I really need to take time to update this page more often, but to be honest, I have been feeling a little overwhelmed and “worried”. Stryder and I fly to Rhode Island for a medical appointment and conference at the end of this month and we have to fly to Ohio in January to get his service dog. We have been blessed with so much help from the community in the past and were able to pay some of the medical bills, but they just keep coming and the trips won’t stop.
The trip to Ohio will be for two weeks and we have to stay for two weeks- the hotel, car rental and three airplane trips will be so expensive. I am not able to work because of Stryder’s problems and one income doesn’t go very far. We will be taking the trip with Stryder’s Grandma (my husbands step-mom) as there needs to be two adults to help while training. The money we raised in addition to the cost of the dog has been spent on medical bills. The last EEG we did cost more than $3,000 alone and unfortunately, we have to have one every three months or sooner. I want to work, but I’m not sure what I can do. I did start a blog design site (http://angeladdesigns.com) but I’m afraid I cant make the money we need in the time frame we need?!?! I also have an idea for a great business, but it will take money to get it off the ground. It is my wish to do this so that we can provide for the long-term and not have to go through this. I always think it will be the last appointment, but it never is.
Soon after our trip to Ohio, we will fly again to see Dr. Francomano in Baltimore. Dr. F is amazing and was just announced the head of the new EDS research center opening. I am so happy we got in with her when we did and so happy that she took him when she doesn’t see children. We will also see her at the end of the month too- she will be at the conference.
These appointments are not the only ones we have to go to. Every Friday we travel to Bend, which is an hour away and then every month or two it’s Portland to Shriner’s and Doernbecher Children’s hospital. I do try to make those appointments conjoined.
Now for some good news:
Another girl, Amy, and I are working together on a new Epilepsy support group with the Northwest Epilepsy Foundation. I am so excited to finally have something in the area. We will be having meetings in Bend every fourth Saturday with either her or I guiding it. We will be having an Epilepsy 101 meeting soon as well as many events in November for Epilepsy awareness month. Also, next year (June) we will have an epilepsy awareness walk.
Stryder’s LOVES his new braces. He had never been able to walk for long periods of time, and yet the next day he walked for quite a while, telling me “I wish everyone could have braces so they can walk good too!” I am so proud of him. He is always showing them off proudly and when children ask why he wears them, he tells them honestly that they help his legs. He also wears knee braces to keep his knees from dislocating and also occasionally a wrist/thumb brace and some for his fingers when he is in school. We tried to talk him into getting camouflage or trucks, but he insisted on the flags and I’m so glad he won- the joy he has in his braces is unreal – they really help his pain, but he is still walking like he is pigeon toed, but he is just so loose his ankles flop where they want. We go back to Shriners in a few weeks to see if they want to keep these or try something else.
Lastly, we got a call from Make a Wish letting us know Styder was deemed eligible. It’s bitter sweet knowing that the Dr’s state he is battling a life threatening illness, but if anyone will beat the odds, it will be Stryder. We have been told several times by the Dr’s at Doernbecher and Mayo that we just never know what his body will do; even his neurologist isn’t sure what his plan is. We know his collagen is bad and he can “burst” anytime. The Wish team came a week ago Friday and asked him his one true wish and his reply “To spend my birthday at Disneyland Cars Adventure Land”. Stryder’s birthday is November 27th, which means it competes with Thanksgiving (this year the day before and next year ON) and so whenever really will have a birthday for just him, so this was important for him to have time for the family to celebrate. His backup wish (if they are not able to fulfill his first one) is a camping trailer. Stryder loves to camp and yet he needs a place to get away and rest, quiet and safe. In the past, camping always ended up with him exhausted and sick. Although he loves it, he is five and doesn’t know how to stop. A camp trailer would give him the freedom to have fun and a place to be without all the commotion of other kids playing around him.