A handful of frustration and irritation, but a healthy dose of milestones!

Sometimes I could kick myself for not writing down the things that I actually want to blog about.  I think of all the wonderful things while I'm alone, shopping, cleaning house...things that irritate the hell out of me or things that bring tears to my eyes.  One day I'll learn to keep a running list of "things".  This week has been a week of irritation.  There is no justification as to why, it just is what it is.  My list is chronicled below and some of you moms may say, "Hey, that bitch is talking about me!".  Oh well.

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.

 I'm off to eat a piece of fried chicken.  Because I can, and because I'm pissy.  Maybe I'll even wash it down with a cold Miller Lite.  It's 5:00 somewhere, right?

It's that time again!

Ok...well first let me start by saying I drafted this entry like three weeks ago and I never posted...we have had such a busy summer and the past few weeks have gotten away from me.  I can VERY, VERY, VERY happily say that all of Emily's doctors visits are pretty much done for a while (except for endocrine which is next week) and we will actually have some time to catch our breath and enjoy the kids without shuffling them all over town.

Over the past few weeks, we've spent some glorious time at the Mehlinger beach house for the second time this summer.  It was really sad to leave this time because we're not returning until October (such a hard life, right!?).  The trips with our families this summer have been some of the best of our lives.  So. much. fun.  My waist line and liver can attest to that.   Sometimes, I regret when I stopped pumping.  I was literally pumping away the pounds.  I got nice and skinny for about one month.  I could eat and drink whatever I wanted and it didn't matter.  Oh, the days.  Now, it's back to watching what I'm eating (kinda if I'm gonna be truthful) and drinking (unless I succumb to peer pressure, which usually happens).

Lilly actually learned to swim this summer, with the help of a life vest, but hey...it's a start and she had a blast doing it!!  I am going to get her to my mom's pool everyday next week after nap to wear her out!  Emily is also a water-lover which is why we are really eager to get her into aquatic therapy.  Hopefully, once we get Medicaid, we can get her into that.  Our primary insurance doesn't cover it and we are not in any position to pay for it out of pocket at this point in time.  Both girls had a blast swimming with their cousin, Maggie and of course, all their grandmas and grandpas.

Lilly and Emily splashing around :)

Maggie and Lilly "sharing".  This basically consisted of Lilly giving Maggie toys and then taking them away.

PLEASE ignore my toenails.  This was the only bad part of our trip...I broke my pinki toe and then dropped a beer bottle on my big toe :(

Having a blast!!

Catching a few ZZZZZ's on the beach.

Lilly is gearing up for school is September and I think we're all pretty excited about it.  She has had a lot of fun lately reading books and I've actually channeled my inner Pinterest mom and gotten some arts and crafts ideas from there for Lilly to do.  I've said it a million times, but she really does thrive on structure and there hasn't been too much of that around here in the last four months.  Her behavior, as most of you have read, has kinda gotta out of control and we are totally to blame.  She has had a ton of adjustment in the last four months with moving, Emily's surgery, constant doctor appointments, a new house, no school and being shuffled around town when Emily's needs must be met.  I've started making her sit again in the high chair and put the timer on her to eat dinner.  She would drag it out for 30 minutes with only one chicken nugget eaten.  I've put her to bed many times without dinner and she hasn't died yet from starvation, so I guess I'll keep at it.  She hasn't been allowed snacks anymore either (except at the designated times of 10am and 3:30pm).  Her behavior has improved and she's learning to go to  her room on her own when she's about to have a meltdown or doesn't like my answer to something she wants.  Ohhh, the joys of (almost) three year olds. 

In the month of June, we also visited Lilly's BFF, Elloree and they had the best time ever.  I literally had a smile plastered on my face the entire time because they played so hard together.

Emily is continuing to make great progress in her physical therapy, and really, every other aspect of life.   She definitely doesn't like it when she's given a challenge, but one day, she'll realize that challenges will be thrown her way on a daily basis and she must work to overcome them.  Her biggest accomplishment this week was ROLLING OVER from back to front.  When she got done and we all shouted and praised her, she gave us the biggest smile in return.  We did it over and over until she got, well, pissed!  We're also working on getting her to sit up and she's doing quite well.  She actually does better without the assistance of the Boppy because it allows her to scoot down and lay back for a little R&R.  Our therapist also said not to allow too much time in the Bumbo because it doesn't really promote good posture.  It allows her to slump down.  We still use it and she actually has gotten much better in just the past week about not slumping forward.  She's really using her core to attempt to sit up.

In the past few weeks, Emily has seen the ENT for her ears and as expected, she has fluid in her ears.  She also did not do well on her hearing test, so we will go back in 6 weeks for a reevaluation and determine if she needs tubes.  We also went to the eye doctor and she checked out perfectly for her vision.  She does have clogged tear ducts which makes her eyes constantly water.  Sometimes, if she gets really, really mad she cries tears of blood, literally.  It's all part of those clogged ducts.  We also go back there in 2 months to see if they are any better.  If not, she will have to have surgery on them to repair the ducts.  This is all very common for those with DS.  Emily also got her 6 month shots  and DID NOT like those.  She cried as soon as she saw the nurse tear open the rubbing alcohol.  It was only temporary and she cried so hard she knocked herself out in a matter of minutes.  The best part of this visit was that she has indeed gotten bigger, which was already evident from her growing out of 3 month clothing.  She weighed in at a porky 13.6 pounds!  She's actually in the 25% percentile for her weight (on the DS scale).  Yay! 

Speaking of Emily, we are ASTOUNDED at the amount of money raised already for the Buddy Walk!  I cannot believe how generous you all have been thus far.  Please don't forget to also walk with us.  We want everyone to actually come to the park and walk.  We have designed our t-shirts and I'll have them posted next month for you all to order if you're walking, or if you just simply want one.  This walk will be a family and friends event from now on since the proceeds go to help educate, advocate, and promote awareness of Down syndrome.

We are also working diligently of completing her Katie Beckett application and it's driving me crazy!  I cannot believe how much paperwork it entails.   They literally need every single financial statement and medical record in the history of Earth for her to be approved.  We have worked for several hours on a daily basis and as soon as we get our medical records, we can put it all together and submit it.  Hopefully, we will get accepted the first time and we won't have to resubmit.  By getting this, we will not have the enormous medical bills to pay anymore.  It really sucks because we have to fight so hard for something that Emily never had a choice about.  She was born with this disability and there was nothing we could have done to prevent it.  It just sucks that we have to go through all this.

Alrighty-for now, I'm signing off.  Time for dinner!  Until later...