Ding Ding Ding.....round 2

So most of you know that Coco had her UAE (for my non eyemom friends, that stands for Under Anesthesia Exam) last Friday. It did not go as well as I had hoped. Coco's lens that was removed is starting to regenerate with yet, another cataract. So we were told that she will undergo a second surgery this Friday, April 4th to remove the second cataract. This will be with a retina surgeon as opposed to our regular surgeon. I was told that it is VERY rare for it to grow back a third time, so lets hope this is the last one of these! Coco is a fighter and the toughest princess I've ever seen. Every time I see this quote I think of my sweet daughter....

Though she be but little.....she is fierce!


 Please think about her and lift her up in prayer Friday AM. I know God has my baby at all times and this will all be used to glorify Him in ALL things!

The contact....well we went through 3 contacts, only to find out that none of them were correct. Her vision has not changed any since we started this journey. We had to go back to the original contact last week. Silver lining, it does appear that she focuses and sees pretty well when it is in her eye. So we will evaluate the contact process in the next few weeks and decide if we just need to go to glasses.....EEEKKK! So this is where I need my eyemom's! Where do I find the best glasses for her? Any tips on getting good ones at affordable costs? All help and suggestions needed for this one!

We got to spend spring break week with our boys in disney this past week! It was so much fun to be with them and laugh and have fun. They are such bright spots in dark days! We worked every park there was from sun up to close. Coco had a great time visiting with Nana and Papa while we were gone! I am so thankful for a network of family and friends that help in all situations. I will post a longer post after surgery on Friday. Thanks in advance for all of your prayers and help with the glasses!

Miracles in our Marathon

So I have been told by Dr.'s, support staff, other "eye mom's", etc....that this journey we are on is more like a marathon than a sprint. Since the sounding of the gun, or the start of our race, we have experienced heartache, happiness, laughter, tears, confusion, but now....miracles! Before I go any further I must thank a few people that made these miracles possible in Cohen's life! Katy O'Berry, Melanie Weldon, Brownie Giles, and most importantly.....my mom, Cathy O'Berry that set this all in motion!

I am learning that joy and happiness are two different things. Happiness is external and joy is internal. Happiness is DETERMINED by our external circumstances. JOY is being content with our circumstances and finding the good in all things. I was finding it very hard to be "happy" with anything that was going on with my daughter. I was second guessing every choice I made for her care. I was in a valley where I was thinking every thing I did was not correct for her at the time. I was dissecting every move she made, and the ones she didn't, and thinking the worst. I just had that "pit" feeling in my stomach that things weren't connecting right.  My mom knew Katie, who knew Melanie (follow along :) who is the vision worker for children who attend school in our school district with low vision problems. We called her to see if there was any way she could give me some advice on things to do with Coco and help her some. She is the first miracle! She got me hooked up with Brownie Giles who is an early intervention vision worker for Alabama Institute of Deaf and Blind. So, I was finding happiness in this situation. It was amazing how this was all playing out. I spoke with Brownie and she CAME TO MY HOME, within 24 hours,  and accessed Coco, as well as gave me very good questions to ask at my eye dr appointment the next day! So this is how the week played out for me starting from last Wednesday....

• Last Wednesday- Brownie Giles shows up IN MY HOME to accesses Coco's vision within 24 hrs of speaking with me
• Thursday- I had the follow up eye appt for Cohen that I was REALLY looking forward to in order to ask a lot of questions I had....It didn't go that way, which leads me to the rest of my schedule.
• Friday- Thing 2 (Keith) and Thing 3 (snacks) had baseball games.
• Sat- Keith and Snacks had 2 more baseball games. CP3 had 2 baseball games that night.
• Sunday- Church and CP3 had another baseball game
• Monday- back to the eye dr with Cohen at 9 am
• Tuesday- Pediatrician appt with Cohen
• Wednesday- Physical Therapy with Cohen
• Thursday- BACK TO THE EYE DR WITH COHEN
• oh, and did i mention, I'm finishing up a dietetics degree in my spare time

So, needless to say, the schedule has been a smidge crowded. I didn't mind the crowdedness of it all, because like I said, I was "happy" with the external circumstances. That happiness quickly turned to sadness after my eye appt on Thursday. I had my long list of questions that all of my eye moms had helped me with, my social worker that had rushed TO MY HOME, and my own observations. I was ready, prepared, and had a very positive outlook on the visit. After waiting 2.5 hrs, dealing with a very fussy baby, a Dr. who had a very busy schedule and was behind, a contact that had deposits on it, a contact that got stuck in her eye, the visit was A BUST! I got NO questions answered and was in fact more confused than I was when I went for the visit. I was told the contact had deposits I would need to order a new one and come back IN TWO WEEKS to pick it up! Well, that did not fly with me or the hubs so we got a new one overnighted for Monday pick up. I went for the new contact on Monday, only to find that Coco's prescription had changed and we would need to order a THIRD contact for pick up on Thursday?!!!!! The confusion of the day was just too much. I had retreated from my "happy place" back to my sadness and confusion. Then miracle number two came to be.....

I received a call from Brownie saying that Coco qualifies for physical therapy, TO BE DONE IN OUR HOME AS MANY TIMES AS I THINK SHE NEEDS IT!!!!! At that point, I stopped, paused, and remembered what "JOY" really is, and thanked Jesus for these circumstances that we are in. My heart was full of so much joy and excitement. Pure joy. That even in the midst of all this chaos and confusion and busy schedules, that HE was providing so much for sweet Coco! I am learning that JOY, pure joy, comes from being content in ALL of my circumstances! Our God is good, and he is providing miracles for Cohen and her eye! I am a work in progress, just like Coco, but God is again, teaching us all that no matter our lot in life, He is enough for us! He WILL provide a way to accomplish his works in us all, even sweet baby Coco! 

So for all of my eye mom's out there, here is what I've learned this week! In my state, Alabama Institute for Deaf and Blind (AIDB) has an early intervention program to work with birth - 3 yrs old. They will come TO YOUR HOME and give your child vision therapy, as many times as the child needs. Here is the second part of the miracle, THIS IS A FREE SERVICE! All I had to do was call their office, a worker was assigned to me, and she came and made an assessment of Cohen's vision and then a plan was formed for her. This organization also provided us with the physical therapist for Cohen, IN OUR HOME AND FREE OF CHARGE! 

Most importantly, I've learned that joy comes from ALL of my circumstances in life and there is a blessing to be received in ALL situations! All I have to do, is open my heart, my attitude, and my eyes to the JOY placed in front of me and receive the blessing intended for me! So here's to being blind to happiness and living in the light of JOY! 

Playing Jeopardy

Okay, my new imom friends.... I need a little advice.

We have our second eye appointment (post surgery) next week. At the contact check up appointment I felt very unprepared. I have so many questions in my head, but when I was the in room with the doctor, I had no idea what to ask. So here's where we are at this point:

• We had the cataract extraction at 6 wks old
• Coco has been wearing her contact (12 hrs per day) and patching (6 hrs per day) since she was 8 weeks old.

Some days here lately it seems she is clawing at her eye with the contact. Almost like it is a persistent itch that she can't scratch. She also is getting a little drainage (our boys call them 'eye boogers'....i know life with boys, right?) in her eye while the contact is in. Did any of you experience any of that while using contacts? Lastly, what should I be doing with her to encourage her to use her eye more efficiently? I've read some of your blogs that mention OT and VI workers that helped your babies out. Should I begin these types of therapy with her?

I guess I am just starting to feel a little lost in this new eye world that will be our home for the next forever! Hubs thoroughly enjoys watching jeopardy (he's a rock star at that game), I on the other hand, can ONLY answer the pop culture questions. There are not too many pop culture questions on that show, so I'M VERY BAD AT THE GAME! This new world feels like a constant episode of Jeopardy. I am just so unsure of the questions to ask at this point. Any help imom's would be super fabulous! I hope you and your families are all doing well.

New to the world

Hi! Blogger world! I have so many friends who post on blogs, I thought I would give it a try. My name is Leah (see photo to the right). I am a 33 yr old mom of 4 children (3 are biologically mine, 1 was acquired through marriage, so I call him son in love as opposed to 'step-son'). I have previous degrees, 12 yrs of being a private pre-school director, and am presently going back to school finishing up a dietetics degree. I'm partially insane, I know. My husband (I call him hubs) is a surgeon at a local hospital here. We live life on the go and by the seat of our pants most days. Our oldest son Conner (aka CP3) is 10, middle son Keith (9), youngest son Camden (aka...snacks) (7), and our sweet daughter Cohen Grace (aka...Coco) (3 months).

Conner (CP3)

Keith

    

Camden (snacks)

Cohen Grace (Coco)

Me and Hubs

So now you've met everyone, except for our crazy dog, Weagle. My daughter Cohen is my true drive for writing this blog. She was born on Nov. 1 and we were told she was perfectly healthy.  She weighed 6 pounds and was an angel from the second she entered the world. At her two week check up the pediatrician checked her eyes and said "I don't see any red light reflex in her left eye." Now, I am a mom of 4 children so I was not immediately worried, until I saw her face. I will never forget feeling time stand still when she said the next words to me. "It is completely obstructed, so it could be a cataract, or a tumor, retnoidblastoma." I'm pretty sure I did not hear anything else she said. All I could think, was how can this be happening? We were blessed with this baby we were not expecting, IT WAS A GIRL, after 3 boys, and she was so happy and amazingly good! We went immediately to the eye foundation for a consult and to verify what giant we were about to face. I remember sitting there crying and crying and crying. I could not pull myself together. After 3 hours, I was reminded of 2 Cor. 5:7, "we walk by faith, not by sight." I had no idea what news I was about to hear, but no matter the outcome, I would walk by faith and not by sight with my daughter. 

We were taken into an exam room and Cohen's eye was completely violated. The only words I remember hearing in that moment were, "It is NOT a tumor." The rest, seemed like a cake walk from there. Now, seemed is the opportune word there! The procedure for her cataract was already laid out before us, with little options or variation on our part. We had a window of opportunity of 2 weeks (bt 6 and 8 weeks old) to remove her cataract covered lens and begin putting in a contact as well as patch therapy. This was all fine and good, until the day came. I'll be honest, I'm really tough. I can withstand a good deal of emotion, pain, heartache, blood, guts, etc....I'm a mom of 3 boys. This was unbearable! We showed up at 5 am on the day of her surgery. When they removed my 6 week old angel of a daughter from my arms, I wanted to melt into the floor. She was going into surgery, having a tube down her throat, put under anesthesia, having her eye cut open. It was more than I could stand that day. They brought my daughter back from surgery and she looked like this......

All I could do was hold her and cry and rub her face. I could do nothing to ease her pain and was having to work around the tubes that were attached to her. I knew in that moment looking at my daughter who had been through so much at such a young age, there is so much beauty in our brokenness. She had NEVER looked more beautiful to me than she did in that moment! In the days to follow I was putting 15-20 drops in her eye each day, worrying myself sick if I got enough drops, but not too much in her eye, and the tape.....UGH, the tape! Everyone kept asking me what the next steps were, what was going to happen, was she going to be able to use her eye, normal questions. To me, it was all just noise! I had no answers. Her doctors have no answers. All I was told, was "we have to have faith that this will work." I am a very strong believer of prayer. I am a Christian that believes with all my heart that all things work out for the good of those who love the Lord. But I was struggling with this. I had no answers and my daughter looked like this, blind and could not see. I kept getting so angry when I was told we were going to have to "try" having a contact made for her eye. I was having to put a contact in and out of a newborn eye MULTIPLE TIMES PER DAY! I was frustrated, mad, upset, sad for my daughter, and worried about her future. 

It took one night at our fabulous church (church of the highlands, check out the website and live feeds ;) from our amazing Godly pastor to say this small phrase "Grace transforms us." At that  moment, there was no one else in the room but me and the holy spirit. God was speaking, and I could hear it....like a megaphone! Cohen Grace was going to transform my life. It wasn't her that was broken. It was me. She wasn't the one that needed changing. It was me. He was transforming me, and all of us in our home, through this small tiny miracle, Cohen Grace. In order to be her mother and teach her to see (physically and spiritually) I needed to have a 'blind faith' that God was going to use this to His Glory and for His purpose. 

I left church that night and have seen my daughter and this situation in a brand new light. This isn't a hindrance, or a burden. This is a blessing, and it will be the story that makes this sweet girl the woman she grows up to be.  So far we have been using a contact, patching 6 + hrs a day, and learning to laugh and roll with what life gives us. Everyone always asks me, "If I think she can see now?" I don't know if she can. Dr.'s don't know if she can. What I know is "strength doesn't come from what you CAN do. It comes from overcoming what you COULD NOT do." I learn from my children everyday. I learn new lingo, new cool ways to dress, new cool tricks and songs. From Coco, and her 3 months, I have learned that saying you have faith is easy when you have the answers to the questions. But real faith, blind faith, is having peace when you don't have any answers! 

Any moms out there that have experience with this, please give me advice and what worked and did not work for you. This is where we are now, rocking cool cute patches, and trying to establish a network to help teach her to use her 'new eye.'