I've mentioned that I'm not 100% sold on the Sabril. Perhaps it's because when Riley was on the ACTH her IS's went away, completely. On the Sabril she'll still have a few a day but, they are less frequent, not as lengthy and not as severe. So I suppose this is a small victory in the grand scheme of things but, long term, we need a better solution for these awful things.
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When I say we met with a "Team", I'm not kidding. I was expecting a few people in the room. When the door opened in walked a pharmacist, dietitian, nutritionist, social worker, psychologist, therapist and NP. I only recognized one so this was a new audience to talk to about Riley. I also always feel a bit of anxiety when there are so many people grilling me with questions. I even commented to them that it reminded me of the days in the PICU during morning rounds.
After a series of questions the NP looked Riley over and Riley was a rockstar. We had taken her "ear" off because Riley is now startling to loud noises. We think this is HUGE for Riley as it must mean she's hearing the loud sound and knowing she's supposed to have a startle reaction. She has only started doing this recently and when we both had the same jumpy reaction to a sound in the neuro waiting room yesterday it made me smile. Perhaps her sense to sound really is reconnecting? Riley followed the NP's light when she tracked her eyes, reacted to her when she tested her reflexes and moved her head towards the NP when asked. This was a good exam and make me think Riley liked her. If Riley doesn't like someone examining her she basically plays possum. Riley is much smarter and aware of her surroundings then most give her credit for.
After our exam and discussions Riley's doctor, Dr. Tran, came in to discuss moving forward. I had a list of questions in my head and was trying to make sure I got them all in before Dr. Tran was done! I feel confident that we did address everything and that we have a plan in place. We're on the same page in regards to the number of meds Riley is on and she knows what our expectations are as Riley's parents.
Riley is approved for the Keto Diet (almost). We're waiting on 2 more labs (see why it was so great to get these going early) and as long as those look good we'll prepare to go inpatient to switch over to the Keto Diet.
We're looking at a date in July and a date in August and we'll be back inpatient for 4 or 5 days as they figure out the right formula for Riley and switch her meds to ones that are "keto" friendly.
I'm actually excited about this hospital stay and cautiously optimistic about what the keto diet can do for Riley long term. We'll let you know once they give us the final go ahead which I am hoping will be in the next couple weeks.
I also want to share with you all ( sorry for the repeat if you're my fb friend) something so wonderful that is being given to Riley. And a bit about the family that is making this possible.
One of the things I least expected when Riley got sick was to be so touched by others who had medically fragile children and their stories. I also never expected to be so overwhelmed with the generosity, concern, care and support that we as a family have received. To this day we'll receive a gift or a message and it touches me the same way it did day 1 of Riley's journey.
I "met" Patrick's mom shortly before Riley was to start ACTH. I had known Patrick's Aunt for a few years and she put us in touch because I had so many questions and concerns about the ACTH. Stef had lost her angel baby Patrick and was still so open to replying to my emails and giving me information that I needed to be prepared. I think she gave me the most realistic explanation of what ACTH would do to Riley. Prepared the most for what was to come.
I'm going to share a video from Stef's facebook page that tells their story and shows what an amazing family Patrick has here on earth. They truly are incredible.
Team Patrick
It's hard to watch without tears because they describe what our life felt like when Riley was first diagnosed and yet they don't have their sweet baby to love on today.
This Saturday it will be 2 years since Patrick passed away. He was 27 months old. I was thinking about this last night and Riley will be 28 months old on Patrick's Angelversary. Gave me the chills when I really started to think about Patrick and his family. They decided to honor this day by gifting Patrick's adaptive medical equipment. If you don't know equipment like Riley's stander is expensive and rarely covered by insurance. Ridiculous.
When I saw that they had an adaptive stroller available I emailed Stef. We've wanted this exact stroller for so long but, didn't think that we could justify the expense as we will need a wheelchair in a few years(possibly next year) and we needed to save our medical coverage for the day that we pulled the trigger on the wheelchair. Well they picked Riley and now, again, for the millionth time in the last two days I am getting teary. Being that they live in WI I was doubtful that they would pick Riley.
From Stefanie Gerberding's FB page.
"So many things with Patrick felt meant to be and, honestly, a bit magical. We are feeling that magic with finding homes for Patrick's adaptive equipment. Riley is a beautiful girl in California with Infantile Spasms, like Patrick. Her mom, Megan Hopper, and I have talked a few times as my sister put the two of us in touch. They have participated in Team Patrick fundraisers even. Turns out the adaptive stroller is something they have been searching for and need! They will be flying out to pick up the stroller because they want to thank us in-person...doesn't that tell you how amazing they are?! We are so thankful Patrick's stroller is going to Riley. They are giving us the best gift of letting us share Patrick's memory and legacy. Please go and "like" Team Riley!"
I am blown away by the generosity and kindness that The Gerberding's have. So, after a quick chat with my mom and Dave I decided to go pick up this stroller myself. Shipping versus plane ticket is not that big of a difference and my heart is telling me that I must give Stef and Tim a hug in person to say thanks. I know that parting with these items can not be easy for them.
So I am sharing this today because it is my hope that you will think about the Gerberding family tomorrow. Whether you say a prayer for them to get through the day, just think about Patrick and the impact he had on all that knew him or do your own random act of kindness in his honor. We, as a family will be keeping Patrick's family in our prayers and will be finding ways to pay it forward in Patrick's memory tomorrow. And soon, hopefully in a few weeks, I hope to be meeting Stef and Tim in person and giving them a gigantic hug from Team Riley. We're just blown away by this amazing family and their incredible generosity.
Riley can not wait to use Patrick's adaptive stroller and feel his love through this amazing device that will allow us to include Riley in more of our daily activities.
People are good. These special children that are placed in our lives can teach us more about humanity then most adults can. Acts of kindness really do make an impact. If you doubt what a simple act of kindness can do for one person I hope your doubts are calmed by Patrick's memory and the impact his family is having on so many.
As a family we will continue to pay it forward in Patrick's honor. I hope you will too.
Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley
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