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Saturday, September 4, 2010

How Time Flies!!

I can't believe how long it's been since I've updated this site!! Yikes!! Much has happened since January! Here is a short recap for those of you that have missed out on all the events.

Evie is growing up so fast! She is nearly 3! Her big brother Ian is 10 and in 5th grade! Wow! And big sister Kira is 5 and now in Kindergarten! They love school so much! We've added a band instrument to the mix now (Baritone - not quiet, what instrument is though?), missed the bus once already, had two different field trips, one of which meant that Kira rode home on the bus alone (she fell asleep and missed her stop - bus driver found her in her seat when he made it back to the bus garage! she cried of course and ended up getting a bag of candy out of it and a special ride home in the driver's van!) Evie starts 3 year old preschool in November after her bday! Crazy!
In April, Evie was diagnosed with Epilepsy. After the scariest three hours of my life, Evie was taken by Ambulance to the ER then Life Flighted to Des Moines to be treated by her Neurologists.

Jesse was at work that night and around 5:30 am I heard her, through the monitor, choking upstairs in bed. I ran up to find her grinding her teeth and making strange choking sounds. She was completely unresponsive, but I didn't realize what was happening. For about 2 hours that morning she was having Complex-Partial Seizures. We arrived at the Pediatric Office before they opened. While in the waiting room she began to jerk. The Clonic/Tonic Seizure kept spreading until her entire body was convulsing. This lasted over 45 minutes. I can't begin to describe in words how awful an experience this was. It took three doses of valium before they were able to get them to stop. (an adult dosage total)

Evie is on regular medication for the Seizure Disorder (Epilepsy). It is working well, though it caused four weeks of vomiting until her body adjusted. She only has seizure activity while she sleeps and the medication's purpose is to keep the tiny "sparks" from spreading across her brain and forming a full blown seizure.

After the puking calmed down a bit, we realized that she was still having trouble with occasional vomiting. Only when asleep, weird enough. This caused plenty of additional stress on us, worrying that she would choke and aspirate on the vomit in her sleep and we wouldn't know. After seeing a GI specialist, undergoing an Endoscopy and an Upper GI x-ray, she is now on a large dose of Prevacid to keep her from producing acid that would cause her to vomit. It is working!! Thank goodness! It took months to work it out and loads upon loads of vomitous laundry! Yuck!

Meanwhile, Evie got some new wheels! This is her Rifton Gait Trainer! We LOVE the PINK!
She absolutely adores walking around in this! Walking? Well, flying through the house ramming into everything is a more appropriate description. Lately she's been honing her skills in it! She is now able to traverse the house by steering and backing up and pivoting. She loves the tiled floors and the cold air return grates, as they make a wonderful bumping sound and vibration. We've been taking it with us to stores and in public so that she can get some practice being steered out of danger. She thinks it is all hilarious and can barely breath as she flies through the aisles. Everyone smiles and giggles with her in public. She's too stinking cute to resist!
In November Evie will be recieving a number of injections in her legs to fight the constant spasticity in her muscles. They will give her Phenol injections in her nerves that serve her hamstrings and adductor muscles. And they will inject Botox in her calves. This combination of injections will allow her muscles to finally relax. This is not only a more comfortable thing for her, but will allow her to move her legs in a more normalized fashion.
We are hoping to do a big walking push during the optimal time period while the medications are in affect. She may need future injections to keep her muscles from ending up in contractures which are extremely painful and make walking a near impossiblity. Many people with Cerebral Palsy have to have muscle lenghthening surgeries. We want to put that off as long as possible! Everyday we stretch her legs and arms to combat the constant contracting her brain is producing in her muscles. There is no cure for Spasticity in muscles. It is caused by the brain damage she recieved before birth. Keep us in your prayers in November especially as she will have to go under anesthesia yet again! (Endoscopy included sedation as well). She's been put under more than I have in my 30 years and she's not even 3 yet!
See Ya!! I'm outta here!!

Evie has been making great progress with her speech development. She has started babbling again!!! Lots of "mama's" "baba's" "vava's" and lately she's added "nnga" sounds as well as a very recent "rrrah" sound! Her understanding of our verbal communication has really picked up and it is so much fun to ask her things like, "Evie, do you want to play?" and she will look you straight in the eyes and nod her head "yes"!! So fun! Not only that, but her sign language comprehension has come along too. She is understanding many signs and has been working hard to mimic some. She is very good at, 'Hi/Bye', 'shoes' and 'more' (same sign for her), 'diaper', 'light', 'daddy', head movements for 'yes' and 'no' and occasionally she'll sign 'yes' with her hand. She is constantly clapping for herself, 'applause' and seems to try to sign 'applause' with her hands (looks like jazz hands). Her newest sign is 'roll'! She loves patty-cake and refuses to clap during it anymore, its all about the "Roll it" part!
In other news, Daddy finished school! Jesse is now an employed RN!! Woohoo!! This is a photo of his graduation day. We are so proud of him! Its nice to breathe a little easier, financially, now that he's makin' the Big Bucks! :) Way to go Daddy!!

Mommy (me), and her sister Nikki opened Green Leaf Spa in June and have been enjoying the wonderfully relaxing atmosphere to work in! It has certainly made things a bit more hectic for me, but its worth it to call it my own! This month, Sept., I will be attending a weekend seminar relating to hearing loss in children, and the next weekend, a Parents as Presenters Workshop which will help me present our story (Evie's Story) to professionals and families that need support. I have been hired as a Guide By Your Side (GBYS) Parent Guide through an Iowa hearing loss organization called Hands and Voices. These weekend workshops will be very helpful as I begin to help other parents and families with their new lives as Parents of children with hearing loss. I'm excited to go to these, but it will make for a very busy Sept.

1 comment:

  1. Thanks for the update Calley! I always love to hear the details about Evie. She is so precious and I love her so much. I'm excited about the possibilities for her with the shots in her legs, but I also understand that it will be a little scary for you guys. I will keep you in my prayers! Also, cool about the GBYS, sounds very neat and I know you'll do a great job with that!