Irritation of the week # 1: I ran across information overload this week which pissed me off from the get-go. I became a part of some Facebook groups just for moms of kids with DS. They are WONDERFUL to be apart, as long as you don't read every single link posted. You see, these links lead the already worried mother to read more pages filled with more worrisome information that causes you to lose sleep overnight. My most recent information overload came from researching nutrition and supplements for those with DS. Holy cow. There are some mega vitamins out there that supposedly help with all kids of issues that those with DS have, and of course, there are positive and negative comments about them all. I have never been one to supplement with vitamins, besides the Women's Day stuff, but all the other crap...I just don't believe in. I can ASSURE you that my grandmother did not take fish oils when she was 5 to help with whatever it helps with. And to this date, she is slightly more energetic than I am. I also don't sprinkle Emily's food with flax seed or any other seedy material. She shits more than me and all bowels are a go. However, with that rant, it does leave me to wonder if these vitamins can "help" Emily become "smarter", because, come on, we want her to be high functioning, right! Doesn't every parent with a special needs kid want that! Or, just a regular ol' kid. Hell, I think Lilly is gifted and talented, but of course, that's the motherly bias there. Lilly eats fruit snacks (aka, little chewy figures made purely of sugar), she could out-drink anyone in an orange juice drinking contest, she loves canned Spaghettios, and eats organic only when it's on sale or I shop at the Mehlinger grocery store AND gasp! she watches the Hannah Potty Movie sometimes three times in a row just so I can empty the dishwasher. There. Bad mom.
Ok, as I continue researching I am left reading endless articles about DS people needing to eat gluten free diets and having milk allergies. No ice cream? No cheese? These are staples in our house! I am left with the extreme guilty feeling of needing to change Lilly's diet because by the time Emily can eat unassisted, she will have to eat a more nutritious diet. Not only is this due to potential "allergies", but she has hypothyroidism which will naturally lead to her having a weight struggle her entire life. She's not going to be 5'6, so all the extra weight will spread evenly through those cute, chubby arms, legs, and already robust midsection! That midsection is already causing me issues. She can wear 3-6 month pants in length, but boy oh boy, that belly is losing circulation. What's a girl to do?
Irritation of the weeks # 2: An over-the-top-you-have-too-much-time-on-your-hands mom posted a picture on one of my DS pages of her child's "play area" at her house. And. there.were.a.lot.of.toys. She said she ran across several articles stating that babies with DS need a large variety of new toys to help with stimulation because they are "tools for development", or can be therapeutic. So basically, what this does to a mom (me) that's already irritated makes me look at all my toys and want to run over them with my car. Don't use the Bumbo. It doesn't promote good core strength. Don't let them lay too long on the play mat. Flat heads. Don't carry her on the hip. We definitely don't want her to become anymore bow-legged. Negative Nancy over here, I know, but hey, sometimes it's just that way. I did come across a great little file that contained wonderful information about specific toys for those with DS.
http://www.btha.co.uk/wp-content/uploads/2012/10/DOWNSSYNDROME.pdf
It's good stuff. Now, with this all said, I spent entirely too long at Buy Buy Baby recently looking at every single baby toy ever made and wanted to instantly buy them all. For that gifted and talented stuff, right? Sometimes, having to buy special toys and constantly have to worry about stimulating your child in the best way possible takes all the fun out of actually playing. It makes it a chore, which it should not be. Lilly can play baby all day long. I know we'll get to that point one day, but I can only help but think in the now. We never said raising Emily would be easy, and this is just one small hurdle we must jump over.
Positive Patty #1: When I think I'm having even a REMOTELY bad day, I think about everything we/she/the entire family has already been through and all that negative thinking is just a walk in the park. It's actually really hard to remember the days of the feeding pump, worrying about picking her up due to her incision, and surgery...I can hardly remember. It's a good thing I have a million pictures to look back on. The feeding pump was by far the very hardest part of raising Emily so far. Yes, the surgery was difficult, but she was comfortable and relaxed with all those happy drugs. The aftermath was what hit her hard. The Enfaport was the most disgusting formula in the entire world, and Emmie certainly let us know. Almost every time she ate, she projectile threw up the entire bottle. Some days, I knew it would just be easier to lay her down, hook up the pump, and let the milk drip into her belly. The pump was only for the night though and I didn't want her to forget how to suck from a bottle. THOSE days were hard. So on days like this, when no one, for no particular reason is pissing me off, I remind myself of those days and take a step back.
Milestone # 1: Sweet, sweet, sweet rolling over!!! Emily is a rolling machine. Front to back, back to front and over, and over, and over again. She turned 8 months old this past week and I never thought this day would come. Slowly but surely, progress is being made. Her core is strengthening and she's thinking about sitting up alone. My goal is by next week when PT comes, she can sit alone for at least 10-15 seconds. Goal.
 |
| From this....newborn.... |
 |
| To this...post surgery... |
 |
| And right back at it....she's a damn miracle. |
No comments:
Post a Comment