A Healthier Stronger Me

Since I do all the grocery shopping and prepare the majority of our meals, I guess the buck on healthier eating stops here. I don't want to own up to that...ever...but I must! It isn't easy trying to make lifestyle changes when your life is constantly...well...changing. Everyday is a little different than the day before and tomorrow will be different from today. Sure some things are pretty much a guarantee like PT on Monday, ST on Tuesday, OT on Wednesday, and a second session of ST on Thursday. Fortunately, two of these session are in our home, but our PT is allergic to cats and we have three so that comes with it's own uphill battle (seriously, I chase hairballs around with my vacuum for at least 5 minutes if I'm only doing two rooms and the kitties are put on lockdown).

In between those guaranteed appointments we have to juggle:

• going to & from forgotten appointments made months ago or last minute emergency appointments.
• calling our insurance company & doctors about billing questions or coverage
• researching assistance programs, medical diagnosis, medications, & alternative therapies
• cleaning heaps of laundry, stacks of dishes, & ever present cat hair
• random nap times (she never goes down at the same time no matter how hard I try to get her on a schedule and lately wants to take a nap around 7pm!)
• administering anti-seizure medicine twice a day (plus vitamins, fish oil, nasal spray, and pro-biotics...times 2 because I have my own vitamin cocktail to swallow)
• attempting to get Rae to drink 3 bottles each day
• feeding Rae 3 meals (which occasionally means a pediasure...two birds one stone...score!)
• bathing Rae & brushing her teeth (basically all things hygiene related...some daily...others not...oh and I have to shower and brush my teeth too!)
• battling Rae's strong dislike of having her hair done (which can end up with me looking like a pro wrestler holding an opponent in a head lock or her looking like she has perpetual bed head)
• multiple mini sessions of all three therapies, conducted by me, in between her scheduled therapies
• paying bills/sorting mail/running errands/picking up the trail of stuff we leave all over the house
• trying to maintain my own sanity by spending time with friends (face to face or online)
• carving out "quality time" with my husband or finding some alone time (hahaha...that usually means a shower)
• working on long overdue projects (who doesn't have a pile of those?)
• and last by not least...feeding myself and making dinner (and lots of banana bread)

I admit, Rae eats ALOT healthier than my husband and I do. She doesn't drink soda or sweet tea and her juice (40% less sugar) is almost always cut in half with water. The majority of her baby foods are organic (yes, we're still feeding her baby foods because of her difficulty chewing and aspirating liquids). She rarely eats anything from a fast food restaurant with the exception of Taco Bell Mexican pizzas (something I'm going to try to make at home next week); which, I am going to attribute to my obsession with them during my entire pregnancy (every week on Thursday...the drive thru worker knew it was us before we even made it to the window). We have yet to meet a food that she won't consume...or a t-shirt for that matter.

Now, I find myself being convicted about how often I neglect my own care...physically speaking. I don't eat proper meals (I usually skip breakfast and just drink coffee). There is a lack fruits and veggies and the use of more processed foods than I care to admit. I'm not the best about exercising...I do try to walk once or twice a week and recently started biking with Rae in tow. I like to keep meals for myself simple and my go to's are usually microwave dinners (quick, cheap, and some of them are quite tasty). But, that doesn't really help me over all.

In order to take care of Rae, I HAVE to take care of myself. That means making better food choices, getting some exercise, and taking my doctor a bit more seriously. So, I am attempting to turn over a new leaf and take care of all of me...mind, body, and soul. I'm not yet sure how I'm going to work it into our routine (like I actually have one <derisive snort>), but I know it will involve many small baby steps towards the ultimate goal...a better, stronger, healthier me.

Riding in the Sun...Finally!

Awhile back, we bought a bike trailer for Rae. I was stoked because I purchased it for 50% off of the regular retail price. It symbolized some level of freedom for me. Then Rae got sick, we went to Atlanta, the holidays came (and went), I got sick, Rae got sick again, and the weather has been fickle. Finally, we got a brief break and were able to take our first ride!

My riding buddy! 

What's that and can I get it into my mouth?

She was way more interested in the straps that were keeping her upright and kept trying to get them into her mouth.  During the course of our ride, she fell to the side twice and I had to stop and make adjustments to her support system (another pillow or two might just do the trick).

I also learned that our flat street is not so flat after all and I underestimated how much more challenging it would be to ride a bike while towing an extra 40 pounds! That and I need a new (wider, better cushioned) bike seat. My butt was killing me! It is evident that I need to be a tad more disciplined when it come to exercising.

All in all, the bike ride was a success...if you don't count Rae hanging over in her harness...and I hope to do it again (after I get over being sick...again!)

Mommy are we done yet?

5 Things I'm Thankful For

We set aside one day a year to reflect on all the blessings that have been bestowed on us, the things we are thankful for, and to subject a family member or friend's home to mass chaos (hosting can be a joy and a major stressor). I don't often like to participate in all the "thankful" postings on social media (they sometimes seem a tad repetitive), but I do have a few things on my list...

A very small fraction of our family.

1. I'm thankful for my family and friends (an obvious choice). They have stood beside me through all my emotional breakdowns, irrational logic, and bi-monthly (*cough-cough*...bi-weekly) pity parties (no one likes being invited to those). They have celebrated all those little inchstones with the same exuberant joy one would express at winning the lottery (maybe not that much, but it's close).  They have helped me over so many bumps, hurdles, and pitfalls to numerous to list. Most importantly, they haven't made me feel like I'm not doing enough for Rae, they don't think I'm crazy (maybe just a little) when I suspect something else may be wrong, they've willingly been my shields when strangers prod, they remind me that I also need "me time," and they love, Love, LOVE our daughter for who she is and not who she isn't.

Rae and Karen, her Occupational Therapist,
during her session this week.

2. I'm thankful for all the doctors, nurses, lab techs, therapist, case workers, insurance reps (especially Ms. Timmons at BCBS...she called me almost every day to keep me posted about the status of a particular concern), and everyone in between who have helped us maneuver through this Hypotonic maze, offered us hope & encouragement,  and (on numerous occasions) graciously taken the extra 10 minutes (okay...20 minutes...running over into someone else's appointment...sorry) patiently going over information they've already explained two or three times before and listening to me go on and on about our long list of concerns. They never once made me feel like I was wasting their time!

3. I'm thankful for my health (another obvious choice). I'm not in the best shape physically, but I am healthy enough to care for Rae (for now...knock on wood). I had a pretty big health scare this summer and ended up having my thyroid removed it was two and a half times average size, was starting to choke me, and stretched my vocal chords to the point they were about to break (my vocal chords are still not fully healed). Thankfully, it was not cancerous. While at times I feel the strain/pain (physically), I'm still able to get up and down from the floor after playtime or therapy, I'm able to lift her in and out of her crib or the tub, and I can carry her (this is becoming more difficult and my back is starting to file complaints). Under normal circumstances, I'd probably blow off my own health issues (and I still do from time to time), but I have to take it more seriously now. Rae needs me and I need to be here for her.

Rae with Anna, her physical therapist,
during this weeks session.

4. I'm thankful for my online support group (Hypotonia Parents Connection on Facebook). You ladies (and men) are awesome! You just "get it." You don't judge anyone when they get angry and vert or share worries and fears. You offer such wonderful assistance when researching testing/therapy/toy options. You laugh, rejoice, and cry with each member. It's bittersweet that the number of members keeps rising. I'm thankful for each of you...you help me stay sane!

5. I'm thankful for the inchstones. Those tiny developmental drops of rain that sustain us through the periods of draught. Two weeks ago, I was in despair. We hadn't seen much progress for weeks and I was at a loss. Nothing seemed to work and everything seemed to be off the rails again. It's not a good place to visit, let alone feel like you've been stranded there. Fast forward to this week and it was like a fog had been lifted! We have some big (positive) changes and my cup was once again overflowing with joy.

I could continue to list all the things I'm thankful for (my growing faith in God, the roof over our heads and food in our pantry, etc...), but that would be a never ending list. This is my short list. The ones I remind myself of almost every day.