FINALLY SOME TRULY GOOD NEWS TO SHARE!! Harlow recieved her new Convaid Cuddlebug Stroller (Her first Baby Wheelchair!!!). And so far (3 or so days) we really like it! It gives Harlow the support she needs to be able to sit fully upright so she can actually look down at her hands and toys. It fills my heart with joy to see her face light up with excitment as she focuses in on things placed on her tray, unlike before when she couldnt actually see them because she had to exert so much of her strength and energy just to hold her head up that she didn't have enough energy left to try and proccess any thing visually (Its been explained to us that its kinda like patting your head, rubbing your tummy, while your hop on one foot). The only thing that is kinda a big problem is the fact that we cannot fit the darn wheelchair into our trunk.
We also ordered Harlow the Squiggles Early Intervention Activity System from http://www.adaptivemall.com we were told that we will be recieving it no later than Friday Jan. 27th!!!! Our heath insurance doesnt cover this piece of equipment and we would never have been able to afford it on our own, but due to the wonderful article written in the Sacramento Bee about our family and the AMAZING people (we think of all of you as Harlows Angels) who chose to donate to our little princess we were able to purchase the Activity System without any out of pocket expenses!!!!!!
Our goal is to raise enough money (With fundraisers, donations, and selling my crafts which I am going to be opening up a shop on etsy.com soom) to help fund particular pieces of equipment for Harlow that our health insurance has deemed either unnessicary or a "luxury type item" that our policy will not cover. We have tricare prime retiree health insurance and due to federal budget cuts, tricare was forced to reduce and cut most of their quality of life programs... I mean seriously out of all things they could have chosen to cut....
Makes me so mad......
Oh well what can you do..... I have to go mix up Harlows meds so to all of you, have a wonderful night!!!
Saturday, January 21, 2012
Tuesday, January 10, 2012
Harlow's Loaner Wheelchair!!!!
This is the Chair we had been fighting for more than 6 months to get and it still has not arrived so the vendor has agreed to loan Harlow this chair until her's arrives! How Awesome, if you could only see how hapy she is to go for walks and sit up with at least a 1 real peice of equipment.
Tomorrow is a big day, I am going to order her carseat and Physical therepy mat!
Thank you all for your Prayers, kindness and contributions.
Saturday, January 7, 2012
Sunday, January 1, 2012
Fundraising Idea...
Hello All,
I did not realize Harlow's diagnosis was not posted to this site so I will give a brief description of her condition. Harlow was born with a Severe Brain Malformation, Cerebral Palsy, Uncontrolled Epilepsy, Hyper Spastisity, Cortical Visual Impairment, among other physical and cognitive delays .Harlow has an amazing family that fights for everything spending countless hours on the phone with her insurance fighting for her equipment she needs desperately. Her Father on several occasions over the past 4 months has begged the vendor supplying her wheelchair to release it until the insurance was ironed out because it was further delay our daughters development only to find no help. It wasn't until the threat of telling the Sacramento Bee that he received a phone call from someone at the company saying they would have the chair to us without tour insurance information processed.
I did not realize Harlow's diagnosis was not posted to this site so I will give a brief description of her condition. Harlow was born with a Severe Brain Malformation, Cerebral Palsy, Uncontrolled Epilepsy, Hyper Spastisity, Cortical Visual Impairment, among other physical and cognitive delays .Harlow has an amazing family that fights for everything spending countless hours on the phone with her insurance fighting for her equipment she needs desperately. Her Father on several occasions over the past 4 months has begged the vendor supplying her wheelchair to release it until the insurance was ironed out because it was further delay our daughters development only to find no help. It wasn't until the threat of telling the Sacramento Bee that he received a phone call from someone at the company saying they would have the chair to us without tour insurance information processed.
2012 Is Here!
Hello All,
I know this is the first post in 3 months but I since it is the New Year we plan on making an extra effort posting every night before bed. The holidays have been rough, but despite our hardship we have amazing people everyday that send letters and make donations to our http://www.gofundme.com/ site. Since we had our interview with the Sacramento Bee on Christmas we have raised more than $1500 toward Harlow's adaptive equipment.
Our family would like to thank all of the people who have supported Harlow throughout this entire process, including recent extremely generous donations from Christmas.
Sincerely,
The Crisamore Family
I know this is the first post in 3 months but I since it is the New Year we plan on making an extra effort posting every night before bed. The holidays have been rough, but despite our hardship we have amazing people everyday that send letters and make donations to our http://www.gofundme.com/ site. Since we had our interview with the Sacramento Bee on Christmas we have raised more than $1500 toward Harlow's adaptive equipment.
Our family would like to thank all of the people who have supported Harlow throughout this entire process, including recent extremely generous donations from Christmas.
Sincerely,
The Crisamore Family
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