Wednesday, December 10, 2008

Hi! I'm Lori.

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!


Nancy Brown said...

Welcome Lori. I am new here. I am now living in Arizona but we are a micro preemie as well. Ty is now 3. Are they doing any thing with her Microcephaly? We have grade 3 bleeds and we are dealing with spastic CP.

WOW... I am so glad you are here!!

Cute picture of your cute family

Happy in Holland said...

I'm so glad you're here Lori! I was hoping you'd join us! Your girls are seriously so cute, and I can't wait to get to know you better! Like I've told you before, with all your "experience" I think you'll be a tremendous asset to all of us here! We've got so much we can learn from you. I hope maybe we can teach you a few things too! Welcome!

Lori said...

Nancy, no, unfortunately there isn't much you can do with Microcephaly. It's just engaging her brain cells -early intervention- to try and get them to rewire. We won't know the exent of her brain damage until she does/doesn't hit milestones. But, as we've seen with JJ, the brain is amazing and does pretty much what it wants when it's engaged and the stars align. :)

HIH, I'm glad I'm here too. Thanks again for the invite. I'm suuuure I will learn a lot too.

tiptoe mama said...

Wow. I knew your story would be great for me. Was your experience with the USDB in the Ogden area by chance, and do you know anything about the preschool program? Do you have any opinion about whether ASL helps or hinders vocal speech, or use of hearing?
My 3 year old. (36 weeks-not preemie in my book) has CP and 2 months ago we found out she has moderate hearing loss. Her special needs preschool teacher has suggested that the USDB might be a more appropriate place for her, but we're struggling with the decision. The audiologist says she needs a strong speech program with no ASL. At the USDB the "oral only" class seems to use mostly ASL. (?) The teacher there says the opposite of the audiologist. Just wondering what your experience has been.

Luke and Erin said...

Welcome! It sounds like our kids have the same sorts of problems due to different causes. My Bree is 20 months and says 3 words... Batman and want more. She also has a hard time with muscle tone on the right side of her body. A constant work in progress!
I am excited to learn more about your family and hear your ideas on how to help... I am very new to all of this. Thanks for sharing your story!

Lori said...

How severe is her hearing loss? This is my personal opinion--so take it for what its unmedically worth-- they need a good dose of BOTH ASL and speech if they have any hearing. Jaylee was never 100% at USDB. We felt like she needed both, so she attended morning school at USDB and afternoons at Weber State Children's school (excellent, if you can get your children there...Sherrie West... they work with your child amazingly!). After Jaylee's hearing started to come back we found that the all-ASL environment was really hard for her because she was trying to communicate with her deaf friends through speaking... she was easily confused. She'd get mixed signals as to the language rules in each class. We had both teachers meet and they tried to create cohesiveness in their classrooms, but eventually we transitioned her full-time to WSU using an FM system and they encorporated sign language into their lesson plans to help Jaylee transition and her peers talk with her better.

I think it depends on how severe your childs hearing loss is. ASL is an amazing tool for hearing impaired kids or kids who can hear fully. The easiest way we found to teach Jaylee ASL (other than just signing at home with her) was buying the series "Signing Time" and letting her watch that as much as she wanted to. I know local libraries also carry it.

USDB has some awesome services, though. If your daughter qualifies I would see if you could go to oral therapy there. I know Jaylee's diction and speech were tremendously boosted by getting oral therapy there. It's different than language/speech therapy. It actually helps the children learn how to round their mouths to say the letters and words and help them to learn what the sound "looks" like and "feels" like. That was huge for Jaylee.

Naturally, as JJ learned to speak more her ASL started to wean. She wanted to talk and not Sign. Now that she's had a two years off of sign she's actually showing interest in ASL again. She pulled out Signing Time the other day and was asking me signs for all sorts of words. :)

Anita Nap said...

Welcome to the group. I'm glad you found us. It's great to have people who can relate to how you feel or what you're going through.

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Powered Wheelchairs

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
KM 2500 Wheelchair

Keep Posting:)