Hi. I’m Lori. I’m new to Thru The Tulips. I’m really excited about “meeting” all of you and sharing our experiences, frustrations and joys together. My story is long and you can read more about details on my personal blog on this link and this link. Basically, in a nutshell, I am a mother of two micropreemies. Jaylee was born at 26 weeks weighing 2 lbs 2 oz. Reagan was born at 25 weeks weighing 1 lb 12 oz. Jaylee is a month shy from turning 6 and is nearly caught up. Her life has been full of challenges, special education, and pretty much anything you could throw at her therapy-wise. She had Cytomegalovirus which caused her hearing to be damaged from birth until age 4.5. During these years we unsuccessfully tried everything in the books and with therapists to help her communicate. At age 3 she was saying about 20 words and the doctors were considering diagnosing her with Autism. She was attending the Utah Schools for the Deaf and we were learning how to raise a hearing impaired child (deaf in her left ear, with the hearing aide 80% in her right) Fall of 2006 we had a miracle and her hearing slowly started returning. They can only surmise that the CMV did not actually cause permanent brain damage to the language center, just suppressed it’s ability to work. When the virus starting leaving her body (it usually stays for 4 years) her brain was able to process sounds. If you met Jaylee today you’d never believe that she ever had a hearing impairment. (her hearing is now 60% in her left ear and 80% in her right ear). Her verbal skills are awesome and we are so proud of the progress she has made. Her long-term issues stemming from the CMV and prematurity are a mild case of Ataxic Cerebal Palsy in her left side and ADHD. She can’t ride a bike, her conginitve processing abilities are slower than her peers, and she is a super big ball of hyperactivity, hyperfocus and overstimulation. But, man, she is one of the happiest kids I know. For what Jaylee’s life could have been like with CMV we are so grateful for the “small” problems JJ has. She is super sweet, smart, and such a loveable kiddo. Jaylee is in Kindergarten and is loving it. She loves to draw, write, and work on hands-on projects. Learning to read is proving to be a hard thing. JJ does really well with “rote” things but when you have to take them and process it to make an abstract notion we lose her.
Reagan is a sweet little babe. She is now 16 months old, 12.5 months adjusted. Since she is still young her life is still very unknown. She has the most determined personality I’ve ever met so if anyone will overcome the odds in her direction, she can. Reagan had a grade III head bleed while in the NICU and has seen some damage because of it. Luckily we’ve had her in physical therapy since she was 5 months old and it has helped her muscle tone quite a bit. Her tone is still very stiff and she has a hard time with gross motor skills. She just learned how to crawl two months ago and we’re working on cruising with her right now. We just got on the list for a walker and they will be watching her over the next two months to determine if she needs leg braces. Reagan was also recently diagnosed with Microcephaly.
My girls are awesome and I’m so lucky to be able to parent these sweet girls. For as draining as it is to have two children with special needs I feel very blessed for the opportunity to know what I do going into it with my eyes wide open on our second child. We have learned a lot over the 5 years of therapy with Jaylee that has been invaluable to our experiences with Reagan. I’m a stay-at-home right now and enjoy the time I have with my kids. I have an awesome husband who loves our little girls fiercely as life itself. I love running, working out, reading, writing, blogging, and am completely addicted to LOST. Thanks for inviting me along!
