Natalie Smole wrote -
Around 6 months old we noticed that Jaynie was favoring her right arm and leg. Our doctor told us to monitor it and as the milestones kept coming we noticed she was delayed in sitting up, crawling, and being able to hold things. Her left hand and arm were getting tighter and tighter. It became really difficult to open her fist or raise her left arm. Her left toes were beginning to curl and ankle became unable to be bent to 90 degrees. At 9 months old, after an EEG and an MRI, Jaynie was diagnosed with a stroke in utero, causing brain damage to her right frontal lobe, which has made her hemiplegic on her left side. Although the news was incredibly hard on us, we love her SO much and take comfort in God's plan for her. He has given all of us a wonderful support system where we get much of our strength. We cannot be thankful enough for our family and friends!
Jaynie update 7/1/2015: She is almost 2 years old and has had an amazing year! Zach and I have moved past “milestones” and understand that things will happen for her in “Jaynie” time. We’ll never know to what extent she’ll live a “normal” life because all cases depend on severity of the injury, treatments, as well as overall personality of the child. She is one tough, determined little girl so I have no doubt she’ll achieve more than we can imagine now. Her family is already SO proud of her. She is in OT, PT, Speech and music every week. (~210 hours of therapy in her life so far!) She wears a foot brace and hand splint, and gets botox injections in both, every 3-6 months to loosen her muscles so she can walk. She loves tackling her cousins and giving them unsolicited kisses.
We are doing this walk again this year because we are so thankful to have Jaynie in our lives, and would like to express that by giving back to all the other little stroke survivors out there. She is loved by all who meet her, especially by her grandparents who call her their “little angel sent from God”.
The donations will go directly to the Children's Hemiplegia and Stroke Association. CHASA awards all sorts of grants for hemiplegic children that need things like orthotics for their hand and foot, scholarships for college, as well as connect families of children with hemiplegia around the world to share support and information.
CHASA also has teamed with researchers in dozens of studies to recruit study participants.
We will be running the Twilight Run/Walk/Roll & Post Race Party
Lake Forest, IL
Date: Sat 09/12/2015
5-K, Competition Walk/Run
If you're in the area and would like to run with us or join our team email me at NatalieSmole@gmail.com and I will send you more details!
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was placed in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."- Psalm 139:14-16