Monday, January 5, 2009

We're Back!!!

Hi All,

Boy do I realize that is has certainly been some time since my mommy got on and put any updates on the the blog page, but hopefully you can understand that she has been very busy with me and the rest of my siblings including my new baby sister who will be 3 months already! I too have been keeping mommy quite busy as I have been sick on and off with cold and a cold for me takes a VERY long time to get rid of. I, unfortunately, don't have any updates on Julie as she and her family have also been busy, but rest assured once I receive updates on her and her family I will make sure my mommy posts it immediately.

Well, my grandpa was doing some internet searching as he tends to always look up stuff for me in hopes that there is some sort of something that can change my condition, and he came across this website/organization called: The Morgan Project please take the time to look through and see if there is anything that you can benefit from this organization.

I would love for my mommy to update you with more but she has to go and get some rest so that she can see us all back off to school in the morning.

I will be back real soon!

Thursday, September 18, 2008

Just want to say hello

Hi All,

It's been a little bit since we've posted but Both Julie and I have been quite busy. I for myself have been sick on and off for the past 2 months and it seems that every time I get off the anitbiotic I'm sick all over again the same week. This change of weather is certainly not helping me respiratory wise either. Julie has been quite busy herself to read more about what julie has been up to go to her site at Well, I will do my best to keep the page with further information within the next few days but can't promise that there might not be a gap as my mommy is expecting another baby REAL soon and I may be busy enjoying my new little sibling.

Monday, September 8, 2008

Bake Sale

Please come out and help support our bake sale!

Sunday, August 31, 2008

Gillete Children's Specialty Healhcare

Gillete Children's is a resource of information for children with Cerebral Palsy. Make sure you stop and visit and read their site.
(click picture to go to Gillete website)

Wednesday, August 27, 2008

Hugs and Hope for Sick Children

The information provided came directly off the Hugs and Hope for Sick Children Website ( Look through the site and make sure to put in an application for your child.

Who We Are
The Hugs & Hope Club for Sick Kids was created by Marsha Jordan in October 2000, as a ministry of encouragement for children battling critical illness. Every month we feature new stories and photos of sick children on our website. Our visitors and volunteers pray for, encourage, and send these children cheery postal mail (a.k.a."happy mail"). Our volunteers also sponsor many special projects to brighten the lives of the children on a regular basis!

What We Do
We at Hugs & Hope desire to share God's love with sick children and their families by encouraging and comforting them. We can accomplish this through "happy mail," goodie packages, wish granting, balloon bouquets, Christmas gifts, and more.
*We provide the rare gift of friendship: a listening ear, a sympathetic heart.*
"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ." (II Corinthians 1: 3-5)

Why We're Here
Part of the motivation for starting this group was the following plea I heard from a heartbroken mother: "My child is dying. Doesn't anybody care? Won't somebody do something to help me?" I determined that even though I couldn't do much, I could do SOMETHING to help ease the burdens of parents who must watch their little ones suffer. I can at least offer the hand of friendship, share the love of God, and walk with parents through their nightmare. I created this website to enlist other caring people to join me in befriending these families who need folks to get personally involved in their struggles.

Hugs and Hope Board Members:
Marsha Jordan, President
Jackie Waldorf, Treasurer
Mary Monk, Secretary
Tiffany Bennis, Director

A telecommuting Company to look into

The National Telecommuting Institute, Inc. ( is a website to help those who are of working age and are disabled to be able to work from home. I have to say that I tried as a parent of a disabled child to see if I could get a job working from home but I was told that I had to be the one who is actually disabled to qualify. I wanted to share this information with you all in case you are person with diabilites or know of someone that could benefit from this website.

About Hannah & Julie (more detailed bio)

Hannah Assata was born October 2004 a full term baby. Due to complications in the delivery process she was diagnosed with Hypoxic-ischemic encephalopathy, Dysphagia: Seizures, Respiratory issues, Spastic quadriplegic cerebral palsy and Hypertonia. Due to the dysphagia Hannah is not able to take anything by mouth, therefore, she has a G-tube in place along with a Nissen fundoplication.

Hannah spent the majority of her first year to two years of age in and out of the hospital but thank God for prayer, much help, love and support she is doing better today. Her medical struggles now are ear infections, tracheitis (bacterial infection in the trachea), and every now and then pneumonia. Despite Hannah’s medical conditions, she is one feisty, loving “I’m the princess” type of girl. With much love and prayer she has come along way even though she still has a long way to go. If you were to come across her you would never know how much of a fighting spirit Hannah has just by looking at her but considering the odds were seriously against her when she was first born and now she is 3 ½ years old should show anyone what prayer and determination can do.

Julianna Elizabeth was born on December 7, 2004. Julie can not eat solid foods, walk, crawl, roll, talk, see or sit alone, but hey she heard that! She was born, a full term baby sent home with mommy and daddy, with no problems. A few days later Julie sounded stuffy, went to the Doctor and ER, nothing. At around 4 months old Julie got the chicken pox's along with a rash on the left side of her face that took forever to go away. Julie was later seen by an eye Dr. who said she had Cortical Blindness which was followed by second opinion at Boston Children's Hospital and yes the diagnosis was indeed cortical blindness/optic atrophy. After dealing with many different hospitals and doctors she was finally sent to Children’s Hospital of Philadelphia where she underwent several test and finally an MRI which later showed lipomas and softening of the white matter and also areas that are oxygen deprived. No one had any idea and Pediatrics never saw anything. All tests kept coming back normal until her MRI in the summer of 2006 when it was the first time the neurologist said he thought Julie had Mitochondrial disease. Julie has since been diagnosed with Mitochondrial disease but despite all her medical challenges she is one sweet loving, huggable little princess that enjoys to be snuggled and kissed and is really fighting her disease and fighting to live to be a testimony to many others.