Monday, December 31, 2012

A Year in the SUN: My Favorite Posts of 2012

I am very thankful that 2012 is coming to a close. It has been a very arduous year for our family. I wanted to take a moment to share a few of my favorite postings from this year.

Hypotonia: Part One, Two, & Three (2/11, 12, 14): This is a three part series that covers what Hypotonia is, what causes it, how it effects a person's development, and treatment options (there's just one). I wrote this series with the hope of helping others understand what Rae is struggling to overcome (or at least improve). Hypotonia...it's so much more than a symptom.

The Plan (4/21): Man plans, God laughs....and then we plan again and He laughs some more. I think I see a pattern here. God must laugh ALOT because "my" plans seem to change almost on a daily basis.

Confessions of a Hypocritical Mind (5/7): We all have an inner dialogue that we may not be very proud of and I decided to confess to my own hypocritical thoughts.

Sun Beams: Joyful Progress (6/26): The title speaks for itself. Sun Beams are little rays of light that help us get over the next hurdle. They usually happen when we feel the most down and offer enough joy to keep us moving forward.

Rae's Apple Party (10/8): For Rae's 2nd birthday we asked guest to help us purchase an iPad (hence the "Apple" theme) for her to use for communication purposes. She hasn't quite gotten the hang of it yet, she's learning and it's invaluable to us while patiently (well...maybe not always so patient) waiting for doctor appointments or driving to Atlanta (more on that to come).

More Than I Can Handle (11/21): Everyone has some platitude that they hear over and over again that nearly drive you mad. Mine is, "God will never give you more than you can handle." Wrong! I decided to weigh in on this particular misnomer.

There are so many other postings I'd love to share with you all and hopefully these earlier ones will encourage you to peruse the blogs archives. It has been one roller coaster of a year and I'm looking forward to a new year filled with more inchstones met, maybe a diagnosis (not hugely important in the grand scheme of things, but it would sure be nice), tons of pictures/videos, a few family trips, and lots of laughter (I love to laugh...who doesn't?). I'm sure there will be plenty of the other icky stuff (that's just life), but in the words of Sweet Brown, "Ain't no body got time for that!"


I'm already to busy searching for my silver linings!

Sunday, December 30, 2012

Big Book of Boo Boo's: Managing Medical Records

I don't think anyone would ever accuse me of being well organized. I always have great ideas about what to do with my piles of "stuff" and honestly they are great ideas, but most of the time the piles just get shuffled from one hiding place to another. Now, I don't really have the option of being unorganized. There are way to many receipts, referrals, claim/appeal forms, lab results, appointment reminders, etc...that have to be maintained (or else I'm going to end up sleeping on piles of paper instead of a mattress). The best advice I was given when we started on our hypotonic journey was to keep everything organized in a BIG binder. I now refer to these binders (I have four) as Rae's Big Book of Boo Boo's (thanks Doc McStuffins!).

So, now I am sharing that advice with you... It's so easy even the most organizationally challenged can do this and it doesn't have to be fancy...just functional.

Here's what I used:


A three ring binder (I wouldn't use anything smaller than a 1.5" or you'll soon find yourself buying a bigger one, my biggest is 3"), legal pads, dividers w/pockets, business card sleeves, gussetted binder pocket (I found mine at Staples), a three hole punch, a stapler, pens (both regular and perm marker...I used a Sharpie), and finally (if you have one) a label maker. I'm sure there are other organizing items available, but these are what I found work for me.



 If you have access to a large hole punch (we used a 40 page punch) then you can put holes into the legal pad and keep one in each binder. These come in handy when calling about a particular bill or test result and when you need to jot down notes/questions during or after an office visit. Rule of thumb, write down the name of anyone you speak with, the date & time you spoke to them, details of the conversation, and if possible get a reference number.



Having a convenient place to store all the business cards from doctor's offices, intervention programs, therapist, equipment, etc...is great! I always have access to their number. Just make sure if you change doctors or if someone leaves the practice then change out/remove their card.



I prefer the divider with pockets on the front and back. Since I don't carry my three hole punch to their offices with me (the binder, diaper bag, iPad, purse, and Rae are enough thank you), it makes a great place to slide papers in for safe storage until they can be filed later.


These gussetted binder pockets are great for those smaller items like CD's, pamphlets, a pen (I usually have four in my purse), or any other misc item that you need to store in your Big Book of Boo Boo's.

I didn't take a picture of the inside of my binder after I put all my paperwork in because...well...it's private information, but I separated the doctors by specialty and frequency of our visits. The larger orange binder is our main Big Book of Boo Boo's. The pink binder are doctors we've seen maybe once or twice. The purple binder is just for Genetics (since we go to two different offices I felt it best to keep their information together). The black and white binder is for all the bills...organized by who is billing us and I only keep the most recent statement (I also keep ALL receipts of any payments we've made...same for any co-pays, but those are kept with the specific doctor we paid).


Once your Big Book of Boo Boo's is put together it's pretty simple to add information as it comes and is a great way to keep all the doctors on the same page during a visit (especially if you see one doctor at one practice and another somewhere else...the information doesn't always get shared in a timely manner). I can't tell you how many times I have had to reference one of these books! They truly are a life saver and if anyone else has to take your little one to the doctor the book contains pretty much everything they need to know. After working on these this afternoon, I realized that I need at least one more for Early Steps (back to Staples I go...).


Thursday, December 27, 2012

The Best Christmas Gift Ever!

I wasn't really looking forward to Christmas this year. In fact I was dreading it. Over the last twelve months we have experienced a lot of heartache (family passing, Rae's medical, etc...) and my rose colored glasses were completely demolished beyond repair. I have been battling depression on and off for most of this year. The holidays just weren't bright and cheery for me (and most of our immediate family). I clung to my memories, sought comfort in family and friends, had a few fights (a sick form of therapy for me), and desperately tried to fill the voids in my heart. But the voids just kept deepening and I just kept going through the motions. Sometimes that is the only thing I can do.

I was fully aware that this Christmas with Rae wasn't going to live up to what I dreamed of this time last year when my rose colored glasses were whole. There wasn't going to be a tiny gourmet kitchenette under the tree or a classic pink pedal car. She probably wasn't going to tear into the presents, wildly tossing pieces of holiday paper into the air. I started bracing myself for what I felt was inevitable...disappointment. I feared I (and my husband) would be disappointed. Not in our daughter, but in yet another year of absent "first" moments.

I am happy to say that I was wrong!

I think I can, I think I can...the corner ended up in her mouth.

Out of all the gifts that we were given this year, our favorite wasn't anything anyone could purchase in a store or make with their own two hands. It was something that only Rae could give us...a first moment. A moment where we could see a spark of interest beyond, "Can I get that to my mouth and chew on it?" (trust me she did plenty of that too) She actually wanted to tear into the paper, pull tissue from bags, and play with her toys & the paper! Every movement was made with intent and for the most part on her own...I didn't have to MAKE her do it! She did it for herself (full disclosure...I did have to make the initial tears, but still...AWESOME!).

Playing with her new piano!
Thanks Munkle & Family!

Every year Mimi buys Rae a new baby doll.
Meet her "Sitting Pretty Cabbage Patch Kid.

Howdy ya'll!

Later on that afternoon, she even tried to play with another toddler when he was rolling his ball around.

You go first...

Now it's my turn!

By the end of the day she was all tuckered out (and so were we).

She refused to take an afternoon nap and passed out just around 8pm.

It wasn't quite the chaos I had envisioned a year ago, but it was still more than I anticipated when I woke that morning. It was the best gift I could have received and helped fill some of that void.

video

Wednesday, December 19, 2012

Crafts: Sensory Bean Bags

Months ago I thought, "Hey, you should make some sensory bean bags for Rae!" This was after I searched online and saw what other companies wanted for textured bean bags ($18 - $30...yikes!) So, with my Mom in tow, I went out and gathered different textures, bought lentils, and then....nothing. Zip. Zilch. Nada. The materials just sat on my sewing table in their JoAnn bag waiting for me to get off my butt and make Rae's bean bags.

Time ticked by and I made a few pathetic excuses as to why I hadn't started the project (sometimes it is fear of messing up...that stuff cost money). Christmas started getting closer and I knew I wanted to do something for Rae's PT and OT. These bags would be perfect and I had plenty of material. So, this week I got down to business and made the sensory bean bags (it only took about a little over an hour for one set). I have other textures that I plan on adding to the set.


The red one is really soft and furry, the beige one is rough (burlap), the blue one is smooth like suede, and the yellow one is vinyl (bent a needle making the first one).

Helping Anna open her present. 

Oooooo, tissue paper!

Surprise!

So soft...

I'm glad I finally made them because the look on her PT and OT's faces when they
received them was priceless.

There and Back Again: A Somewhat Expected Journey

In a hole in the ground there lived a hobbit. Not a nasty, dirty, wet hole, filled with the ends of worms and an oozy smell, nor yet a dry, bare, sandy hole with nothing in it to sit down on or to eat; it was a hobbit-hole, and that means comfort.

Ok, just kidding...that's the first sentence from The Hobbit by J.R.R. Tolkien (in case you didn't know...seriously, read the book if you haven't. I'm sure the movie will be FANTASTIC, but the book is AMAZING!). I'm kind of excited about going to see it this month. Now, on with the real story.

Downtown Atlanta, GA
By now, most of you have heard that we went on a little trip to Atlanta, GA at the end of November. My first post regarding the trip was more emotionally driven since we were gently asked to voluntarily sterilize ourselves (I'm moving past that now). Here's how our somewhat expected journey began...

The process of having a muscle biopsy scheduled for Rae began on her birthday (Happy Birthday! You get to have surgery! Such an awesome present...did I mention she also got AFO's for her birthday?) I was given all the contact information (more like send them an email they'll get back with you) for Dr. Shoffner and his team at Medical Neurogenetics in Atlanta, GA. It didn't take long before I heard back from a member of his staff who sent me a link to a special encrypted email box and a ton of paperwork to fill out (sigh...more paperwork detailing our genetic gumbo and everything Rae).

Once the paperwork was submitted, we were ready to begin the scheduling process. The first appointment offered was quickly taken...by someone else...ARGH! I just learned a valuable lesson...when you get this high in the "specialist" world, take the first appointment and make everything else work around it. The next email they sent offered me an appointment during Thanksgiving week . I immediately took it and then prayed that even though it was a holiday week we would be able to make it work. Nope! There were no surgeons available to perform the biopsy during that week...can we make it to Atlanta the following week? I again replied with an enthusiastic, "YES, we'll take it!" (I really wanted to get this whole thing behind us.) I then made it known that should a cancellation occur (haha, yeah right) that I would be more than happy to bump up our trip....that so didn't happen. I have to give props though. While it was a tad frustrating trying to pull this together via email, the staff at Dr. Shoffner's office were on the ball, always courteous & helpful, and responded quickly (I hovered over my computer for weeks waiting for encrypted emails).

Now we found ourselves in another period of waiting...followed by even more waiting...oh and did I mention praying? We did ALOT of that too. Rae could not get sick before her appointment! She couldn't have multi-vitamins two weeks prior or any pain medications that would thin her blood (I called to verify that it was okay for her to have her anti-seizure meds the day of her procedure). No fevers, no sniffles, no nothing...period. Of course she managed to get a double ear infection (her first)! Eek! Fortunately, we were able to get that nipped in the bud about a week prior to our appointments.

We did not sit idle while we waited. I called our insurance company (repeatedly) to verify coverage for Dr. Shoffner and the surgical center. I emailed Medical Neurogenetics and requested they get a voluntary pre-certification for the procedure and lab work (all clear...maybe...insurance companies like to add disclaimers). We scheduled & completed a modified barium swallow test and then started the process of setting up our newest therapy. I scheduled our evaluation with the children's rehab center for the same morning we were scheduled to leave for Atlanta and our first official appointment for the Tuesday following our return (I don't let grass grow under my feet...for long). In between all of this, we had two birthday parties, Halloween, a Pre-Thanksgiving Day Dinner (we host that one), Thanksgiving (we hosted that too, but on a much smaller scale), and miscellaneous doctor appointments (whee!).

The week we were to leave, I made sure we had beds to fall into while we were in Atlanta (I have an Aunt (and family) and a brother that live there), printed up directions (with maps), verified appointments, and pre-paid copays (that was a first). I made a (mental) list, gathered piles of "stuff" we had to take, and borrowed my parents van. In the early morning light on November 27th, I locked the door to our home and then I realized I forgot to give our cats fresh water and food (Oops! I was bound to forget something). To say I was nervous seems like an understatement.

The further we moved away from the "planning" stages of our journey, the closer we came to actually going. I wasn't sleeping well. I became a tad edgy. My mind seemed to wander off into a haze of "what ifs;" which, I would try to beat back into my sub-conscience...sometimes successfully (other times not so much) and it wasn't until Rae woke from her anesthesia induced stupor that my faculties finally began to return. Those two months just seemed to slip through my fingers and it was only the beginning...

Friday, December 14, 2012

Family Portrait Fun

We've never had a family portrait done. Seriously...we've had a couple of snap shots taken and pictures of Rae with one of us, but never all three of us together. In my defense, I'm the one usually behind the camera (it's kinda my thing) and I'm a tad picky about who shoots my pic (I hate myself in photographs). In October, I made the executive decision that "WE" were all having pictures taken and "I" was actually going to be in them!

Here're a few of my favorites...








A BIG THANK YOU to SarahAshley621 Photography.
If you live in the Northeast, FL area you can find her on Facebook.

Monday, December 10, 2012

Amazon ROCKS!: Seeking a Cute Girl in a Wheelchair Decal

Rae is going to get a wheelchair. I was told that this was a strong possibility about a year ago and it really threw me for a loop. I held onto hope that they were wrong (and they gladly let me) and she was going to just excel beyond everyone's expectations and walk by the age of two.

I was wrong.

She did not walk by two and she may not walk till three...four...???

About four months from now, we will start the process of ordering a wheelchair for Rae. This is not met with much celebration, but it is a milestone for her (in a sense) and we are going to smile and do whatever we have to do to make it the best experience for all of us. This may mean getting some crazy color, having a friend do some custom airbrushing on it, and embracing it because it (the wheelchair) will help Rae and us. I've accepted this and everything that comes with it (a wheelchair ramp leading to our front door).

With acceptance comes personalization (of a sort) and I went to trusty (don't fail me now) Amazon.com, searching for a decal of a little girl in a wheelchair for my car (yes, its a bit early, but I wanted to see what was available to determine if I needed to have something designed). Most of what I found were the typical blue and white images one finds on the parking signs. But then one caught my eye and after I read it, all I saw was violent, angry, red...
"After I cook the Vegetables what do I do with the wheelchairs?"
Is that supposed to be funny? I'm all for having a twisted sense of humor, but that statement is NOT funny by anyone's definition of the word (I'm not the only one that felt that way). My initial reaction was intense anger. Here I am struggling with the fact that my daughter is getting her first wheelchair, not sure if she'll get out of it (hoping for the best), finally accepting it and searching for the silver lining (like front row parking...its not much of a silver lining, but I'll take it!) and this idiot is cracking tasteless, offensive jokes about cooking vegetables people who use wheelchairs?

I vented to my online group (Hypotonia Parents Connection...Facebook Group) and then walked away from the computer to cool off and cuddle my daughter.

When I returned...about a hour later...the other parents were in full blown outrage mode with me. One of them (thanks Tricia) even sent emails to Amazon and the seller (who shall remain nameless, but not because I don't want to name them...you'll see why) . Here's a small snippet from one of her emails:
"...there are thousands of other families in the situation that my friend finds herself in today - trying to somehow accept that her precious daughter who just turned two years old - that she must somehow accept this situation and move on with her life. And moving on she tried to find a sticker that would celebrate NOT denigrate her daughter. Shame on you. Shame on you for making a buck on this and every other tragedy."
I was finally calmed down enough to try to compose a tasteful (less soap boxy) complaint to the seller about their bumper sticker (seriously...who would put that on their car?!?). I clicked on the link and was immediately redirected to:
"Looking for something? We're sorry. The Web address you entered is not a functioning page on our site."
I always loved shopping on Amazon.com. Their customer service (if you can find a number...which I did last year when there was a shipping error) is awesome and they actually like to resolve issues (that has been my experience). The fact that either they or the seller (but I'm pretty sure it was Amazon) removed this product in under two hours is astonishing. I now love, Love, LOVE Amazon.com! They don't play when it comes to their customers...especially ones that can rally large numbers of angry mothers all around the globe (if need be).

Here's an example of what I was actually looking for:

Brought to you by Beach Graphic Pros

Friday, December 7, 2012

We Have a New Therapist!

I can do it!
At the end of October, Rae went to the local children's hospital to have a modified barium swallow test done. We were always aware that she has some difficulty eating, but not anything severe so we didn't worry too much. However, after a visit to a pulmonary specialist (another section for the "Big Book of Boo-Boo's), who ruled out asthma for her constant coughing, she suggested the swallow test to check for reflux. Instead of finding reflux, we found out that Rae has been aspirating liquids. The liquids are seeping into her lungs which gives germs/bacteria something to eat, which in turn causes infection and can cause pneumonia (whee!). So....now what?

All her liquids must be thickened with either rice cereal or a thickening product (one we tried was called "Thick It" and it continued to thicken over time turning milk products into sludge...ick!). Apparently, the new rage is a gel thickener, but it's more expensive. There are different levels of thickening and Rae needs to have her fluids thickened to "nectar" consistency, which is the lowest, the next being "honey" and the thickest being "pudding" (might as well just eat your liquids with a spoon). I'm very thankful we did not have to go any higher on the viscosity scale because that means we're much closer to our goal... No more thickener!

Ok...trying to make a long story short.

Rae's tongue came out to touch
the Nuk brush!
They also recommended we see a speech therapist for feeding therapy. I called Dr. A, requested a referral to the local children's rehab, and managed to get our first appointment scheduled for the same morning we were leaving for Atlanta (whole other story). I wanted to get the ball rolling and knew the first appointment would be more of an assessment. After our first meeting, I walked away with almost two months worth of appointments scheduled every Tuesday and Thursday (now we're up to 4 therapy sessions a week).

This week we had our first official appointments with Ms. Nichole (she's kind of funny). Already, Rae has surprised Ms. Nichole with the variety of foods and textures she's able (and willing) to eat. It was also a great relief to her that Rae isn't scared of new people so we don't have to have an adjustment (getting to know you) period. Rae isn't the only one learning...I've also learned a few things too! When Rae throws her head back durning meals, she is trying to move food around in her mouth (I thought she was just being silly). I'm looking forward to working with her and with Rae over the next few months and hope the feeding therapy will help resolve the aspiration problem and maybe a few other issues (tongue lateralization...side to side movement).

video

Thursday, December 6, 2012

Rae's Book Review: You Are Special


Awhile back, I ventured into my local Lifeway Christian Bookstore and while perusing the children's books, I came across the story of Punchinello, a Wemmick (think Pinocchio after he came to life, but before he became a "real boy"). He and the other Wemmicks were hand carved by a woodcarver named Eli and they all lived together in a village (I'm pretty sure you can see where this is going). The title of the book I held in my hand was, You Are Special*, and after I opened its cover and began to read the story I felt my eyes begin to water. It is such a sweet story and it is applicable to ALL children (and maybe a few adults).






They, the Wemmicks, would reward or discourage fellow Wemmicks with stickers, either shiny gold stars (good) or plain ol' dots (bad). Some Wemmicks were covered with coveted stars of approval and admiration. Others were covered with a mixture of both. Then there were those Wemmicks that were only covered with dots!









Poor Punchinello was one of the Wemmicks covered only with dots. Over time he began to believe that the other Wemmicks were right and that he could do nothing right and wasn't a good Wemmick (How many times have we felt this way?). His self confidence was being shattered by the judgement of others and he was not a happy Wemmick.












Then one day he met a different kind of Wemmick, one with NO stars and NO dots! Lucia was an oddity in the village. No matter how many times her fellow Wemmicks attempted to place a sticker on her, the sticker would not stay! This intrigued Punchinello. He had to know her secret!














Lucia told him to visit Eli, the woodcarver, and spend some time with him. After some thought, Punchinello decided a visit to the wood shop couldn't hurt. He didn't like being covered in dots and if Eli could help him then he needed to go see Eli. So, the next morning he walked to the wood shop.








It was there, in the quiet wood shop, Punchinello learned that Eli didn't care what the other Wemmicks thought about his abilities or appearance. He required no defense for the blemishes. Eli told Punchinello that it only mattered what he (Eli) thought about Punchinello and well...he thought Punchinello was "pretty special."









Sometimes I feel a lot like Punchinello. I don't understand why someone (God) would not care about all of my blemishes and shortcomings. There are so many people out there covered with stars...why would He ever care about me Why would he ever use me? But that is an earthly view of myself...not a spiritual, Godly one.  The more I grow in my faith the more I see my "dots" falling off and that's a good feeling. It doesn't happen overnight...but it can happen. 








Now, to bring this back around to Rae... In our society, we can be very much like the Wemmicks, spending our time judging the abilities (appearance, intelligence, etc...) of others. Everyone wants stars and those with dots become unhappy Wemmicks just like Punchinello. But, God doesn't care what society thinks...just like I don't care what society thinks about my little girl (can I get an AMEN from you parents out there...). She is SPECIAL to me. She is perfect and I love her! I only pray that she'll understand how special she is and won't let societies thoughts of who they think she is become the voice she listens to.

I've never read much Max Lucado. I'm beginning to think I should read his stories more often. 



"But when our Father in heaven reminds his children, "You are special," the words carry an unmistakable promise: "You are special, You are mine. Someday you'll be home with me...forever."
~Max Lucado

*You Are Special, written by Max Lucado, illustrations by Sergio Martinez

Tuesday, December 4, 2012

A Permanent Fix

In the middle stages of our May December romance the subject of marriage and children was discussed.  I, being May, wanted children and I didn't mince words about that fact. Yes, at times I may have wavered just a bit (especially when money was good and I could afford to do things I never thought I would be able to do) and I always feared that some health concerns might make it difficult to conceive, but deep down I wanted needed to be a Mom. Jacob, being December, wanted to give me what I wanted, but also wanted a compromise. I used to envision two or three children and our compromise was to only have one. Rae is the result of that compromise...she is our only child.

Before she was born, I started thinking about how much I was going to miss being pregnant (I had a very easy pregnancy...don't hate...). After she was born, I started worrying that she would be lonely and that over time I would be lonely as well without a larger family. But, that door was closed and unless Jacob decided to open it again then I wasn't about to suggest it (well maybe just a hint or two...three). Then the rug started getting tugged out from under our feet...

We started worrying about Rae's development and then the doctor appointments started. The longer we went without an answer the more nervous I became about it being something genetic (which it in all likelihood is) and then the question of having another child became more taboo. It was also about that time that people started asking if we were going to have a second baby (ouch!) and I just didn't know how to answer them. Finally, I started telling them, "No." I became afraid to entertain the idea. Then they'd ask, "Why?" After an awkward pause I'd confess, "I'm too afraid this would happen again and that the second time it could be worse." I was being completely honest with them, but the next comments were usually something along the lines of, "Well, you don't really know that "it" (whatever "it" is) would happen again." Really...I never thought of that! How silly of me.

I had a blissfully ignorant pregnancy. The idea that something completely undetectable/un-diagnosisable could happen never crossed my mind. I am confident that it would not be the same if I became pregnant again. I would have 40 weeks to stew over all the "what ifs" and drive everyone near me insane. I digress... We have actually discussed having a second child for various reasons, but some most of them feel selfish:
  • Rae would have someone to play with and she wouldn't be alone (only thinking about her)
  • Maybe "it" wouldn't happen again and we would have the opportunity to have some of those "normal" parenting experiences that we dreamed of for 40 weeks. (all about us)
We have to also consider the downsides:
  • How would we be able to financially handle another child with or without special needs?
  • What if "it" happened again? Are we physically able to care for two children with special needs?
  • What if the second child resents Rae and ends up leaving her alone anyway?
  • What if the second child resents the care and time we need to spend with Rae?
That list can go on and on...

This past Wednesday, we were asked to take something into consideration. Something so devastating that I still haven't wrapped my mind around it and all it implies. The final bit of rug left under our feet was completely removed. The doctor we saw believes that what Rae has is genetic (Duh...now tell me something I don't know) and we both have a recessive gene that combined to create one hell of a perfect storm (my words...his were way more eloquent). He went on to say that while contraceptives (condoms, birth control pills, etc...) were good (to a point) they were not 100% foolproof and we may want to consider a "permanent form of birth control." Basically, either one or both of us should have our plumbing snipped. We were just nicely asked told to not even try to have more children and to voluntarily sterilize ourselves!

Part of me feels like a challenge has been placed before me. Who is he to tell me that I should never have more children? What does he know? There are thousands of parents going through similar situations and have perfectly "normal" second children...maybe we would be one of those? Maybe we should just do it and I'll walk into his office with a bulging pregnant belly, look at him with defiance, and dare him to say a word!

Then the "what ifs" start again. What if he's right? What if I'm wrong? What if I had to sheepishly walk into his office with another child that needed his expertise? What if...

Some may ask where's my faith that God will provide or that He will take care of the situation before there is a situation to take care of. I get that, but my faith falters. He may be unwavering, but I am not. But, it isn't just my faith in God that falters. It is also my faith in myself. I fear that if something like "it" happened a second time that I may not be able to recover. Others have more faith in me than I do and I'm sure they'd tell me I'd do what I always do, pick myself up and take care of business. Maybe they're right and maybe their wrong, but do I risk it?

Monday, December 3, 2012

Guest Blogger: When Plans Go Awry


Hello, my name is Maria Sudduth and I'm a planner. I have been married to my high school sweetheart Joshua for almost nine years. After many years of trying to conceive and finally giving up altogether, we welcomed our beautiful daughter Micah in May 2011*

So often in life we have a plan of how our life should turn out. We have all our major events mapped out like a well-planned road trip. We know in our head when we will finish school, get married, have kids, buy our dream house and get a dog. Unfortunately, life is not as predictable as the childhood game we all played and once loved. What happens when life doesn’t go according to our plan? 


As I said earlier, I am a planner. That is what I do. I used to use my free time to calculate how much money I could save for the entire year. I would plan a vacation months possibly years in advance (please note there was always an itinerary). I was always trying to plan a way out of my home-city, looking for some place smaller and quieter. I was always planning for the future, when it hit me, what’s the point? My plans NEVER come to fruition. Something ALWAYS goes wrong. 

After I married my husband I thought we would just automatically have kids right away. I took the very thought for granted. Imagine my surprise when six years passed by and there is no child. Once I finally did get pregnant, I miscarried the baby. It took me six months to grieve that child and try again. We had passed the first trimester. This time it was real. We were going to have a baby!

Naturally I did what I do best, I created a plan. I did all my research. I decided I was going to have a natural birth with no medication. I was going to breastfeed for a year for many reasons, but mainly because it was free!!!

Once again, imagine my surprise and my utter disappointment when I had labored naturally for twelve hours and was then told I needed to have a C-Section.  I had been at nine centimeters for five hours. Nothing was happening. The doctor is telling me she is stuck at a transverse angle and is not coming out.  Since this is supposed to be a blog and not a novel I will not tell about my entire traumatic hospital experience. Needless to say, I did not get my planned birth.

I tried to breastfeed. I visited the lactation consultant once every two weeks for four months. I tried everything possibly known to man before they told me you are not producing enough milk for your baby. I had to switch to formula if I wanted my daughter to gain any kind of weight. Another blow to my infamous plan, I was crushed.

So my question is, what do you do when things happen outside of your control? Your baby is born with special needs, your husband loses his job, your spouse leaves you, a family member dies and the list could go on and on. I just chalk it up to life’s not fair, but oftentimes that does NOT make me feel better. 

It’s all about perspective. The only advice that I can give is take one day at a time. Rejoice in the small things. Thank God for what you are going through, even though it is not what you necessarily had in mind, it is what you have been given. Through so many trials in my life, I find myself acting like a spoiled two-year old ready to throw a temper tantrum. 

Two-year olds are famous for a couple of things, but one of them is called the egocentric phase, which means everything is about them. I find that as soon as I put the focus on myself is when I become negative and bitter. The comparisons and the “why me’s?” start and turn into a full-blown pity party. As long as I am thinking of others and those that are less fortunate than me I am able to keep a good perspective on my reality. There will always be someone that has more than me. There will always be someone that has less than me. I thank God that I am smack dab in the middle.


Until next time…God bless.

*We are currently expecting our second daughter in March 2013.

Monday, November 26, 2012

All Knotted Up: Muscle Biopsy

If this post comes across as a little scatter brained there's a reason for that...I feel very discombobulated right now and I don't believe that will stop until after Friday. I hope you can make some sense of what I'm writing...

Tomorrow we head to Atlanta, GA for a muscle biopsy. I feel sick to my stomach. I didn't feel like that a month ago, a week ago, or even a day ago, but now I feel the anxiety swelling inside. At some point, it's going to overflow and I'll probably end up snapping at someone that doesn't really deserve it (that or I'll cry for no reason at all) and I'll have to apologize.

I haven't done much research on muscle biopsies (it can be dangerous) and last night I thought I'd be brave and try to prepare myself for what is happening this week. I entered "muscle biopsy scar child" into the google search engine and I found a picture at Quinn, Krista, and Lila, a blog about a young family in a similar (but oh so different) situation. The scar took me by surprise. It's much larger than I was anticipating. I started to cry. Then I wanted to know more about Lila. What I read made me cry even more. My heart goes out to them.

I don't want to research this anymore. There are too many variables that I just don't know or understand. I'm scared...very scared. The biopsy may give us the answer that has eluded us for over a year (not very long in comparison to others) or it may only leave us with more questions and no answers. As much as we'd like to have a specific name, this will not become my white whale. I refuse to let this consume us....but that's going to be hard at times.

Wednesday we meet with the doctor at Medical Neurogenetics. I don't have any clue what to expect at that appointment, but I know I'm taking my giant binder containing all Rae's medical information. Thursday we are going to have a day in Atlanta...just the three of us. I've never been to Atlanta. Usually, we're just going through it to get to Indiana. Friday, we check in at the surgical center and then we wait.

I probably won't be writing much while we're gone. I hope you all have a great week and if you can spare a few moments...say a prayer for us. I don't know about Jacob, but I'm feeling pretty weak and angst ridden right now.

Friday, November 23, 2012

Sun Beams: Reaching Inchstones

This week during Rae's PT and OT session we had some wonderful examples of progress! She did such a great job and worked so hard to meet these inchstones that I had to run and grab my camera so I could capture it on film (and video of course).

It was a GREAT week and I want to share those moments with you...

video

Rae showing off some great head control with Ms. Anna!

video

Rae sitting pretty while watching Sid the Science Kid.

video

Rae playing with a ball during OT with Ms. Karen.
This is a BIG development and is the first time she has actually played with a ball!

video

Rae pulling (not racking) pegs from the board and dropping them in a bucket.
This has taken months of work and she just started doing it without prompting this week during OT!

Sitting without support from Ms. Karen.

Weight bearing on her arms (about 70% her, 30% Ms. Anna) and sitting unsupported!

These exciting developments were just what we needed!

Thursday, November 22, 2012

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.