Eye Appointment & ONH Update

Chazz had a follow-up appointment today with his Ophthalmologist, Dr. Weber. About a month and a half ago, he got his first pair of glasses and it was time to assess!
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Now understand that Optic Nerve Hypoplasia is an underdeveloped optic nerve (what sends the vision to the brain for “decoding”.) So glasses won’t improve his existing vision to 20/20 like with a “normal” eye, but there are two BIG reasons why he does need them.

1) Protection. Chazz is currently diagnosed as legally blind in his left eye and 20/200 in his right eye. (although we are convinced it is better than that!) The glasses serve as a protective barrier against any pokey object that could compromise what vision he has.

2) Correction. Since birth, Chazz’s left eye has had a tendency to wander when he is tired, and his right eye has become a little far-sighted from being much stronger than his left. Also, due to the two different images his brain is receiving from his eyes, it becomes trained to ignore one image, for Chazz his right eye (the one with better vision…). The glasses will strengthen the vision in his right eye, correct his far-sightedness, and help strengthen the muscles in both eyes to prevent any further wandering until his left eye can be surgically centered.

Now try explaining that to a two-year-old to convince him why they need to stay on!!! (hint: doesn’t work!) The first week was a little bit of a battle, and some mornings he just doesn’t want to put them on. But over all, Chazz has done so well keeping them on. Basically, unless he is sleeping or in the bath, the glasses are on. and once Dr. Weber explained how the brain starts to ignore the differing images and that it isn’t easy to get it to restart that signal, we have been pretty dang adamant about it.

Introducing the glasses was a bit of a struggle, but we made it clear that they help him see better and are to be worn always. I would say a proper fit is key if your little one gets glasses. Any sort of discomfort just adds to the madness! We brought Chazz back in twice to be re-fitted, and they said we were lucky. Also, a really cool glasses case is very important. I think because his case has cars on it, he was more willing to even try them on. Roman and I even popped the lenses out of old 3D movie glasses and rocked them along side him the first few days. We just wanted to make it a fun and easy transition.

After he had them on for a bit, we had the coolest experience ever! Suddenly, everything up close that used to be a blur for him, was visible! I took him on a close-up “re-tour” of our home. The heart on his high chair table, the pictures hung on the wall, word magnets on the fridge, ALL THINGS HE WAS MISSING OUT ON! It was one of those mixed emotion moments for me, he was seeing so much clearer, yet I couldn’t help but think of all the things he had been missing.

So fast forward to the appointment. Chazz walked right in there like he owned the place, repeating the words “eye doctor” which was adorable and hilarious at the same time. He knew what was up! His usual nurse checked him in and we sang our ABC’s and Twinkle Twinkle until Dr. Weber was ready. The appointment was pretty quick, he checked the fit of his glasses, checked his peripheral vision and pupil response, and asked how we thought it was going. We both agreed that the wandering seems to be less often and severe and that was about it.
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So his next check-up is in 6 months, and hopefully by that time Chazz will be able to tell US what he is seeing. And even try a picture eye chart for the first time. How exciting!

(PS- sorry for the shotty pictures, the lighting there combined with my dying phone didn’t do us much justice!)

Another Successful Appointment

So after all of last night’s venting? Chazz’s doctors appointment was easy-peasy!

There were no shots, no bloodwork, and no tears. Which is a success in my book.

The purpose of the appt was to check on his weight, since he is such a little man. And we will be seeing them every two months until he makes some ground in the growth department.

The good news is HE DID GAIN WEIGHT!! Chazz weighed in at 18 pounds 11 ounces and 29 1/4 inches tall. {Yes, we are counting any extra ounces or inches we can!} And his head measures right on, as usual.

Roman an I managed to throw together a last-minute list of questions. His pedi had a lot of extra time to answer them, which helped put our minds at ease a little.

Chazz won’t be needing tubes in his ears due to those back to back ear infections a while back as they thought. His ears looked great. Success!

As far as growth, Chazz isn’t leveling out on the growth chart, which is good. He is continuing right along the same curve (between the 1st and 2nd %ile).

Ideally, we want to see him at 4%-5% by two. So we have a lot of headway to make, but I think we can do it.

We also are not going to start him on any growth hormones unless he starts leveling out on the growth chart.

We are going to take Chazz to see the Pediatric Endocrinologist in Seattle if he doesn’t make some headway by the next check-up in two months. Just to be sure that his pituitary gland is producing enough of other hormones as well.

Sigh.

I don’t want to do that, because it frankly is scary and pretty much involves pushing him to the point of being hypoglycemic and testing his levels over a three day hospital stay.

It sounds rough, and I don’t want my baby to go through that.

So we have the next two months to get some chunk on this kid!

But as his doctor said, it looks like he is holding ground, so there is a lot in our favor. And the way Chazz has been eating, I think it will all work out.

So after all my worries, the appt went just fine, we got good news, and all our questions were answered.

Oh, and I made his next appointment in the afternoon. So no more early morning doctor dates from now on!
(really, what was I thinking?!)

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I Need Your Help To Spread The Word!

I’m not one to ask for help. I like to do it all on my own, no matter what. Or at least try!

But we all know that doesn’t always work. Or at least I am starting to figure that out.

So when I put out a call for help from all my Twitter mompreneurs, it was a hard thing to do, okay!

But wow to all of the mamas willing to share their tips and talents to help me get my own dream up and running. I’m humbled by everyone’s willingness to help.

What dream, you ask?

Oh the one I haven’t been telling you about! The one that has been floating around in my brain and leaving fabric scraps all over my house.

Yah, that one.

Well it’s time, FAB family and readers whom I love, to clue you in.

I am opening an online boutique, Tuff Muffin

Two reasons have inspired me to do this: to help offset some of Chazz’s upcoming medical expenses and to raise awareness about his visual impairment, Optic Nerve Hypoplasia.

ONH is quickly becoming the most common cause of childhood blindness, yet there is still so little information and resource available. Let alone support.

I really want to change that.

So along with launching my boutique selling bandana bibs, I have been inspired to spread awareness about the cause behind my shop. And I would love help to spread the facts!

I plan to “open” on January 25th.
{Which is also my birthday so expect a giveaway, but more on that later!}

Basically, I want to take over the blogosphere got a day and flood it with information on ONH and offer my support. {No biggie.}

Even if it only helps one mama like me not to feel so overwhelmed by such a diagnosis. Even if I could just help one parent by answering a question for them. Or even just providing a listening ear.

So….

On the big day, I will of course have the giveaway for bandana bibs from my shop posted, along with a bunch of information on ONH. Extra entries will be awarded for spreading the word through facebook or Twitter.

For those wanting to help spread the word on their own blogs, I am offering a little thank you. In exchange for sharing the post about ONH with your readers, I will display your blog or shop button on my sidebar for 1 month, on the new About ONH page FOREVER as a supporter, and entries toward the giveaway.

I really want to offer my heart and hand to others going through what we have this past year. I don’t want another mama googling about ONH until all hours of the morning, desperate for information. Desperate for answers and direction.

I want to help. I want to spread the information. And I know it is sometimes hard to ask for help, or to know where to find it.

But I think we help can change that. Help me spread the word! If you want to join in, email me foreverandafterblog at yahoo dot com, comment below with your email, or even catch me on Twitter @4EverAfterBlog.

Effing Eff. And Blood Work

Chazz’s blood work came back. Not normal. Low levels of growth hormone. Which would help explain why he’s in the 2nd percentile.

They’re going to “keep tabs.”

(Gee, fucking thanks.)

I don’t know what this means. For him. For us. For anything.

All I know is that I don’t want to talk about it. Or deal with anymore of this Optic Nerve Hypoplasia bullshit.

For now, it’s just snuggle time with my handsome little peanut. My pen and notebook to vent. And a nice bottle of wine Roman picked up for me.

Oh, and a pillow. To scream into. And possible smother myself in… I don’t know yet.

*Sorry for the fowl language. I try not to swear in public. Tonight? I just don’t care anymore.*

Doctors & Appointments & Vaccines, Oh My!

Turning One has meant a ton of appointments for Mr. Chazz.

-His Well-Child Checkup.
You know, the usual stuff and the next round of shots.

-An eye exam. Keeping tabs on his Optic Nerve Hypoplasia.

-Blood work. Checking his blood and his growth hormone levels (cause he’s my little peanut.)

We’ve been a little busy with appointments, ya? All in all, the Kiddo is doing good. At his one year checkup, Chazz weighed 18 lbs and is about 28 inches long. That puts him in the 1 percentile for weight, and the 7th percentile for height.

I’ve been running around behind this kid with a spoon for the past three months trying to fatten him up for this thing and he still dropped 2%. What the…. I’m about due to develope a nervous complex about his eating.

Anyway, he also had to get a round of vaccinations X 3. Which made for a very grumpy dude. And while we were there, the took blood for some tests too. Other than being a little dehydrated from sickness, the first test is fine.

The results from the growth hormone tests won’t be back for a few days, but I’ll keep you posted. I’m crossing my fingers it comes back normal. :-/

His eye appointment went pretty smoothly. The first time, he wasn’t very cooprative. But this time we were able to find out more about his vision. The ONH heavily effects his periferal vision in his left eye. Chazz’s right eye seems to have fair to normal vision. I only he would sit still! But he is able to track and spot things from across the room, across the house even. So I *try* not to fret about it. Like his optholmologist said, he won’t be a pilot, but he’ll be just fine!

Glasses and/or contacts are definatly in his future, as are regular check ups on his Optic Nerve Hypoplasia. I’m still so thankful (Halleluia!) that all of the brain defects associated with ONH arn’t. Hopefully, the growth hormone levels won’t be a problem either.

We’ll know a lot more about his vision as he gets older. Unfortunatly, we have to wait until he is either old enough to cooperate or old enough to tell us. sigh. I hate waiting!

Chazz was one tough dude through all of these appointments. (I’m usually a wreck with these sorts of things.) I think he looked checking out all of the new toys and people. It doesn’t take long for him to have all eyes in the waiting room on him, captivated, and waiting for his next giggle. Such a schmooze!


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What A Day

Today is a good day, but can I just rant for a second here?? I normally try to take everything in stride, but this morning is just not my morning!

To start, my poor Little Man rolled right off of the bed in the middle of the night. (Yes, I’m back to bed sharing!) I can’t believe it. I don’t even know how it happened, but I swear my maternal instincts woke me up before he even hit the floor. And he was in my arms and nursing before he had a chance to cry.
On top of the midnight mommy fail, Chazz had a very important eye appt at 8:30 this morning. I woke up at 8:28. {oh sure chazz, you choose today of all days to not wake up at the buttcrack of dawn!} But I managed to get us all together, out the door, and to the appt in 20 minutes. Whew!

Ok, vent over, on to the good stuff!

The appt went well! It was a follow up to the original ONH diagnosis, and we discussed the MRI and his progress. Chazz is tracking a lot better with his eyes. He does seem to have periferal vision in his left eye, which is a relief! The MRI showed that he does have a smaller pituitary gland, so we are keeping close tabs on his growth. Since getting a 6 month old to cooperate for an eye exam is next to impossible, we won’t know be tackling that until his next eye appt at 1 year old. At that point, we will know how well he can see, if glasses could help, and a little more about how it will or will not effect how he learns.

I am suprised at how well I handled the appt. No tears, I remembered all of my questions, and it offered a lot of closure for me. He doesn’t have the brain deformities that are often hand in hand with ONH. It’s like a huge weight has been lifted, and there is somewhere to go from here. I’m just thankful to have my happy, healthy, handsome boy!

Photobucket Pictures, Images and Photos

Break Out The Pabst, er, Bubbly!

This week has been one big celebration!

The doc called with Chazz’s MRI results, and (drumroll please!) it is good news. There are no tumors or pockets in his brain, and no defects! Both of his optic nerves are underdeveloped, as they thought, but things could be so much worse. I read that 6 out of 10 ONH babies have a midline brain defect, and am greatful that Chazz is in that last forty percent!
Along with the optic nerves, his pituitary gland is on the small side, so we will be seeing an endocrinologist to check his hormones. If it is also underdeveloped, Chazz will be given whatever hormones he needs as supplements. All things considered, this is a huge relief. Google was really starting to get me down! There is so much more to this condition, that we thankfully won’t have to deal with.

It’s nice to know what we are facing. That there is a plan of action to get through this chin up, and Chazz will be our happy, healthy little man, no matter what!

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