Monday, January 19, 2009

So many updates!

I have so many updates that i hardly know where to begin. I barely blogged about December events and now January is almost over! Where does time go?! It seems like with the holiday's, Karlie's birthday, doctor visits etc....i forgot to blog. Well, honestly i didn't forget to write but i procrastinate something terrible. Speaking of which was one of my New Years resolutions, to STOP procrastinating. So, get comfy and see what we've been up to. This could take a while :)

Lately Karlie has been having a tough time at school. I'm not sure what the problem is other than she just doesn't want to be there! She tends to start screaming as soon as we pull into the parking lot and doesn't stop until we leave. She's been attending four days a week for almost three hours at a time but now she stands by the door and cries. Her therapy visits aren't any different. Last week her Physical therapist and Occupational therapist suggested that we cut down on our visits. They basically don't know what to do with her since she's so unhappy. Now we'll be seeing them on a consult basis once a month, rather than once a week. Our Speech therapist moved to Colorado in November and a replacement isn't expected until May. So in almost two years time we've went from 7-11 therapies a week down to OT and PT once a month. This is a HUGE difference that worries me with regression but I'm ready for a break too! Since tax time is around the corner, I've started adding up our deductions for travel due to therapy. Last year Karlie attended 223 therapies. That adds up to 7607 miles and I'm not finished calculating yet. I hope we'll be able to take our first family summer vacation with this unexpected money. We won't go far from home but we all need to get away and have a little fun!

Here's a pic of Karlie in her new helmet. We've been waiting for it since June so I'm just glad it's finally here. She's had so many nasty bumps on her head maybe now we can prevent a few. Three weeks ago we decided it was time for the girls to have their own bedrooms. Emmaleigh is 8 and beginning to want some privacy. It was also really unfair for her to wake up in the middle of the night because of Karlie's screaming. Both girls LOVE their new rooms and their own space. Karlie has been attentive to toys she hasn't looked at in years. Now we're looking into padding the walls so we can take her helmet off yet she can be safe in her new space. We're open to suggestions since my idea is rather pricey.

Before Emmaleigh started school we found out she had severe eye problems. Her lenses are are shifted out of place in both eyes and have probably always been that way. The concern is not only will she have to have eye surgery in the future but lens and retina detachment are common in people with Marfan Syndrome. This is a genetic connective tissue disorder. Connective tissue is all throughout our bodies so many areas can be affected. We had Em tested and she does have a mutation that is associated with the gene that causes Marfans. We don't however have anyone to compare her mutation to since she's the only one ever reported with it. Her heart and vessels, lungs, skin, dental and skeletal system could all be affected. Only time will tell but we're praying only her eyes have been affected. I'm not looking for pity by sharing this I'm only asking that you include her in your prayers. She's an amazing kiddo who makes straight A's and A+'s along with being a terrific sister! With all the fuss about Karlie, she handles it so well and even tries to educate others.

Learning of Emmaleigh's health issues was especially hard since we already have so much to deal with emotionally because of Rett Syndrome. Hearing something is wrong with your child doesn't get easier with repetition. The last few months i feel like I've lost a bit of my Pollyanna attitude. The skies aren't always sunny so it's hard to look on the bright side of things all the time. I think the holidays will always be hard but the way some of our friends and family have dealt with the Rett diagnosis is very hurtful. Part of me still mourns for what I've lost and i don't know if that feeling will ever go away but I'm dealing with it. One of my most hurtful losses was that of my childhood best friend. When we received Karlie's diagnosis she made herself scarce due to her own fear i suppose. Surprisingly some of my family members have reacted the same way. They don't stop by or even call to see how we're doing. Out of sight, out of mind? or is it If we don't know and we don't ask, then Rett and Marfans will just go away? I certainly wish it were that easy! I refuse to let myself dwell upon the pain they have caused me anymore. If you're reading this and feel guilty, then this probably applies to you. You have caused me heartache but i forgive you. After all, when one door closes another one is opened. I learned that firsthand by losing my best friend and a few family members but i have gained so many more than i ever lost. The friends i have gained understand my life as it is everyday because of our Rett connection! To all of you Rett Mommies that read this, thank you from the bottom of my heart. One of my special friends passed this on to me so i felt i had to share. Maybe it's what prompted some of my sadness today but it's such a powerful message to those around me. Please follow the link and take a few minutes to hear this beautiful song. It never makes you feel bad inside to help and love those around you. Love and hugs, Kim


Brooklyn and Kelly said...

THank you for posting that song- I love it! I posted it to my blog too - hope you do not mind. I think it is a message many people need to hear!
Thanks also for all of the updates, I am so sorry that Karlie is not loving school right now. I hope that changes for her real soon - oh...I keep meaning to ask - how did she do with the My Tobii? We want to try something with Brooklyn.

Felt and Brandi said...

ok, I'm crying. I love that song. Kelly is right, people really need to hear it. I hope school gets better for Karlie. I wonder if something is going on in the class. I wish we lived closer to you guys. I would provide speech therapy for your precious girl. My thoughts and prayers are with you for both girls.

Please join us on Karlie's Rett Syndrome Journey ~ Until we find a CURE!

~During Vital Stim Therapy~

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My photo
I am four years old. Last year i was diagnosed with Rett Syndrome. Rett is the most physically disabling neurological disorder on the Autism Spectrum. I can't speak or use my hands anymore but i'm a very happy girl and my blue eyes speak volumes! Typically, Rett only affects females and strikes between 6-18 months. Less than 4,500 girls have been diagnosed in the US but many have been missed. Currently there is NO CURE but researchers are working hard and Rett was recently reversed in mice!!! Please join us in supporting funding for a cure. Please visit and to donate. I was born healthy and developed as i should have. I could roll over, sit up, crawl, play with toys and i could even talk a little but then things started changing. My hands stopped working and i lost intrest in almost everything. Instead of laughing, i cried. My walking improved, but my words went away. I stopped playing with toys, i couldn't feed myself, i couldn't even scratch my own nose anymore. My world was changing around me. I knew it, but was helpless against it. This is my Rett Syndrome journey. Please donate $$$ to unlock my world and so many others!

~Sand between my toes~

~Emmaleigh & Karlie~