Friday, July 31, 2009

Great News!

We have been approved! Dr. Lee at CHLA did his magic, and insurance has approved and CHLA agreed. Mumbo jumbo... blah blah blah. I don't know all exact details, but I do know we will be getting the ERG (Electroretinogram) at Children's Hospital LA very very soon. This will confirm our suspicion of the disease, and we can move forward with further blood work on Gavin, as well as with Landon, Troy and myself. The puzzle pieces will finally be put together. We have the end result of the puzzle, which is Gavin and his vision impairment - what we do not have for the past, almost 6 months are the itty bitty pieces. I am beside myself to finally be able to recognize the disease, identify more with causes and begin my work on the gene research. I am totally aware the gene may go unidentified, I get that.

We spoke to some people at the conference in our LCA group break out session. Some have experienced kidney failure/problems as well as seizures and hearing loss. Getting an identification of exactly what he has is HUGE. It will either put my mind to rest, or get on the ball and have continued tests done on Gavin for the above reasons.

Sorry family to hear this on my 'blog'. I finally got a moment to jump on here, and had to share! I could not keep it in any longer. We got word of this late this afternoon, Troy and I are elated.

This has been a very long 6 months of waiting.

Dr. Lee is my hero! He went above and beyond, and did not give up. THANK YOU!

And so our next chapter begins, and I'm so ready to turn the page.

Tuesday, July 28, 2009

Gavin's first OC Fair experience

Gavin loves music. He loved hearing his cousins "Jonnie and Brookie" perform. They ROCKED!

Can't get any better than three grandma's at the fair spoiling your kids rotten!

Waiting patiently for the next song...

Whoo hoo! I hear music.

The fair turkey legs don't taste as good as mine.

Enough Corn on the cob, Cream Cheese on a stick, turkey legs and Fried Avocado and twinkies for one night.

Thursday, July 23, 2009

Justice system

I'm going to take a moment to write about something that is very off topic. I, however, believe it is very important. It's not just important because it deals directly with my family, but it is important because it can happen to any of you reading this.

If you recall this post, back in April, my family was in a state of shock. As unbelievable as it still seems when I think about it, the reality is really setting in - and I miss my uncle very much. I miss seeing him, I miss laughing and joking with him, I miss him interacting with my kids, especially Landon. Landon still doesn't really understand, but he still asks about Uncle Richie quite a bit. All they would do when they were together was joke, laugh, punch, one another. Uncle Richie was notorious to be the instigator and sit back and laugh. A laugh I long to hear so badly.

My grandma lost her youngest of five children, her baby. Her child. My aunt Michi, lost her high school sweetheart. They would have celebrated 20 years of marriage this past July 8th. My cousins lost their strongest mentor, their father. And the list continues. A very long list continues and trickles to everyone who knew and loved him.

The reason for this post is to shed a little light to those who are interested how screwed up our justice system is. I know legislature is written, and we need to stand by and abide by the law. But, now, I question - why? I'm not going to go out and commit acts to challenge the law, I just wonder what kind of image we are giving youth.

Facts regarding this case:

- My uncle was on his own property, walking to retrieve his mail.
- Alfredo Antonio Ramirez hit and killed him, and ran.
- Witness saw Alfredo drive recklessly, run stop signs/lights, speed and 'stagger' blocks away as he went to inspect damage to his vehicle (aka his weapon of choice)
- Alfredo turned himself in days later (we believe to evade signs of alcohol in his system)
- Alfredo was TEXTING before, during and after the incident (records prove this)
- His family lied to authorities
- Alfredo was NOT remorseful, and judge even made a point in court about it
... and the list continues with SO much more incriminating information.

Alfredo Antonio Ramirez's punishment:
2 years in state prison, 3-4 yrs parole and restitution paid to the family

This equals approx 288 days actual time served. He will be walking amongst us as a citizen, next year.


You can read the Daily Bulletin article that made front cover detailing this past Tuesday.

My uncle died in 2009, and the man who took his life in such a senseless manner will be free in 2010. This past Tuesday, July 22, was the sentencing. We knew ahead of time the max would be 2 years, there was a possibility of him just getting probation. I will save the details of the court, and the heartwrenching testimony from my grandma, aunt and 2 cousins. Basically, the judge imposed the most he could given the plea bargain, 2 year max, etc. The judge actually brought forth details of the fateful night that he did not know prior to offering the plea bargain. He also acknowledged the families pain, and informed us Antonio does not seem remorseful, which was obvious. He also read over 100 impact statement letters we all wrote, including friends of how his death has impacted us.

A slap on the wrist for such a terrible crime. Alfredo had many choices that evening. He continued to choose the wrong ones. Choices that have forever changed the lives of so many. I don't understand how posession of marijuana, selling of marijuana, drugs, etc.. can bring a higher sentence than a LIFE taken. One of God's creations, as my aunt stated it. My uncle was a beautiful person, inside and out and he is worth much more than the punishment that is being given to the person who took his beautiful life. It's still so raw, and upsetting, and now after the sentencing, I see how our system works. And, sorry, but it sucks.

I do know however what punishment does not get met here through our system, will one day be met. I truly believe that. Until then, our family will be a voice to try to get some changes with our system. Because we are not the first, and sadly, not the last. The strict punishment comes when someone has killed 2, 3 or even 4 people on seperate occasions. Alfredo will be out one day, and he is a threat because of the lack of remorse. Odds are, he will be back in prison. And that is such a shame.

Uncle Richie, you are loved and missed! My kids will know you through my stories, and my pictures and my videos of you and that breaks my heart.

Fun times w/ 2 aunts, 1 uncle and a load of cousins! This was taken just this past January '09. My uncle is in the hat.

This is a pic of me and my dad and Troy. I am sharing this with you because this was the last day I saw my uncle, and from what I hear, the last day many of us family members saw him. We all spent the day at the racetrack, and close to 48 hours later, my uncle was taken from us. I was so happy on this day, my dad was happy, and we were all together. My grandfather's death was still so fresh for my dad and my aunts and uncles. It was a good day, and the last picture on my camera before our lives turned upside down 2 days later. It's kind of the 'old us' in a way if that makes sense. We are the same, but changed. Sadly I didn't get a pic of my uncle on this day, but I have the memory of this day, and our last hug.

Hold your family longer when giving hugs. I wish I had. It also reminds me to please look over the petty, and embrace the time you have with your loved ones.

We love you Unlce Richie, you will never be forgotten, or less treasured.

"True peace is not merely the absence of tension: it is the presence of justice." - Martin Luther King Jr.

Monday, July 20, 2009

Exhausted and hopeful!

I've been getting emails about the convention, and yes, we are back. I have so much to do, am in complete denial of the luggage staring at me in the face, and in even more denial of the mounds of laundry. I really need to get all my stuff done before I start posting. We got home close to 11pm last night, and Gavin's teacher was here this morning, so it's been a hectic day and so much to do.

Convention was awesome. Familes we met were great. The information we got was overwhelming and helpful.

I will post more later!

Thursday, July 16, 2009

Gavin cracking himself up

Rainforest Cafe

Me and the boys had a great lunch yesterday at Rainforest Cafe. We went to meet other families with visually impaired children. I had only an hour and a half to sit with them before we had to be back on the freeway to beat the traffic, since we were at South Coast Plaza. I always seem to get caught in horrible traffic with both kids in the car.

I explained to Landon since this would be a glimpse of our big weekend this weekend. He has never really been around other children his age who are visually impaired. It was nice to see the kids acting like kids. Vision or no vision.

Anyone can attest with a 9 month old active baby, restaurants aren't always the most relaxing time! Gavin didn't want to sit still, and didn't want me to sit still either. I was able to take 5 bites of my salad and steal a few fries from Landon and exchange a few words with the other moms and kids. I wish I had more time to get to know them, but they will all be there this weekend at the NAPVI International Conference. We leave tomorrow, and can't wait to get away! We are getting away with the kids, it will be our first little trip with both of them. Can't wait!

As we were rushing to the car, I rolled the stroller under the sign, threw Landon in there and this is what I got. Not the greatest, but oh well. This is what happens when anxiety takes over anticipating traffic and me running late to my bowling league. lol!

Tuesday, July 14, 2009

Blind Children's Learning Center

Today, Gavin and I went to the Blind Children's Learning Center in Santa Ana. I went to meet with the Director, as well as an Occupational Therapist. Since 85% of what a baby learns is done visually, it is very important Gavin is stimulated properly and even more important I am aware of exactly what needs to be done at home. Vestibular stimulation is at the top of the list of importance. That part of the brain needs to be active, even though he is not getting it visually.

His teacher through the district has been wonderful. Each week Gavin is making progress. He is a stubborn little sucker! Not surprised, so was his brother. ;)

I am hoping along with the other services he is receiving (including from the Braille Institute), we will continue to keep him on track, and on the road to giving him all avenues of exploration.

The services through BCLC are not paid for by the state. I tell ya, learning the system, and figuring what services he should be qualified for, what is 'low incidence' and how they determine that, along with me keeping up to date with what I know I need to fight for, is a lot! Everything is kind of learned as we go. I have had a great support, with some wonderful new friends who have been and are where we are. They are helping to guide me through this. You seriously can get totally lost and confused. I still am!

If anyone has any kind of input with the 'system' and services blind/VI children can qualify for, please email me. I am keeping an ongoing record of my findings, so I can make sure to share with others along the way.

Ben Underwood, rest peacefully

I had no idea when I posted this blog post, Ben had already passed away. I don't recall hearing about his passing, and was so saddened to read about it just today. I heard about Ben's story before Gavin was even born. I was much more appreciative of him after learning of Gavin's vision impairment.

Ben displayed courage, goodness and inspiration.

Born a healthy baby, Ben lost his eyes to cancer at age 3. To quote his mom:

"Ben awake from the surgery and said "Mom I can't see anymore, I can't see anymore, Oh mom I can't see." Words of wisdom spoken to me from my pastors wife, sister Devon, "Don't let him feel your fears." After praying for strength and receiving from God, I said, "Ben YES YOU CAN SEE" and I took his little hands and put them on my face and said, "See me, you can see me with your hands," next, I put my hand to his nose and said, "Smell me, you can see me with your nose," then I said, "Hear me, you can see me with your ears, you can't use your eyes anymore, but you have your hands, your nose, and your ears." I tell this one thing, Ben has been seeing ever since."

Been had been cancer free, until cancer took his life this past January. The cancer returned to his sinus cavity, and chemo did not work.

Ben's life can be read here.

I cannot begin to imagine his mother's struggle. I applaud her strength in not letting Ben's condition hold him back, but rather she used it as a gift. He taught himself the skill of 'echolocation', what is used by bats and dolphins. Truly remarkable and worth a peek at the video.

Thank you Ben. You inspired me. Thank you to his mother, you have reminded me to be a fighter and are leading by example.

I often think of Ben, and will continue to honor him by keeping his fight alive, and have it serve as a reminder, "If Ben can do it, we all can do it."

Thursday, July 9, 2009

Christmas in July

This is a little off the topic of what I typically post about, but I felt it was important.

I started this when Landon was born, because I was so thankful for him, and I wanted to help other children. It's not big, but I know to that one child, it can make their day. For that reason, we do it every year, and it is now our tradition. I'm excited to share this with Gavin this year, even though he won't really understand what is going on, since he is so young. I want to set the precedence with my boys to be kind and thoughful of others, and to also show them how VERY lucky they are to have all they do, including love from their parents and family, a safe home, as well as toys to call their own to play with.

Every year we pick a handful of kids at Hillview Acres Children's Home and we buy them Christmas gifts. The one thing that I LOVE about this, is the children make a wish list, and you actually personally can buy them their favorite toy! It's awesome. Every year they post their wish list online (you can view last years here). I got to thinking, and for them to get the help they need, along with their necessities is great, along with the support from the home. But all these kids are just like the rest of the children, and want the "cool" toy or "in style" clothes, right? I know these are materialistic items, but they bring them joy and when I think of where these children come from, absolutely breaks my heart.

This is what we do, and this is why I'm sharing this in July.

We have a piggy bank. Landon puts coins in his bank everyday, this is loose change, etc. To date, we have over $50 and we still have a few months. I always have Landon pick a boy his age, and one he finds shares his same interests (usually superheroes). Most of the time it's also a toy he wants for Christmas, but this is all part of providing for others and teaching him to act unselfishly. He does it very generously, and honestly, the past 3 years, since he was 2 years old, he has never cried for the gift he is giving to someone else. He loves it!

I typically buy for the older kids as well, because I don't want them to feel left out, and the teenagers need to feel the love too. You will see, some of them ask for the simplest pleasures, soft, fuzzy slippers and PJ's.

You can start this tradition with your children if you are looking for something to help others through the holidays. I'm hoping we will have close to around $90 in loose change by the holidays, which is what we usually have. Troy and I also match that, and me and Landon have a blast shopping for these kids! You don't actually get to meet the children, but on Christmas morning, I am filled with happiness seeing my child open gifts, as well as knowing I'm helping a few others experience the same joy - they so greatly deserve.

Landon and I talk about our Christmas kids throughout the year, and he asks questions about the ones we have previously bought for, and we often wonder what has come about them. You don't realize the impact you are setting for your child, he STILL talks about Angel, a little boy from 2007 we bought for. STILL!

Throw your loose change in a jar, and do this whenever you see some laying around. I guarantee you will have more than enough to make Christmas morning a magical one for even ONE child with just ONE gift.

Wednesday, July 8, 2009

Tender moments

Shortly after we picked up Gavin's glasses and we were walking towards the car, Landon said something that I can't get out of my head. We were praising Gavin left and right at how handsome he looked, and how proud we were of him for keeping the glasses on, etc..

I think the excitement gave Landon the wrong impression.

He turned to me and said, "Mom, now Gavin can see!"

He had a smile from ear to ear, and anxiously waiting for my response, staring straight into my eyes.

Troy explained, and he understood.

I'm sure they will be at each others throats as they get older, but the kindness he has for his baby brother is truly touching. Everyday, many times a day, I see the small gestures to help him, or to keep me in check when I have let Gavin cry a minute too long. He's on top of making sure Gavin has all he needs and he is so unselfish of himself, even at the tender age of 5 if it means it will benefit his brother. I love wathcing him love Gavin and the gratification Gavin gets in his smiles when he knows his brother is near him.

Maybe Landon will one day be my little scientist that will find the cure for blindness and give his brother the ultimate gift. ;)

Tuesday, July 7, 2009

A day of Discovery

The day before 4th of July, we were so excited Troy was off work. He works so hard for us, and for me to stay home with the boys, we always get excited when there is a day he can enjoy a weekday with us. I wanted to go to Knott's Berry Farm, but we didn't want to be miserable in the heat so we decided on the Discovery museum. This is the day we picked up his new glasses, this was a defining day for him, his last day without glasses. It was fun, and instead of pushing Gavin around in the stroller, we carried him and had him feel everything. It was cute to see his little hands move over things and seeing his facial expressions as he takes in different textures.

I have a new respect for my sense of feel, it's something we tend to overlook, but many times I find myself feeling things and closing my eyes and seeing it differently.

Seeing it through the eyes of Gavin has brought me a new respect for God's world.

Sunday, July 5, 2009

Gavin's first Fourth of July

The Fourth of July is always a holiday I look forward to. Landon loves it, and it's a full day of fun, with the evening being the best. We always gather at my aunts for a potluck style kinda day. There's about 30 of us in and out throughout the day. The kids running around in their swimsuits, jumping in and out of the pool, the grownups playing volleyball and everyone eating. It's just a fun, relaxing day.

To be honest, I have been anxious the days leading up to this Fourth of July. I didn't really know where the anxiety was coming from, I just was feeling a little 'off' the past couple of days. It hit me, and it hit me like a ton of bricks.

We always go all out, spending a lot more money than we should on these fireworks that cost an arm and a leg. We always say we aren't going to spend as much next year, but we always do. We do, because the kids love it and we love seeing their faces and hearing the excitement when we announce each firework. We are a little dorky like that and I love that we have always done that. Everyone who walks into my aunts house, always gets a kick to our growing stash of fireworks, we love to see them all sprawled out in the living room, and the kids like to go through and count how many we have. It's a very exciting process for them, and its a full day of anticipation as we all wait for dusk.

When it was time to move the party to the front yard for the big finale to our Fourth of July, I started to feel the sadness set in. My heart grew heavy, and an overwhelming just sadness hit me as I held Gavin and made our way out to our chair. My mother in law held him for a little bit, and I sat still next to her as we watched. I wiped tears as each beautiful color flashed before me, and sparks lit up the night. I watched my oldest so joyful and his eyes lit up with every new firework that his daddy lit. All the little kids lined the sidewalk for an upclose look of the pretty fireworks in front of them on dislpay. Me and Gavin stayed in the back, him wrapped in a blanket and me wiping the tears that I could not control. I didn't allow anyone to see me cry, as I did not want anyone to feel awkward or feel bad for me.

It's these time that people talk about, when just ...hits

These moments will be with me for the rest of my life. It is part of our lives now, and it hits me uncontrollably at times when I just got to let the waterworks go. I could be at the store, driving, or on this day, a holiday. I have learned to better manage, but I don't ever think that deep, sadness will ever be gone. I don't expect it to be.

Gavin ultimately fell asleep in my mother in laws arms. Up until then, he enjoyed the fireworks by listening to them, and I walked him up at one point towards the end and had him get a whiff of the smell I love so much. I tried my best to describe in detail what each color was, and the brightness of it. He stayed in my arms so intently listening. He didn't cry, he didn't get scared, he just listened. I explained the colors and what his daddy was doing, and when he lit it, and when he would expect to hear the loud crack of the fireworks. There were illegal ones going off all around us, and I continued to tell him what was going on behind us, to the side and in front. He listened to it all, and at points laughed.

I hope I did it justice.

Update info on glasses

I've had a few people email me about Gavin's glasses, so thought I would post about it, since it may be a little confusing.

Gavin's glasses are not prescription, the lenses are clear. I have been pushing to get him glasses for a few months now. We tried various sunglasses that did not work, he was not happy with them. Since he needs sunglasses because he is very photo-phobic (light sensitive) AND he presses on his eyes constantly, we decided on the transition lenses. He has one pair of glasses that serve double duty. So far so good.

Gavin doesn't have much sight, if anything at all. We talked to his doctor, and both agreed to go ahead with clear lenses since we still don't have a diagnosis or the ERG done. I didn't want to wait until that was done for us to get the glasses, because too much time has gone by - waiting. So, we made the decision to get the clear lenses and if by chance they determine some prescription lenses would help what remaining sight he does have left, then at that time we will switch them out. He needed these for the sun since summer is here, as well as I hoping it would temporarily be a diversion of the eye-pressing.

When we first put them on, he didn't like the sensation of the curly q's around the ear, that's the rubber band that wraps around his ear to keep them up. He fought that for a total of two minutes. He was cranky at the time, and tired, we were on our way back from a museum and he just wanted to be home in his confort zone. I almost gave up, but we sat him back in his car seat and the fussiness was gone. He was a happy camper feeling around the glasses and putting his hands down.

These have truly been a blessing!

Gavin's eye pressing has completely stopped. For those new readers, he constantly presses on his eyes with his fist, which causes blackness around the eyes as well as sunken or deep set eyes. This is a common behavior of babies who are blind with retina diseases. It is a full time job to keep his hands down.

I think as he gets older and he begins to develop his fine motor skills better, he will start getting his fingers and sliding them under the glasses and continue with the eye pressing. As of now, which is what is important, he does not have the abilty to press on them and actually is not even really trying. He has ripped them off a total of 5 times, which I don't think is pretty bad! He is holding his head up more, his head isn't down with his fist in his eyes, and he just looks and acts so much older! Not that I want that, but I feel he is more aware of his surroundings since his focus is not having his fists in his eyes. He is just getting so big, and looks even older with them (which makes me sad the baby stage is on it's way out, and the toddler stage is around the corner). How can that happen so fast!

He has the Flexcor Titatium transition lenses, and we purchased them at "A Child's View" in Brea, Ca. Those of you in the area and need some eyewear for your little one, I highly recommend them. They are extremely helpful and most importantly patient and comforting. They add to our growing list of support for Gavin.

His eyes are not looking as deep set, and are actually coming back to normal position. It's so amazing what a difference of just two days of no eye pressing can do. And I thought we did a good job of keeping his hands down.

I'm so proud of him, he is doing so good. He is so inspiring and he doesn't even know it.

Wednesday, July 1, 2009

Banding together in the form of wristbands

"We don't accomplish anything in this world alone ...
and whatever happens
is the result of the whole tapestry of one's life
and all the weavings of individual threads
from one to another
that creates something."

-Sandra Day O'Connor

As you know, 'Gavin's Groupies' was our team name for VisionWalk this year. I have been inspired to expand Gavin's Groupies name and have it be our signature name to help raise awareness of vision loss and provide funding to find a cure. That being said, my sister in law had a wonderful idea to get some "Gavin's Groupies" rubber wristbands in the bright orange color. These were such a hit at the VisionWalk, that I have put a PayPal option right her on my blog (just to your right ----->) so you can purchase them as well if you missed out. It's such a nice feeling to be around people who are wearing these wristbands.

We are doing it with the hope that when you look down at the bright orange color, you are reminded of all those who are affected with vision loss, and not fortunate enough to see the amazing colors the world has to offer.

Purchase your wristband and wear it proudly and help Gavin and his family's pursuit to help find a cure. A portion will go toward his fund and the other portion will go towards the Foundation Fighting Blindness. They are only $3 each.

Pincer grasp practice

In addition to his teachers working with him at home, we also do a lot of working with him in form of play and exploration. We are currently working on the pincer grasp. He still uses a more immature palmer grasp, so we started with the little rice puffs. I first cut those up into small pieces, but I think they were too small. So we spread some whole ones out and allowed him to explore. I noticed since they are so light and airy, they are quiet. We had to keep tapping the table to show him they were there. Once he found them, it was so cute to see his little hands try to work. He did good. He still tried to use the palmer grasp to feel, but once he found them.....BINGO! He used the pincer grasp to put them in his mouth (or attempted to). One or two made it to his mouth, with the help of big brother. He looked like such a big boy. If you hold him, his head is usually down in his hands, but when he sits in his big boy chair, he sits tall and upright and it's easier for us to keep his hands busy.

He still doesn't want to completely sit up unassisted. Visually impaired babies like the full contact of the entire body against something. Sitting up for them is typically delayed. We work with him on this daily, and he's getting better and sitting up for longer periods of time. He has a terrible habit of just throwing himself, and I mean THROWING himself back when he is done. Hoping the throwing begins to cease and he starts to enjoy the feeling of no contact on the upper body.
I never imagined how weird it would feel to sit up and not feel contact. I can imagine it would feel uneasy and scary and vulnerable. Think about it for a second. I never really understood until I really thought about it, and it makes complete sense.

Here are some pics from his first experience with baby finger food puffs...

Ok, mom. I'm ready. Bring it!

He felt around after Landon tapped the table for a few seconds.

I had to get a picture with both of them, even though Gavin is over Landon breathing down his neck! Landon is the best big brother and is very patient with him and wants to be actively involved. It's a beautiful thing, and I can't wait to see their bond mature.

Now what?
Oh yeah, into the mouth.

Ummm... what flavor are these mom.

Because I've tasted better on my pacifier after it fell on the floor and you obeyed the 5 second rule.

Ummm... no. Digging the sweet potato flavor? Not so much mom. Let's try Apple next.