It's hard to believe that there are only two days left before we leave for Colorado. The past couple of weeks have flown by. Our family is busy preparing to go, so much to be done. We appreciate every one of you and the support you have shown us. We love you all ❤️. Please continue to hold us in your thoughts and prays as we navigate this part of journey.
Only a little over a week until we head out! We are working hard to make preparations for the trip and get the camper ready to live in for the summer. So much to do! Jilli has had a rough couple of days, which serves as a reminder of why we are taking this huge step. It feels so right to be taking this leap, to be fighting for our child and her future. We are hopeful and excited. We will continue to run this funding site until we reach out final goal...we have hopes to reach it before we leave. We will be having a big garage sale this Friday to raise money. Thank you all for your support and prayers. We love you.
Good morning Team Jilli! Just TWO weeks from today, we will be heading out. Yikes!! So much to get done in such a short time. I'm posting this morning because we are in the process of trying to prepare our camper for the extended amount of time we will be staying in it. There are several things to be done to insure that it is ready, including building a ramp so I can get Jilli to the door in her wheelchair. Campers like ours are intended for short trips in warmer weather, so we are trying to make modifications and preparations. This is proving to be a bit more costly than we had hoped, and if anyone would like designate a donation for these costs we would appreciate it so much! Once we get it ready, staying in our camper will save us quite a bit of money...and, camping all summer will be quite the adventure ;) Thank you in advance for your support. Love you all
The time has come...we are heading to Colorado! We have been hoping that Jilli's daddy would get a position in Colorado with his current employer, but that hasn't worked out yet, so...the kids and I, along with my mama, are loading up and heading out! No more waiting, the time is now. Jilli needs, and deserves a chance for relief and for a better quality of life. We are taking a HUGE leap of faith, and believing that good things will follow. We are stepping out of our comfort zone and embracing what life holds for us down this road. We are excited, scared, hopeful, and exhausted :) We will be leaving on May 15th, just a couple of weeks away! So much to get done, but we are so excited to finally be making this step. We will be living in our camper for the summer, and John (Shane) will be staying here in Texas to work. What happens after that is yet to be seen, but we are hopeful, and expectant. We are continuing to raise money for the move, and for the expenses of running two households while we are there (even though one is a camper...lol!) Thank you to all who have given, and to all who can give. We also ask for your prayers as we embark on this new adventure! Much love to you all.
We welcomed our sweet Jillian Faith earthside in June of 2005. Since that day, our journey has been much different than we ever imagined. Hours after birth Jilli began having seizures, and by the time she was a month old she was having 40 to 50 seizures every day. Many tests, EEG's, MRI's, and consultations with specialists never brought us any answers, and prescription anticonvulsants never brought her any relief. We watched helplessly as our tiny girl was taken over by these violent, and heart wrenching seizures. There was nothing we could do, only comfort her as she screamed out in fear after each one. Absolutely the hardest thing I have ever faced as a parent, unable to help the one who needed me the most.
As time passed, the seizures continued as we tried to navigate this new world of doctors, and needles, and of a fear that we had never known. We realized that she was not reaching any typical milestones, and at 6 months old we were told that she had Spastic Quadriplegic Cerebral Palsy. She began Physical, Speech, and Occupational Therapies, which she still continues with today. More new things in our world...learning our new "normal"
None of the medications ever helped us achieve seizure control. So, we continued month after month, day after day...watching helplessly. Every day as I watched her endure the seizures, I would think to myself..."there has to be something that can help her". I studied, I researched, I made phone calls, I met with specialists...nothing. Nothing ever worked for her.
As I learned what these seizures do to her little body, how hard they are on her muscles, and how damaging they can be to her brain, my desire to find an answer only grew stronger. One of her Neurologists told me that her brain was so busy having seizures, it didn't have time to learn or do anything else. Unacceptable. As she has grown the Cerebral Palsy has begun to take it's toll on her little body. She suffers from spacisity in her muscles, which causes her great discomfort. She has to wear leg braces to keep her feet from turning in, and a wrist brace to hold her hand in the correct position. There are nights that she is having so much discomfort that she stays awake all night from her pain...and all I can do is hold her. Other nights are filled with seizures and restlessness. No child should ever have to face these things. Ever.
As my search for answers continued, a dear friend sent me an article last year about a little girl in Colorado finding seizure relief from the oil of the Cannabis plant. I wasn't quite sure what to think...pretty touchy topic, giving kids any kind of marijuana. But, I was intrigued...so I kept researching. What I discovered was amazing. Kids having more than 95% seizure control from this high CBD oil. I have now connected with an amazing group of people who are helping kids with this healing plant. Jillian is currently on the wait list for this strain of oil, and as soon as she is off the wait list, I will travel to Colorado with Jilli, and her big sister Emma, and little brother Sam. We will have to leave Jilli's daddy in Texas to work, and we will live in our camper to save money. Lots of sacrifices will be made...but all worth it, because finally, after all those nights that my heart cried out for help for my baby, finally...there is hope. Hope that Jilli will finally have relief and have the chance to live at her full potential.
All donations to Team Jilli will go towards the cost of relocating to Colorado, the cost of the Cannabis oil once she begins taking it, and the cost of her current alternative treatments that we pay for out of pocket. We thank each of you who have donated. It is never easy to ask for help, but the kindness we have been shown has been mind blowing. Thank you for your support, prayers, and positive thoughts.
Much love <3