Friday, August 31, 2012

Exceeding Expectations

First of all, we would like to thank everyone who has donated to support our Little Daniel team for this year's Buddy Walk. We actually more than doubled our fundraising goal. I originally set the goal at $500, as we had never done a Buddy Walk before and had no idea what kind of response to expect. You all blew our expectations out of the water and we are so thrilled. That you would donate your time and money to tangibly show us how loved Daniel means everything. Thank you. We still have almost a month left to accumulate more donations, so who knows where we'll be by the time the Buddy Walk is upon us!

Wow!!! Thank you!!
And if that weren't enough, as of now we are currently in the top five teams in terms of fundraising!

Thank you!
 We only need five more people to walk with us to meat our team member goal. If you are willing and able to walk with us on the 29th, please do! Joe's sister Jess is even designing special custom t-shirts for us to wear, so if you're interested in ordering one, let me know and I can hook you up.

Lastly for today, I'd like to share a series of pictures with you that I've entitled "Fun with Black and White Toys."

Daniel loves anything black and white. His OT recommended we obtain more B&W toys to motivate him.
"Wow, Mommy, I like this!"
Before this he had never actually paid any attention to the toys we placed on his chest.

At this point I was practically peeing my pants with excitement! Not only was he looking he was purposefully touching!

Then he picked it up!

"Wow! I love this toy!" Someone loves pandas just like his Pap-pap. :-)

He has brought toys to his mouth before. But this is the first time I've ever seen him pick up a toy all by himself.
We are so thrilled with our OT and these toys. Daniel is still right on target for his baby milestones and we are so proud of him!

Links to our favorite B&W toys (so far):
Wimmer-Ferguson Double Feature Mirror (the B&W toy that started his obsession)
Sassy Look Book. You can add family pictures or leave some of the black and white images visible.
Genius Baby Bright Starts Gift Set. Already love this, and it just arrived today.

The only thing I personally wouldn't buy in black and white is a crib mobile as I feel that is supposed to be a calming and not a stimulating area. Might be great for over a changing table, though!

My next update will be about Lily's very first ever ballet class, which was so cute that I cried several times (uh, I guess my kids make me cry a lot...mostly for good reasons). Stay tuned!

"And day by day this pathway smooths, 
Since first I learned to love it;
The peace of Christ makes fresh my heart, 
A fountain ever springing;
All things are mine since I am his-- 
How can I keep from singing?"

Sunday, August 26, 2012

Prayer Requests

I don't have an update for everyone yet (probably this week will hold many updates!) but I do want to ask for some prayers for the following intentions:

1. That Daniel continues to do well! He is such a smiling happy baby and is "verbalizing" (baby noises in response to us talking to him) so well, which is such a good sign. We are specifically asking for prayers for his continued success with baby milestones as well as that the final hole in his heart closes!

2. That Lily do well with the very quick transition from slow-paced summer days to the busyness of 3 days of school and a ballet class each week, not counting the normal visits with family and playdates! It will be a lot for her to take in.

3. This last request will require some explanation. As I encounter more people who have children with Down syndrome and hear their stories, I have realized (yet again, as they are continually awesome) how blessed we are in our family and friends. I have heard countless stories of mothers and babies being abandoned by the husband and father when faced with a diagnosis of Down syndrome. I have also heard stories of extended family members ignoring or outright verbally abusing children with Down syndrome, or telling the parents they should have aborted their child. I can honestly say that none of these scenarios even crossed my mind when we got Daniel's diagnosis in the hospital, and our family and friends have truly lived up to my high expectations and have accepted and loved Daniel with their whole hearts. So I ask you to pray for those who are not as lucky as we are. This issue has been heavy on my heart the last few days!

Thank you! Hope to have another update soon! And if you'd like for us to pray for your intentions as well, don't hesitate to email me!

Baby Daniel says, "Thank you for being awesome!"

Tuesday, August 21, 2012

Lily Update

Lily turned three about a month ago. Three has definitely been more different than two! Her little personality is coming out even more. I feel like up until this point she has mainly been focused on developing physical skills and now it's emotional/intellectual skills that are coming to the fore.

Enjoying her new playset.
Lily is obsessed with all things ballet. Just today, she was practicing "ballet" in one of her ballerina outfits that her Aunt Jaci and Uncle Daniel got her for her birthday. I was showing her how to do an arabesque, and she tried and tried but just doesn't have the coordination yet to stand one leg and put the other leg straight behind her. I did not put any pressure on her and was really trying to have some fun with her (especially since Daniel was napping and my one-on-one time with her is precious, we focus on fun during these times). But she cried! She cried because she couldn't do it perfectly the first time. This is a tendency I have noticed in her for a while and it really clicked with me today. And she is just like her mommy in that regard. So it seems we have a little perfectionist on our hands. It took me a long time to realize that things are worth doing even if they don't turn out perfectly. I hope she realizes it earlier than I did!

Other things Lily is doing:
  • She understands and speaks in complex sentences. We stopped counting her words a long time ago, but they are surely over 1000 at this point. 
  • She loves playing pretend and can do this pretty much all day. In addition to pretending that she herself is a mommy, ballerina, princess, etc, she also plays with little dolls, making them talk and do things. Her imagination really surprises and impresses me. My favorite thing she does is when she tells me stories about the things her babies or dolls have been doing. She has and can play alone for long periods of time, but prefers a playmate.
  • She loves books and reading and especially loves being read to by her Dad. Her favorite book to ask me to read currently is a Sesame Street book about opposites.
  • The past few weeks she has been writing her name. I have yet to get a picture of it, and she is also being a perfectionist about it. The last time she wrote it perfectly she wrote it in yellow crayon, which I could not get to show up well on my camera. I am watching carefully for its next appearance so I can share. :-)
  • She is also starting to draw humanoid figures, which was recently spurred by watching her friend Oliver draw them. She continues to be very motivated by her peers. Which can be both bad and good, definitely something to pay attention to.
  • She was potty trained around February of this year (also peer motivated by her classmates), and while she will sometimes have an occasional (maybe twice a month) pee accident, she is doing great. The accidents are 100% because she is so absorbed in playing that she doesn't want to stop to pee. She does not need a diaper at night at all.
  • She really seems to understand how families work (think family tree) and understands that Grandma is Mommy's mom, and Kyle is Mommy's brother, etc. It is pretty cool to quiz her and be impressed by what she remembers and understands. Family seems very important to her and she seems to especially have a special bond with her aunts and uncles. It is fun to watch. :-)
  • She has a great sense of direction and can almost always tell where we are going in the car by the landmarks we pass on the way.
  • She is starting to pretend her crayons are makeup. This morning before a playdate I caught her pretending to put makeup on with her crayons. I about died it was so cute. She never (and I do mean never) gets to wear mommy's makeup because I think makeup on little girls is weird, but her desire to wear it is adorable. She also likes having polished toenails and bugs me when hers starts to chip.
  • She loves other little kids and really looks forward to playdates. She is majorly excited for "school" to start in September. She is also beginning a ballet class late next week. 
  • Her favorite food continues to be macaroni and cheese. She is a pretty typical kid as far as her taste in food goes!
  • She continues to be very girly, if it wasn't already obvious to you. I put her in leggings and shirt for a playdate this morning and she insisted on changing into a dress when we got home. 
  • She loves her little brother and thinks he's the coolest. 
We have read her a few children's books about kids with Down syndrome but haven't really come out and told her that Daniel has it yet. I'm not sure how to approach it with her, really, so I am kind of just letting it happen right now. They are both too young for any major differences to be apparent, but I am hoping to start having playdates with more families who have kids with Down syndrome soon, so I'm sure she will eventually ask me in some way. She is very perceptive. She has asked me about people with guide dogs and wheelchairs before so I'm expecting it at some point.

Future attachment parent. :-) Also you can see our new carpet in this picture!
Some funny/cute/interesting things she's been saying/doing lately:
  • "Mommy, can you do me a flavor?" (can you do me a favor) 
  • "When I get big, I'm going to marry Oliver!" (her friend)
  • "Asher (another friend) can come to ballet so he can lift me up!" (apparently this is the only use for male ballet dancers in her mind)
  • Like any toddler, bathroom humor is very appreciated. I'll spare you the details, though if you read my Facebook you might occasionally read some pretty funny anecdotes.
  • "I love baby Daniel so so so so so much! He's so cute!"
To me she looks a lot like her Uncle Kyle. Anyone else think so?

Lily is such a sweet little girl, and blesses me every day. I could not think of a better daughter, granddaughter, or sibling. Like Daniel, we feel so lucky she's ours. :-)

"Therefore I say to you, be not solicitous for your life, what you shall eat, nor for your body, what you shall put on. Is not the life more than the meat: and the body more than the raiment? 
Behold the birds of the air, for they neither sow, nor do they reap, nor gather into barns: and your heavenly Father feedeth them. Are not you of much more value than they?
And which of you by taking thought, can add to his stature by one cubit?
And for raiment why are you solicitous? Consider the lilies of the field, how they grow: they labour not, neither do they spin.
But I say to you, that not even Solomon in all his glory was arrayed as one of these."
Matthew 6:25-29

Friday, August 17, 2012

Daniel Update - 2 month well baby visit

We had Daniel's 2 month well baby visit on Monday. It went really well! At that time he was still hovering just under 12 lbs but I took him to the lactation center to weigh him today and he is quickly approaching 12.5! I am so in love with his precious chunkiness.

Daniel loves his big sister. That is a temporary tattoo on her arm!
 So, the highlights of the visit:
  • Daniel got his second hepB vaccine and his first DTaP vaccine. We are going to catch up with most of the other 2 month vaccines sometime next week or the week after. I am kind of a "middle of the road" vaccine person, in that I don't have a problem with giving them, I just think four or more shots in one visit is a bit too much.
  • We will be taking Daniel to a Developmental/Behavioral Pediatrician in the next few months for an evaluation. You can read more about what these special pediatricians do here (this opens a PDF). It is a bit complicated and long to explain so I'll leave you to read it if you are so inclined. 
  • Daniel's thyroid is actually just fine. I had gotten his newborn thyroid panel and freaked out comparing it to the normal adult levels I found online. Then I found the actual levels for newborns. And he's fine. We'll check it again when he is one year old. 
  • His ears still look good. 
  • Daniel is going to start a new vitamin made specifically for individuals with Down syndrome, called Nutrivene-D. There are extremely positive and other negative reviews about this supplement out there, but we're just looking at it as a multivitamin and not expecting miracles. I waited to give it to him until I ran it by his doctor, and now that we have the all clear he'll be starting it this weekend. I only ever gave Lily vitamin D drops when she was a baby, so the concept of a specialized vitamin for a little baby is a little foreign to me, but I'm willing to give it a try. Many other people have such good things to say about it.
  • Since Daniel is feeding so very well, his doctor said it was fine to start speech therapy when he's around six months old and starts eating solids. He shouldn't need it before then. He's making the typical baby noises right on time, so there isn't a concern there currently.
Doing therapy on the couch. We are trying to get him to hold items with both hands in front of him. Laying him on his side to practice helps build up his strength. :-) He has also started bringing the toy to his mouth which is great.

 Probably the best news of the visit is that so far he is right on track or even advanced as far as baby milestones go. The very few items I ticked "no" to on the 2 month evaluation form (I filled these out for Lily too) he has started doing within the past few days. It is normal even for a typical baby to not be able to answer "yes" to every question. But if I had scheduled the well visit today instead of Monday I could have! Very good signs all around. And we are so thankful.

Sometimes big sisters decide that we need a little bling.
We would so appreciate your continued prayers that Daniel continues to do well! Thank you!

Precious one.
"Bless our God, you peoples;
loudly sound his praise,
Who has kept us alive
and not allowed our feet to slip."
Psalms 66: 8&9

Saturday, August 11, 2012

Daniel is Two Months!

Sweet angel. You can see a blurry Lily in the background.
Just wanted to make a quick update. Daniel was two months old yesterday! I had planned on posting last night, but I was struck down with a 101.1 fever that I think was caused by a mild case of mastitis. I am feeling much better this evening.

Sleeping elevated due to reflux.
We took Daniel to the doctor today to get his ears and lungs checked after the cold/allergies (I really wasn't sure which, but since babies rarely have environmental allergies, I am leaning on the side of cold) we all had last week. Luckily both ears and lungs are looking good! He also got started on a low dose of Zantac for what seems to be mild-moderate acid reflux. On Thursday it had gotten bad enough that he was crying when he was nursing, so it was time for medication.

Getting big!!!
We also found out that Daniel is weighing in at just under 12 lbs now (exactly the same as Lily at 2 months)! Another week or so and he will be into size 2 diapers and 3-6 month clothing. I feel like this is going too fast for me.

You can really see his one blue eye and one brown eye in this pic.
He hasn't hit any more major milestones, but he is getting better at ones he has already reached. Mastery is good! He is the smiliest baby ever! I am trying to get pictures of it, but that's easier said than done. He smiles very socially and not randomly, so it is hard to get him to smile if he can't see me smiling back at him since the camera is blocking my face. He is also VERY vocal, even more so than Lily was, making "ooh, ah, gah, goo" baby sounds. It is SO CUTE I can't even take it. I might try to get a video of it this week sometime.

Daniel is also starting to reach more at things above him when he is laying down and has brought toys to his mouth a few times. This is an important milestone, as it means he will eventually be strong enough to hold things with both hands in front of him. This milestone is called "bringing hands to midline" and you can read more about it here. This is the main thing we are working on with Daniel right now and he seems to be in the beginning stages of it, so that is a good sign.

He has had a brief attention span for toys for a while, but has really started being interested in them more this week.
To those mamas and mamas-to-be friends of mine reading this, all of these milestones are totally instinctive for typical babies and you don't have to worry about it unless they start getting behind. For instance, I definitely didn't do all the recommended things the books tell you to do to help the baby achieve milestones with Lily. I took a much more holistic approach and just let her do her thing while providing an enriching environment, and she did great. She is even advanced in a few areas, and the best part is that it is all on her own. For instance, she basically potty trained herself (I know I should shut up now). But if you want your baby to be a super overachiever I can show you my physical therapy books sometime. :-)

I will probably have a bigger medical-ish update on Monday after his 2 month well baby appointment. We could have consolidated the appointments yesterday but I had so much that I wanted to ask our pediatrician at his well baby exam that I didn't want to take up that time with a sick visit. Hope you all are healthy and happy!

Hey, whatchoo lookin' at?

Monday, August 6, 2012

Just the facts, Ma'am.

The past week has been pretty blissfully boring. Some things to share: Daniel is now over 11 lbs, and the figs on the tree in our back garden are ripening. :-) Carpet install is next week. Lily's "makeup party" with friends is tomorrow.

 Since I didn't have much else to write about, I wanted to share some statistics with you. If you have time, I'd like you to fully absorb and appreciate each statistic before you move on to the next one.


1 out of every 691 babies born in the USA are born with Down syndrome.

80% of these children are born to women under 35 years of age.

The average age of a mother who gives birth to a baby with Down syndrome is age 28 (my age).

After being surveyed:

79% of parents or guardians of children with Down syndrome reported their outlook on life had become more positive as a result of raising their child with DS.

Among siblings ages 12 and older, 97% expressed feelings of pride about their brother or sister with Down syndrome, and 88% were convinced they were better people because of their sibling with Down syndrome.

Of individuals with Down syndrome:

99% responded they were happy with their lives.

97% liked who they are.

96% liked how they looked.

Parents of children with Down syndrome have a lower divorce rate than parents of children with no disabilities, and much lower than parents of children with disabilities other than DS. Yes, you read that right, no it is not a typo.

Despite all this good news:

80-90% of babies diagnosed prenatally with Down syndrome are aborted.

It blows my mind that some people consider babies like Daniel their "worst case scenario."

"You formed my inmost being; you knit me in my mother’s womb. I praise you, because I am wonderfully made; wonderful are your works!" 
Psalm 139:13-14