Too much...

It still surprises me that telling someone new about My Little Reader's upcoming surgery completely knocks the breath out of me. 9 days and counting. Praying, hoping, pleading for the best possible outcome. We are so very, incredibly blessed to have so many faithful people sending constant prayers to heaven on our behalf. 

We are going to make some noise and this is where it is going to start

With everything that has been going on Ben and I have talked about getting involved, about making sure that more people know the signs of Congenital or Pediatric Glaucoma. That there are less parents like us that are told for years not to worry about a high IOP until it is almost too late. Thank goodness that we are still in the "almost" stage. I hope that we never go beyond that. This week is World Glaucoma Week. The feed on my facebook led me to The National Alliance for Eye and Vision Research where I was given the opportunity to share our story in the hopes that those personal stories will make their way to D.C. Below is what I shared. I also emailed my representatives. It was a form letter. But it is a start. It is the beginning of a whole lot of noise that I plan to make about Congenital Glaucoma for the rest of my life.

I feel almost unworthy of sharing our story as so much of it is yet unwritten. However, I REALLY want our lawmakers to understand the difference they can make in supporting and funding research in this field. My daughter recently turned 10. From the time she was very young I always noticed that her left eye was larger than her right. I mentioned it time and again to our pediatrician, a man who I have a tremendous amount of respect for and trust in. Each time my concern was dismissed. After all, arms are different lengths, our bodies are not exactly symmetrical and so on. Besides, she showed no signs of vision loss. 

When she was in Kindergarten she started to complain that she couldn't see the board, so we took her in for her first eye exam. At the age of 6 she was given a corrective pair of lenses for both eyes. My husband recalls that the optometrist said her IOP was high, but that was normal with kids who are fidgety and blink a lot. We thought nothing of it. About 18 months later she lost her glasses. She was staying with my mom (her grandma) at the time who noticed that her left eye was acting lazy. She tried patching her right eye to help force the left eye to focus and that is when it became clear that something was wrong. She could not see and was feeling her way around the house. When my husband and I returned to town we took her to the optometrist the next day. The office we went to said they had a new way to look at a person's eye and that it would only cost $15 extra. On a whim we said yes and then everything changed. Based on the picture the optometrist was very concerned and felt that she had Optic Nerve Atrophy in her left eye and we were directed to see a specialist ASAP. 

We made the appt. which led to 2 MRIs and a final diagnosis of Optic Nerve Atrophy due to possible birth defect. In the write up the specialist specifically ruled out glaucoma stating the damage was too severe. No tests were performed on her right eye at that time. 

A year later she had another regular eye exam. Again, the pressure in her right eye was high, but we were told not to worry, that accurate readings were hard to get on children. Then this past Feb. it was time for her next regular check up. In she went, but this time the doctor said it wasn't normal and that we needed to worry. 

In the past six weeks since her regular check up we have had 4 visits with the glaucoma specialist. She has been diagnosed with Congenital Glaucoma in both eyes. The damage that has been done in her left eye is irreparable and there is already some field of vision loss in her right eye. Her IOP at her first appt. was 40. After 15 days of twice a day drops we have gotten it down to 23, it remains at 40 in her left eye. She will have her first surgery this summer. She will be on drops for the rest of her life and she may have other surgeries in her future. 

Again, she is 10. We were also told that her diagnosis is years and years too late. That if any one of the previous doctors we had seen had a better understanding and greater knowledge of Congenital Glaucoma that we could have saved more of her vision. We have been told that because she is already blind in her left eye, with the extent of the damage in her right eye, she could go blind. I know that there are cures and treatments that are out there, either in their earliest stages of development or already on their way toward clinical trials. I know that the science and technology that are available to us today can work modern day miracles if only we give them the funding and support they deserve. Preserving, repairing, and one day curing vision loss due to glaucoma will change lives. You can change my daughter's life. It is my greatest hope that our lawmakers will see the need for this type of research and that a cure will be in our near future. 

Living by hope

We live by hope.

We do not always get all we want when we want it.

But we have to believe that someday, somehow, someway, 

It WILL be better!

And that we can make it so.

Hubert H. Humphrey

Numbers were down this week. And for now that means surgery can wait. Hoping they stay that way. 

Feb. 27 - 40

Mar. 8 - 30

Mar. 15 - 23

Hoping beyond hope that the numbers keep trending down. Hoping beyond hope that science is working as hard as I am praying. Immensely grateful to a man that I have yet to meet who started this whole journey during a routine eye exam. I am profoundly grateful to him and the difference he has made in My Little Reader's future. "Met" another angel this week. A mom, who knows first hand the exact road this journey takes. I have no doubt that someday our little girls will play together. It makes me happy to know that they will always have someone who knows exactly what it feels like. :)

The thief

There's a burglar on the prowl

And he's right around the cornea;

He's called the "thief of sight,"

The ubiquitous glaucoma.

He's silent, he's invisible. 

He's neither heard nor seen.

He'll smash your precious window

If you disregard the screen.

He's a slippery, dangerous felon.

And he needs to be arrested

But it's up to you to do it

Stop Glaucoma, GET TESTED

(From the World Glaucoma Association that I know belong to.)

So we were told today that surgery is for sure and that it will happen this month and it may or may not make a difference. I felt it perfectly fitting that as this judgement was being pronounced the Heavens opened up with thunder, lightning, and a downpour of rain. For just a moment the Heavens were crying right along side of my heart while my face stayed perfectly still so as not to scare or worry my sweet little girl who has a big road ahead of her. My fear is immeasurable. My worry monumental. My tears constant. My prayers never-ending. Constantly pleading that we aren't too late, that the thief didn't get everything, that a year from now this worry will be gone but her eyesight will remain. 

A prayer in my heart

So, tomorrow we see another specialist for My Little Reader. This time we are seeing a different pediatric ophthalmologist. After all we went through last time, I vowed I wouldn't go back to the other one ever, ever again. A few weeks ago My Little Reader went in for a regular eye appointment. The optometrist we saw last time doesn't work at that office anymore. I wish he had been there since he had a better understanding of the condition of her left eye. But either way the optometrist she saw felt there was concern that she has developed glaucoma in her good eye. And thanks to the wonder of the internet and a quick, easy and painful search I learned that glaucoma can lead to optic nerve atrophy just like in her bad eye. Which means she could end up with 2 bad eyes. Which leads to things that I don't even want to put on paper, having them in my heart and mind is hard enough. So, once again I have a prayer in my heart and on my lips. A mantra over and over, pleading constantly that this will be ok, that she will be ok, that medicine for once can help and make a difference and preserve the eyesight she has. I pray for the doctor that he is one of the awesome ones because heaven knows we have had both awful and amazing doctors and it makes all the difference. I pray that he will have a good bedside manner and that he will know the fears of a mother and will calm them regardless of what the outcome will be.  I pray for my little girl. I pray constantly that she will be able to see whatever she wants for the rest of her life. I pray that we have already gotten through the worst of this. I pray for the doctors that are making advances every day. I pray that they will be inspired and that they will create miracles that will touch her life. But mostly I just pray for peace. I pray for the same peace I felt with the 2nd MRI and that when I wake in the morning I won't have any of the fear, terror, or nausea that plagued the first MRI. But at the end of the day all fear, nausea, hope, tears, pleading aside, I know that Heavenly Father has a plan, that his plan is perfect and just as it should be even if I can't see it yet. 

Raising the white flag

Oh.my.goodness. How can a "short week" be so loooong? There is something tremendously uncool about coming back after a 2 week break to a completely different daily schedule and a cancelled short release day. Let's just say that my little kinders are not adjusting well to starting their day with specials and having their recess bumped to the afternoon. I feel like we are back to square one. They have seen more blue and yellow lights this week than we have seen in months. I feel like I am herding cats. It feels much more like August than January. Seriously. Tuesday I was asleep by 8. The good news is that I am not above bribery and am slowly (ever so slowly) taking back control over my crazy monkeys. I should have the right on track just in time for them to have a three day weekend. 

In other news, today also marked the end of the honeymoon with My Little Reader. As you may know---she is not a morning person. Winter Break was a dream come true when she could sleep as long as she wanted and wake up only when she was really ready. She is so much more pleasant when is able to wake of her own accord after at least 10 11 12 hours of sleep. However, that just doesn't fit into our school routine. Tuesday and Wednesday were great. She was kind, sweet, and helpful. Today. Not.so.much. I think I may have seen her head spin around a time or two. After 10 minutes of cajoling, reasoning, and threatening I gave up and sentenced her to "2 pages" in her room. Thank goodness this girl loves books. She was much more pleasant when she emerged 5 minutes later. My hope is that by the time she hits her teenage years she will have either 1.) outgrown her moody streak or 2.) I will have mastered the techniques to reduce the spinning head mornings and increase the happy, bouncy kid mornings. I love the happy, bouncy kid. Wish me luck!

My Little Reader---Angels Among Us

So....most the people I know that actually read this are already very familiar with the scare that My Little Reader gave us about a week and a half ago so I don't really want to rehash it. I feel like I have told her story 3 dozen times. (But if you don't know---message me and I will be happy to tell you!) The point is, this entry is not about the scary parts. It is about the moments of calm and comfort in between.

With that in mind, when I look back on this experience I want to be sure that I not only remember the hard parts, but also the "angels among us" that have helped to ease the worry of this mommy's heart. 

For me the first blessing is that this happened at my mom's house and not mine. While that might sound crazy, the truth of the matter is that my parents are far more calm, cool, and collected than I am and they also live minutes away from TMC, while we live almost an hour away (depending on traffic and ability to find shoes when under pressure). It meant not worrying about what to do with the other two. It meant quicker care for my kiddo. And as an added blessing it meant we had time in the car to kill. Time to think. To plan. To call someone we trust. And what a great blessing that was. 

On the ride in we called Ben's Uncle Keith-a doctor at the Mayo clinic in Scottsdale. And how incredibly blessed were we that he was actually in Tucson at the time and able to leave his conference to come be with us at the hospital to not only give a blessing, but to decode the hospital mumbo jumbo and assure us that things really were fine. What are the chances? I believe in my heart that it was planned perfectly to be just as it was.

Most of you also know that I have had a really hard time coming to terms with My Little Reader's classroom placement this year. I truly believe that we are put in situations for reasons that we may not understand at the time, but eventually it usually all makes sense (why else would I have e.v.e.r worked in the automotive department??) With that being said, it was really r.e.a.l.l.y. hard for me to take her to school the Monday after the incident. To make matters harder, I knew that she had a sub that week. But I feel like this, too was a tremendous gift to us. Her sub was someone that I know and I was able to call him first thing Monday morning and explain our situation. He took such good care of my girl. He told me that he probably drove her nuts constantly making sure that she was okay, but that was just what I needed. It was much more than I got today from her teacher. 

Today we had another bit of a scare. Nothing like before. And I guess not really a scare other than we don't know right now what to worry about and what to brush off as regular aches and pains. But this scare meant that I hightailed it from my school to hers to pick her up from the office. Let's just say that the office staff was not impressed. Parents are under no circumstances allowed to rush in at the end of the day to make transportation changes (never mind that my girlie's transportation are her own 2 legs). Anyway, another angel stepped in. A friend that I made last year while dealing with a really difficult student. A fellow mom who has a sick kiddo that she worries about all the time. And she came to my rescue and had My Little Reader brought back to the office. And while I waited I met even more angels. The school nurse (who called me at the first sign of any concern just like I had asked her to!) classroom aides and playground monitors who came by to tell me how much they love my little girl. Someone we know from Church that is familiar with the incident that assured me she checks on My Little Reader every time she sees her and promises to let us know if anything happens. These angels mean so much to me when I can't be right there with her at school anymore. 

"Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love

They wear so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need"

Thank you to my angels! 

My Little Reader...

was grumpy. Oh, so grumpy after school yesterday. From the moment she set foot into my classroom she was cranky. Even our breathing was too loud for her. She had been up way too late the night before. Activity Days are fun, but it is hard to fall asleep after. So, when bedtime is normally 7:30 and you don't even get home until 8:00 and you haven't even finished showing your daddy everything you made until 8:30, then you can't even start the whole "I need a drink...my head hurts...I need to go potty..." routine until at least 8:45. Meaning of course that you don't even start trying to fall asleep until 9. Well, anyone that knows my girl knows that she needs a good night of sleep. So after dealing with her grumpy butt from 2:30 until we got home at 4:45, I was done. Ready to exile her to her room for the evening. But, of course, that would only make things worse. Until I realized that I had the perfect medicine for her. Granted, it was supposed to be a Christmas or Birthday present...but when I gave her the stack of Ramona books her eyes lit up. I got a big hug and didn't see her again until supper time at which point she was cured of all grouchiness.  I wonder if this medicine will continue to work into her teenage years??

Flashback

Once upon a time, long--long ago one of my very best friends was also my next door neighbor. One of our favorite activities was "window shopping". We would get the big Sears Dream catalog and would buy everything we could imagine for our future families. The goal, of course, was to spend as much as possible. We would make lists with all the prices and pages where to find our dream items. Today in my classroom after school I overheard two adorable 8 year old girls pouring over the latest American Girl catalog, picking and choosing all the things they would buy if only they had enough money and suddenly I was taken back. The grand total was $72. It wasn't all that long ago that I ran into my long ago friend and we talked and laughed about those days. I wonder if years from now, My Little Reader will also have happy memories of her days of window shopping. As a grown-up, I have to say that window shopping is often times so much more fun than actual shopping!

One heartbroken kiddo

My Little Reader has wanted to be in student council since kindergarten. It is her dream. It didn't happen in 2nd grade and she was disappointed. She has been talking about her "next big chance" since 3rd grade started. Speeches were due this week. She was very organized, making a table of all the points she wanted to cover and why she was the best choice. She wrote her speech and read it to our new assistant principal (who by the way was supposed to be her 4th grade teacher until he decided to take a promotion and come to our school). He said it was great. I thought it was great. The kids in her class--apparently did not think it was great. They even forgot to clap. Today her fantastic ( read that one as sarcastically as you would like---me, I am using extra emphasis) teacher announced the winners by erasing the names of the "losers" beginning by erasing My Little Reader's name first. Here's hoping that next year she finally gets picked, or at least has a teacher who thinks things through before she breaks the heart of an 8 year old. Bummer. We are going to wallow in ice cream because, after all, sooner or later we all learn that ice cream is a great band-aid for a broken heart.

Activity Days

Where have you been for the last 6 years?? Tonight My Little Reader was downright giggly. Chipper, happy, glowing. She skipped into the house and proclaimed that "Activity day is brilliant!" She proceeded to talk non-stop for 30 minutes until we forced her to bed nearly an hour and a half past her actual bedtime. There have been many, many days in the past 5 years and 364 days that I have reflected on how we "ruined" her life by having her younger sister and then her younger brother. and thereby robbing her of the perfect life as a single child. This girl thrives on attention and she doesn't much like sharing it with the siblings. But tonight was all about her and it was beautiful and perfect. I have a feeling that despite the exhausting amount of time I now spend in the car on Wednesday nights (ballet, errands, preschool, ballet, church, home, church) the 2nd and 4th Wednesday of every month are about to become my favorite days of the month!

And the angels sang

As I am sure you know, we have faced years of food battles with the oldest. To her credit she has come a loooooong way in the last four years. However, there are still struggles. She gets picky at things that I know that she has eaten and liked. For example, apples. She likes apples, eats apples, asks for them at McDonald's instead of french fries. So when it comes time to pack school lunches I feel that it is my duty as a mother that her lunch include some kind of fruit or vegetable. We tried carrots, again something she likes, eats, and asks for. If she buys hot lunch, she always gets carrots from the salad bar. But when they are packed in her lunch she ignores them. What gives?

Then came the great apple experiment. She likes apples, but prefers to have them cut. So daddy tried cutting them and of course they turned brown and came home untouched. So then he experimented. I think with lemon juice. Same result. Untouched brown apples. Yuck. Then I gave in and bought the pre-sliced apples that cost one arm and half a leg. Seriously. $3.49 for what maybe amounts to 3 apples. What ?!? But, again, my mom badge was on the line-get fruit into the kid or lose the badge. Guess what. Still the apples went untouched. ARGH! I started racking my brain. What am I going to feed this kid? To her credit she will eat banana chips-though I have a feeling they have more sugar than banana.

Saturday I was in the fruit cup aisle getting pears for the littlest and oranges for the middle-est. I am super happy that now they come in 100% fruit juice (that's 2 points for my mom badge). So, while in the aisle I see pineapple also in 100% juice. Could she? Would she? Sure why not, if nothing else we can use it for Hawaiian Chicken. I brought it home and launched in with my best infomercial about how great pineapple is and how much she loved it at Disneyland and how she eats it on said, Hawaiian Chicken. I got a maybe. She agreed to try it, but wanted to try it at home before she had it in her lunch. So, tonight while eating dinner she asked if she could try it. What? She asked without cajoling, bribing, or begging? And would you believe it....

she ate the whole thing!

I heard angels singing when she said, can I please have this in my lunch every day? Yes, yes, you can!

A Recital

The girls have been in ballet for a full year now and recently had their second recital. Because the company has grown so much they were in need of a larger hall for the recital which meant the girls had the chance to dance on a real stage! It also meant that they needed stage makeup. Here are some celebratory pictures taken after the show!

Christmas Cards-Done!

After a very hectic week, I am happy to report that I have been one lazy bum today. I did manage to run a load of dishes and a load of laundry. But each time I walk past the kids messy rooms, I just keep going. I also turned a blind eye to the state of the laundry room and have avoided the linen closet at all cost. Today is for being lazy. The best thing about being lazy is that I was able to order our Christmas cards. Better late than never. Most are hand delivered so timing won't make too much difference. Here is a sneak peek of some of the pictures we used -taken by my ever extraordinary sister-in-law, Jennie. Feast your eyes on these adorable kids!

Today I am also gloating over the purchase of home where the playroom is the furthest room from my bedroom. It has been a beautiful day!

Recital- Details and Pictures to Follow

It is lunchtime at work. I don't have anyone's email handy. So...the recital is on Saturday at 7. We have to get the girls there by 6:30. I don't have the address yet, but it is in Green Valley. It is not at the church this time. Ice cream sundaes to follow at our house after the performance. See you then!

It's a Christmas Miracle

It is 20 whole hours before ballet practice and somehow we have managed to located 2 pairs of shoes, 2 leotards, 2 pairs of tights, 2 black skirts, and 1 pair of gymnastic shorts. All of which are safely stored in the front seat of the van. Angels are singing. With this being "tech week" we have to pull of this miracle again for Wed. and Thurs. Here's hoping.

Thanksgiving Fun

These girls just want to make me smile! Hopefully we will be seeing a whole lot more of Miss Ariel when they move to Tucson in a few months!

The rest of the story

I have been wanting to write down some of my thoughts about the 2nd MRI since the day it happened. At first I waited because I didn't want to be overly optimistic just in case things did not turn out the way I wanted it. And since we learned the good news I have just been overly busy with some projects (ones you will just have to wait and see!) and with work things. Anyway, there were definitely things that I wanted to share and I realize I need to do it now while it is still so fresh and while it still matters so much. So here goes...

With the first MRI I was a mess. The entire drive from our home in Sahuarita to the hospital I went back and forth between almost crying and almost throwing up. The songs on the radio were all wrong. Songs that reminded me of exactly how much I would lose if the test revealed the worst. And then, as you know, the whole MRI experience did not go as well as it should have. It broke my heart that I had spent so much time convincing My Little Reader that the MRI would not touch or hurt her only to be turned into a liar as they stuck her with an unexpected IV within the first 5 minutes of our visit. Holding onto her during the test was also heart wrenching. Standing there praying and silently begging that the test would reveal nothing. Again on the verge of either throwing up or crying. Only to have the whole test be a waste. Heart breaking. Then to be told the news that with the next MRI she would go under general anesthesia. Suddenly the test that I had promised would not hurt her was getting more and more complicated.

Fast forward a month. Yes. We had to wait a whole month for the second MRI. With school starting I was able to push that worry away for awhile. But starting the Sunday before the second MRI I was again in a constant state of begging and pleading and not sleeping. Nothing, nothing, nothing. Please be nothing. You know how the what-ifs can take over your thoughts. Well, they certainly had mine.

But, come Friday, driving into town I was not a mess. There was no urge to throw up or cry. I felt an unexpected peace and calm. The whole day was completely different from our first experience. We were given so much information and we were talked through the whole procedure by both a nurse and Dr. Esparza while My Little Reader happily played away with the toys. Dr. Esparza deserves special mention here. They call him the child whisperer and I don't doubt it for one minute. He was amazing. He sat on the exam table right next to My Little Reader and had her laughing hysterically. No fear and crying like the first time. Just see for yourself.

And when it came time, they marched on down the hallway without us. Now, if you had seen how hard the first MRI was for her and how scared she was and how upset about the poking in her arm (IV) you would know just how much of a miracle it was that she walked down the hall with that doctor and did not once look back for her mom and dad. She was off to take her test without us and she was laughing while she went. What an incredible blessing that was.

And just to show you exactly how much I knew that everything was going to turn out right this time...we didn't even sit and wait in the waiting room. Nope, we went to the cafeteria and had a snack. The peace and calm that I felt that day were proof in my heart that my little girl was going to be just fine.

Look! They were smart enough to weigh her!

A pain free blood pressure check!

Waking up happy!

Now...it did take several days to finally receive that official news...but it was the news that we had prayed so hard for! Just another reminder through the life of my little girl that prayers are answered and miracles do happen every day. I told her, though, two big miracles in such a short life, she better wait awhile to put her mommy through another one!

Adding Up

My Little Reader's "Nothing" is starting to feel a whole lot more like "Something" to my checkbook. The bills are rolling in...time to have a chat with the first hospital and the insurance. Right now it seems as if no one is applying the $500 deductible that we shelled out on that first less than fun visit. And here is a shocker, the less-than-stellar hospital that returned absolutely no results, yeah, they want more money than the hospital that got it right. Something is seriously wrong with this picture.

Nothing!!!

At last

we know that

it is

NOTHING!

More tonight...with pictures!

Pictures coming soon. Left my camera at school for the weekend and was too busy to drive the 4 miles to go pick it up. :)