Lanie Archives

Lanie has been learning our weaknesses and then using them against us to get whatever she wants.

The boo-boo lip is killing me. It’s equal parts adorable and heartbreaking and each time she does it I reach for my camera and immediately feel the sting of guilt and give in to picking her up for a snuggle, which is what she usually wants. How can I say no to that and why would I even want to.

Seriously, who can resist this face?

She really is a happy baby the majority of the time.

Except for when she’s at therapy.  She’s always ticked off about therapy.

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Our dishwasher broke. Like broke broke.  Like we try to start it and it goes click click click kind of broke.

I saw this coming. We always have to buy a new appliance during the holidays.  I don’t know why it always works out this way, it just does.  Plus, our dishwasher has been begging us to just let it go since we bought this house 2 year ago because 2 to 3 loads of dishes a day is apparently more than it can handle.

It’s true that we don’t have to buy a new dishwasher right now because dishes can quite easily be washed by hand, and we might still wait but we ended up at Lowe’s today looking at our options.  I think we settled on a Kitchenaid. I like Bosch too but they don’t have a track for the lower rack and I know for a fact that it would end up on the floor with broken dishes. Probably often. Note to Bosch: Stop doing that.

When we got out of the car in the Lowe’s parking lot a wave of summer warmth hit us full force.  I thought it felt fabulous but Ryan complained that it was sooo hot.

It’s November and I guess he’s expecting much cooler weather than 88 degrees but that’s what it’s been like here and we live in Florida and it’s like this every year and I’m not sure why everybody is surprised because, like I said, Florida.

 

Plus, Lanie has just grown into Maggie’s old summery clothes and she’s impossibly cute.

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I hope she’ll be able to wear them a bit more before she grows out of them.

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31 for 21 Day 31. I can’t believe I did it!

Sam informed me this morning that Gabe needs a stylist.  He repeated this several times until I realized Gabe had asked him to see if I had a stylus he could use.

By noon I was already asked if we could eat the Halloween candy at least 20 times and when can I wear that cream puff?

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Walmart exploded in my bedroom.

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Lanie got a new hairstyle.

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Actually, I just spiked her already obvious and totally natural mohawk.

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Lucy, who has dressed as Rapunzel for 3 years straight, put on her dress today and I noticed it was almost too small.  I told her she might want to think about a new costume for next year and she replied, Can I just get a bigger Rapunzel dress so I can still be Rapunzel every year?

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And the adult came over to spend some time with the kids trick-or-treating.  She was dressed as a biker chick or some other leather-clad wild child person.

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I swear I see her more now than I did before she moved out 3 weeks ago.

And I was trying to upload a video of Lanie laughing but it’s not working so I’ll try to figure it out tomorrow because it’s late and I’ve eaten 4 Twix bars and I’m just about crashing.

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31 for 21 Day 29. The exercise ball.

So here it is. A few pictures of Lanie doing some physical therapy on her big pink exercise ball.

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She’ll use the exercise ball for a lot of things.  It’ll help build her core muscles for more controlled sitting up and crawling. For right now we are just having her lay on her belly while we tilt the ball all 4 directions. I try to position her arms under her, kind of like she’s doing a pushup.

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She was very happy to cooperate today and I suspect it’s because I put her contacts back in her eyes.

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Ben usually helps me with Lanie’s therapy but he was out back helping Rabbit with something so Matthew took a short break from painting to work with her so I could take some pictures.

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And it was fun and she was happy and we had a really good time.

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We have other items we use or have used for her physical therapy too. A Sit-Me-Up floor seat, which she hated but was really helpful in working her neck muscles; a bumbo, which we use daily; and a good dense quilt, which we use every time Lanie is on the floor (Thank you Nona for your incredible quilting talent and generosity).

I still plan to take some pictures of everything with a run down of how we use it all but for now the exercise ball will have to be enough.

 

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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 27. Not what I had planned.

But when does anything really go as planned, right?

So here’s a picture of Lanie who has a little congestion and was not really in the mood to be put down much today after her therapy appointment.

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Lots of thumb sucking going on this afternoon.

I’m still trying to get a physical therapy post written up. Tomorrow maybe?

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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 22. Life is normal.

Since having Lanie I’ve run across many online discussions where people imagine that families who have a child with Down syndrome can’t live normal lives or do normal things but that really isn’t true at all.

Matthew is number 4. His team lost tonight and that was hard but we were all able to go watch the game and cheer him on.

It was cold and we’ve discovered that Lanie is much happier in cooler 55-degree weather. I’m not, which is why I don’t have a picture of her from the game. My hands froze over early in the evening so here’s a picture from yesterday where Lanie was talking with Gabe.


I know this post was supposed to be about physical therapy tools but that’ll have to wait. It was a long day and I’m just too tired.

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The vast majority of children with Down syndrome are born with something called hypotonia, which means they have low muscle tone. This usually results in reduced muscle strength and a very floppy feeling when holding them.  Hypotonia can affect only some or all muscle groups, including the mouth and tongue.

Fortunately, Lanie’s mouth muscles seem to be quite strong at this point with only her tongue showing signs of slightly lower tone. Her speech therapist thinks it could be because I started working with her months ago. I’m very hopeful that she will be able to communicate very well as her language skills increase. Time will tell.

For anybody reading who needs encouragement and/or advice from somebody currently in the throws of it, here are some of the tools I’ve purchased to help Lanie with any oral issues she may have now and stay off any problems she could potentially have in the future.


The Z-Vibe.

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I first saw this tool a couple months ago on Noah’s Dad’s blog. Noah is a little boy with Down syndrome and his parents have been unbelievably helpful by posting videos and reviews and encouragements from the time Noah was just a baby. Noah is such a sweet kid and was really the first person to teach me that Down syndrome was not scary and that I didn’t need to be afraid. What an impact his young life has made so far.

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The Z-Vibe is an oral tool that vibrates and massages the mouth gently. This allows for more sensory input and stimulation. As her therapist puts it, it helps to wake up the mouth and get Lanie ready for spoon feeding. Honestly, I don’t notice a difference feeding her after I use the Z-Vibe as opposed to not using it at all but we still use it faithfully because she likes it and over time I think it will help.

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I kind of went overboard on her tip collection but I’m okay with that and as Lanie grows and her needs change I can add more tips.  I have hopes that she won’t need them but if she does I’m glad they are available.

The Juice Bear.

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I cannot remember where I first saw The Juice Bear but as soon as I learned that sucking through a straw helps increase lip muscle strength and encourages proper tongue placement I bought one on Amazon. Really, any cup with a short straw would do but I like that I can squeeze the liquid up into the straw to remind Lanie that there is something good in there.  She isn’t great at it yet, but she was able to suck water through a straw at 5 months old and that is pretty early.  We don’t use it every day but I do offer her a small bit of juice in it a few times a week. Her therapist uses one with her too.

Chew tubes.

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Lanie’s therapist gave her these two soft, rubbery tubes to chew on and Lanie really loves biting on them.  Her jaw and cheek muscles seem to be very strong and these tubes will help to keep them that way. I don’t know where they get these but you can get similar ones on Amazon. There are also chew tube tips for the Z-Vibe.

So those are the tools we have so far for her oral therapy. She’s only 7 months old and I’m sure her needs will change over time.  There are two books I would like to have for her. The Z-Vibe Tips and Techniques book and Early Communication Skills for Children with Down Syndrome.

We have noticed that when we feed her smooth baby food she does much better if I mix in some baby rice cereal, and she’s not fond of small bites. Apparently, the size of the bite and the added weight of the cereal is more stimulating and enjoyable for her.

Her physical therapy is just getting started but I do have a few things I’ve purchased and have been using. I’ll write a separate post on this before the month is out. Maybe tomorrow.

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31 for 21 Day 20. My silly girls.

I miss that Kait isn’t in the picture but I think that my girls are really funny and cute here.

On a different but somewhat related note, my brand new Moto X Pure has a kickarse camera. I can actually take a decent picture sometimes and that makes me smile.

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