Teething Hell

If you're friends with me on facebook, you might have noticed my status today said "My child is a napping disaster. Apparently there is something evil about teething because I'm pretty sure we're going to have to perform an exorcism to get her to sleep."

And that about sums up my day.

Well, there was no exorcism, but luckily with some motrin, and some homemade organic blueberry yogurt popsicles (thanks for the idea Mama Dub over at Life in the Dub Lane) Lillian made it through the day even without naps and a physical therapy session with her new ankle foot orthotics. I'm pretty sure Lillian's crying nearly brought the PT to tears because it's the first time she's actually cried for her rather than fussed, and it nearly broke both our hearts.

I tried to take a picture of her two new shiny TOP teeth but I got this instead...yes, she's licking the camera

And why am I not surprised her top teeth came in first?  She really likes to be different.

Other than this teething hell, many new developments have been happening with Lillian.  She is  ::THISCLOSE:: to crawling.  She crawls backwards (still) and can go from laying down to sitting up.  She can go from sitting up to laying down.  She can turn in circles, roll, and back up wherever she is... but no forward crawling.  It's coming.

She plays music on her drums and expects us to dance to it. If we don't dance she doesn't laugh, and well... that's just not fun.  We like to amuse her so we dance. When the music stops we say "UH OH" and she laughs hysterically then plays the drums to make us dance again.  We are officially her puppets.

She's pretty much mastered the straw cup.  She's also managed to take 100% of her feedings by mouth most days.  The days she doesn't is probably our fault (and by "our" I mean Phil's) by not being patient enough to try again later. (Ok, I'll give him some credit, he is just trying to get to work on time and let me sleep in.)

She's on the move so much it's nearly impossible to change her diaper.  It probably looks about the same as lassowing a calf.  I'll admit I don't know much about calfs, but I do have a pretty adorable cowgirl :).

I'm sure there's more that I'm leaving out.  We're getting her 2nd Early Intervention evaluation sometime in the next month or so, and they will rate her development on a chart.  Not that those stupid charts mean a whole lot, but it does put her progress into perspective.

Next month is also a big month for us because not only is it Lillian's 1st BIRTHDAY (which will be celebrated with a Goldfish themed party!!! - details to come soon) but we are also going to Washington D.C. to attend the Annual Foundation for Prader Willi Research Conference.  I'm beyond excited to meet so many other great proactive families and their amazing kids.  Beyond excited.  I've met a handful of families with children that have PWS, but they were all older and had not received the same type of early intervention Lillian has received. I'm looking forward to meeting some more children close to her age that have been treated from early diagnoses.

Oh and, remember that garden I blogged about?  I found out the vegetables will keep growing even if you neglect to pick them in time.

You could even end up with squash and zucchini the size of a 10 month old baby

So to end this blog with more random ramblings, this song has been stuck in my head for two weeks.  The funny thing is, only in the middle of the night have I been able to remember the words.  At 3am when Lillian moves her pinky and I hear the monitor and wake up, or my bladder tells me to wake up first... I can't get this song out of my head. 

Finally today I remembered enough words to google it.  And here you have it.

Matt Redman - You Never Let GO lyrics | LyricsMode.com


"Oh no, You never let go

Through the calm and through the storm

Oh no, You never let go

In every high and every low

Oh no, You never let go

Lord, You never let go of me"

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Mommy Favorites

Now that I'm about 10 months in to this mommy thing, I've definitely started to favor some products.  I always love to see what everyone else is enjoying so here's a list of some of mine. (Click on the linkys for more info, and no, I'm not getting compensated for this!)

Kiwi Magazine - I might not be the most eco-friendly "green" momma around, but we do cloth diaper, feed Lillian organic foods, and TRY to keep things as natural as possible.  I love this magazine because the articles relate to the things I'm curious about and they also have some really yummy recipes listed.

Yobaby yogurt - Ok, so maybe this is one of Lillian's favorites, but that makes it my favorite too :).  She absolutely loves this yogurt.  I typically buy the plain kind and then either give it to her plain or mix in some pureed fruits and/or vegetables.  She seriously loves this stuff. I even get the mmmmmm yummm noises from her when she eats it!  Plus it's loaded with protein, low on sugar, and it's generally healthy.

Little Tikes 5-in-1 adjustable gym- This thing is awesome.  I wish I would have gotten it sooner, because you can use it all the way from infant to 36 months.  Lillian pushes the buttons and then claps to herself when they make the noise.  She can even sit on the little bench and "finger paint" (with veggie purees) on the easel. It gets two mommy thumbs up! (click through all the pics on the link to see what all you can use the toy for)

Naps - OK so that's not a product, but it makes my list of favorite things.  Lillian's currently napping in her crib while I watch her on the monitor and catch up on blogging while doing the laundry and eating lunch... ahhhh, multi-tasking at it's finest.

Happy Baby baby food - We can't always have homemade baby food on hand.  We do a lot of running around and sometimes I just need to throw a few Happy Baby puree packets into the bag and go.  I also LOOOOVE their yogurt melts.  For a baby that's learning to chew they are fantabulous. They melt faster than puffs, they're organic, healthy, and really tasty.  I've been known to eat a few. (They also have organic puffs, we use the green puffs that are made with spinach and kale.  Lillian enjoys chewing on those too)

Clip on battery operated fans - It's currently 90+ degrees outside and so humid you could drink the air with a straw. It's been like that all summer long. My child doesn't over heat because we have about 5 of these things.  We clip them to her stroller, car seat, picnic table, swings, anywhere we're outside.  Because of PWS she has a hard time regulating her body temperature, and these have really saved us from being cooped up inside all summer. (I got mine at CVS for $5 each)

Boogie Wipes - Oh do I love Boogie Wipes.  We use them to wipe the gunk out of her eyes, the crusty milk off her face, avocado off her hands, and just about anything else.  These wipes are made with a natural saline solution with vitamin E and aloe added in so they are soft on their skin and don't irritate the eyes. They tend to be pretty expensive, but I've found them at Sam's Club for $4.99 a 4 pack (almost the same price as 1 pack at the grocery store).  Lillian really likes them too.  My kid is strange in the fact that she LIKES to have her face wiped off...

Rubbermaid Juice Box - We don't give Lillian juice, but since she hasn't mastered the sippy cup, this thing has really been great.  She already knows how to suck on the straw, and all it takes is a tiny squeeze to push the water or formula up the straw and into her mouth if she needs some help getting it started.  She prefers it to her bottle.  The down side is it can be a little messy at times, but what isn't messy with a 10 month old baby?!

Kashi GOLEAN Crunchy! Bars - According to the package these bars are designed for optimized glycemic response with slow release carbs, and protein and fiber to keep you satisfied.  I like them because they're so tasty.  Feeding Lillian takes SO much time, and when we're on the go I would rather eat one of these to keep myself satisfied than become hangry (hungry+angry). I also buy these at Sam's club in a giant variety pack.

Lillian's waking up now and it's time for us to get out of the house and enjoy some sunshine.  You might have noticed my blog looks a lot different now.  It's a HUGE pain in the butt for me to change/fix, so if anyone wants to practice their skills on making a blog header... let me know ;-).  You can practice on mine!

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Living with Prader-Willi Syndrome

And this is why I don't sleep at night. 


Hungry: Living with Prader-Willi Syndrome - By Maisie Crow from liveBooks on Vimeo.


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OH, HEY!

Yeah, so it's been one of those months where I'm like, oh wait a minute, I have a blog! ::slaps forehead::

Of course I didn't really forget that I have a blog, but we've been so insanely busy that every week that goes by without a blog entry I dread how much I have to catch up on.  So in short - we were really busy.

But we did do a little bit of this -

4th of July Parade on vacation in Flagstaff, AZ

A side trip to the Grand Canyon

A family camping trip in Indiana to celebrate Father's Day and Phil's Birthday

Hanging out with cousins

A couple weddings and receptions

And a trip to the Cincinnati Zoo with the ladies and babies from Transatlantic Blonde and Mookitten

Oh, and we also celebrated our 3rd wedding anniversary.  It's been a great time getting to travel and celebrate weddings/birthdays/anniversaries with everyone.  We're happy to be home now and back to our regularly scheduled program.

I've also managed to have 3 weeks of meeting with a therapist to get some things off my chest (in between traveling).  Mainly just talking about the changes we've had to go through with Lillian's special needs... the anxiety that comes with her future having PWS.  It's been nice talking to someone that really seems to "get it".  The therapist I see has also had some interesting things happen in her life that somehow help her understand what we're going through.  It's really been a blessing. 

Lillian is really doing great.  Her energy is picking up and she gets stronger every day.  She's learned to blow raspberries and says dadada more regularly now.  She's such a joy in our lives! 

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Getting Real

Let's get real for a second, K?  If you don't hear from me for a week, or all I seem to post about is crafting and gardening, prepare for the "after the freak out" blog post.  I know I've mentioned before that blogging and crafting is my "therapy" but seriously, it's not cutting it.  Let me explain with some random thoughts I've had in the past few days/weeks.

* Everything food related makes me think about PWS.  Grocery shopping, eating, cooking, watching people eat, smelling food, thinking about food, reading about food, seeing food on T.V., you get the point.

This sucks.  I'm not really a fan of dwelling on depressing thoughts and honestly, thinking about the food issues that Lillian is facing in the future really freaking stresses me out.  Every time I put her in the grocery cart to do my grocery shopping I wonder when it will be the last time.  One day I'm going to have to decide it's time to stop taking her.  When should that start?  I have no freaking idea. Do I do it soon? Do I wait until she has food seeking issues?  Is there even a *right* way to go about this?  Am I over thinking it? ugh.

* I have way too many responsibilities.  I'm with Lillian for all 5 of her therapies every week.  Around 20 per month.  That's not including the doctor appointments I take her to and the countless emails I send to various medical professionals just to keep things on track.  I pick up her prescriptions, decide what supplements to start, when, and how much.  Struggle to get her to eat enough by mouth every single day without feeling like I'm forcing her to eat when she doesn't want to (we still use her g-tube but we've got her to take almost all feedings by mouth each day this week). 

She's making amazing progress and I see how much she wants to get stronger and do more.  It gets me through each day... but at some point towards the end of the week I'm near a nervous breakdown. This past week I was so exhausted and tired of taking care of Lillian by myself (Phil had night meetings, softball games, and went to the gym several nights on top of working full time) I nearly went crazy.  For real.  I told Phil I was going to leave him and Lillian and let him figure out how to do everything by himself just so he would know how I felt. And I was SO serious.  I'm not talking about *leaving* him.  I'm not that crazy, but I was really thinking about getting in the car, driving until I felt like stopping, and not coming back for a week.  Thankfully after a much needed day on the lake Sunday with my best friend and a few margaritas (which was suggested by my husband) I was feeling like myself again.  But it still freaks me out to know I was *thisclose* to walking out.  I just want him to realize how stressful it is to have everything resting on my shoulders.  I would never leave him or Lillian, but I would sure leave him WITH her to figure things out because I'm so sick of being the one to always keep track of everything.

*Which leads me to - I nearly have an anxiety attack if Lillian is with anyone other than myself or Phil for more than a couple hours.  The nursery at church was ok because I was there, but Friday we left Lillian with Phil's parents and allowed them to take her out to dinner.  I've left her with his mom before, but that was in the comfort of their home.  She's never been in the car with someone other than the two of us and the entire time we were gone I was terrified that they would get in a wreck, or they would let strangers say mean things to her (I hate comments like "my she's chubby"), or they would let her put dirty stuff in her mouth or God forbid feed her something other than the food we gave them.  I'm stressing out again just thinking about it and this was 5 days ago.

* I'm starting to wonder if I really need therapy or medication.  Just typing that makes me cringe.  Not that there's anything wrong with those two things, but I really thought I could handle all of this.  For the past 9 months I've been against medication because this is my LIFE.  This isn't a bad break up or a traumatizing experience that I'll get over one day.  This is my life. Every day.  So the thought was I would just have to figure out how to deal with it.  Based on this blog post you can see I'm not doing a great job of "dealing with it".  I don't want to be medicated forever and I wonder how I'll ever learn to cope with life if I try to put a band aid on it by using medication.... but I'm at the end of my rope and rather than go crazy out of my mind I'm really starting to think medication is not such a bad idea.  And therapy.  I contacted a therapist yesterday and when she told me she wasn't accepting new clients.... let's just say I convinced her she needed to.  So we start next Thursday.  I'm not sure how this is supposed to help, because it's not like she can come over and clean my house and cook dinner (which would be the help I need), but I'm hoping she can at least offer some advice on ways to cope and maybe avoid medication, or prescribe the right kind of medication so I don't lose who I am while I'm taking it.

So um, there it is.  My post-freak-out-blog-post. Did I mention that over the next 3 weeks we're traveling with my in-laws on THREE different vacations?  Be prepared to see a lot of crafting and gardening posts ;-).

And whoever offered the advice about my etsy shop and the photos with the "busy" backgrounds, thanks!  I appreciate the advice.  I'm hoping Lillian might let me use her beautiful head as a model sometime... but since she's become so mobile (squeeee) it's getting harder these days. 

That girl really is the best thing that's ever happened to me.  I know I just wrote an entire blog post about how stressful life is, but she makes everything worth it.  She has made my life better than it's ever been and I love to watch her discover the world around her every day. 

This week she finally made sounds other than vowels.  We got some N's, D's, M's and G's.  All in one week!!!!

Today we were without electricity due to the nasty storms that have blown through here the last 2 days (it's back on now), so we went to get some coffee and walked across the street from the cafe to the library.  She loved it. (sorry for the crappy cell phone pics)

And this is how mommy gets her therapy without involving office visits....

Hope you all have a great week!



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