Friday, June 15, 2012

Lifes Little Surprises: Breaking Stereotypes

Lifes Little Surprises: Breaking Stereotype

This blog post is excellent and highlights WHY you shouldn't assume our kids will always be happy individuals. To say that dehumanizes them. As a baby, Wes has already displayed a wide array of emotions including frustration, sadness, shock, contentment, and yes, happiness.

If you have a typical child - look at him or her. Wes and others with Ds have the same emotions as your child. Period.

Don't give in to stereotypes.

Huffington Post Article

Thursday, June 14, 2012

In case you didn't know...


My kid is pretty freaking aWESome!

Thank you IDSC For Life for including Wes in your campaign!

You know what? The folks at the IDSC are right... A DS diagnosis isn't the end at all! Until the diagnosis, I had no goals in life; nothing that made me excited or empower me to help others to the extent I do now. Wes' diagnosis was, in my eyes, a gift. This may sound a little selfish, but I wished for an amazing kid like him. A child to bring purpose to my life. I now know what my purpose is in life; to advocate for my son and his friends in the DS community. 

He is aWESome, don't you agree?
<3

Wednesday, June 13, 2012

Sign language

So, I've been putting off sign language since it's highly inconvenient to ask my child if he wants a bottle while holding him, or remember to refer to either of us using sign because Wes is so consumed by his toys that when I "bring it up", he's so not on the same wavelength. {sorry in advance for my run-on sentence}

So, here's our mini goals...








 



Ok, so this post was to put some accountability on myself. So, if you see me, make sure I'm signing like a beast. {"I must not be a lazy mom." "I must not be a lazy mom."}

Tuesday, June 12, 2012

CHOP Growth Study

I recently signed Wes up to be a part of the Children's Hospital of Philadelphia (CHOP) Growing Up Study. The goal of this study is to create new growth charts for children with Down syndrome since the old charts are rather outdated. The study has been around for the past 3 years and is in its fourth and final year. If you live in the Philadelphia region, "stand up and be counted!"

Anyway, today was our first of four visits for Wes to be measured. Out of the 560 kids in the study, Wes is the smallest. Waynitra, the project coordinator for the study, was amazing with Wes! She just adored him, but I'm not gonna lie - little man was hating every second of it. As usual, he didn't cry much, but man did he give us the stink eye!

To participate in the study, your child needs to be between 0-20 years old. It only takes about 10-15 minutes, four times per year even though it says an hour on the informational sheet. At each visit someone  asks questions about behavior and current health, and measures the following three times:

  • Head to rump length
  • Head to foot length
  • Full arm length
  • Upper arm length
  • Upper arm width
  • Head width
  • Fat on upper bicep
  • Fat on upper tricep
  • Fat on back
  • Weight
In conversation with Waynitra about what they've found so far, they've noticed that the kids the the study have been thinner and taller than what has been typically found in the general population. What she thinks are factors are education level in parents in the region (knowledgeable about Ds - i.e. potential thyroid issues caught earlier, knowledgeable about potential health concerns before they occur) and higher SES (access to healthier foods and athletics).

If you happen to live in the Philadelphia area and have 4 times out of a year to participate in the study, make sure to do so! They'll compensate you for your time ($25 + $5 Target card) which is helpful for diapers, gas money, etc. LOL! What's even better is that you're helping your fellow friends in the Down syndrome community.  

Of course... happy baby picture!


Monday, June 11, 2012

Bottles {suck} - no pun intended

Ok, this whole feeding debacle is driving me nuts, and my kid is what, 6 weeks old!?  Granted little man is gaining weight, but he's still the weight of many, many newborns. Like, not 6 weeks old newborns; newborn, newborns.

In any event, there was a lot of testing with bottles that claim to be "the best bottle" to reduce gas,spit-up, gagging, choking, etc. So, if you're expecting a baby, Down syndrome or not, make sure to buy several different bottles. Better yet, ask friends to loan you one of their bottles to test out or buy the single bottles at the store. Granted, they may cost $5 each, but it's better than having a gift bag full of unused "flop" bottles like I have. If you haven't picked up on my thriftiness attitude by now, I really, really hate wasting money.

If you still want to registers for bottles, that's fine. But still buy the single bottle as well in the event you need to return them.  Oh, and just because you intend to breastfeed, doesn't mean you will. Trust me, I didn't want to hear it either. Sorry to burst your bubble, but there is a good possibility it won't happen or it won't be "easy". Not that breastfeeding is easy per se, but for some, like me, it was a chore. No, it was a flipping nightmare.

Anyway, here's my experience from birth til now...


This premixed 2oz bottle along with slow flow (teal) "disposable" nipple {Do not throw out!! The companies lie when they say "one time use"} was the first exposure to eating Wes had.  He does extremely well on this bottle/ nipple combination STILL, and will even drink consistently with the regular flow nipple, either Enfamil (blue) or Similac (clear - not pictured) brand. The con - they're expensive, so as soon as I run out, I am not getting anymore unless covered by WIC. {Oh yes, I get WIC with Wes' diagnosis in Pennsylvania for the first year. Bet you didn't know that? EXTREMELY helpful, so check with your state!!! In my state, income doesn't matter.}






2oz Snappies and 3oz Medela breast milk collection bottles are fantastic! I used them with both breast milk and formula and Wes responds great to them. I use the cheap hospital nipples (see up^) with them and it's perfect. I think it's because they hold little air and they're also easy to hold, especially with the odd way I need to feed the beast.



Tommee Tippee - anti-colic were a total bust. Wes didn't want to breastfeed, and these bottles are shaped to mimic the breast. He's no dummy, so when I introduced him to these, he freaked. Needless to say, these are the bottles that are hanging out in a gift bag.

However, the sterilizer is amazing! Just 4 minutes in the microwave and voila! Love, love, love it! But, don't expect to get anything taller than a 6oz Playtex vented bottle in it.




Just gonna say it - the most expensive POS' out on the market today. My kid hated them, my friend's "typical" kid hated them. Not worth the money unless you have the pump that automatically comes with bottles. The caps are great, I will give it that.


The Dr. Brown's had the same reaction as the Medela bottles, but worse due to the number of parts involves and the INCREASE in gas Wes experienced. I'm so glad I just bought one test bottle because they're horrible for him. If we do use them, we do not use the bangs and whistles in the bottle nor the nipple. We actually will put the chap Enfamil or Similac nipples on them.




These Playtex VentAire bottles are amazing. They work for the way we need to feed Wes, plus any bubbles that are in the bottle release out of the bottom vent holes.  And you know what? When I am low on formula and know that Wes can keep going, I have John put more formula in the bottle by taking off the bottom cap and filling it up. Ahhh mazing.




I really wanted to love the Playtex Drop-Ins, but they didn't work for Wes. I think it was due to the nipple, but since Wes only likes the "brown nipples", they are a fail. Plus, if you use powder formula, these are a bust. When you shake the bottle, bubbles form in the formula that just won't go away even if you push the air out of the bag. I really wanted Wes to respond to these because they're good for the tongue movement in children with Down syndrome.

In the end, Wes responds best to the 2-3oz breast milk bottles (Snappies & Medela) and Playtex VentAire with those cheap hospital nipples (Enfamil & Similac) due to the fact that all of the excess air is vented out the bottom. Plus, I am able to add more formula to the bottle if necessary mid-feeding. Honestly, Wes just looooves those cheap brown nipples, so any bottle that holds them will do. Since Wes has low muscle tone and we have to feed him lying down, these angled bottles are fantastic. Right now we're working on having him eat at a 45 degree angle for the first part of feeding as to not overly tire the baby boy out. 

Lesson to you - do not get rid of ANYTHING and make sure to borrow from others. It will save you tons of money!


Saturday, June 9, 2012

Great Grandparents

Wes finally met his great grandparents this past weekend. Those of you who've read my Wordpress blog will remember John's grandmother; the one who wrote amazing letters!

Wes' great granddad and great grandma absolutely adore him! His grandmother was always willing to take him off my hands, and I was happy to share my little boy with his family.