Nothing new

I have not posted in a while. Nick's eyes hurt all the time but there is nothing we can do but to put drops in them. So far the other eye has not burst open so we are just hanging in and living everyday. Always keep Nick in your prayers

Nick's weekend

Just to let everyone know that we are hanging in there. We are in the process of looking for a doctor for the cornea transplant. Through the national Keratoconus forum I have linked up to other moms in the same situation. It seems that there are not too many of us around. I hope everyone saw the slideshows that I put together, please pass on. Even though Nick can not see well, his spirits are always happy, which helps us deal with the situation. I will try to update more now, that I have started facing the reality that this is what we are faced with. Nick has a new OCD thing that that is hitting his chest and yelling like he is tarzane. Well, that will be interesting the next time we are in church or at a moving when this happens. Within the next couple of weeks I will video so you all can experience it yourself, kinda scary.

The day after (Feb. 13)

It has been really hard for me since, Nick's procedure did not work. We are in the process of investigation cornea transplants for both eyes. We want to know what the latest is, need to find the right doctor, when and where, and the main thing is to what life will be like after the surgery for Nick and our family. Because of Nick's OCD and what we went through with his hydrops, the mere thought of a life time of not touching his eye is very depressing. I put together this slideshow so you could better see and feel to where we have been and where we are going- Nick's journey with Keratoconus The next day, Feb. 13, I heard from a lady in Ohio, who's son has a similar situation. Carson is only 12 years old with Down syndrome and had a hydrops in one eye and needs the same procedure that Nick was going to get in the other eye. We have gotten together and decided to make it our mission to educate the public on what is Keratoconus and the new procedure Collagen Cross-Linking(CXL). We have put together another website and blog thumbsup4cxl.blogspot.com. I have put together a slide show called Stop Keratoconus with CXL Stop Keratoconus Connie is president of the Down syndrome Cincinnati, Ohio group. 35 states this past week meet in Washington so the past two weeks I was busy putting together material for her. Not only are we educating public but our politicians on CXL and the need to rework the FDA system. CXL has been very successful overseas for the past 10 years but because of the legal/regulatory barriers has not been in the US. If I can help 12 year old Carson or another person receive this CXL gift, I will do what I can. I will be posting soon more information but in the meantime, just pray that his left eye does not rupture into a painful hydrops and we can find the information we need to move on with Nick's eyes. I would like to thank all that donated to his situation. Because the Eye Center gave us back the check, we provided Chick-fil-A for Dr. Stulting and 12 of the Emory Eye staff and three basket of goodies for 3 main staffers. Rodney(Nick's friend and caretaker) and Nick made a trip to Hilton Head with the rest of the left over money$. Thank you Rob Reichel (brother-in-law) for making this trip possible. If you would still like to donate for Nick's situation please go here:Donate here. Please put in dedication on behalf of Nick Richards, The Richards' family thanks you for your donation and prayers.

2009-02-12-(sad news) CXL procedure

On February 12, 2009, Nick went to the eyecenter@emory.edu. Dr. Stulting and staff applied for a compassionate waiver for the Collagen Cornea Cross-linking Emory Eye Center in September, since Nick did not qualify for the clinical trial. Nick needed anesthesia to have the procedure so it had to be performed in the Emory OR. That meant Kathie had to transfer the CXL equipment across town to the Emory OR. All of this was huge, I mean Hugh in the way of effort from writing the compassionate waiver, filling the insurance and then the procedure. Emory and ourselves went into this blind. Well, what I mean is that NO one knew how thick Nick's cornea was because Dr. Stulting and staff were not able to get a measurement until February 12, the day of the procedure. Because Nicholas has advanced Keratoconus, we knew his corneas was thin especially in the right eye. Remember in July, his right eye ruptured, which is an indication of the very thinned cornea. It was hoped that the left eye would be thick enough for the CXL procedure. "Sad to say It was not thick enough so Dr. Stulting could not do the CXL procedure. So our only option is a corneal transplant. If you watched our cast video, you will very much understand what we could be in for with a cornea transplant. With a corneal transplant you can not touch your eye for a whole year. The stitches stay in for a year. We know that this is something that we have got to look at but for right now, we are just trying to recover from the sad sad news from Thursday. I would like to take this time to thank Dr. Stulting, Paul, Kathie and Patsy for caring. The time,enery and effort you gave will always be remembered. If you have read this blog and wanted to give a thanks to these guys they can be reached at plarson@emory.edu , doyle.stutling@emoryhealthcare.org, I will need to get the other addresses. It is going to be a long road ahead, just keep Nick and us in your prayers If you register for the blog everytime I post you will receive an email notice....

January 28,2009 Good News

OK, I have not posted in a while. On Dec. 12, 2008 we went back to Emory only to hear the good news. Emory Review Board had approved the compassionate waiver for Nick. Dr. Stulting's office said that they would call us as soon as they had the surgery scheduled. We got a call about three weeks ago from Dr. Stultings office and the surgery is for February 12, 2009. Just to let you know more detail to the compassion from Dr. Stulting. In the first place he like all the other doctors could have turned us away. We were willing to out of the country for a doctor to see Nick. Before Dr. Stutling excepted to process the waiver, he asked many of the doctors preforming the surgery if they would take Nick and NO one wanted to. This surgery is complicated in that patients are not put to sleep like Nick will be. Dr. Stultings office have to transfer all the surgery equipment across town to the Emory OR to preform the eye surgery. We do not know how much it will cost but how much is vision worth, Priceless..... As I write this, I am crying. Since Dec. 12, 2008 I have been putting off even thinking about this much less writing down the reality. I will try to post more often to keep everyone updated with this.

On Friday, October 24, 2008, I had a Halloween party. Friends- Mandel's, Wayne, Phillip, Earl and Shirlee was in attendance. We decorated pumpkins, played boo bingo, bobbin for apples, pin the nose on the pumpkin, musical tombstone, pumpkin pinata, decorated a pumpkin, eat pizza and cake. I had fun at my party. I was a monster this year. A video will be coming soon