Tuesday, February 28, 2012

Getting closer...

...to being a full-time "walker" that is!

It has been awhile since I posted a video. Charlotte has made great strides in the mobility department over the past week or so. At home, she walks everywhere, and really only crawls when she falls or wants to get somewhere fast. We are very proud of her!

Thursday, February 23, 2012

Tomorrow is Friday. Yes!

We had a pretty good week. But I am glad tomorrow is Friday.

For those who have asked, Charlotte's appointment that I talked about in my previous post went as expected. According to the room full of professionals who sat around us, Charlotte has made significant gains since August. I was a bit peeved by the speech assessment, as it takes no account of parent report, and only what she demonstrated while sitting in a strange room with three people she has met only once in her life asking her to do random tasks. But, as I said before, it really doesn't matter.

After her appointment on Tuesday, she decided to prove that darn speech therapist wrong, and have a big "signing" explosion this week. Mike walked in the door yesterday from work, and she crawled towards him, signing "daddy" while vocalizing dadadada. Gave me the chills. Also this week, now when she wants to nurse or requests something else, she signs "please" along with what she wants. Finally, I have caught her a few times this week repeating signs while watching Baby Signing Time, where in the past she would just watch, and not actively participate.

The best part of my week was dinner last night. Charlotte was hilarious, and the older kids were totally feeding into it. She has discovered if she makes crazy faces, everyone responds. Listening to my three children belly laugh together is the perfect ending to any crazy day.

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There is more I could write about, but I am beat. Charlotte is still working on a mouth full of teeth, and sleep this week has been rough. After not napping today, she fell asleep early tonight while chilling with daddy downstairs.

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I am hoping for a few hours of uninterrupted zzzzz's tonight! Good night!

Monday, February 20, 2012

Gearing up.

Tomorrow Charlotte and I head to Children's for her developmental follow-up appointment at the heart center. I hate these appointments. Three therapists and a developmental pediatrician will sit before me and tell me my child with a developmental disability is delayed (to which I really want to say "no s***!"). They will list a bunch of things that I can do to help her with these delays (because what we currently do is never enough?!). They will probably tell me she needs more therapy (yes, three hours a week isn't enough, lets see where else we can fit it in our schedule). I will leave there with an index card with their recommendations, another card with an appointment reminder for 6 months from now, and a heavy heart.

I have been through a couple of these, and I have to say, they have gotten easier. I have been working on developing a tough skin, and not letting these things effect me like they used to. I know my child is amazing. I know my child will hit her milestones when she is good and ready. I know in the game of life if she walks at 18 months or 2 years, it really doesn't matter. I know she is going to talk someday, and when she starts, I probably won't be able to shut her up!

So, tomorrow, I will tell them every amazing thing Charlotte has accomplished during the past six months, and try not to be knocked down by their assessment results. Because, really, what the heck does it matter?!?

And tonight, I concentrate on, not what she can't do at 20 months, but rather what she can.

Charlotte can:
 -Take 10-12 independent steps.
-Initiate 6 signs, needs a verbal prompt for a handful more, and imitates just about whatever I ask her to.
-Has one official spoken word, "sit." She learned that one from the repeated reminders for her to sit when she is standing on the fireplace or on her chair.
-Is learning how to eat with a spoon/fork and doing a fantastic job.
-Climb. Stairs/Fireplace/Tables/Chairs....the girl is a monkey.
-Charm others. She has this coy little look that reels in strangers, and makes those around her smile.
-Carry on a conversation in her own language. I think only Sam really knows what she is saying though.
-Read book after book and not get bored. By herself, or sitting in someone's lap, it doesn't matter. She loves to read.
-Completely fold in half while throwing a temper tantrum. She doesn't like it when she doesn't get her way. 
-Give a hug that makes even the worst day seem better. She melts into you and won't let go for as long as you are willing to hold her.

She is amazing. I know it, you know it. Screw the doctors, what do they know?


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Friday, February 17, 2012

She sure is.

A few people have asked me lately if Charlotte is still breastfeeding. Simple answer? Yep, she sure is. They usually follow up with, "how long are you going to do that for?" My answer? I honestly don't know.

When Katherine was born, I was determined to breastfeed. I overcame all the novice mom breastfeeding obstacles and went on to nurse her for 17 months. I was teaching full time back then, and pumped 3-4 times a day to provide her with enough milk. It sucked, but was worth it. She weaned herself a month after I found out I was pregnant with Will.

Breastfeeding Will was much, much easier. After nursing Katherine, I felt like a pro, and combined with my new "stay at home mom" status, I had a much better relationship with my pump. I went on to nurse Will for 23 months, however, after he turned one, very few people knew he was still going strong. Why? I am not sure if I was ashamed, or embarrassed, or wanting to avoid the obvious tough questions; probably a little of all of those. I remember having conversations with friends about how they thought once a child is old enough to ask for it, they should no longer be allowed. Will was a very verbal child, and learned to "ask for it" around 15 months. I kept quiet when these friends voiced these opinions, as I wanted to escape having to defend my choice.

Charlotte was a great nurser from day she was born. Though, when she was three days old, we sat as a pediatrician we had never met before (ours was out of town the week Charlotte was born), confirmed that yes, she did have Down syndrome and then quickly advised me to start pumping and giving her bottles because babies with Down syndrome have problems nursing. My mommy gut told me otherwise. I was thankful to have a lot of breastfeeding experience under my belt; I knew what a good latch was and Charlotte had it. I also knew she was getting enough milk (count the diapers...what goes in, must come out!), and I quietly chose to disregard the pediatrician's advice. Thank goodness I did. In the months that followed, I did have to pump and add extra calories to two of her feedings a day in order to beef Charlotte up for heart surgery, but after surgery we ditched that practice.

I breastfeed for multiple reasons; but mainly, because it works for us. Me and my babies are/were happy doing it. After Charlotte's Down syndrome diagnosis, my mission to breastfeed as long as possible was intensified.

Babies with Down syndrome are more prone to respiratory infections and ear infections.
Breast milk has immunities that can help prevent these ...though, notice I said help; a lot of it depends on the child; Will had a ton of ear infections his first year of life despite his love of boob! Charlotte, on the other hand, has never had any sort of infection in her 20 months of life. In fact, she has only been on antibiotics twice, and both of those were following surgeries to make sure she didn't get an infection. She is an extremely healthy child.

Babies with Down syndrome have low muscle tone, resulting in a weakness in many areas and delayed speech in part due to low oral muscle tone.
Breastfeeding increases oral muscle tone due to the muscles required to nurse.

Babies with Down syndrome tend to be mouth breathers, which can be one reason for tongue protrusion.
Breastfeeding teaches infants to develop a suck/swallow/breathe sequence that promotes breathing through their nose.

Individuals with Down syndrome have lower IQ's then their typical peers.
While not proven, it has been speculated that breastfeeding and extended breastfeeding (which is defined as breastfeeding past one year) can increase a person's IQ.

It is interesting to think about how I have evolved as a parent over the past six and a half years. A few years ago I was hiding my extended nursing practices in fear of being judged, and now I am typing it out for the world to read. In fact, I am now pretty dang proud of it. So, when asked how long I will nurse Charlotte, my answer is as long as both of us are still happy doing it. Fact is, she doesn't seem close to giving it up. Each morning, she grins at me from her crib and intensely signs milk with both hands and every night after tucking the big kids in, we settle in the recliner for her to nurse before bed. I'll keep you posted. 

Disclaimer: Six and a half years as a mom has also taught me to be a less judgmental of others; parenting is a tricky thing and everyone has their own idea of what is right. Above is a post full of my opinions, my intent is not to judge anyone who decides to feed their babies in different ways. Notice, I stated, more than once, that the reason I breastfeed is because me and my babies are happy doing it? That is what is important. The moral of this post: Do what works for you and screw what everyone else thinks :-).

Tuesday, February 14, 2012

A lovely day.

Happy Valentine's Day everyone! We sincerely hope you had a loved-filled day!
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Heart shaped marshmallow anyone? Charlotte loved them! Shocking, I know.

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Thursday, February 9, 2012

A break.

Last week, we spent a few days in the Dells. We go every year, rent a big condo, and spend a few days watching our kiddos engage in a ton of water play. Our best friends join us, and we truly enjoy our mid-winter chill out time. No need for an alarm clock, fancy clothes or make-up, just a bit of time to forget about life.

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This year I welcomed this break more than usual. I have been feeling a bit frustrated lately with our crazy schedule, and a few days without therapy, tutoring, preschool runs, and everything in between sounded fabulous. We left everything therapy related at home, and let Charlotte truely just "be" for 3 days. It was great.

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To say Charlotte enjoyed herself is an understatement. She LOVED the water. Her body would tense up and she would squeal in delight as the pools came into view. She butt scooted around the zero-depth pools and relentlessly signed more each time she would find herself at the bottom on a slide.

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The adults discovered the online game "Words with Friends" and the kiddos relaxed with their own technology in between water park visits. We laughed, ate, drank, and just chilled out. I needed it. We all needed it.

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Hopefully this break will give me the strength to make it through the rest of the winter!

My favorite picture from the weekend:

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Charlotte is the most verbal, non-verbal child. This is her new "look." She is very expressive, and she knows how to show us what she wants.

She also knows how to show us when she is all done. Folds herself in half and admits defeat.

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I'm done as well. Night y'all. Have a great weekend.

Saturday, February 4, 2012

Teething sucks.

Like many other things, an extra chromosome can throw a wrench into teething. Babies with Down syndrome usually teethe later, and their teeth sometimes erupt in a wacky order. Charlotte didn't get her first tooth until 16 months, and it actually came as a pair; two cute bottom center teeth. A few days after the first two, I was fishing something out of her month, and noticed she had two top molars as well?!

Since those first four teeth, her mouth has been quiet. Until this week. Yikes. She is miserable, her gums are swollen and huge, her hands are constantly in her mouth, and it looks like a ton of teeth may erupt any minute. On top of it she has a slight cold. Needless to say, she has been, rightfully so, one very cranky baby. Nothing seems to make her happy, unless she is nursing...which, going from 1-2 times a day, to around the clock nursing has been a treat (though I am happy that something soothes her).

I pray those darn teeth come through her gums ASAP. I want my happy girl back.

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Wednesday, February 1, 2012

Help Charlotte.

I read a lot of blogs. More specifically, I read a lot of blogs about children who have Down syndrome. In the blogging world, there is always a lot of talk about international adoptions of children with Down syndrome. You see, in many countries,  kids born with 47 chromosomes are put in orphanages and abandoned by their families. After a few years in an orphanage, if these children are not adopted, they are moved to adult mental institutions where conditions are so bad, that many die within a few years of transfer.

Horrific. Tragic. Sad.

Many of my blogging buddies have come together over the past few days to raise money to bring one particular child home. This child's name? Charlotte. In just two days, over $6000 has been raised. However, adoption ain't cheap my friends, and they need more help. I know there are many good causes out there. I know there are many children who need to be adopted. I know there are lots of things you could do with that extra five or ten bucks in your pocket. Do me a favor? Take just a couple minutes and visit Patty's blog, an awesome advocate for orphans. And if you have a few more minutes, go and visit Charlotte's mommy's blog.

I gotta say, this gorgeous girl has a beautiful name, though I am a bit biased ;-). Let's help bring her home.