baby wears glasses Archives

It’s Down syndrome awareness month, people.

I’ll be blogging about Lanie for the next 31 days because October is Down syndrome awareness month and she has Down syndrome.

Day 1 is a somewhat blurry picture because there isn’t much brain time for anything else right now. 

Plus, her glasses and wonky pigtails are killing me.  I just love her so much.

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I’m not quite sure about what to write about this morning.  I woke up a half hour early because a cat was staring at me but I am about 45 minutes late on my morning so far and I’m not sure how that happened. Maybe I accidentally made decaf or something.

Hahaha.
No.
That would never happen I was just kidding.

I don’t have anywhere I have to be today and I’m hoping that I can shake the frustrations of the last couple of days off by grocery shopping. I don’t know why I think going to the grocery store will help. It’s not like it’s ever been therapeutic for me.

I have more to say about the orthodontist because I have another kid that is ready for braces. This is in addition to the Wednesday morning debacle.  This is my Thursday afternoon story.
Ben is my 3rd kid to need braces and he’s been in pre-treatment for 2 years waiting for some teeth to come in and some growth spurt and he is now ready for his braces, which apparently must happen RIGHTNOW. But since we just shelled out a surprise $600 for Matthew’s metal on Wednesday, and we have a wedding coming up, I told them that I wanted to wait until after the holidays to get Ben’s treatment plan started. I was subtly accused of putting Ben on the backburner in favor of Matthew’s treatment. We really need to get Benjamin started very soon. I understand that you paid a down payment just yesterday for Matthew’s treatment but we really don’t want to see this guy put on the back burner.

Really?
I don’t know. Maybe I’m being too sensitive here but I really don’t think so. I would also like to add that the billing gal talked in very hushed tones about our not being able to afford it and mentioned that she wasn’t supposed to talk to Dr. Brooks about it but she would just for us even though I never implied that we needed help, I just said that we were going to wait. It was all very patronizing. And weird.

I normally really like the kids’ orthodontist. He was great with Kait’s wonky mouth and has been pretty good with Matthew’s up until recently. I’m going to call a different ortho today and get Ben in for a consult because I’m really irritated right now and why are all these little flies all over my house? We’ve completely cleaned out the pantry and all the cupboards and the boys’ rooms and where the heck are they coming from?

It’s been a hard week.

On a brighter note, literally and figuratively, our main bathroom has been changed from a brownish yellow color to a soft white (thanks, Matthew!) and scrubbed clean (thanks, Rabbit!), and has new knobs and it looks great.  We are going to refinish the cabinets eventually too but we have a gazillion other projects in line ahead of that one. Like the never ending kitchen redo.

And Lanie has turned a bit of a corner mentally and physically. At physical therapy yesterday she showed increased muscle strength and then in occupational therapy she was making an effort to interact and tried to mimic what her therapist was doing. It was the first time that it didn’t seem like Lanie was just in the room with the therapist, but actually participating with her. It is a really big step.

Here’s a blurry picture.

This is how Lanie reacted to me explaining my week.
This girl just gets me.

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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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It’s odd to me that even though it is super easy to lure Kait is over here (food) I never can seem to get her in a picture with the younger three girls.

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I’ve also realized that I take way more pictures of Lanie than I do anybody else.  I think that is partly because she’s the baby and we’ve always had more pictures of the babies than the older kids, and partly because of her rough start and me not wanting to take any moment for granted.

And any pictures I do take of the older kids quite often involve them holding Lanie.

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Because I love how they love her.

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And I want to keep these moments forever.

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Because they are so, so good.

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If only I could stop and really live in every moment.

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Somebody get me a pause button. Quick.

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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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