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Monday, March 30, 2009

Lagger

Yes, I'm lagging. I have not updated in a while. Shame on me! I will be back on the ball, I have pictures and video to share. Our world has been consumed with battling these insurance companies, and to be quite honest - they suck the life out of you! We can't see this doctor who is out of our Network, but go see this one who is, and see if they will send you to the out of Network doctor, blah blah blah. It's enough to emotionally drain you. I have never experienced what people talk about with insurance companies and the frustration, because we have been lucky enough to be healthy and not needing any type of specialists, etc. Of course, we are getting a full dose with the dealings with just trying to get this darn ERG with Gavin. It's a mess!

Have I mentioned insurance companies suck?

I know, it's a double-edge sword. Gotta have 'em, but they can make your life hell because they can, and it all comes down to the almighty green dollar. I am learning more about this, and it's flat out wrong! My heart goes out to everyone who has battled insurance. I am thankful my son does not have a life-threatening illness - otherwise I think I would be in the loony bin!

Have I mentioned insurance companies can kiss my left toe?

Ok, enough. I'm off to blow some steam. :)

Wednesday, March 18, 2009

100 dozen cookies!

Two days into cookie baking for our donaters and we have baked 100 DOZEN cookies!

Cookied out, exhausted, but SO much fun! It's so nice to see all these cookies spread out packaged and ready for delivery/shipment, and know that each little bag represented a person who donated money. It's a great feeling!

As delicious as these are, I could care less if I put another in my mouth. Until tomorrow :)

I will post some pics so you can see our assembly line. I still need to organize uniforms for tomorrow's game and go to the store and buy snacks for the game - my house is a disaster, and I think my husband will wear dirty socks tomorrow to work. All in all, the last few days have been worth it. You guys rock! We will hopefully be finished tomorrow...

Tuesday, March 17, 2009

Visual Reinforcement

Check out the below photos from a brilliant artist. The lively colors are so vivid, and the attention to detail is remarkable. I just wanted to throw in a little art in this post. I loved the colors and wanted to share.





...Oh wait. Did I mention who the artist is? Silly me. Her name is Lisa Fittipaldi. She is a CPA turned artist. What makes these paintings and artist stand out from the rest, is a small detail I haven't shared yet.

Lisa Fittipaldi happens to be blind.

What we are capable of as humans is extraordinary and at best miraculous. Sometimes, even hard to comprehend. Our limitations are endless, and the possibilities plentiful if you expand beyond where you think your capabilites are. Take a look at these paintings if you need a visual reminder.


Monday, March 16, 2009

Defining yourself

I think the one thing I would like people to get from Gavin's story is something so simple, but yet difficult to do. I find myself doing it. There are so many qualities and traits that make us who we are. If something is very profound about somebody, they are usually placed into a category of people. This is something we all do. It kind of goes back to my story of placing judgment upon strangers, or even people we may know.

Gavin, is a gorgeous, long-eyelashed, one dimpled, curious little boy who happens to have vision loss. Gavin is not defined by his disability. It is not all of who he is. For all intents and purposes, this blog is to share his diagnosis we were just given a few weeks back. What I share here, yes, is about his vision loss. What I share here, is just a part of what makes Gavin, Gavin. I will not allow him to be defined by his inability to see. I don't want him to be known as "That's the little boy that can't see, his name is Gavin." This vision impairement does not put a stamp on him, and then plopped into the "blind" category.

I think this is so true with all children who have some sort of disability or something about them that sets them aside from the rest. Aren't we all different?

I find myself doing the same thing, and I need to realize what I do. I tend to do the label thing, and I need to reallign my thinking - it is just human nature. I need to make sure Gavin doesn't cast himself. That is our jobs as parents, to no allow their label define all of who they are. I'm sure many parents with children of various impairments can somewhat feel the way I do. Obviously this is a new road for us, one that will hopefully fulfill us all with more than we have ever imagined. I will make sure Gavin is not defined by what he cannot see. There is so much more to this little human being than whether or not he can see his surroundings. Although having a vision impairment is HUGE, we will find ways around it to make all things possible. I am learning about myself (as I stated before) through this whole process. I have put labels on myself (good and bad), and I need to begin thinking outside those labels, because it's very easy to put limitations on yourself. Children need to be empowered to become all they can without restrictions being placed on them, simply by a defining, but powerful word(s).

Cookie baking week!

Ingredients are bought, coffe pot is made and we are ready for a LOOONG week of baking! I will update as the days go by with pics of our baking marathon. We will be baking, packaging and delivering cookies this week to all our supporters of Gavin's Groupies!

Tuesday, March 10, 2009

Update on donations - WOW!

I have not checked our donations the past few days. I am absolutely amazed by the support we have received. We have raised close to $1,400 online ALONE, and close to $3,000 in offline donations! My goal was $1,500 by June and we crushed that in just a few weeks!

Knowing this money is going towards the Foundation for Fighting Blindness to find treatments for Gavin and those in his situation moves me to tears. I am honored to be in the circle of people I have in my life - and blessed Gavin's story has touched those we do not even know.

One day I know he will see that sunset in all its glory. I also know it will be in my lifetime, and I will get to witness his expression. I long for that day.

You have 3 more days to get grandma's cookies with your donation. Read about it here if you have not done so. We have all our ingredients for our marathon baking days! I'm excited to bake and thank all of you for your support (and also have you fall in love with my grandma's cookies).

You have until the 13th to get your dozen!

To say thank you is an understatement. I am again at a loss for words as I think about all of our support, you all know who I am talking about - there has been so many people stepping up it has been surreal. I promise to make Gavin's story one in which will continue to touch people, and I will pay it forward and help those around me. It is my mission like I have said before. Emails and comments I have received expressing how I am in sense an inspiration is a huge compliment - however, the inspiration is my son. I am in a sense just talking for him, and expressing what he cannot. He is the reason for my positive outlook and my pillar of strength. He IS the inspiration, I am just the messenger. :)

Sunday, March 8, 2009

Embryonic Stem Cells

I hit "Publish Post" on my previous post, and then I received an email from Medical News Today regarding embryonic stem cells. I thought it was very interesting, and wanted to share. To start, I have my own views of research of embryonic stem cells, and have ethical concerns. I believe if we can get the same research from other than ESC, that is wonderful.

At the conference, we heard of one doctor share some ground breaking news regarding embryonic stem cell research. He spoke very briefly about how other cells are being used rather than the controversial ESC. Pluripotency is the ability to form any type of tissue. From what I understand, that is the advantage of ESC, because from these cells you can grow any type of tissue, inducing pluripotency.

Just today, a team from the Shanghai Institutes for Biological Sciences and Tongi University has achieved new insight into how adult cells can be induced to act like embryonic stem cells with the ability to form any type of tissue. Adult stem cells, like I mentioned before, can be found in bone marrow, etc. Adult stem cells are what is used in bone marrow transplants.

Quote from MNT: "The value of finding alternatives to embryonic stem cells would obviously be tremendous, and the ability to induce pluripotency in adult cells, is considered a breakthrough."

Information overload

This past Saturday, Troy and I went to the Southern California Regional Symposium in Long Beach. This is an annual conference hosted by the Foundation for Fighting Blindness. I walked out of there with a raging headache and a brain full of mush! There was so much information, for all retinal diseases. I took about 30 pages of notes, and held onto every single word for over 6 hours! They discussed current clinical trials, as well as discussed some which have ended but are pending FDA approval. I never realized how complicated, long and arduous these trials are - and how much it takes for the patients involved in the trials. There were two women who shared their stories, who are currently involved in a trial for retinal therapy, and they are seeing improvement.

I have high hopes and seeing what has happened to dogs with gene therapy is amazing! One type of blindness is caused by a lack of enzyme in the retina. They have found if they take a virus (which most of us have in our body - and does not make you sick) and they gut that virus, so all you have is the shell, and inject that enzyme, you can basically correct that type of vision. It is MUCH more complex than that - that is just a quick overview. I wish I could find the video that shows the dogs (they are brothers who were born blind). They did a study (injected him with the virus/enzyme) on one of the dogs named "Lancelot". Lancelot's vision was corrected and he was cured! He was no longer blind, there was not improvement, he was cured! It was astounishing to watch, and the river of tears flowed.

It was nice to know their studies regarding stem cell are from 'adult' stem cell and not embryonic. These adult stem cells are basically those found in bone marrow for example. They also used these virus cells for gene therapy, and also used umbilical cord blood/cells.

To be in a room full of families affected by blindness/vision loss as well as sitting next to blind individuals was very humbling. I was seeing glimpses of our families future. I honestly think during my whole life I have only ever met one blind person. Now to see myself trying to get involved in this community and surrounding myself with information left and right regarding vision loss is such a new world for me. Most of the audience was the elderly, due to the disease macular degeneration. It's such a terrible disease.

That is a quick overview. I will find my notebook and write more posts later based on detail findings that we learned. I was just really hoping Gavin would have had his ERG by the time the conference came around, so I could really focus in on that disease and ask intelligent questions to the panel of doctors. I was trying to digest every single bit of information about every disease because we don't know what he has yet. Hence the horrific headache!

I was honored to be able to attend this event. It was great seeing all the technology as well from the vendors who sell equipment targeted towards vision loss individuals. There are so many great things out there to allow them to be independent. I think that is key with any disability.

One take away point - PLEASE DO NOT SMOKE. Every single doctor and geneticist informed the audience you increase your chances of RP (Retinitis Pigmentosa) by 40 percent! Yes, 40. That's huge. RP is a group of genetic eye conditions, and they stressed you don't know what gene you are a carrier of. Especially if there is RP in your family, please don't smoke. RP can set in at any time, and can be a slow "cancer of the vision". You may have this gene, and it may be dominant in your case, but it can set in later in life. Please don't smoke. You can't control your genetic make up, but you can control smoking. I'm not trying to preach here - just sharing the strong suggestions from these doctors who have proof smoking exacerbates vision loss. Vision loss that may even set in later in life.

Thursday, March 5, 2009

ERG postponed

The ERG is postponed. I wrote about it a few posts down, if you would like a recap. We received the call Tuesday morning (the day before the appointment) and Children's Hospital informed us the insurance company has not authorized the procedure. GREAT! Nothing like gearing up and preparing for a day that will provide answers, prognosis and also unsettling nerves about the anesthesia - to have it pulled from under you hours before.

We are battling the insurance right now, and hope the approval comes very soon. I will keep you posted. We are very anxious to have this done.

Tuesday, March 3, 2009

Steven's Hope and American Idol

Wow - two posts in one day!

First, for those of you who would like to put a couple of hours here and there towards volunteer work, I think I found somewhere that is very inspiring. My mom and I went to "Steven's Hope" in Upland tonight for a meeting. Steven was a little boy born with a heart defect, who only lived for a few hours. His parents stepped up and started a charity - their story is pretty awesome. You can volunteer in their office, at events, etc. They are open to ANY help they can get. They run an insurance company as well, and need help to keep this amazing charity going forward. Baby Steven's story, and their family as a whole is very inspirational. I am going to do some volunteer work, if you would like more information - let me know. This charity is small, but their impact on families is HUGE. It's the mom and dad of Steven and one or two part-time staff. The rest is volunteer, so please let me know, and we can volunteer at some upcoming events!

Secondly, did you watch American Idol? Scott MacIntyre, is blind and a member of Foundation for Fighting Blindness. This is the same organization I am doing the VisionWalk for. Of course I was a crying fool watching him sing, because of my emotional tie to the situation. He also sang one of my favorite songs, I always get a good feeling when I hear it - and I think he did great. I admire his character and determination. I love seeing someone having a great moment, especially someone who has faced adversity. I've been inspired since I woke up today, I don't know what's going on? LOL

A changing day

It was the day after Gavin's diagnosis. I was still a mess, but trying to plow through with daily activities. I didn't want to go, but Troy and I were on our way to our board meeting, and the whole drive there I was throwing myself a little pity party in the passenger seat. Why our child? Why BOTH eyes and not just ONE? etc.. You know the whole bit.

It was rainy outside, and Troy and I parked and sat for a minute or two waiting for the rain to let up. I watched a woman pull up right next to us. She was in a standard SUV, and I could see two children in the back (one in a carseat). I began relating Gavin (in my mind) to her little baby. I thought to myself, " Oh how nice, a happy mom with her two healthy kids in her nice SUV". Picture perfect. (Yes, I was being sarcasticically mean - not proud of it). I was going through that whole day a feeling of parents not being grateful for their healthy children, etc. Earlier that day I was at Target, and found myself thinking really negative thoughts about a mother who was not being nice to her baby in the shopping cart. Not mean, but the mom was acting as though the baby was just irritating her. Yes, I have been there done that, I'm not a judgemental type of person. Far from perfect, I just try to not judge. I've been that mom just trying to get my shopping done with a whiny baby. I've felt her frustration before, but this particular day, I was being overly sensitive and just a plain old brat! I was being judgemental, and it was just a bad day.

Back to my story. I watched the woman get out of the car with her two "healthy, perfect children", and in my mind, dad was at home finishing up dinner dishes in their nice picture perfect home (yes, a jerk). Troy and I walked up to the building where our meeting was, and we had to wait outside for a few minutes for the door to be unlocked. The SUV mother was huddling next to us as we were trying to get in from under the rain. Her little girl adorable with her big brown eyes and curly hair glanced my way and smiled. The mom holding the car seat (which was exactly like Gavin's) with a big blanket over sheltering him/her from the rain and cold. The mom looked flustered, she let out a big sigh as she set the carseat on the ground as if it were a ton of bricks. Yes, I know they're very heavy, but bratty Jen in her mind was thinking "Don't sigh because it's heavy - just be thankful your baby can see!" Yes, again - I know I was being awful.

Small talk ensued. I could tell by the babbling the baby was about Gavin's age (found out they were weeks apart). We began talking and another person outside asked about the specialist, and wanted to know the diagnosis, and somewhere in the conversation Children's Hospital was mentioned. The mom interrupted (her eyes wide with what looked like a feeling of sympathy), and informed me she also goes to CHLA (pointing to the car seat) and asked what doctor we were going to see.

My stomach dropped. You know where I'm going with this.

We began talking and found out her little baby has a very serious disease. I don't remember the exact diagnosis, but his skin would blister or develop sores when rubbed against something. He had sores head to toe, and needed to be wrapped. My throat was a big ball of lumps, trying to hold back the tears. I gazed down at him, he was sleeping. He was wrapped under his warm clothes, and she showed me his wrapping under them. She proceeded to tell me they visit Chilren's Hospital several times a month, and has seen doctors at the Vision Center (at CHLA). The reason for seeing a specialist for his eyes is because he also develops these sores on his cornea, and one day these sores may cause him to be blind. They were pretty sure his odds were he would be blind.

My stomach dropped yet again, and I knew what God was doing.

Tears welling up, I kept my head down just gazing at her son. Looking at him so peaceful, but not knowing the physical pain he goes through on a day to day basis. Not knowing the anguish she goes through as a parent watching her son in pain from these sores. My stomach turned, and I was disgusted with myself. God was putting me in serious check. He knew I had no right to think the things I did, I knew I had no right - but he had to show me. My pity party, my thoughts earlier from the Target mom, and leading up this poor little baby were over. Just like that. In an instant. I am embarassed of myself to think I was being so judgemental (yes, not my most glorious moment). I was mortified at the thought I was judging another family, another poor mom, and more importantly this little innocent baby whose condition far worse than Gavin.

My compassion for others just went up a notch on the compassion scale. As disgusted as I was with myself for this, I am so grateful it happened. I could still be in my single-party-pity-party. I could still be thinking negative thoughts of others with their healthy children, when I don't know their story or where they have been. I'm glad God put an end to that escapade really quick. I was acting and thinking out of character, and SO thankful for that meeting with that little boy.

I think of him everyday, I truly do. I hope to see them soon, and reach out to them and express what a changing moment that was to me. She had no clue the impact of her crossing our lives was at that perfect moment, just a day after we found out about Gavin. I needed that meeting. The funny thing is, which is probably the most relevant part to this story was what I thought when I laid my eyes on her with her two kids. I said to myself, "How am I going to get through everyday meeting people with healthy children, and not be envious. How am I not going to be sad inside when I see other children without vision problems, wishing that was my child?"

God did what he did, and I guess I asked for it without knowing. I know I have a right to have my 2 second pity party and cry and feel sorry for myself every now and then. The difference is, that's not how I am 24 hours a day. I have my moments, and a new respect for the "...until you walk a mile in my shoes" addage. Maybe this story can answer some questions and fill in the blanks when people say I am being strong, or am dealing with this very well. That meeting made me grateful for Gavin and his condition. That meeting and the Children's Hopsital visit has completely changed my thought process regarding where we are today with our findings.

That little boy has inspired me, and made me a much more grateful and compassionate person and I don't even know his name. I don't know anything about him, except for his condition. Maybe Gavin has done this for someone I don't know just by me talking to them, kind of a paying it forward in a sense? Who knows. All I know is that was a changing day for me, and it plays a big part in my attitude. I am so grateful it happened, like I said. God was not having it, and I'm glad he didn't tolerate me for too long. It has made a world of difference!

Sunday, March 1, 2009

4 month checkup

Gavin had some shots on Friday, as well as a physical. This is the first time his pediatrician has seen us since the diagnosis, and when he walked in, he had a look of empathy. His doctor is a very quiet, kind, man. We love Dr. Warren! He sat and talked with us, and explained that Gavin is his first patient with vision loss. He mentioned one patient a few years back who had cataracts, and had a lens transplant, but nothing as severe and extreme as Gavin. He sat with us for a while, and we talked and talked.

Gavin is a thriving 4 month old. This was his 4 month checkup, even though he is 5 months tomorrow. His original 4 month checkup was pushed back due to our other appointments. I actually did a "mommy uh oh" and overlooked his appt a few weeks back, but we were in the midst of the diagnosis week, so I think I will let this slide without beating myself up too badly. He weighs in at 17 pounds, and he said his muscle tone is fantastic. He had planned to possibly send us to a physical therapist to work on some muscle development for him before he saw him. After examining him, and just watching him for a few minutes, he realized he does not need it. Most babies learn by mimic and sight (at this stage). Objects are enticing, as well as colors and familiar faces. Babies being interested in this, they want to move and look and turn their heads. Gavin doesn't do this. He moves based on sound, and his doctor said, as a whole, vision impaired (as well as hearing impaired) children tend to be delayed in their development. I thought Gavin was, and although he is a little slower, and put next to another 4 month old, he may not move like they do - but his doctor said he is doing just fine. He is rolling over (back to tummy). His neck control is good, although he looks down a lot (he's not enticed to look up).

He was happy with where he was, and we will make sure he stays on track. If at his 6 month well visit, he shows signs of delays, we will consider physical therapy. As for now, his muscle dexterity, his constant babbling (along with laughing and interactive "talk") is progressing as it should. He is in the 70th percentile for his age (which is funny because Landon was always like 5 percentile). I will start him on some rice cereal and veggies after his procedure on Wednesday. I was very happy to know he is on track and I have hope these areas will just continue to improve as he gets some work from the in-home teachers very soon.