|Hannah is 7 years old- living with Systemic JRA.|
I am also grateful for our doctors who advise the aggressive treatment approach for Jake and Hannah. Jake & Hannah's recent MRI's (cervical/jaws/knee/wrist/hands) were all good. Our doctor was surprised himself but said it was only because of their treatment and the aggressive medications! For the first time, I felt good about pumping my kids with all these toxic medications! We also made the decision to have Jake & Hannah get ports. It was a hard decision to knowingly take away more from Jake & Hannah........but they LOVE the ports! Infusions every 14 days is so much easier with ports! Once again, I followed my heart and am thankful for our decisions!
During 2011- our family was able to share our story on Capitol Hill. Wow-- wasn't expecting it to be emotional to share our life in 5-10 minutes! Thinking about all the tears I have wiped in the past few years was difficult to share and paint a picture of our family's day to day life! I am beyond satisfied that our local Congressman, Dennis Ross joined the Arthritis Caucus. Thank you, Congressman Ross!
Bobby and I could not be prouder of Jake and Hannah. They have done amazing at accepting the disease , medications, treatments, and the zillion out of town medical appointments and all the things they can not do like their peers. It's hard on us as parents and even more difficult for Jake and Hannah to have to explain to someone about their disease. We continually hear, "but they look so healthy". It's wonderful that I no longer have to explain to educators about why we miss school for out of town medical appointments, or why my child may be a bit hyper the day after infusions due to steroids, and why my child is excused (per 504) from excessive running in PE class! ohhh yea- I am thankful for home schooling! I no longer wipe tears at night because my child was laughed at by peers and said he looks like a "discovery child" due to wearing splints, and I don't have to explain to a PE coach that my child has internal organ involvement and really does have abdominal pain and really should not be made to sit out of simple games because she didn't run the football field as a warm up.And I don't have to explain to a car line volunteer why my child isn't going to school even if she does look cute & smiles with a 102 fever and hasn't ate in several days and is in significant pain and being carried from room to room. And I don't have to worry about a teacher feeling she doesn't need to share with me when a child in class has chicken pox or H1N1 virus or half the class is out with strep throat. ohhhh Yes I am so thankful I don't have to explain to teachers that my children have not been vaccinated and are medically exempt NOT by choice! Jake and Hannah miss their friends at LCS but are overall much happier & healthier being homeschooled. I am appreciative for my friend, Nancy who got us through the first 9 weeks of "Sloan Siblings Academy". The Hospital Homebound program is the perfect fit for my children right now.
Many people in our community have reached out and helped us one way or another or even prayed for our children. Hannah's dance teachers have been exceptional kind and understanding! It's people like Miss Carol who have experienced sickness with a loved one that UNDERSTANDS. Our church pastor continues to pray for Jake and Hannah and calls for updates to direct prayer with his staff at FUMC. Many co-workers of LFD and LCS friends supported our family in the Polk County's Arthritis Walk. Our family has raised over $25,000 in the past 3 years. This money raised has a huge impact on our family and truly gives us HOPE for better medications and a CURE! We are also appreciative for our family who lives out of state who has kept our children on their local church prayer lists. It's humbling to think strangers in another state are taking the time to pray for our children and we THANK YOU!
|Jake is 9 years old - living with Systemic JRA.|
As we look back at 2011 happenings in our JRA Journey- we know we have a lot to be thankful for. We will never give up HOPE to find a cure and hear the bell ring! Thank you for those of YOU who have helped our family keep our smiles and faith strong as ever!