Take a peek at Soleil puttin’ in the work with her Phyical and Occupational Therapists these past few days!
The Proton Therapy Treatment Plan has been completed and submitted for QA. Soleil is scheduled to begin tomorrow, in line with the St. Jude Protocol. Please send up 🙏 and positive thoughts that our Sunshine Girl continues to stay strong and faithful through treatment. Soleil knows she has all of you by her side 💛
SAY CHEESE!
Soleil has had so much progress just in the last few days! We are thrilled at all the goals she has met and more.
Proton Therapy is tentatively scheduled to start as soon as Monday. For the remainder of the weekend, you are welcome to visit until 6:30 pm. Soleil typically has therapy first thing in the morning and naps from 2pm-4pm. Same visiting rules will apply:
Once Proton Therapy Radiation starts, no visitors for 6 weeks since we want to keep her immune system optimal and brain stimulation down.
Thank you for the continued thoughts and prayers for Soleil! Papa Jesus is listening and hears all our prayers! The sun keeps shining for our girl!
Today, she was able to sit up on her own, feed herself Goldfish, eye track, pick things up, and stack blocks – she is hitting all her goals!
It’s been exactly one month since they’ve checked into the hospital and we are so inspired by our Sunshine Girl! As always, prayers move mountains and we are grateful for yours!
CSF is negative!!! After having the first Lumbar Puncture last week, a second opinion from St. Jude and a second LP this morning – we are over the moon that CSF results came back negative! High fives all around!
While we wait for treatment, Soleil is continuing with rehab services under Dr. Skalsky. This morning, he, as well as the physical and occupational therapists expressed how much Soleil has improved with eye contact, sitting up, balance, and responding! Woot!
Next steps: yesterday’s Proton Simulation went well! Again, we are blessed to be with the top Physicists and MDs at the Scripps Proton Therapy Center, as they are now working on a precise, detailed treatment plan scheduled to begin in two weeks if not sooner. Thanks Summer – we are eager to see the mask Dale is gonna make for Soleil!
We also ask for continued prayers and guidance on making a decision to move forward with the National Protocol (COG) or St. Jude’s Trial for treatment. We have faith the path will be clear. 🙏Prayers, advice, insight regarding these two protocols welcome!
Today, Soleil is on her way to Scripps Proton Therapy Center to have simulation and mapping done to start her radiation therapy! Let’s pray that sim goes well and is precise!
Happy Mother’s Day! Especially to the parents of superheros, fighting a villain more dastardly than any depicted in a comic book. Much love to all those heros who have a sidekick named Mom.
We have several fundraising events approaching in the month of June! Please make sure to mark your calendars for all these events and check the fundraising page page for upcoming events!
Our first fundraising event will be held at Board & Brew in Scripps Ranch on Wednesday June 1, 2016 from 10 am – 9 pm. Please present this flyer and 20% of your transaction will be donated towards Soleil!
Please note today and tomorrow’s visiting hours and please share:
12-2 pm and 4-7 pm with a friendly reminder to honor 2 people max in room (excluding May, Soleil & James) and time consideration of other family/friends who are waiting. Please speak in a low, slow voice. Side conversations and phone texts in waiting room please.
“One Love, One Heart! Let’s get together and feel alright!”
Today, Soleil’s newest words were “One Heart” after May and James sang One Love to her! Soleil continues to do her morning walk and speech therapy.
The other night, they did an EEG on Soleil to rule out seizures, and results are negative!
Mommy and Soleil are sporting new glasses to help restore her visual coordination.
And Soleil is also sporting a new hair cut – complements of her mom! Since her surgical sites are still healing and her head cannot be washed for another few weeks, they decided to chop off the Coolio braids and tangles after the EEG leads were removed.
Lots of therapy and improvement today! Keep on shining sunshine girl!!!
Starting today, Soleil will need all the rest she can get before starting treatment. It has been great seeing all our family and friends visit and show their support since they’ve been here. We appreicate all the love you guys have shown the Toledos. It’s now time to let them mentally and physically prepare for the up and coming weeks of treatment. Please check the blog for frequent updates.
Visiting hours and days will be limited. Once they are finalized, we will be updating you guys on when the appropriate times and days visitors are allowed. Medical staff advise that Soleil’s visits should be short and limited. 2 visitors MAX (excluding James and May in the room) due to too much stimulation not being good for her recovery. Stimulation – be it guests, side conversations, fast talking, staring NOT recommended. All Soleil’s senses go into overdrive affecting her blood pressure etc. The less frustration and stimulation the more her brain will recover and heal and the faster she can rehab. Her resting is also healing. When visiting, please use slow, short phrases in a quiet voice.
We know you all love her like your own, so please pass this on to everyone you know regarding visits. As soon as she is finished with treatment we will have a HUGE minion celebration!
In lieu of visits, feel free to send May and James videos or recordings that they can show Soleil throughout the day (her classmates in Vancouver have been doing this and bring a smile to Soleil’s face) or redirect your calls, visits and texts up to God for continued prayers!
Soleil Strong 