Keegan Griffin Fund

The button below will take you to the Ellis Chiropractic Paypal Page where you can donate any amount of your choosing. Your bank statement should show a payment to Ellis Chiropractic via Paypal. All funds raised will be sent to the Griffin family. If you would prefer to send a check you can send it to the above office address. If sending a check please make it payable to Deborah Griffin, Ben Griffin or Ellis Chiropractic… Thank you.

 

 

Overview

Keegan Griffin is the oldest son of our close friends, Ben and Deborah Griffin. For the past five years, Keegan (13) has been struggling with complex partial seizures, and was diagnosed with Left Frontal Lobe Epilepsy. The seizures were frequent, and often left Keegan feeling tired and debilitated. The effect of the seizures has resulted in many lost hours of schoolwork and playtime for Keegan, and lost hours of work and sleepless nights for his parents. Throughout this process, they’ve stayed strong and supportive of one another. This past week, Keegan was placed into care at Children’s Hospital in Seattle, where they performed a procedure called a Craniotomy. After, a few days of testing, there was concern that the surgery could result in a permanent loss of motor and/or speech function. With those concerns in mind, everyone agreed to go through with the surgery. After surgery, Keegan was walking and talking within 24 hours! He has since been released to home care and outpatient physical therapy. In an effort to help our friends’ family, we are setting up this fundraiser site to offset their growing stack of medical bills. Any help that you can give to the Griffin family would be greatly appreciated.

8/23/11 – From Deborah Griffin

So as of yesterday, it has been one month since Keegan’s surgery. We are so thrilled to tell you all he is STILL seizure free!! Just to type that gives this Mommy shivers. So grateful. His neurosurgery post-opt appointment went very well, and his head is healing up nicely. It’s at the point where it’s starting to itch a lot because it’s healing, so I catch him looking like a monkey feeling and picking through his scalp all the time! He thinks it’s cool to see the chunks of scab come off-he’s such a boy! His therapy is going very well, and I know he loves to see the progress he’s making because of it. He still has a long road to being 100%, but his progress so far is unbelievable, and we all couldn’t be happier.

Emotionally, Keegan’s having a pretty tough time right now. With school being around the corner, it’s raised some anxiety for him. He’s afraid of kids reactions when they see his head, and having a hard time with how to deal with it. Ben and I try our best to comfort him, and tell him just to be open about it, and tell kids what he did this summer…I mean what’s cooler then having brain surgery!! He knows first hand how cruel kids can be, and he’s concerned about being made fun of. He is his fathers son, (and if I do say so myself, my husband is a pretty funny guy) so I’m sure with a positive attitude, some confidence, and maybe a few jokes, he’ll make some good friends. He will be starting 7th grade again at Aylen, so I think he’s a little nervous being the “new kid”, but also excited to get a fresh start, and not have the stigma of his epilepsy attached to who he is…which is a sweet, caring, funny little boy. To his parents, he’s kinda a big deal. : )

We’ll be sure to keep you all updated when school starts, and let you know how he’s doing.

Thanks so much to all of you that have been following along during this roller coaster of a journey with our son. It means the world to us.

Deborah

8/11/11 – From Bret Fisher

I’m Keegan’s grandfather. This is my first post here, although, of course, I’ve been following all along with my daughter Deborah! So I want to publicly congratulate Keegan on his very great courage and patience as everyone moved the process along to where it is now: seizure-free!! I am so ridiculously proud of my daughter, and Ben, Keegan, Evan, and the dog, and the doctors, and the family, and Deborah and Ben’s dear friends, for being so loving and supportive. But most of all I am grateful to God for Keegan’s sake. Sometimes we can’t understand why things are happening as they do, but then God glorifies himself in the trouble, it seems. Now I am hoping that the whole family can enjoy the rest they so deserve after such a long and difficult drama. Have a big hot fudge sundae, Keegan! (But only if your parents say so.) Thanks to everyone!

8/9/11 – From Deborah Griffin

Keegan had his first speech therapy session yesterday, and as amazed we are by how well he’s doing, this little guy has a long road of recovery ahead of him. Childrens recommended speech, physical, and occupational therapy 2 times a week for him to regain some of the motor skills that we knew he could temporary lose with the surgery. Each session is 50 minutes long. We’re still waiting to get his physical and occupational therapy scheduled. He’s still having problems speaking, and for some reason his head always feels “heavy” and he is walking with his head slumped down. He’s favoring his left hand, for his right hand is still very weak. We knew from the beginning about these obstacles, and knew it was going to be rough, but we’re ready to do anything and everything to get our little boy back to 100%…

His little bump in the road, aka his kidney stone is completely passed, and is now being sent to the lab. We will hopefully get the results back soon, and some information to help us prevent that from happening again. Talk about rough times…The best news ever is he is still seizure free!! Each seizure free day is a blessing, and as his parents watching him day by day getting stronger, and seeing him smiling as much as he does now…well, it’s the best feeling in the world.

Tomorrow, Keegan has his first neurosurgery post-opt appointment at Childrens. We’ll be sure to let you all know how it goes…

Ben and I thank you all again so much for your continuous love and support…

8/4/11 – From Deborah Griffin

Keegan woke up Monday at 4am with severe tummy pain on his right side. He started vomiting so we rushed him to the ER at Good Samaritan Hospital. Even having brain surgery, I’ve never seen him in this kind of pain. Their first concern was that it was his appendix. After a CT scan, they discovered he was passing a kidney stone…he’s only 13 years old. As happy as we were that it wasn’t his appendix, I hated once again seeing him in pain. We think the worst is over, but because of his age, we have to go see a specialist to make sure everything is ok. Once again, he has amazed Ben and I with his continuous courage and strength…and the best part… 13 days out of surgery, and
still seizure free!!

I wish I could describe in words what this whole experience has been like…it’s almost like your whole world stops. We are very positive people, but this past year I feel like our family has been walking on egg shells just waiting for the next scary thing to happen… waiting for Keegan’s next seizure, or his next fall because of a seizure…It’s miserable to live like that. I’m hoping and praying that this is the last little bump in the road, and we can start living normal, happy lives again.

7/29/11 – From Ben And Deborah Griffin

We wanted to give you all an update on how our little man is doing…

Yesterday he had his first big outing. Went and saw a Beatles cover band play down at Pioneer Park. Although he was in some pain and exhausted when he got home, I think he really enjoyed himself. Baby steps… Physically, Ben and I think he’s getting stronger everyday, but having some difficulty getting his words out. Emotionally, it’s been really rough for him. He’ll say things like, “Can you hand me the Star Wars?” and he means the controller for the tv. This morning it took him almost 10 minutes to ask for some strawberries. His brain just couldn’t get the word “strawberry” out. He’s doing really good by using descriptive words, but it’s very frustrating for him to not get out the words he wants to. Ben and I try our best to reassure him that this was expected after his surgery. It’s amazing to see how his brain is trying to find new pathways to communicate, and know with his therapy it will get better. Still, as parents, it hurts to see him upset with tears running down his face unable to tell us what he needs or wants. We try to make light of it, knowing it’s temporary….we usually end up giggling with him about the silly, cute things that his brain comes up with. Laughter IS the best medicine, and right now we’re thankful to have as much as we do…

Lot’s of love,

Ben and Deborah

7/27/11 – From Deborah Griffin

We just received Keegan’s Neuro-psychological evaluation in the mail this morning, that was done end of June, and wanted to share a little bit of the results:

“Keegan’s intractable epilepsy has been a significant stressor and has significantly negatively impacted Keegan’s life. Keegan was not able to finish seventh grade this year. He is afraid to go upstairs to bed and has significant problems sleeping. He now spends most of his time on the couch and is afraid to get up because he is afraid that he will have a seizure and fall. This increased fear and anxiety is directly associated with his seizures. Keegan has shown increased sadness, fatigue, sleep disturbance, and anxiety particularly in the past several weeks, and his self-esteem is declining. From a psychosocial adjustment perspective, Keegan has declined significantly in his functioning since he was previously evaluated in October of 2010.”

Reading this broke my heart. Keegan was miserable, and me not being able to fix or even ease the pain made it that much worse. Watching him hurting was unbearable. All the hugs and kisses couldn’t make him better, and as his mother, it killed me. We are so grateful that the surgery happened when it did. Hopefully now our little boy can ride his bike, go swimming, and Mommy’s favorite part, walk upstairs to bed, and get tucked in with lots of hugs and kisses.

7/26/11 – Summary Of The Procedures – From Ben & Deborah

Mitch had asked us to explain a little bit more about the procedure that Keegan had at Childrens Hospital.

The first step was to locate exactly where the his seizures were happening in his brain. To do that, they placed multiple electric grids directly on the surface of his brain. This procedure is called Mapping. The doctors were also able to identify exactly where his speech/motor skills were located by using those grids. During this 7 day period, they also reduced Keegan’s medication to encourage seizures. This allowed them to pin point exactly where the seizures were happening in relation to his speech/ motor skills. The results were not as good as we anticipated. His seizures were located in 3 specific locations in his brain. The surgeon was comfortable removing one of the regions with little risk of permanent damage. The other 2 were more complicated. Removal of these areas would almost certainly leave him with permanent deficits. With these risks in mind, a plan was laid out by his surgeon to be semi-aggressive, and to be very cautious in removing tissue in these vital areas. It was THE scariest moment of our lives! Our number one concern was for Keegan to have a normal, happy life. Although there were serious risks involved, including permanent speech and motor function damage, Keegan deserved a chance for a seizure free life. His surgery lasted about 3 hours. When we got the page to come talk to the surgeon, it was the longest 15 minutes in our lives. We knew we could breath again, when he came around the corner with a big smile on his face. Not only did the surgery go better than expected, but he was confident that Keegan would recover without any permanent damage. He warned us that there might be temporary problems with Keegan’s speech, and movement of the right side of his body. Worst case scenario 4-6 weeks without the ability to talk. When we were called back to finally see Keegan in ICU, we didn’t know what to expect. Within seconds of our arrival, he opened his eyes, looked up at us with a smile, and told us not to cry. We knew then that all of our prayers were answered. Each day he grows a little stronger. He will need some physical and speech therapy, but we haven’t seen this amazing son of ours smile this much in years. The next couple of months will be challenging for him, but we have been told by all involved that he will make a full recovery. As far as the seizures go, only time will tell, but each seizure free day gives us more hope. We are so proud and blessed to be the parents of such an amazing little boy.

7/26/11 – Update from the Griffins

We wanted to give you all an update on how Keegan is doing…. He has been seizure free since the surgery that was done Thursday, the 21st. This morning was the first time he was able to shower standing up. This was huge for him, for he hasn’t been able to take a “normal” shower in almost 2 years. We’re looking forward for him to be able to have more of these milestone moments that most of us all take for granted. Ben and I are overwhelmed with the amount of support we have received, not only from our amazing friends and family, but from strangers as well.

Thank you all so very much.

Deborah

7/25/11 – From Denise Griffin

While at Childrens Hospital, Keegan’s first week was spent immobilized in bed, with an electrical grid on his brain for “mapping” purposes. Keegan volunteered to let researchers conduct tests during this time to help the researchers gather information that might help paralized people, or those who have lost limbs, use their brains to perform fuctions that they might never be able to do otherwise. This specific research can only be done when the brain is covered with the grid. Even though Keegan was exhausted and uncomfortable, he still did his best to help the researchers so they might help someone else. Keegan is my grandson and he is my hero…