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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Filed under: 31 for 21Down syndromeLanie

31 for 21 Day 26. Therapy.

Tomorrow is Lanie’s first actual physical therapy appointment.  She’s been evaluated and it has taken weeks to have that evaluation approved by the therapist and Lanie’s pediatrician and her insurance to get her into regular physical therapy.


Lanie is very close to sitting up some days, and other days she goes boneless every time I try to work with her.  I’m hoping her therapist will give me some tips to help get her sitting up because I know she is almost there.


She’s also behind on holding toys. She’s very interested in them, she’s just slow to reach out and grab them. Naturally, she’s behind in this area because she didn’t have useful sight for the first 2 1/2 months of her life. I’m very hopeful that therapy will help close the gap so she isn’t so behind here.  
I’m planning on posting more about my physical therapy hopes for Lanie after her appointment.  I’ll also post a list of tools and toys we already use to help in her development.

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31 for 21 Day 25. Lessons in mothering.

Caring for Lanie has brought out the nurturer in Maggie. She’s been giving her baby doll more attention lately.

Feeding your baby is what your belly button is for anyway, right?

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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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Filed under: 31 for 21baby wears glassescongenital cataractsDown syndromeLanie

31 for 21 Day 23. She’s so cute.

It’s a bit blurry, I know, but this picture of Lanie in her glasses is just too cute not to post.

She still doesn’t love her glasses but she’ll wear them for a little while now before she rips them off.  This time she was even smiling about it all.

Jeepers I love this little girl.  

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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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Filed under: 31 for 21Down syndromefancy foosballLanieLucyMaggieMatthewSometimes we do stuff


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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Filed under: 31 for 21Down syndromeLanieoral therapy

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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Filed under: 31 for 21Down syndromeLanie

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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Filed under: 31 for 21baby wears contactsbaby wears glassescongenital cataractsDown syndromeGod is.Lanie

31 for 21 Day 18. The other kids have things too.

Gabe and Sam both have suspicious moles on their backs and were referred to a dermatologist because skin cancer is a real thing.

Turns out both of their moles, while unusual, aren’t so scary yet and they don’t need removing are this point.  This was a relief for sure.

We have more appointments for monitoring lined up but for the most part, we were told there is nothing to worry about.

Lanie was with us and all the commotion kept waking her from a peaceful sleep.

This is her not being amused.

Edit: I wrote this after 11 pm last night in an attempt to get a post up before the day was out and I was very tired and my grammar and spelling and sentence structure were horrible.  I try to blog how I speak so some unusual sentence structure is intentional, not error. But, good grief, I left out complete words. I hope I got them all fixed.

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