluating our options in consultation with our neuroloigsts at Johns Hopkins. Despite this setback our family and friends have rallied and stayed strong with us during the holidays.

Unwelcome news

2009-12-30T23:02:00.002-05:00

Grace went for an EEG yesterday. This is a test where they attach electrodes to your head and monitor your brainwaves. Unfortunately, it appears the remaining piece of tissue that was left behind on the right side of her head is active and maybe causing seizure activity. We are in consultation with our neurologists here locally as well at Johns Hopkins to determine our next steps. This is a setback, but we remain determined to push forward.

Holidays

2009-12-26T14:44:00.000-05:00

Grace has not regurgitated in the last few days, but she is still lethargic and plagued by headaches. I am convinced that her lethargy is rooted in the multi-pill cocktail that she ingests everyday. Grace remains on anti-seizure meds which definitely cause fatigue. Many of the hemi families have relayed that one year from surgery their children were off anti-seizure meds. We are working to reduce her dosages of anti-seizure medicine. Grace recently went to a physical therapist that has a great reputation with neurologically impaired children. The practice is about an hour away and after going to one session I can see why people drive from all over to visit this woman. She employs special kinds of massaging techniques on different parts of the body to create a more proper alignment and body balance. The therapist said that her approach combines many elements from different schools of therapy and rehabilitation. Grace loved the session and apparently this woman's techniques and special way have been met with great success. I am moving forward with my plans to jump start research devoted to RE. I have been corresponding with many of the experts in RE and in the early stages of organizing a special research conference devoted to RE. This conference will seek to include professionals from other diseases and specialties such as genetics, pharmacology, and immunology to spark new ideas that will advance our understanding of RE. Happy Holidays to all!

Blues

2009-12-21T13:32:00.003-05:00

Grace is not doing that well. She is lethargic, experiencing headaches, and periodically regurgitating without warning. We are looking at some new ideas/doctors to see if we can control her gastric/retching issues without continuing to pile additional drugs into her system.

Down and Up

2009-12-15T20:20:00.003-05:00

Grace had a better day at school today. Earlier in the week she experienced an episode of spontaneous regurgitation at school and had to come home early. She was wiped out. We are tinkering with her gastric medicines. I have been e-mailing the other Rasmussen's families and apparently gastroparesis is not uncommon among the hemis. Grace is being treated for GERD (reflux), but she does not have any of the classic symptoms of reflux such as heartburn. Erythromycin is used to treat gastroparesis and Grace has started on this medicine and continues on prevacid. Thank you to all of the Rasmussen's families who contact me and offer their support to my family. Grace soldiers on going to school and plowing through her homework while maintaining her good spirits. I would like to give a shout out to the local Y who offered to have Grace participate in the house basketball league. Grace had been a participant in the Y leagues. Now we go to the games on Saturday and Grace cheers on her friends. There was some discussion of substituting Grace into a game and allowing her to score a basket, but she is not physically able to do that and it would not be safe, but what a fabulous gesture by the coaches in the league. Next year perhaps!

The RE Children's Project

2009-12-07T17:22:00.003-05:00

Grace had a setback over the weekend; two steps forward, one step back. Never four steps forward. Grace is experiencing the spontaneous regurgitation we struggled with several months ago. Her headaches and dizziness have worsened, and she is fatigue all day. Recently she has complained of shaking in the side of her body that is paralyzed. These are all post-surgery complications that are difficult to deal with and vary with every post-hemi kid. Regardless of what is thrown her way, Grace battles on trying her darndest to keep up with school and participate in different events. Over the weekend I traveled to Boston to attend meetings that were scheduled around the American Epilepsy Society's Annual Meeting. This is a multi-day meeting in which the world's top neurologists, neuro-surgeons and epileptologists attend. I traveled to the meeting with Cris Hall, the founder of the Hemisphrectomy Foundation. We had several meetings with the world's top individuals in Rasmussen's and epilepsy in an attempt to formulate a consensus on how to move forward with research dedicated toward finding a cure for RE. Toward that end, I am in the midst of filing documentation to establish The RE Children's Project. The primary purpose of this organization will be to support research dedicated toward unlocking RE concurrent with applying any breakthroughs toward solving refractory (incurable) epilepsy. Our meetings included other organizations founded by parents that are already having a positive impact on epilepsy research. We had a number of productive meetings and cannot thank enough the doctors and other individuals that we met with. I will be writing more about my efforts around the RE Project at later dates. Hopefully Grace's condition will stabilize and improve from here. Keep Grace in your thoughts and prayers.

Grace Riding On Bike

2009-11-30T09:52:00.002-05:00

Grace continues to gain strength in her left leg and improve her balance. She is beginning to ride a bike as well as walk backwards with support and step side to side on a treadmill. These are major advancements for Grace; she has come a long way since her early post surgery days when she could not walk at all. Grace is now able to navigate our house and is doing more and more everyday. We still have to shadow her on stairs and when she walks on uneven surfaces, but Grace continues to work hard and progress.

Proud Parents

2009-11-28T07:00:00.000-05:00

This week Grace went on a two day overnight trip with her class to a nearby nature camp. Grace rode on the bus about an hour with her classmates and participated in most of the activities occasionally taking a rest or break. Attending the trip were a few of Grace's teachers and an aide assigned to assist Grace. Deb shadowed along for the trip just in case anything went wrong. Grace had a great time and was excited to be a part of an activity with so many of her classmates. Grace's grit is amazing. With an assist by our local YMCA and a few of our friends Grace was "drafted" to participate in the girls Y basketball league. This is the same group of girls that Grace played with last year prior to surgery and that watched her deteriorate as her condition overtook her body. Grace is excited to be the team's "mascot" and will be attending as many practices and games as possible. Grace's neurologist stopped by this week to see Grace in action at our house and to see how Grace is progressing. He was delighted at her progress and we continue to gradually reduce Grace's medications. The Darien Varsity Football team lost a nail biter to New Canaan in the Turkey Bowl on Thanksgiving. That was the last game for Michael and a great bunch of kids. This team was special to us for so many reasons, but most importantly for extending themselves as friends to Grace the entire season. The Wohlberg Family salutes the team and the entire coaching staff led by Coach Trifone. Great job!

10 Months Out

2009-11-17T13:36:00.007-05:00

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

2009-11-08T20:08:00.004-05:00

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

2009-10-31T17:35:00.005-04:00

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

2009-10-24T17:34:00.008-04:00

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

2009-10-19T09:09:00.003-04:00

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

2009-10-12T11:05:00.005-04:00

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

2009-10-09T08:12:00.004-04:00

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.

Go Yankees!

2009-10-04T16:52:00.003-04:00

We are huge Yankee fans so imagine the thrill we had when we were fortunate enough to meet some of the Yankee players. Thanks to those special people who made it happen! October 17th is fast approaching. Grace's friends aka Team Grace will be working the game selling friendship bracelets and cupcakes to raise awareness and funds for the Friends For Grace Foundation. Please come to the game and support the Blue Wave. Bring your spare change to the game for the Foundation as Grace will be recognized for all of her courage and strength!

Grace's Weekly Teachers Notes

2009-09-25T12:57:00.002-04:00

We are so proud of Grace. Even on two full dosages of anti- seizure meds she seems to be adapting well to school. We cannot wait to see her to continue to blossom as we wind down her meds over the course of the next year. Each week we receive weekly updates from her teachers. Below is a sampling. Hopefully this will bring a smile to your face as it does ours.

English
This week I am most impressed with Grace’s class participation. On a daily basis, Grace makes the effort to contribute to class discussions.

Science
Grace’s eyes are still sparkling in science. By Wednesday though she was too exhausted to come to 8th period class. I keep reassuring her that 20 minutes work is the limit of time I want from her for science homework. No more. Her first quiz grade is 94. Her attention and participation in class contribute to her strong understanding of the content.

Spanish
Grace is doing wonderfully in Spanish. She participated in the skit, raises her hand with answers in class, and is preparing her flashcards for learning numbers 0-29. She seems to be learning well, and having a good time in class.

Computers
I am so impressed with how well Grace is doing in Computers. I think she is starting to enjoy it because I see a lovely smile on her face. She is contributing to the class and asking questions, too.

Homecoming Game

2009-09-21T22:00:00.002-04:00

Grace continues to adapt to life and school. We are fortunate to live in a town such as Darien and to have a wonderful group of teachers and administrators that support our dreams and goals for Grace. We recently met all of Grace's teachers and they are wonderful individuals. Grace will soon be learning how to type with one hand with special computer software so that she can develop keyboard skills. We are gearing up for the Varsity Football Homecoming Game on October 17th at which time Grace will be recognized. For the game we are organizing a friendship bracelet and cupcake sale to raise awareness and funds for the Friends For Grace Foundation. Jill Walker is graciously spearheading this effort. If you, your daughter, or son would like to help out please e-mail Jill at jdwalker@optonline.net. All proceeds for the Friends For Grace Foundation go to other families impacted by Rasmussen's and hemisphrectomy surgery as well to research to find a cure. This Saturday the Blue Wave plays Danbury at home. Come out and support the wave and say hello to Grace.

Grace In School

2009-09-15T09:03:00.005-04:00

Grace continues to adjust to school life. The high level of care and professionalism demonstrated at Holmes School is being matched at the Middlesex Middle School where Grace is the beneficiary of a team of individuals that form Team Grace. They teachers and administrators there share our goal of keeping Grace on a college track with a regular course load of work. Each week we receive an e-mail progress report on Grace with a summary from her teachers. The reports have been better than we had expected. Grace loves the school environment. She continues to receives therapy of one sort or another at least 5 days a week in the afternoon or in the evening hours. This is in addition to the therapy she receives during the days during gym and some study halls. This Thursday evening is the Varsity Football's first football game; it is an away game. We are all very excited for the start of the season. Please get a hold of the football schedule and turn out to support the team. October 17th is Homecoming and Grace will be recognized at the beginning of the game by walking out with the captain of the football team who happens to be her brother, Michael to the captain's coin toss. GO BLUE WAVE! Bring your tissues, there will not be a dry eye in the stadium. Make sure to bring your spare change (dollars) as well as we will have some buckets to take donations for the Friends For Grace Foundation. These donations all go to benefit families struck by Rasmassens or impacted by hemisphrectomy surgery. I am in the midst of making plans to expand my philanthropic activities on behalf of children struck by Rasmussens. There is very little research being done into this disease and I am interested in jump-starting a research effort. I have been speaking with some of the country's top neurologists to learn how best to proceed and I am currently making tentative plans to travel to Boston in December to meet with some of these doctors where they will be attending a major epilepsy conference.

First Week Of School

2009-09-05T11:32:00.003-04:00

Grace had her first seizure in June 2008; she had one half of her brain removed in February 2009, and this week she finished a full week of school in regular classes at our public school. What a year it has been. Grace is carrying a regular workload and then some as she takes additional classes when the other kids are in gym. She will be learning how to type one-handed and receive some school based OT/PT as well. Grace was a little tired from her long days, but she was a trooper and loved school. She has an aide that keeps an eye on her and also shuttles Grace between classes a bit before the bell so that Grace does not get knocked over in the hallway when the kids change class. This was a satisfying week as we scheduled the surgery with the intent of having Grace enter the 6th grade with a normal course load and this is exactly what has occurred.

Summer Fun

2009-08-28T15:37:00.005-04:00

Grace is getting ready to enter middle school on Monday and is very excited. She will be carrying a normal and full course of study. She can't wait. There is no doibt that her stamina will be tested, but she seems up to the task. We said goodbye to our PTs/OTs at Danbury Hospital as Grace's school schedule will now preclude traveling to Danbury. We have arranged for a new group of local individuals to join Team Grace to complete the recovery rehabilitation that was started in Baltimore at the Kennedy Krieger Institute and continued in Danbury. Before heading back to school we found time for some summer fun as we went on a friend's boat and played miniature golf. With each activity Grace gains more confidence and is slowly realizing that life may be challenging post-hemi, but it can also still be fun.

Grace In The News

2009-08-20T08:22:00.003-04:00

I would like to express my sincere thanks to the editors of the Darien News, (http://www.dariennewsonline.com/) for publishing in today's newspaper a front page story on Grace and our family, as well as the generosity of a Darien individual who donated $25,000 to the Friends For Grace Foundation. We agreed to do the story to raise awareness and funds for Rasmussen's Encephalitis as well as some other organizations helping children with severe neurological issues. It is a story about how a town spontaneously rallied around a little girl and her family after being impacted by an extremely rare and insidious brain disease. There are two stories; I encourage you to purchase the newspaper or read them on online, http://www.dariennewsonline.com/local/ci_13165385 and http://www.dariennewsonline.com/local/ci_13165381. One of the stories discusses activities to recognize Grace at the Varsity Football's Homecoming Game. The date of the game is October 17th. Save the date and come out and support the Wave.

Grace's Courage

2009-08-16T08:12:00.003-04:00

Grace did an extraordinary thing yesterday. At home she called for us for a few minutes, but we did not hear her as we were upstairs. We finally did hear her, but she was not where we left her. Grace had walked clear across the lower floor of the house to the bathroom. She negotiated stairs in different places and various furniture obstacles. We were stunned as she made the courageos decision to go it alone for the first time since her surgery. Most importantly Grace was very proud of her accomplishment and act of courage.

Grace On Vacation

2009-08-12T16:15:00.004-04:00

Grace continues to work on vacation as she prepares to enter middle school in a few weeks. The videos below show her progress to date. At times it is difficult for Grace as she can no longer do many of the things on vacation that she loves such as swimming in the big waves at the ocean and playing miniature golf, but we are hopeful for next year! She has been swimming in a beautiful fresh water pond and eating her favorite ice cream flavors.

Amazing Grace

2009-08-01T06:57:00.003-04:00

Grace's condition is improving. She is now "walking" more and more without a cane as we make a big push to get her up and about. She still cannot negotiate stairs that well, but she does walk unassisted on flat surfaces. Grace can also stand up and sit down unassisted from a chair. These are all enormous improvements. Grace recently started taking a multi-purpose vitamin and this along with the cessation of one her drugs, lamictal, as well as the passing of time from her surgery has resulted in a noticeable change. We are coming up on 6 months post surgery and Grace is still free from seizures. This is the best news. Our biggest worry remains and always will be that the seizures will return. The hemi sample size is small and the range is wide, but the number we have heard is that about 30% of the hemis will experience seizures after surgery. This statistic probably depends upon the type of hemisphrectomy that was performed and the underlying cause of the seizure disorder. It also appears not to be time dependent in that as time passes post surgery the probability of a seizure recurring does not decline, but my guess is that if one goes 10 years without a seizure the odds are probably reduced. This all plays into the decision how long the hemis should stay on anti-seizure meds (the ones that could not control the seizures in the first place) post surgery. One area for great improvement by the surgical centers is the post surgical tracking of the hemis. There is no formal collaboration among the centers to share data and information, and more importantly there is not a national tissue bank in which a researcher can access tissue to perform research. The brain tissue remains at the surgical center. That is unfortunate as the scope of tissue testing post surgery by the centers varies by center and the results are difficult to access by the hemi families. We are hopeful that Grace will continue her recent improvement as we head into the Fall and Grace enters the middle school.

Auntie Lou

2009-07-26T15:59:00.003-04:00

Deb's Auntie Lou unexpectedly passed away earlier in the week. MaryLou Doherty was 84, but she was still spry, energetic, and in good health. We are all very saddened by the news. Auntie Lou and Deb's mom Joannie were with us the entire 7 week stay in Baltimore and provided us with support, love, and good humor during Grace's surgery and recovery. In prior posts I relayed how Lou was a larger than life character and along with Joannie they together "took over" our hotel with their Irish charm offensive. Grace continues to gradually recover, but the speed of her rehab is being hampered by her own stubborness and lack of motivation. At this time we are not sure when Grace will walk. We were hoping that Grace would be able to walk when school resumed, but at the moment this appears to be unlikely. I will try to post some pictures in the coming days.

Summer Nights

2009-07-20T13:53:00.002-04:00

Grace is continuing her summer school in the mornings and then heading to Danbury for therapy. She continues to make slow progress towards walking and regaining her strength. Grace is beginning to "swim" more which is not easy given how much she loved the water and the extent to which her physical disabilities now limit her ability. We are spending time with Grace on her school work doing all that we can to prepare her for her re-entry back into the school system. I have been doing research into the role music plays in the wiring of the brain. I would encourage you to google Daniel Levitin and Oliver Sachs. They are both neurologists that have studied the impact of music on the brain and human develpment as well as its application in helping neuroligically-impaired individuals. Grace's retching seems to be under control and her headaches seem to be less frequent. We are hoping that Grace's physical and mental stamina continue to increase as she spends more time on her feet and she gets pushed in her schoolwork. We are beginning to consider some additional fundraising events for the Fall to raise funds for Rasmussen's Encephalitis as well to help hemi kids.

Hope Renewed

2009-07-12T06:30:00.004-04:00

We were in Baltimore the last few days. Grace received her six-month post surgery check-up a month early. We went to Johns Hopkins to meet with the neurologists and then headed to Kennedy Krieger for Grace to participate in a gait study in which she had to walk on a dual belt, dual speed tread mill. While in Kennedy Krieger I sought out an individual who we met during our stay and he was still there 5 months later working on his rehabilitation. Wheelchair bound for life and a huge Yankee fan he announced to me "I am getting out of here on Tuesday." He had been in KKI for well over seven months. At 20 years old he is one of the oldest patients in KKI and I asked him what he was going to do, he responded "get me a life." While in Baltimore we met with over 50 families who had children that had the hemisphrectomy surgery. This "reunion" currently takes place once every three years and it lasted for two and a half days. This was one of the most powerful experiences I have ever had. The ages of the hemi "kids" ranged from 3 months to 35 years of age. We met with so many inspirational individuals and families that all had experienced the impact of some rare, awful disease and then had to learn the only possible salvation was a surgery in which one half of the brain is removed. All of the hemi kids no matter what their age had the tell-tale sign of a hanging and mostly useless arm as well as an awkward gait, yet some of them through their sheer determination and loving support of the families had come terms with their existence and went on in life to achieve. Many however were not as well off. We did hear stories of football, riding a bicylce unassisted, dancing, basketball, going to high school, going to college, going to grad school, and becoming a mother. Yes, we met a hemi mom who had a 2 year old daughter. Some of the hemi teenagers that have done well innately understood their responsibility to the newer hemi kids and they offered Grace their love and support, and showed her that a one-handed life, a lilting walk, and half a brain still enabled them to have fun, enjoy life, and to have dreams and goals. Not all of the hemis fare as well as some of the others. In many cases it depends upon the underlying disease that causes the neurological issues in which a hemi is the prescribed treatment. Rasmussen's Encephalitis has the best outcome post surgery and for many the hemi surgery while relieving the seizures, still does not offer the individual an opportunity for an independent life. In one closed door session in which only hemis 10 years and older participated the group discussed life and the issues they faced with a moderator from Hopkins. For Grace we are sure that this must have provided some measure of relief to learn that there are other people who have "walked" in her shoes. We learned that our journey cannot be measured in days or weeks or even months, and we learned that as parents we are not alone. Please generously support the Friends for Grace Foundation. All of the funds help hemi families and their kids as well as to support research. Thank you.

Grace

2009-07-06T09:17:00.002-04:00

For the first time since her surgery, Grace fell over the weekend. She hurt her weak hand and it swelled considerably. Without the benefit of movement in the hand the blood cannot circulate and it exacerbates the swelling. It is quite painful and she may have chipped a bone in the hand. Grace's balance is tenuous and despite her progress we must be close at hand when she is walking. Unfortunately, the fall has made her somewhat tentative to walk, but we are pushing her to keep walking and exercising. Grace's retching episodes are still averaging about 1 to 2 a day, but they are more manageable. Unfortunately, Grace has had to forego some of her favorite foods such as ice cream. Hopefully, her reflux problems will abate as they have hindered Grace's overall enthusiasm for rehab.

GRACE WALKING

2009-06-29T21:33:00.004-04:00

Despite our rough few weeks Grace edges ever closer to walking.

Summer School

2009-06-29T13:43:00.004-04:00

Grace started summer school today. School runs 8 am to 10 am and then Grace heads to Danbury for therapy from 11:15 to 2:15. Grace continues to have unexpected bouts of retching. These bouts while down in frequency are still acute. She is on a proton pump inhibitor, prevacid. The gastro doctors believe that Grace is suffering from reflex although her symptoms are not typical. Grace has trouble clearing her throat and this causes it to spasm resulting in retching and gasping for air. As the videos show Grace is walking more and more with a cane, and she is now beginning to walk without the cane. She is working on her balance and this is a real start towards her gaining her independence. We continue to push her in her therapies. We are also meeting with child psychologists who have expertise with chronic illness and its impact on children. We are reducing one of Grace's seizure meds and she will be down to two seizure meds in about 2 weeks time. Grace's headaches have subsided somewhat and we hope this continues.

Good news

2009-06-20T08:14:00.002-04:00

Grace had a spinal tap yesterday and we have confirmed that hydrocephalus has not been the cause of her headaches and retching. We are relieved as hydrocephalus usually involves surgery to implant a drainage system into the brain. Grace's bouts of gasping/retching have not been as severe as three weeks ago and they are less frequent. She is on prevacid, a standard prescription for reflux. For the moment we are going with reflux as the cause of her problems. We will see how Grace's condition evolves before seeking additional treatment. Grace will rest the next few days and remain in a reclined position to reduce the chance of post-tap headaches that are quite severe following this procedure. Grace will be starting summer school next week five days a week and then head to Danbury three of those days for continued rehab. Grace is also continuing with her aqiatic therapy one day a week through the summer months.

Challenging Times

2009-06-15T11:15:00.004-04:00

Grace's condition has somewhat improved, but she continues to to have gagging episodes every night. We are considering our next steps including conducting a sleep study and seeing pediatric specialists that focus on difficult to diagnose ENT and gastro conditions.

Grace Back Home

2009-06-09T17:55:00.003-04:00

The good news is that Grace is back home, the bad news is that we are no closer to understanding what is causing her bouts of gagging and regurgitation. Grace had many tests at Columbia Presbyterian and it was confirmed that she does have reflux, but the doctors are not sure that the reflux explains the suddenness and acuteness of her symptoms. Her condition is better than it was 10 days ago, but Grace still is experiencing problems, usually during the night. We are resuming our schedule and Grace will return to therapy tomorrow. We are hopeful that she will continue to improve and that this will pass. If not we will have to pursue more specialized and skilled assistance.

Getting Better

2009-06-07T08:31:00.001-04:00

Grace is sleeping through the night and her bouts of gagging/retching are way down. Grace is on reflux and asthma drugs and we are not sure why, but her condition has improved. She has undergone many tests, but none as of yet have really nailed down why she is experiencing throat spasms and regurgitation. We have 2 more tests to do on Monday and we are hoping to be heading home on Tuesday.

The Blues

2009-06-04T20:34:00.001-04:00

Grace continues to undergo tests and rotate drugs as different specialists try to determine what is causing her retching and regurgitation. Grace threw up twice today and had one minor bout of gagging. We will see how she does this evening. Aside from these periodic episodes Grace is healthy and is in pretty good spirits. Her condition is quite perplexing to the doctors especially after the testing to date has revealed nothing abnormal.

Columbia Presbyterian

2009-06-02T22:12:00.004-04:00

We are back at Columbia Presbyterian one year after we were here to have Grace evaluated for unexplained seizures. She is hooked up to the EEG again as well. We are trying to figure out what is causing her wretching and sudden gasping for air. The neurology team does not believe it is seizure activity which is a big relief. The doctors are focusing on her airway and throat to determine what is causing it to seize up. We had to wait 9 hours in the ER as the hospital is inundated with children that have flu systems. It was quite a scene and we were fortunate to get a bed. Grace added to the excitement by unfortunately having an attack in the middle of a cavernous waiting room filled with kids wearing breathing masks. Grace is hanging in there as always, but she is understandably sad at times to be back in the hospital.

Grace's Problem Continues

2009-05-31T12:36:00.004-04:00

Grace is still experiencing terrible bouts of gagging, wretching, and regurgitation. The bouts are mostly at night and we are beginning to think they are some kind of allergic reaction. Grace has a hair trigger gag response to clearing her throat and coughing. She has 5 to 7 bouts an evening and it seems to subside during the daylight hours. She can barely take in air when these occur and they last about 5 to 15 seconds. This has been going on for 10 days. We have been to the hospital on two separate occasions, seen our neurologist and a pediatric gastroentologist, and put her on allergy and stomach medications---all without any effect so far. Our next step is see a pediatric allergy specialist or an ENT. At this time we believe there is no direct linkage between Grace's Rasmussen's or her surgery, but we cannot rule that out and we may have to pursue testing to determine if that is the case if her condition does not abate. Despite her problems, Grace remains in good spirits.

Grace

2009-05-28T22:37:00.003-04:00

Grace has been in and out of the hospital for a week. She has uncontrolled bouts of gagging, gasping for air, and regurgitation. I have lost count of of the number of drugs that she is on. I am not sure that doctors have identified her problem. Grace is being treated for a sinus infection, reflux, and allergy symptoms, yet she continues to have these horrbile bouts mostly during the evening. We are back to sleeping next to Grace just as we did for 8 straight weeks in Baltimore. Despite all of this Grace edges ever closer to walking even though she has missed therapy for a week. Grace is a trooper through it all, but this is too much for any 11 year child to endure.

Difficult Days

2009-05-23T16:19:00.004-04:00

Grace has been sick lately. We had to take her to the emergency room and then stay overnight in the hospital for an MRI, chest x-ray, bloodwork, and for observation. Something is triggering a gag reflex in Grace that results in difficulty in her breathing, gasping for air and then vomiting. These episodes last about a minute and are a bit scary. Her nasal passageway remains clear, but while she is gasping she cannot force her body to breathe through her nose. One hypothesis put forward was that it was the remaining bit of tissue from her surgery that was activating an unusual type of seizure. Grace has also been congested and perhaps her body can no longer remove the excess build-up of mucus in her throat and chest. At some point her body's natural defense mechanism takes over. The congestion may be due to an allergy, but we are not sure. She is home now and being treated for sinusitis, but we will see if this unexplained gag reflex abates when her chest clears. My insurance for Grace's rehabilitation has been exhausted. Clearly my insurance policy was not designed for catastrophic rehab and I had sticker shock at the "retail rates" that hospitals seek to charge to people that run out of insurance. These rates are much higher than the "wholesale rate" reimbursement that the hospitals receive from the insurance companies or the rates available for private therapy one can arrange to receive. I am working my way through the system/bureaucracy and have already been promised lower rates by the hospital, but it is nuts that this is the way the system is managed. Grace has been fitted for a new AFO device that is quite an improvement from her old orthotic. This is a highly customized device designed and molded by specialists that deal only with pediatric walking disabilities. Their offices are in NYC and are they called Lorelie Orthotics. Although Grace is still quite wobbly with this device she can walk without assistance. Grace needs a lot more work, but she is getting closer to walking. Grace is still plagued by migraine type headaches. The solution for these headaches have taken a back seat to her more recent problems.

2009-05-17T15:40:00.004-04:00

Grace continues to work toward her goal of walking. Take a look at the 6 second video directly above of Grace building her stamina on the treadmill. Everyday she gains a bit more strength and endurance. She has walked up to 30 minutes on the treadmill with assistance by her PT. We were clearly off in our original timetable regarding Grace's abiliy to walk. Based on a number of conversations that we had early on with our therapists, we initially thought by now, 3 months post surgery, that Grace would be walking. It now appears that it will be more likely to be closer to 5 months post surgery before Grace will be albe to walk without any assistance. Notice in one of the pictures Grace beginning to walk without a cane. All of this is great news, but we must remain patient. In one of the pictures you can see electric stimulation being applied to Grace's arm in an attempt to rewire her muscles. At this time, Grace does not really feel the electricity pulsing through her arm and it's recovery is slow. We have arranged for Grace to attend summer school for a month to prepare her for the middle school. This will be in addition to hours of physical therapy each day except for the weekends. Grace's only real break will be a 2 week vacation the first two weeks of August when we will stop everything for a family vacation. Grace received another wonderful gift recently from the captains of the Varsity Football team, a personal jersey with Michael's number on it. Grace was very excited. Michael attended the prom as a junior this past week which presented a wonderful photo op for our family.

Hanging In There

2009-05-10T07:41:00.003-04:00

Grace continues with her regimen of therapies. Day by day she grows stronger, but walking remains elusive. We are really working on increasing Grace' stamina by doing more activities around town and rehab exercises at home. This week Grace will be fitted for a new foot orthotic called an AFO device. This will be third AFO since surgery and probably not her last. This one will be custom fitted by an indiviual in New York City that specializes in orthotic design for people with walking disabilities. We will also have a meeting with the special education team at Holmes School as we begin the process of transistioning Grace to the middle school. Although she has had one half of her brain removed Grace's intellect, IQ, and memory are the same as before the surgery. At this point her academic issues are focused on developing rigor in her analytical skills and study habits as well as addressing changes that are needed to accommodate her reduced field of vision. Visualization is an issue for hemis. For example, imagine that you are driving south, looking at a map, and need to make a turn to head west. Mentally flipping the map upside down to determine you need to make a right turn can be difficult for a hemi. We are also focusing on Grace's mathematical skills, an area that she had trouble with prior to surgery. We are looking forward to the warmer weather and having Grace swim a bit more, a type of therapy that comes easier to her than land based therapy.

Rainy Days

2009-05-05T19:42:00.002-04:00

We are ramping up the amount of time Grace spends at rehab each day to speed-up her progress. Grace was spending 3 hours in therapy each day except Tuesdays when she has aquatic therapy. We have now added another 1/2 hour to her physical therapy regimen which will bring her daily therapy time to 3 1/2 hours. We would like to see Grace walk again as soon as possible for a number of obvious reasons, but most of all it will boost her self-image and confidence that she can have some level of indepedence. Grace continues to experience migraine type headaches and we may accelerate her first real step down from her seizures medicines to see if this will alleviate this problem. This is typically not done until at least 6 months post surgery, but we are consulting with her doctors and because Grace is still on full doses of three medicines, lamictal, keppra, and trileptal, we believe that a mild reduction in one of them does not pose too big a risk. The picture above is from this past Sunday when we participated in the annual New York City psoriasis walk in the Botanical Gardens. I have had psoriasis and psoriatic arthritis for over 20 years and have been a big suppporter of the National Psoriasis Foundation. It was good to see some old friends, our goal for next year is to have Grace walk the Gardens.

Staying The Course

2009-05-02T08:57:00.007-04:00

We thought Grace would be walking by now. While we are patient this is somewhat disappointing. Grace continues to progress, but we are unsure as to when she will be able to walk. Her rehab is within the range of expectations and we believe she is getting the best PT/OT that is available, but each child's recovery is different. Grace's speech is great, but her volume is low. We are working on Grace's posture which will improve her breathing, stamina, and speech. Each day we rub Grace's arm with different textures to stimulate the nerve endings along her arm. Grace's arm does not have much feeling, but she does have isolated points along the arm and in her fingers that feels sensation. Grace's spirits are good and she especially loves being in school on Tuesdays.

Spring Is Finally Here

2009-04-30T11:36:00.004-04:00

Grace's spirits continue to improve. Her personality continues to return. Her stamina is still not that strong. Everyday she inches towards our first major rehab goal of walking unassisted. At therapy she does walk unassisted with a cane, but her therapists stand nearby with a hand on a belt she wears to stabilize her. She is now receiving e-stim while she walks on a treadmill. The stimulation will hopefully fire up the muscles in her legs helping her to strengthen them and facilitate her walking. Grace is regaining feeling along her arm. This is great news. A small first step towards some recovery in its use. Grace has limited partial movement in the arm, but it is difficult for her to really control the motion. We are stopping one of the four medication that she is on which we hope is a first small step towards a dramatic reduction in her medicines over the next year. I have heard from the RE families as well as our therapsits that there a dramatic leap forward in stamina, personality, and recovery once the meds are reduced in earnest and their side effects begin to wane. As of Saturday Grace will no longer be on neurontin, a drug she started at KKI for neuropathic pain.

Little League

2009-04-27T15:30:00.001-04:00

Grace was recognized yesterday at the opening ceremony for Little League. She addressed the entire league of boys and girls. A year ago I was her head coach and she walked in the parade which precedes the ceremony. This year it was a bit different. Grace was recognized for her strength and courage. Many thanks to the Tony Farren and Jeff DeMaio for all of their support for Grace. Grace continues to periodically experience migraine like headaches. We believe they are due to the three seizure medications that she remains on. Grace is now 9 weeks post surgery. We are hopeful in the next few weeks that she will be able to walk unassisted.

Walking 101

2009-04-24T17:07:00.005-04:00

Grace is rehabbing away. Grace is motivated to walk, but it is hard work. The mechanics of walking in the human body is quite amazing and complex. Not only do the feet have to move across the ground, but the hips, spine, arms, shoulders and head all have to move in a coordination of movement to maintain balance. In Grace's limbs the recovery starts at the top and works it way toward the ground. The muscles in her upper arm are firing as well as the muscles in her hips and upper thighs. How much the recovery spreads towards the ground is different in every hemi kid. There is no norm, each case is different. One thing for sure is that the muscles that cause dorsiflexion or the upward flex movement which decreases the angle between your toe and shin will not recover. Dorsiflexion is an essential part of walking, without it you would step on your foot rather than your heal. Grace will most likely wear a walking assist device that produces dorsiflexion her entire life. The leg recovery is better than the arm recovery. Most hemi kids walk, but the arm recovery is unpredictable and it will never return to its pre-surgery form. As you can see above, somehow another dog found its way onto Grace's lap. A dog is great therapy and this one is being trained to be a therapy dog. The dog belongs to a nurse in Dr. Phillip Overby's office, our friend and Grace's local pediatric neurologist located in Stamford. Grace is getting a mention at the opening day ceremony of Little League. We will all be at the ceremony at 1 pm on Sunday. I cannot thank the sports organizations in town enough for all they have done for Grace. Grace was not a great athlete, but she did love participating in the various sports programs in town. I did speak to one hemi dad who told me his son returned to playing basketball in 7th grade. Other hemi kids dance, play tennis, and climb mountains.

Back In The Pool

2009-04-22T19:15:00.000-04:00

Grace loves her aquatic therapy. It is a welcome break from the more rigorous land based rehab she does 4 days a week. At some point we may add another time during the week for aquatic therapy. Thanks again to Angelfish! Grace went to Holmes School this week and got re-acquainted with everybody. She enjoyed seeing her Holmes School family and we appreciate all of the wonderful support we have received from the students, teachers, and administration at the school. Grace is receiving home schooling everyday from some of her favorite teachers at Holmes. Grace is beginning to walk with a cane, she is slowly gaining confidence while she is on her feet. I have provided a link below to the Hemisphrectomys Foundation's Newsletter. This organization is doing great work on behalf of children like Grace and their families who are dealing with hemisphrectomy surgery. Kudos to Cris and Kristi Hall whose daughter Jessie had a hemi last summer and who inspired them to start the Foundation (see www.jessiekelley.blogspot.com/ for Jessie's story). Click on the link below and it will bring you to the Foundation newsletter. The newsletter has a section devoted to the Lift-A-Thon. Check it out. Thank you for your continued generosity to the Foundation as well as to the Friends of Grace Foundation.

http://campaign.constantcontact.com/render?v=001f1LYBQ8VcTxWCOjqBhi_nvIDrpL0EmM6lRsynKH5zLxbNS2OZdm-KvHSPKeCmP_7Sv-HcfPtPLha4E8eaKNZ8LEZcwa6xUSlKBHAtJifoqKMZz7zszK2y-3prUegGNxeh3tC0qzKlnI%3D

Pictures

2009-04-17T20:38:00.007-04:00

Grace is getting a real workout at rehab. Her body is "deconditioned" (doctor way of saying out of shape). Her left calf muscle and left quad are not firing, but everyday Grace is a bit stronger and everyday she has a little more movement. Next week Grace will have electronic stimulation (e-stim) which should help left leg muscles retrain themselves. Grace can move now move her left hand, albeit just a bit, but it is a start. There are several devices on the market that may help Grace; most of them are developed for adult stroke victims. There is always some lag adapting the technologies to kids due to their smaller frames. Individuals that suffer strokes have similar rehab issues to hemisphrectomy patients. The saebo-flex, tailwind, and the toeoff are just a few of the technologies that are available. Main Street Rehab is terrific. We are very impressed by the expertise and care of the staff. Grace's rehab team says we are still about a month away from walking. Slowly but surely Grace's brain is rewiring. Amazing!

Rehab, Rehab, Rehab

2009-04-16T12:04:00.004-04:00

We are settling in to our new "normal" life. Grace continues to work hard at her therapies with slow progress. She cannot due much on her own, but we are hopeful in a few weeks time that she will be able to walk on her own with some type of walking assist device. This will be a huge step forward, but for the time being Deb or I (mostly Deb during the week as I have resumed working) needs to stay close to Grace. During the night we go into Grace one or two times to return her to her side. Grace prefers to sleep on her sie and she keeps flopping onto her back. Grace loved being back in the water and we are fortunate to be working with Aileen Tisser and Cindy Freedman of Angelfish Therapy. Main Street Rehab is also terrific. The group there works as a team and they are customizing their services and approach for Grace. Grace is being fitted with a new AFO (ankle-foot orthotic) which should provide her additional support to walk. I will provide some pictures over the weekend.

Rehab Part II

2009-04-13T18:28:00.002-04:00

Grace started therapy today at Main Street Rehab in Danbury. It is a bit of a haul, but Deb and I believe this is the right place for Grace. The individuals there have the right experience and they have an excellent facility. Grace is receiving 3 straight hours of speech/language, OT and PT. The pace of her rehab will pick up as Grace is well into the recovery from her surgery and we can begin to more seriously rebuild her stamina. Grace's attitude continues to gradually improve and she has a dry/sarcastic sense of humor that is very funny. Grace has a lot of hard work of ahead of her before she can walk without assistance, but everyday she makes a little more progress. Tomorrow she starts aquatic therapy. I will try and post some pictures over the coming days.

Home At Last

2009-04-10T14:07:00.003-04:00

We arrived home yesterday afternoon. The trip was non-eventful. We are glad to be done with the difficulties and challenges of the surgery, but we are now facing a new set of challenges as we help Grace adjust to a new life. Grace is not yet ambulatory and she requires assistance walking and going up and down the stairs, as well as with the mundane activities of everyday life. Grace will continue her rehab starting this Monday which will hopefully result in her walking unassisted within a few weeks. Thanks again for everything. We could not have done it without you. I will try to post every few days to keep you updated.

Last Night

2009-04-08T19:45:00.005-04:00

Dear Friends,

We are all packed. We are saying our goodbyes to our pals at KKI and at the Homewood Suites. We are sad to be leaving such wonderful people here, but we are excited to see you, the special, kind individuals and families who supported us for seven weeks with thoughtful gifts, encouragement, and words of inspiration. As you read my last blog from Baltimore, please say a special prayer for the kids and families at KKI whose problems are so severe and debilitating. As we sign off I am leaving you with one last picture of Grace with one of our good buddies, Sean. He sought Grace and I out today to show us his Yankee hat that he had just reeceived today; fed-exed to him that was autographed by Derek Jeter. We were so happy for him; somehow he had also scored tickets and received a pass to go to the game tonight at Camden Yards where the Yankees are playing the Orioles. Brian if you are out there, Grace is a huge Jeter fan as well. Thanks again to everybody! See you soon.

Winding Down

2009-04-07T14:09:00.004-04:00

Opening Day

2009-04-06T20:55:00.002-04:00

The Yanks opened up at Camden Yards today. There were a lot of Yankee fans in town. Grace had her Jeter jersey on and was part of the fun in the therapy center. I am having some trouble posting pictures in the hospital; their WIFI blocks certain website access. I will try to post pictures tomorrow. We met with Dr. Hartman and Diana Pillas today and received a debriefing on what to expect over the next few months. Dr. Hartman is Grace's neurologist at Hopkins. Grace continues to get some severe headaches and we will have to see how she does once we are home. For now Motrin does help her once it is administered. Tonight was Manic Monday and we had a paint fight. As usual it was a lot of fun. A dalmation dog also came by and Grace was pulled along in her wheelchair and loved it. Grace is walking a bit better, but she still cannot walk unassisted. Hopefully, that will come in a few weeks.

A Quiet Day

2009-04-05T18:11:00.002-04:00

As you know, there are no scheduled activities at KKI on Sundays. Grace spent a quiet day today spending a few hours at our hotel. She had a blast yesterday at the zoo. We are preparing all of the forms and taking care of all of the details that need to be addressed for Grace to leave KKI. I will try to post some pictures tomorrow. We are in the final countdown!

Our Last Week In Baltimore

2009-04-04T11:45:00.005-04:00

It's official, we are leaving KKI on Thursday morning. We will be driving home from Baltimore and will probably arrive early evening. We have always rode the rails and loved it (3 hours and 15 minutes on the Acela from Stamford to Baltimore), but we have too much stuff that we have received from all of you and Grace is not steady enough to be on the train. Grace is on another outing today to the zoo. Deb assures me that she is taking pictures and I will post them on late Monday. This coming Monday night will be another Manic Monday in the therapy center and I can't for that. Two weeks ago we had a water fight. Grace continues to heal and sounds like the old Grace more and more everyday. We are excited to be coming home, but also a little sad to be leaving the wonderful friends that we have made at Hopkins, KKI, and the Homewood Suites duing our 7 week stay. We are finishing Chapter 1 in a long book, hopefully the most difficult, but there are still many pages to be written.

Another Good Day

2009-04-02T20:02:00.003-04:00

Grace had another good day. I am in CT so pictures will not be posted until I return to Baltimore to take additional photos. Grace went duckpin bowling this evening on another outing. She had a great time. Grace rolled the ball from her wheelchair, but she me told that she did not get any strikes. We have scheduled our last post-op meeting with our neuro-surgeon, Dr. Jallo, to get the final okay we are all clear to head home. Grace is beginning to get excited although with her schedule and all of the outings she is one busy chica. Deb is on hospital duty for several consecutive nights while I head to work and also get caught up with Michael. Hospital living is something entirely different than one's everyday life. You quickly lose track of the outside world as you cater to your child and their world within the hospital. Current events are no longer important, paying bills loses its importance, and you gain a different perspective, one that is difficult to obtain in the outside world. In the parent's lounge you exchange hellos and updates about your children with the other parents (mostly moms) some of whom are residing at the hospital for months as their child is rehabbed. As I have said in the past, KKI attracts the most difficult neuological cases that impacts children. I have a new appreciation of special education and its importance to community especially since I am learning that the incidence of some childhood-only diseases is increasing. Finally, tonight I would like to recognize and thank my partners and colleagues at the Far Hills Group who have been 100% supportive of Grace and my family. Congrats also to A Little Pocket Change for their support!

Working Hard

2009-04-01T19:35:00.004-04:00

This is tough work! Grace had another good day with a full schedule of OT, PT, speech, school, and neuro-psych. Her day started at 8:30 am in our room with OT working with Grace to get herself dressed. At 9:00 it was off to PT where she continues to work on her stamina and walking. PT and OT are both done twice a day. Grace is beginning to look forward to coming home as are Deb and I. Upon her return home Grace will be doing 4 days of outpatient rehab in Danbury that will consist of OT/PT and speech, and the 5th day will consist of aquatic therapy. We would like to acknowledge another group of individuals who are raising awareness locally for RE as well as funds for the Friends For Grace Foundation. A Little Pocket Change, Deb's favorite jewelry store run out of a house by Kari Murray and Nancy Stein are donating a portion of their sales to the Foundation. The sale has been ongoing and the hours tomorrow are 8:30 am to 4:30 pm. The location is 14 Driftwood Lane. Please make an effort to see their jewelry and support a worthwhile cause.

Road To Recovery

2009-03-31T15:20:00.007-04:00

Grace is continuing her road to recovery. She still has headaches and dizziness which complicates her rehab, but Grace is pushing forward with re-learning how to walk and exist with, at least for now, extremely limited use of her left arm. Each day Grace moves a little bit closer to walking, but we will most likely be coming home with/in a wheelchair. We are planning to leave KKI on April 9th, a week from tomorrow. Grace will then get 4 days off and then resume an intensive outpatient therapy regimen back at home on April 13th. Grace is planning on going on another outing in a few nights to a swimming pool. We are excited to see how she takes to the water especially since she loves to swim and we have planned aquatic therapy as part of her recovery therapy. After swimming Grace will grab a quick bite to eat and then head back to KKI. Deb is going to go on that outing. Later this week Grace will be wired up to a computer for her treadmill workout so a computer can analyze her gait. It is very cool technology and you can watch a stick figure replication of yourself on a computer screen. The final tallies are in and the lift-a-thon and the swim-a-thon raised a combined total in excess of $32,000. Thank you Darien and the young athletes who took up our cause. The funds will go towards research focused on Rasmussen's Encephalitis as well as to fund college scholarships for individuals in need that have undergone hemisphrectomy surgery. We are looking forward to returning home.

Work And Play

2009-03-30T15:23:00.004-04:00

Beautiful Day

2009-03-29T20:06:00.001-04:00

Grace left the hospital for the first time in 6 weeks. I am having trouble posting pictures tonight, but I should be able to do so tomorrow. We went back to our hotel and then went for a nice stroll along thr Inner Harbor. We are staying in Harbor East which adjoins the Inner Harbor. It was a beautiful day and we just enjoyed looking at the sights and of course noticing all of the different kinds of dogs. We went bacl to our hotel and Grace crashed for an hour. We brought in some food from her favorite Mexican restaurant and then headed back to the hospital. All in all a great and exciting first step towards our return home. Tomorrow I will hopefully post pictures from the weekend.