congenital cataracts Archives

You know how you start your day out early, in a good mood, after a decent night’s sleep, and then everything falls apart about 3 hours in when your kid’s orthodontists surprises you with a $600 down payment for a set of braces he has already had but needs again? Yeah that happened.

Here’s a rundown of my day. It’s a little ranty. I’m sorry.

  • Matthew’s mouth was somewhat complex to sort out and he’s had an expander, braces, a holding arch thing, a couple different kind of retainers that weren’t doing their job. With all the things he has needed to have done I think I was just confused about all those layers and when I took him in because the holding arch had broken and to ask for a better retainer they said, New molars! Looks like he’s ready for his phase 2! Braces again to straighten things out! We’ll need $600 to start this phase! Thanks!
    I took a couple of deep breaths and went about the rest of my day.
  • Lanie had two appointments together at the same place. They called a few hours before hand and asked if I could come in an hour early. I said sure. What I didn’t know was that they wanted me to come in an hour early for the first appointment, and then sit for an hour and a half and wait for the second one. Lanie became restless, I didn’t bring a stroller because I didn’t think I’d need one, and I couldn’t reschedule because it took 3 months to get this appointment. I became what you might call very put out.
  • They want to put tubes in Lanie’s ears. Recent studies have suggested that in most cases tubes are not really all that helpful. I’m going to do some research and see if we can reduce the fluid in her ears here at home before we resort to cutting into her eardrum.
  • She most definitely needs surgery to remove her adenoids and tonsils. This was not what I wanted to hear but Doc did say we could wait on the surgery for a few months and try two meds to try to shrink her oversized adenoids and tonsils. I said yes please.
  • Went to get her prescriptions. Turns out, Tricare won’t cover one of them or its generic. Great. We had to pay for that sucker. But that was okay because if we could keep her from needing surgery I was willing to try it but I was still not thrilled with another surprise payment in one day.
  • At home later I was reading through the pamphlet for Lanie’s meds. The expensive one, a nasal spray, says not to use if you have had cataracts or glaucoma. I’m not even kidding. If you want to know why this is an issue read here.

Now that I’ve done all the complaining. I should add that there were a great many positives that really did drown out the frustrations.

  • Rabbit has been on leave and has a nice salt and pepper beard that I find quite attractive.
  • Sam made me a crown with Rubies on it.
  • Deep fried peanuts. What will the south come up with next? Also, this is why I love the south. Also, DEEP FRIED PEANUTS, PEOPLE!
  • Ben kept me company at Lanie’s forever appointment yesterday and Lanie was incredibly cute.
  • My table looks fabulous. Rabbit had to sand it again because of a problem with the stain and we loved the look so much that we’re going with it. It’s so unique and really gorgeous.  I’ll get a picture and blog more about that later. but for now I’ve gotta go because I’m already an hour later than I like to be starting my day. We have therapy and more ortho and groceries and I need to run and Tropical Storm Harvey is still making the rounds.

It’s going to be another fun day.

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31 for 21 Day 28. I tried.

I’ve been trying to get some pictures of Lanie doing some of her therapy exercises and whatnot but she has been absolutely uncooperative.  She’s had to wear her glasses much more often lately because she’s been congested and her eyes have been weepy.  This has caused her to be on some crazy emotional rollercoaster and this is a visual rundown of how today looked for her.


The day started off pretty good.  We went to Gabe’s cello lesson. Lanie always likes hearing the music but her eyes were really runny and that’s when I decided to keep her in glasses for the day.

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Later on in the day I tried to get some pictures of her in her Bumbo. She was okay with it at first…
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But quickly tired of playing with us.

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Shortly after that she started to get frustrated with her glasses.

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And then frustration turned to desperation.

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Until she managed to quickly yank them off of her face when I wasn’t looking.

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And was satisfied.

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Shortly after that she ate and took a short nap until I packed her into her car seat for a fun trip to Lowe’s.

I carried her around the store in her Ergo carrier and she was very happy about everything. Even her glasses didn’t seem to bother her at all and there were many giggles.  She absolutely loves being in the carrier.

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And she laughed herself to sleep.

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I think Lanie gets more attention than any of my other children when I take her out in public. It could be the glasses, but she isn’t always wearing them. Or it could be that she is just seriously adorable. Maybe both.

I’m guessing that the physical therapy post will have to wait until Lanie is feeling better and back in her contacts.

Also, and I don’t want to speak too soon, I cannot even believe that I’ve made it this far into 31 for 21.  I only have 3 days left. I’m so happy that I stuck with it.

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31 for 21 Day 24. Her glasses.

When I first learned that Lanie had congenital cataracts I googled like mad but found very little information about the condition. I had so many questions and there were so few answers from parents who’d gone through this with their newborns because congenital cataracts are rare and this is why I write about Lanie’s eyes so often, so our experiences might be helpful to another family.

I’ve written about this before, that Lanie has to wear glasses or contacts all the time.  Lately, and I think this is because of the drier weather, her eyes have been weepy and a little red so I have left her contacts out more and put her in her glasses.  She normally doesn’t like this but she is becoming more and more okay with wearing them.

I wanted to post some pictures of what her eyes look like without glasses or contacts in. She has absolutely gorgeous eyes but notice how weak her right eye is without correction.

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Her right eye almost always turns in without her glasses or contacts. It only sometimes does this with correction and her eyes are getting stronger and stronger with correction as she grows.

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This is one of my favorites.  She makes glasses look really good.

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She was getting sleepy and it was about time for a nap. Love the thumb sucking.

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The camera on my new phone is about 1000 times better than my old one but, unfortunately, I still can’t seem to get a clear picture of her smiling. She just can’t sit still when she’s happy.

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But blurry or not she so stinking cute I can’t even stand it.

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31 for 21 Day 19. Sometimes rough.

Things were hard for me for a while.  I didn’t even realize how hard until I was able to look back on the last year with the clarity of hindsight. And while I’m not happy with my then attitude and how I felt about things 10 months ago, I am glad that my now attitude reflects so much growth and a new understanding about life.  Things are different now. Things are good.

But I still find myself having rough days and there are always appointments to make and therapies to try and wild thoughts of what could still go wrong because one little extra chromosome can wreak so much havoc.

Therapy appointments, and weigh-ins, and blood work, and why is she sweating, and NOBODY MOVE SHE JUST LOST A CONTACT, and what the heck is T3 and TSH, and getting her to take those disgusting vitamins, and holy hound dogs petechia = leukemia does my baby have cancer?

And her eyes.  I can get so sad about her eyes.

Sometimes I feel so down about Lanie’s aphakia and I’m sad that I even know what that word means.  I feel sad that she has to wear contacts or glasses to have any kind of useful vision and, while I don’t know what either of those things feel like, I can imagine it to be uncomfortable at times, especially for a baby who can’t adjust her glasses or let me know when her contacts need cleaning.  She can’t tell me when her contacts are dry or itchy, or if her glasses are hurting her head, or if she just needs a break for a little while.

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I feel sad that she has to wear contacts or glasses all the time. All. The. Time.
And that this will go on indefinitely and she may be a teenager before she can get her implants.

I feel bad that I can’t know for sure what her vision is like.  Are the contacts blurry? Could we be doing more to help her see?

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Lanie’s ophthalmologist sometimes needs to do extensive eye exams that make her sad.

And that makes me sad.

I have to remind myself often, as Dr. Mickler firmly told me on the morning of her first surgery when she was just 7 weeks old and I was asking a million questions that he had already answered at her appointment, that the alternative to this would be complete blindness.

And what sometimes feels so frustrating is actually a miracle. Something to be thankful for.

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And that, clearly, she is not blind now.

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She sees us and she smiles.

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And that is really good stuff.

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Lanie has a cold so I’ve left her contacts out a little longer than usual because her eyes have been weepy. This means she’s had to wear her glasses more often and it seems that she’s becoming a bit more accepting of her situation.

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For a short period of time at least.

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I made her an eye appointment today just to have her contacts looked at and to make sure her eyes weren’t developing any infections and, while her optometrist did prescribe her some antibiotic eye drops, she said her eyes look pretty good.

I also learned that Silsoft contacts, and other silicone lenses like them are prone to build up and cloudiness.  Many eye doctors recommend getting a new pair when this happens ($400!) but Lanie’s doc just polished them with this little machine thing and they came out crystal clear.  If your child wears these you might want to ask about having them polished.  Lanie’s eye doc will do that for free whenever I need it done – we don’t even need an appointment.
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We have learned that Lanie does, in fact, have Down syndrome, which you may already know that we strongly suspected.

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And she’s got the best little mohawk-ish tuft of hair that is always sticking up.  It makes her look even more like her brother Matthew.  This doesn’t have anything to do with her diagnosis but it’s in every picture and it’s cute.

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We are quite okay with her diagnosis.  More than okay, actually.  It’s as if God has let me in on a little secret that not that many people get to know or understand.  When my words start working together again I’ll write in depth about this but as of right now I’m spent and my word power seems to be a little broken.

There really is so much to say about so much stuff that’s happened with our family in the last month but Maggie has peed her pants.  Again.  Potty training her is kicking my butt.

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You’d better just watch your tongue.

6106437603819520Apparently, and I didn’t realize this until today, I am supposed to be easily offended by questions/comments about Lanie’s vision, particularly about her glasses.  There is a whole community of people who are dealing with similar issues who’ve made lists of what not to say to parents of babies with glasses and, seriously people…

Here’s what I’m talking about, with responses to help you better understand.

What’s wrong with her eyes? Um, no.  Just because she wears glasses you automatically assume something is wrong with her eyes?  
Are those glasses real?
 Don’t even. Of course they’re real.  I wouldn’t make my child wear glasses if there wasn’t something wrong with her eyes. Sheesh.
She looks so cute in those glasses!  Who raised you?  Are you seriously suggesting that she doesn’t look cute without them?  (Like when I tell you that you look really good in purple, I’m basically saying that you look like crap in every other color.)

And the absolute number one thing that I’ve read that you should say to a parent of a baby or toddler with glasses…
A comment about anything other than her glasses. Because if you all pretend you don’t see them, maybe they aren’t really there to begin with.

All joking aside, I have a 4 month old who has had two eye surgeries and wears contacts or glasses all the time and even I’m afraid now to ask somebody a question about their child’s glasses for fear of offending.

Personally, I think it’s unfair to expect people to tip toe around me and watch their every word because I might be uncomfortable with my baby’s medical issues.  When we make people afraid to ask questions we cause them instead to stare because curiosity is a natural thing.  I don’t like to be stared at so please just ask me a question.  I’m cool with it.  And even if I’m not, it’s still okay.

Yes, my child is different.  News flash…  Everybody is different.

You can ask me anything about my baby’s glasses, contacts, down syndrome, etc…  You can ask me what is wrong with her eyes because there is something wrong with her eyes.  You can ask me if her glasses are real because it is unusual to see a baby in glasses.  Lanie was born with very dense bilateral cataracts and she had to have surgeries to have both lenses removed.  That is not normal and I think it’s silly to expect other people to pretend like it is.

When she is old enough I want Lanie to be very comfortable answering questions about her condition, but if she sees that I’m uncomfortable and offended by others’ curiosities, she’s more likely to become uncomfortable and offended as well.

And she is stinking cute in her glasses, darnit.  There is no arguing that.  I guess it’s something I’m just going to have to learn to live with.

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Baby’s got a new pair of glasses

wp-1467483026477.jpgAs much as I trust him with her eyes, Lanie’s ophthalmologist was more than a little discouraging when it came to the idea of contacts.  Every time Rabbit and I talked to him about it he tried to dissuade us from getting them for her, telling us how difficult it would be, going so far as to warn us that it could harm our marriage trying to get them out of and then back into her eyes and that we’d have to find a new kind of patience with each other.
I don’t know what kind of relationship he imagines my husband and me to have, but we have 10 kids and have been married 2 decades.  I think we can handle it.

Surprisingly, Dr. Mickler’s contact attitude doesn’t really bother me.  It’s hard to be irritated at the surgeon who saved both of my baby’s eyes and in the end he wrote her a prescription for both contacts and glasses anyway.  We took the prescription to her optometrist, who was very encouraging, and $700 later she’s got contacts and glasses and thank heavens for Tricare, which miraculously paid for both after a little prodding.

I cannot remember how much I said about the contacts before, but they are 30 day contacts.  She can wear them for a month, then they need to be washed overnight, then they go back in. Her ophthalmologist wants them out at least once a week to be cleaned and to let her eyes breath but he said we could go 2 weeks if every week is too stressful for us.

Jokes on him though because Lanie has had them for almost 3 weeks now and, as it turns out, I can pop them out and put them back in her eyes all by myself.  Not counting the overnight washing they require, the whole thing takes about 5 minutes of my time, 10 if she’s persnickety.

And it’s a good thing they are working for us too because the first time I took them out and she had to wear glasses she hated the glasses and me and the whole world.  She decided that she wouldn’t wear them and that was that.

I did manage to get this picture of her in the brief calm before her storm of anger.

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So for now it’s all contacts so I don’t have to argue with her about wearing those adorable glasses because nobody wins a fight with a 3 month old.

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My 3 month old wears contacts.

I don’t have many pictures of Lanie, and I only have one of myself with her and it really isn’t a good picture at all and it was taken with a smart phone in the hospital right before Lanie’s first surgery so everything was just weird.  I am unbelievably sad about this and really disappointed that I’ve missed recording so much of these first 3 months, but Kait’s camera is broken and I’m just not the photographic genius I always wanted to be.  I do take pictures, but they always turn out fair to awful.  I’m just saying this to let you know that I’m desperate so even though these pictures aren’t the best, I tried.

Lanie got her contacts last Monday and her brain is slowly learning to take all those new images and turn them into something.  I can see the daily progression in her eye control, her neck strength, and her attempts to communicate with us.  I’ve also noticed that she is beginning to associate sounds with the thing or person making those sounds.

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It is truly astonishing how necessary vision is to a child’s development. Her ophthalmologist told us that she was essentially blind before her cataracts were removed, with zero vision in her left eye and only some light and maybe some color vision in her right eye.  Nothing useful.  Then, after her surgeries, he said she could see but without focusing power everything was just a blur of shapes and colors.  So this past week everything has been brand new for her and I really love all the smiling she does now.

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It’s really crazy that my 3 month old wears contacts.  Seriously, people that learn this cannot wrap their minds around it.  It really is a gift though because her glasses, which are still being made because it takes at least two weeks to create the lenses she needs, are THISTHICK and I think it would be disappointing to not be able to see her eyes very well as they light up when she learns new things.

Her contacts are pretty thick too, but they don’t detract from her eyes at all.  If you look closely you may be able to see the contacts in this picture.

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She really does have the prettiest eyes.

Other than her eyes her health appears to be very good.  I still nurse her often but I also pump about 12 oz a day and add whole powdered goats milk to it to boost the fat and calories she’s taking in and she is finally gaining weight the way she’s supposed to. It is still a lot of work to make sure she is eating enough each day but it has definitely been worth it to see her get a little meat on her bones.  I’m hoping in a month or so I’ll be able to start weening her off the bottles and just nurse her normally.

FYI if you are ever find yourself needing to boost your baby’s caloric intake – I added formula to her milk in the beginning because that’s what her pediatrician recommended.  That turned out to be hard on her tummy and I started looking for alternative ways to boost her calories.  I came up with the idea of adding powdered goat’s milk after reading that many moms who cannot breastfeed are using goat’s milk as a base to make a better formula because it is easily digestible.  I chose powder because I wanted to boost the vitamin rich breast milk she already ate, not add more liquid.  I decided to add one scoop of it (I think it works out to be two tablespoons) to each 4 oz bottle of breast milk.  It took her a few days to get used to it but she does very well on it now.

She’s rolling over all the time now. She started rolling over from front to back at about 2 weeks, and has been rolling over from back to front from about 2 months.  She even rolls over when she’s swaddled.  It scared me to see her face down without her arms free to help her lift herself up so I’m not swaddling her anymore.

She’s doing so much better than we had hoped for and at her appointment today Dr. Mickler said he doesn’t need to look at her eyes until September. He’ll test for glaucoma then so please pray she’s one of the few who does not have that problem.

I can’t think of anymore updates to give so that’ll be it for now.

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Done

Lanie’s right eye surgery to remove her cataract is finished. She did so well.

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She’s much more interested in getting the eye shield off of her face this go round though so that might be a challenge. It’s amazing how much growth can happen in just two weeks. When she had her left eye done we had no concerns about her rubbing her eye. This time is much different. She’s got opinions about it.

We’re now on our way home and in hoping to get a nap before Lanie’s post-op eye appointment this afternoon.

I’ll write later.

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Waiting

We’re in the waiting room at the surgical center. Lanie is having the cataract in her right eye removed and the tear duct in her left eye opened.

This wasn’t scheduled until yesterday afternoon. We knew it would be done within the next few weeks but didn’t realize it would be scheduled with such short notice. It kind of left me with little time to worry and fret so it worked for me.

For some reason I’m more nervous about this surgery than I was when she had the left eye done two weeks ago. She didn’t seem bothered at all though.

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She slept and smiled, and smiled and slept.

I’ll post later on with an update.

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