TheRaceForGrace.com

Grace is home again which is quite a blessing. Especially when last week we really didn’t know if she would ever see home again. There is so much to do. We have to make our home safe for Grace, keep up with med management and keep in touch with her doctor and monitor her closely. Safety is the biggest issue because Grace is a drunken sailor right now. I pray that we will settle back into “normal” life (ha ha) and keep her sleeping and safe.
Thanks again for all your help and support. We really are continually overwhelmed by the love around us.
Peace,
Tara

Dear Friends,
Grace is still at Hasbro children’s Hospital. She actually slept last night and the night before (drug induced) for the first time in weeks. She’s extremely unstable on her feet during the day and very erratic at this time but we’re not giving up on her. She’s still fighting hard and so are we and her devoted doctors and nurses.
Everyone else is continuing to stay afloat and thanks to friends and family, my four other children are managing to have quite a nice school vacation. I’m sure they’ll never forget it. They’ve been all over the place.
Thank you all so much for the prayers and offers to help us. We are so grateful and will never forget the generosity of those around us.
I do still know that Grace is truly in God’s hands at this time and although it’s confusing why she endures all that she endures, someday I will understand why and I will be at peace.
I’ll let you know when Grace is home.
Love,
Tara

Just a brief update…
We went into Hasbro for a scheduled EEG (24 hour monitoring). Doctors have discovered that when Grace falls asleep, her brain goes into a hyper-state of brain spikes and seizures and it happens almost from the moment her eyes close.
Therefore, she is not getting any rest. We’ve been concerned lately about her state of exhaustion and at times, lethargy and now we know why. It’s so disheartening because of all the things Grace can’t do, we now know that added to that list is sleep and we all know how crucial that is to quality of life.
The night they gave her a treatment of a high dose drug (that came with its own risks we had to deal with) and she spent the whole night vomiting and also got no rest. The next day (yesterday), she could hold nothing down and also, was unable to sleep.
Last night, she went to bed without food or drink, dry, tired and again, unable to sleep despite the “high dose” drug treatment. She is still having her “pain episodes” also, which are cyclical and treated with a very strong pain killer. Watching her be deprived of basic rest and sleep is torture for me and torture for her to endure. She is in no condition to come home at this time so until she is stable, she will remain at Hasbro. (Thank you Dr. K!!) As usual, she is making lots of friends and is well cared for at Hasbro.
David and I are fine. I have a new definition of “tired” and have no complaints of our own, thanks to Grace and her struggles. We are now realizing that Grace hasn’t really gotten “sleep” for probably weeks, as we’ve suspected her nighttime activity was related to seizure activity but never thought things were this bad for her.
Everyone else here is fine. Kids are once again managing the shuffle and chaos of Mom and Dad in the hospital with Grace. They pray for her every night and all I ask is you do the same.
I’ll let you know when we are home again.
Enjoy your sleep tonight with new appreciation and be thankful for simple gifts that we all take for granted sometimes.
Love,
Tara

Hi again,
Right after I sent the “Gracery List” email this afternoon, I received about 5 “Google Alerts” about a new treatment for Rett. Attached is one of them. The study must have just been released to the press. It certainly refreshes the wind in our sails once again and reassures me that the efforts are working and we need to work harder than ever to bring us not closer to the cure, but actually get us to the cure. We are actually moving into a new mindset of raising not only research dollars, but also money for treatment and later: the cure.
Headed to RI Hospital (Hasbro) tomorrow for a few days with Grace for some testing and treatment exploration for seizure stuff. I will be around later in the week to get back to you.
Thanks again and enjoy the exciting news…knowing that you are directly responsible for contributing to the search for a cure for Grace and all the girls in the world who suffer terribly from Rett Syndrome.
Love,
Tara

Study Suggests Possible Treatment for Neurological Disorder Rett Syndrome

Before any of you good people come to see Grace at Hasbro, she is now home again.
We are kind of on the “U-turn” plan and will bring her back if things don’t stabilize or improve. Unfortunately, all treatments and medications are trial and error at this time so there is no crystal ball and this territory is certainly unchartered.
I’m in between brushing teeth and reading books and trying to normalize things for everyone.
I’ll keep you up to date.
Thanks for the prayers, emails, calls and visits. Grace certainly does bring out the very best in people and in the words of another wonderful Rett mommy who is dear to my heart…”she may not be able to speak but she says so much”. Thanks for listening.
Love,
Tara

Hi there.
Quick update. But before that…I’ve been inundated with emails and offers to help with kids, food, shuttling, and of course the endless stream of prayers for Grace going up at a good clip.
THANK YOU!! THANK YOU!!
Well, Grace is still at Hasbro and still having her severe pain episodes. Doctors, pharmacists, specialists, nurses, etc. are all working extremely hard to help Grace. It’s been a long week (and it’s only Wednesday!). Ben had his eight birthday Monday on Hasbro 5 and got an ear infection and fever for a gift!!! He was a good sport about it though. The birthday bunny snuck into Grace’s room and miraculously (literally) left a slammin’ black shiny acoustic guitar for him. That was no small deed to accomplish but Ben couldn’t have been more deserving along with the rest of my kids who have been so helpful, understanding and patient as our lives once again explode into controlled chaos as we shuffle and shift around to cover everyone’s needs.
Yesterday, my mom survived breaking down on the I-95 during rush hour with most of my children in the car with her. Luckily, my dad was not too far from them and was able to arrive in time for a quick rescue. Poor Lily is only 2 and a bit unraveled but we are reading extra books tonight and she had an extra long soak in the tub giggling with sister Meg so we are currently achieving some stability on the home front.
Friends and family have been graciously signing up (and being assigned) for Grace’s meal shifts. So once again, in a seemingly hopeless and heartbreaking situation…we manage to pull through with help love and support from all around us. I continue to pray for one main thing…HELP and I can’t say I haven’t gotten any so for now, prayers are being answered. For the big picture…I try not to look at it. It truly is one day at a time with Grace ~ and often one minute at a time.
Love and Faith,
Tara

Hi Friends of Grace,
I just wanted you to know that Grace is currently in the hospital for testing, observation and management of severe pain episodes. These are episodes that have been plaguing Grace for two years and at this time, they are intense, frequent and causing her quality of life to be extremely poor. Typically occurring a couple of times a week, they have been occurring 3 and 4 times a day. I would equate her episodes to be equal in terms of the exertion and the pain that a woman experiences during natural child birth (and I’ve had five so I know). As a family and with Grace’s doctor’s, we have decided to try her on liquid morphine to alleviate her suffering.
Although, we still have no answers and the morphine only relieved her pain for a short time, I do feel completely wrapped in the commitment, concern and care that the doctors and nurses at Hasbro have for Grace. So far, there has been no effective treatment and Grace continues to mysteriously suffer a great deal. I don’t know what I’m praying for anymore ~ just that God steps in soon to help her in whatever way that may be.
Everybody wants to help her and everyone is doing as much as they can to find a way. For you all…I ask the same thing as usual ~ keep her close to your prayerful hearts as often as you think of her.
I’ll keep in touch.
Love,
Tara

Hi Everyone!
It feels like Race for Grace was months ago and it’s only been 10 days. Donations are still coming in daily and our total is over $100,000!!
Don’t forget to look at George Ross’s gallery of Race for Grace 2008 pictures
All pictures are available for purchase and there are well over 400 pictures of Race for Gracers. All proceeds from these photos will go straight to IRSF thanks to the generosity of George, the photographer. Please let your friends know about it in case they have a loved one in the gallery and they might like to have it. And remember, if you’re not in the gallery and you still want to buy a picture, you can always order a 13″X 20″ of ME!! Of course I am kidding. Unless you really want to…the matte finish is flattering for me.
Anyway, the website www.theraceforgrace.com (Click Photo Gallery under Grace Links) has been recently updated with more pictures from Race for Grace and photos from the luminaries that were on display the night of the Race for Grace.
We are awaiting news of a clinical trial to begin soon in Boston. I will keep you posted.
Keep praying for the miracle. There was an article in the Providence Journal yesterday about determining sainthood for the late Pope John Paul II. A big whopping miracle would be hook, line and sinker for his sainthood. I personally think if he wants to demonstrate that he is in heaven with God, then he should zap Grace with a cure. Feel free to join me in asking him for this favor. There have been 1000 prayer cards distributed all over with this request for Grace.
Well, that’s all for now folks.
I’ll be in touch soon,
Tara

Hi everyone,
Quick updates for now…
Grace is still at Hasbro.  She may be in for another day or so but we’ve been told she’ll be home for the weekend.  EEG is “very abnormal” even on her seizure meds so they are working on things and observing her closely. She was admitted Friday night after some very scary events of stumbling and extreme behavior changes. She’s got all the leads cemented into her head again with another big gauze turban on.  She’s tolerating it pretty well. 
There continues to be a house party every night with all the Reddingtons on Hasbro 6!  And this morning, even the Easter Bunny managed to get out of bed (after working all night) and greet the school bus loaded with cheering children.  Lily was a little freaked out though!!
I’ll let you know when she’s home again. 
Thanks for the prayers,
Tara

Hello Grace Fans Apart from the continual hills and valleys inherent in life with Grace and Rett Syndrome, life continues to move forward for our family.  Grace has a walker now which actually looks more like an ATV and Sam, Ben and Meg think it is an ATV as they have found unique and spectacular uses for it (without Grace in it of course)!! 

Grace is receiving occupational therapy (OT) twice weekly and PT weekly (in the process of increasing to twice weekly) and speech therapy weekly. We did visit Dr. Khwaja at Boston Children’s Hospital who explained to us that the old theory of Rett Syndrome is that you help the girl be as comfortable as possible (medication), get them into a wheelchair and basically “wait for them to die”.   (more…)