Wednesday, March 28, 2012

The Quilt I Wear

Every morning, after I throw my blankets off and crawl out of bed, I pick up a quilt at the foot of my bed, wrap it around my shoulders, and weigh myself down day after day. After a year of dragging this quilt around every where I go, it is starting to look a little worn and a few places have become threadbare. The weight makes me feel exhausted (mentally, physically, emotionally, & spiritually). It's not the prettiest quilt, by anyone's definition, but it is mine and I just can't seem to leave it at the foot of my bed where it belongs.

It's my Guilt Quilt.

My quilt is made up of everything I feel insecure about and all the things I feel I don't do well enough. Every square is another piece of my guilty conscience (justifiable or not).

Top 24 Guilt Quilt Squares

  1. I don't spend enough time doing therapy with Rae, I don't make her work as much as she should, and I cave in to her will on a regular basis. 
  2. I'm not being as proactive as I should in finding help/assistance for Rae.
  3. I don't keep my home clean enough. (UGH...chores!!!)
  4. I don't keep my yard trimmed/cut. (Double UGH...more chores!!!)
  5. I don't bake/cook as often as I think I should.
  6. I don't get the laundry done. (if I do manage to wash everything it will lay on my dining room table for a few days before I put it all away).
  7. My husband and I don't spend enough time together without all the distractions of life (Rae, emotions, "stuff") getting in the way. (this is a doozie and often leaves me feeling lonely)
  8. I can't really return "favors" or do things for the people I care for & love.
  9. I don't call my family/friends often enough to see how they are doing.
  10. I don't do anything with my photography website or photography in general.
  11. I don't make all of Rae's food. (seriously I'm doing the best I can)
  12. We don't get enough sleep...I constantly toss and turn (the sand man needs to give me a double dose!) and my husband snores so I'm always shaking him to make it stop.
  13. I'm angry, sad, resentful, mean, depressed, exhausted, selfish, crazed, mad, nit-picky, lazy, undisciplined...okay this list can go on forever.
  14. I'm not as neighborly as I want to be or think I should be.
  15. I don't exercise and I don't eat well. (Oooo....Taco Bell Thursday!)
  16. I did this to my daughter because it is likely a genetic thing and that comes from us.
  17. She doesn't walk, crawl, or roll over because I don't work with her enough.
  18. She doesn't talk/sign/communicate because I don't work with her enough.
  19. I should have caught the seizures sooner. (Why oh WHY didn't I see it sooner???)
  20. I should have noticed there was a problem sooner than five months. (Yes, I was a new mom, but I should have known!)
  21. I get frustrated with Rae. (every parents struggle)
  22. I have to make decisions about who gets medical treatment based on finances...I really need to have my knee x-rayed, but I can wait because we have to have another MRI that has to be done for Rae and it's more important. (yes, I know that I need to take care of myself so I can take care of her and I promise I'll get to it...eventually)
  23. I really shouldn't yell so much when I'm least I don't hit.
  24. I never finish ANYTHING! I have so many little projects just sitting in piles that I could open my own craft store. (okay maybe I'm exaggerating a little, but I really need to finish something)
Now that I've talked about the guilt that has been sewn together to make one giant, heavy, burden that I carry around all day, I'm going to share the beautiful aspects of my quilt and the lessons it has been teaching me. These quilt squares are the things I believe I'm doing right. (the list probably isn't as long as my guilt list)

Top 10 Positive Quilt Squares

  1. I love, Love, LOVE my daughter!!! She is my joy, my passion, and my purpose.
  2. I try to show my husband that he is as important as Rae and that I love him too (I don't always succeed, but I try). It's easy to lose sight of the people around you when you're struggling with something or to take the frustration out on them.
  3. I keep all of Rae's medical "stuff" in a fairly well organized binder (it's the only organized thing in my house). This one little show of organization makes bills, receipts (very important), appointments, insurance info, doctor contact info, and programs easier to find when I need them and offers me some peace.
  4. I research what I believe may help Rae, her doctors, or us in helping her make further progress or figure out what is causing the problem. I have learned to limit this research by declaring computer free/doctor free days. This allows me to focus on the ever growing list of things I haven't gotten around to doing. I feel a greater sense of accomplishment knowing I finished something...even if it was simply dusting the living room, mowing the grass, or just playing with Rae.
  5. I am learning to ask for help (that is never easy for the person who is used to being the helper). When it comes to something I need for Rae I am going to pull every string and ask for any assistance we may qualify for (which isn't much right now). I will have no shame when it concerns our daughter's needs.
  6. I am making time for myself, for "us," for Rae, and for our friends/family that isn't centered around our current distressing situation (if you haven't started doing this I highly recommend it). Rae spends at least one night a week with her Mimi and G-Boss. This gives us a much needed break and allows us to enjoy a night to ourselves. Thank God for Grandparents!
  7. Even though I think I'm not being proactive enough...I am being proactive. I don't have to sit at the computer all day or tie myself to the phone in order to get anywhere. I am trying to keep it simple and focus on one task at a time.
  8. I allow myself to feel the emotions that present themselves. I don't wallow in them. I acknowledge they are there and then I work to move forward. Yes, some will circle back around, but I'll deal with them when they get here.
  9. Some days are better then others and I'm learning to seek out the good things, not the bad.
  10. Even though it is frustrating to no end, I have NO control over this situation and I realize that I have NO control. We will have to roll with the punches and have faith. (thanks for all the encouragement Maria, you are one of many prayer warriors that keeps me grounded)
It's always been easier to see the bad things in life, the things we do wrong, and the shortcomings we see in ourselves that other probably don't see. They hold us back and keep us from becoming the people we want to be. I challenge everyone that reads this to make an effort to find the positive things, no matter what the struggle is, seek out the things you are doing right. You'll be surprised what you find out about yourself. I always knew I was strong and in my weakest moments, when I feel like I can't take anymore, strength to rise up and push forward always seems to find me.
"Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Cor. 12:10

Wednesday, March 21, 2012

Sun Beams: The New Book

Every once in awhile I stumble across something that I think Rae might enjoy like our recent purchase of a Baby Sniffles Erie. I just can't seem to resist the urge to buy her a toy that she may become enthralled with because she doesn't always act very enthused with other toys like the bouncing Tigger that talks. Seriously, he makes her cry. It's so sad.

Well, the other day, after another doctors appointment (a bad pattern is appointment = toy), I went to a local Once Upon a Child hoping to find a pair of white sandals (my white whale of the moment) and ended up buying a V-Tech nursery rhyme book. Best $3.50 spent...EVER! She LOVES it and I feel like I did a good job.

Yes, my husband was correct...
we are already tired of hearing Ol' McDonald.

Patting her book to hear the puppy bark.

Coming from a parent that tries so hard to solicit a response from my sometimes non-responsive daughter this toy is magical. The book almost never fails to capture her interest, make her laugh and reward me with a grin from ear to ear. It now goes everywhere with us and even her Mimi and G-Boss have been programmed to sing-a-long...B-I-N-G-O!

She was really tired, but had a good grip on her book.

Monday, March 19, 2012

RAEdiant Striders

After learning about Rae's epilepsy, I decided to dive right in and create a team for Walk the Talk for Epilepsy. The walk is on March 31st and we are the...

If you'd like more information about how you can become involved with the Epilepsy Foundation or to find a local chapter click here.

To support the RAEdiant Striders please see our team page.

A big thank you to Rachael Sinclair, a graphic artist, of Louisville, KY for creating a beautiful, bright, logo for our group...

For more information about Rachael and her work please see:

Rachael Sinclair at Behance

or you read her design blog at:

The Jellybean Tree

Once again thank you all for your support and I hope we have beautiful weather on March 31st...

Let's all Walk the Talk for Epilepsy!

Sunday, March 18, 2012

The Results...Final Act

Now that we've gone to the doctor, made it out of the parking garage, past reception, and completed the's time to hear the results (...and there was much rejoicing. Yay!).

Of course, I was a little less than enthusiastic and more apprehensive since my gut was twisted up in knots and would not shut up. It just kept telling myself that I already knew the answer so why don't I just admit it to myself and move forward. But I didn't listen. I wanted to cling to the last shred of hope that I may have left. Sure the evidence was stacked against us, but maybe it's all just a misunderstanding (cue nervous laughter). Rae's fine. We're fine. Everything is fine. (borderline crazy at this point)

I hardly slept...

Our appointment was for 10:45am. Okay. I can handle that. That gives me plenty of time to get Rae dressed, fed, and ready for another long day. Heck, there was even enough time for me to have my 3 cups of coffee and make myself somewhat presentable. I nervously fluttered around the house packing snacks, bottles, lunch, and toys to keep Rae content and occupied. I turned the key to my KIA at 10:15. That gave me 30 minutes to drive 7 miles to Nemours. More than enough time to secure a decent parking space (close to the elevators), glide through check-in (charge please), ride an elevator to the Neurology department, and sit in the lobby until a medical assistant call's our name. At least that is what I thought...

The appointment was at 10:35! Ten minutes sooner than I meticulously planned for...CRAP!! 

Cue emotional over-reaction...(right on schedule) My mind raced through all the possible scenarios (mainly every possible variation of the same one)...what if I'm late enough that they make us reschedule and then I have to wait all weekend for the results?!?! I make frantic phone calls to Nemours, my husband, and my mother. I also yell at some heifer in a Mercedes (aren't we important) too busy applying make-up to notice the light has been green for a minute now and she just sits there...OBLIVIOUS! I beeped my horn casually...not too long to be obnoxious, but long enough to garner some attention. Well Miss. Benz sat through the entire green light and managed to sit through half of the second one (I believe it was intentional since I dared to beep my KIA horn at her). I was losing it BIG time! Time was just ticking away and the reality of our most recent situation was no longer at bay. I was in full blown meltdown. Yes, my husband heard most of this meltdown via phone and I'm not great at apologizing for these moment...I'm flawed that way...but I try to make it up in other ways. (honestly I buy/make him treats, a pattern I learned from my Dad...I know I'm a P.I.T.A. that's how I apologize for it)

After a very stressful trip to Nemours, I managed to secure parking, speed through check-in, ride the elevator, and have our named called with little fanfare. (thank you Lord) Now we wait in our tiny exam room for Nurse P. to come in and tell us what we already know (thanks again stupid gut).

Rae has epilepsy...

The seizures are starting in one part of the brain so it is considered a partial seizure. Since she's non-responsive this makes them complex seizures and it looks like (referencing the test) the seizure is moving (secondary generalization) to include both parts of her brain. We want to start her on Keppra (warning child may become irritable...whee!) and the dosage will more than likely have to be adjusted. Monitor her for the next couple of weeks to see how she is responding to the medication. She hands me a thick book about epilepsy, informs me Dr. H wants to have another MRI completed, some additional blood work and a follow-up with a colleague Dr. B after the MRI.

The rest is a giant blur... My mind went numb with information...

We went to the lab for a very uneventful blood draw, wove our way out of the clinic, packed everything back into our KIA, and drove to see Mimi. God only knows what I would do without Rae's Mimi... Then, after all the excitement, I drove to Toy R Us to buy a new toy only to discover that Rae had eaten her band-aid (I swear she eats everything she can get into her mouth). Fortunately, it didn't make it past the roof of her mouth (thank you again Lord). A little therapeutic shopping and it was time to go home with a sneezing Ernie clasped in her tiny, bruised hand.

Do any of you over react to something completely unrelated to what you're actually upset over? I hope I'm not the only one...

Friday, March 16, 2012

Still Shakin'...Act 2

If you haven't already read Whole Lotta Shakin', you may want to take a moment to catch up...

After winding our way through the parking garage and corridors of the hospital, we finally reach our destination...the children's hospital entry way, complete with giant crayons standing guard. We are thirty minutes early. I didn't want to risk some sort of administrative mix-up and be turned away. The lobby is almost everything you'd expect to see in a children's hospital with colorful play areas, reflective surfaces,  a stage (for those children with dramatic flair), a library (sssshhhh!), a play truck, and of course exhausted looking parents waiting to hear their name called by anyone wearing scrubs or a hospital badge. I approach the counter and wait... Finally, someone inquires why I am here.

Admin: "May I help you?"

Me: "We have a 2 o'clock appointment for a sleep deprived EEG. It was scheduled by Dr. H at Nemours this morning. It was kind of an emergency."

Admin: "Name?"

Me: "Rae Doe"

Then I wait some more while she makes phone calls and tries to verify that we're supposed to be here. <sigh> I hate this part. I would have been drumming my fingers on their countertop if I wasn't holding Rae.

Admin (on phone): "Do you have an appointment scheduled for Rae Doe? I don't see it listed. Uh-huh Rae Doe. Dr. H at Nemours. An add-on? Oh. Ok." Looking back up at me, "Could you please have a seat? We'll call you back in a moment."

<sigh> I really wish they would define "moment" better because what she meant was 27 minutes.

Now we wait again. Don't they know I have a sleep deprived, slightly cranky, baby on my hands? Come on people...just tell me you have the information and I'll stop worrying that you're going to tell me that you can't see her today. I'm a little frazzled here since her check-up with Dr. A turned into a medical emergency and she's probably having seizures. Oh well...I guess there's nothing I can do other than just wait... Argh! Well at least we are thirty minutes early.

Tick-tock, tick-tock...It's 1:57!!!

Admin: "Doe."

Me: (Finally!) "Yes, that's me."

Admin: "I need you to sign here releasing blah, blah, blah (so wasn't paying attention). It's a $300 dollar co-pay today."

Me: "Can you bill me?" (forced smile, come on give me a break we weren't expecting this)

Admin: "No." (complete with deadpan look on her face)

Me: (since you put it so nicely...whipping out my charge card) "Oh...okay." (at least I get reward points)

That's a lot of wires!
Now that all the pleasantry is over...time for the EEG. Up the elevator we go...Ding! I check in once again and wait...the waiting never ends. If you find yourself just starting your life in Amsterdam get used to do ALOT of it. Finally, a nurse comes to get us (just me and Rae...sorry Mimi) and we wind our way through the hospital corridors. We're led into a small room with a hospital bed, reclining chair (for parents), counter area & these (see pic) lying on one side of the bed.

Now I don't do well with the unknown...who does? More than anything though I hate it when someone has a chance to describe what I'm walking into and doesn't. Since this was an emergency and I didn't really have time to research when we were home (I had to keep Rae awake...that was a full time job by itself) I had no idea what to expect. That being said, the EEG process includes wires, glue, gauze, and tape. I laid on the bed with her while the nurse placed glue and receptors all over her head, my only job was keeping her hands out of the wires and her hair...epic fail...Rae's quick! In the end this is what my baby looked like.

It's a Baby Borg with the mumps.
She looked so uncomfortable.
Towards the end of attaching all the receptors Rae started crying. I laid in the bed with her patting her tummy and softly saying, "Sssshhhh, sssshhhh, sssshhhh." (she has always found that comforting) After a few minutes the forbidden sleep was no longer denied and she drifted into her dreamworld. Sometimes I wonder if she can walk in her dreams...I know she does in mine. Does it make me a bad Mom to hope that Rae has a seizure during the test so we don't have to do this again?"

Tick, tock. Tick, tock...

The nurse came in to check on us (which woke me up...oops!) She told me that if I noticed her having a seizure that I could press a button to mark it on the film and make it easier to located when its reviewed by the doctors. Okay, so now I have a job...which means no more napping for me. Unfortunately, we didn't have to wait much longer...Rae's eyes popped open with that glazed over look and her arms, legs, and head were all shaking... Damn! I pushed the button. It's what we needed to happen, but it hurts to watch her convulse like that and feel helpless the entire time.

Just after having a seizure and waking up.
I waited to see if she would fall back asleep, but she didn't so I stepped outside our little room to get the nurse. It was over. Now it was time for the clean-up. This is gonna get messy (it didn't).

Removing the receptors.
The dots are small circles of cloth and glue.
This is gonna be fun to get out!
I was informed that we had an appointment with Nurse P at Nemours the following morning to go over the results of the EEG. To clean the glue from Rae's hair we only needed to use warm water (and maybe some shampoo). We joined Mimi in the lobby, gave Rae a bottle and stated getting everything together so we could go home. This is going to be a long night for me and my gut was already telling me what it believed to be true. Sometimes I wish it would just shut-up! This day didn't feel like it was ever going to end.

Major BAD hair day!
After the days exciting events, we were finally home. On the bright side, the glue actually lathers up like shampoo and was very easy to wash out...much to my relief. The day did end. The results would be reviewed tomorrow, I would have something else to research and another symptom to add to the puzzle. One more step closer towards a diagnosis (hopefully).

*Part 3 coming soon....

Wednesday, March 14, 2012

Whole Lotta Shakin'...Act One

Might as well rip the band-aid off...

Oww, oww, owwwwww!

Rae is epileptic. I'd like to say that I'm in some state of shock or in denial about her most recent diagnosis, but I'm not. Instead, I have jumped off the high dive, in full on free fall, holding my nose closed with my fingers, waiting to be smacked by the hard, cold water and hoping for the best.

Here's the backstory:

Rae had tremors when she was only a few months old. I mentioned it to our PCP and he felt it was normal given the situation in which they occurred (usually right when she woke up). We were all fairly confident that she was having some kind of startle reaction to whatever environment she found herself when upon opening her eyes. Oops!

I later mentioned this again to our Neurologist (at six months), but once again he felt that was perfectly normal give her age and it was not anything to be too concerned about at this time. Double Oops!!

Months pass....

My husband was still concerned about the tremors and I was in some sort of denial and still believed that maybe (knock on wood) they weren't anything serious and still just some kind of startle response. Now I'm mentally flogging myself because I was wrong. My gut was right, but my actions were totally wrong.

It wasn't until I started talking to an employee of our local Babies R Us, whose daughter is epileptic, that I began to seriously doubt what we were actually dealing with and began believing she was having (gulp!)...SEIZURES! After I described what Rae was doing, the woman advised me to record the tremors and take them to the doctor. It would be easier to show them what was happening because unless she had a seizure while in their office or during testing they wouldn't know what was actually going on. That's when I started climbing the ladder of the high dive.

I went home, charged my video camera, dumped all previously recorded videos into my computer, made an appointment with Dr. A for the following week and waited. In order to ensure that I captured the tremors on video, I made Rae nap in our living room. During that time, I discovered that she was having these episodes way more often than I believed. Almost EVERY nap time she would awaken suddenly, get a vacant look in her eyes, and shake...all over. I wept.

After a few more videos, some minor editing, and uploading the compilation to my Nook I was ready for our appointment with Dr. A...or at least I thought I was. When he viewed my video he was instantly concerned, stepped outside to place a call to our neuro, Dr. H, and wanted to have an EEG done asap...(big gulp!) mind was screaming, "That can't be good!" In a matter of minutes, we were scheduled for a sleep deprived EEG at 2 that afternoon. Now I just had to keep her awake till then, which is usually not a problem since she hasn't been napping till 3 or 4, but of course today had to be the day that she wanted a nap.

The video is a tad long and the final clip is to show that it wasn't noise or touch waking her.

I make arrangements for Mimi, my Mom, to ride to the children's hospital with me so she could keep Rae awake. That worked perfectly until we reached the parking garage. We waited for like five minutes for a woman to evacuate her space. I swear she was twiddling her thumbs. That's when Rae chose to nod off...she was out in an instant (crap, crap, crap). I threw my truck into park, hopped out of the drivers seat, flung the back door open, desperately unlocked her 5-point harness (while Mimi was rubbing her face with a cold wet towel), lifted her out of the car and started swinging her in the air. I'm sure the three car caravan behind me thought I had lost my mind. Once I passed Rae off to Mimi, I took my place back behind the wheel and proceeded to beep my horn at the oblivious women in the SUV. I was never happier to see reverse light trigger. FINALLY!!

Well, much to Rae's displeasure. we made it to the hospital and she was still awake. Now we had to get past registration and through the EEG... All I can think while walking the plank is, "I sure hope I don't belly flop."

*Shakin' Part 2 coming soon...

Tuesday, March 13, 2012

Sincerely Happy for You

I have had many years to try and learn the art of being genuinely happy for others when inside I am collapsing from the weight of my own burdens and struggles. It is not easy and more often than not I probably fail...epically, but I try so that has to be worth something...right? I'm sure at some point in time you have all been there. Heck, awards season is probably the best example of being happy for someone else. You sit in your seat, smile (make sure it reaches the eyes because that's a dead giveaway), clap your hands (not too fast, but not too slow), offer a hug or handshake, and maybe (if you're like me) go home and collapse on the floor of your shower while hot water washes over you taking your tears down the drain.

Just a few minutes old.
If you're the woman who desperately wants a baby, watching while every woman around you has a baby bump, waiting, crying inside, having tests performed, and not understanding what you did wrong. I've been there with you. I've cried those same tears and yelled at God (literally...I could so not be Job) for what I felt was some cruel joke. I plastered a smile on my face and, with a heavy heart, played shower games, listened to baby names, and mustered up as much happiness as I could manage. All the while, hoping that it would be my turn took us nearly two years and many emotional meltdowns (all mine).

If you're the mother sitting on the park bench watching children toddling around a playground, climbing steps, sliding down slides, and running to their parent(s) when they fall  (as they inevitably do), arms stretched out, demanding the comfort only they can offer. The whole time you're sitting with your own child in a stroller or on you lap...waiting, wondering, and anxious. I am currently there with you. Feeling those tiny pin pricks in my heart. Dreaming of the "someday" yet to come and dreading the question I always seem to ask the universe, "When will it be her turn?" Deafening silence is the universes reply because there is no answer.

At the park.
I am the mother clinging to any sliver of hope within my grasp. My heart longs to chase Rae around the house because she doesn't want to put on her pajamas. I want to see her run barefooted in the hot sand, the wind blowing her champagne hair, wildly laughing while chasing seagulls into the sky. When I was pregnant, I had so many dreams of what my daughter's life would be like...and now those seem more like fairy tales.

I have yet to master the art of hiding this particular sadness from those around me. I try to smile, but I know it never fully reaches my eyes. There is no twinkle. An air of sadness lingers over me. It is during those moments of uncertainty that I hug Rae just a little too tightly. I seek comfort in looking at the curls of her hair and brushing them from her eyes because then I don't have the strength to look at the person/friend sitting beside me. If I feel really uncomfortable, I attempt to dodge any potential discussion by commenting on how well their child is _______ (insert random milestone) or I start talking about something completely unrelated. I'm sure they all see through these defense mechanisms I have developed. Just call me Mrs. Cellophane.

Slow & Steady...
All that being said... I am also the mother that wants you to know that I am truly happy for you if you are one of those mothers playing on the field. I'm happy that your child has met and continues to meet their milestones. That those precious moments of their first steps are intact. Their first words spoken with loud exuberance. That you now have to chase after them when they catch you with your guard down and run like an escaped prisoner seeking freedom (usually the street or parking lot). Please keep that in mind when you see me. Don't censure your own joy because of my heartache. I may want to celebrate with you. It's what friends do. It's what people should do.  And please don't take it for granted...

As for day I will be one of you. I will no longer be sitting on the bench waiting my turn. I just hope I always remember to be sensitive to those that find themselves in a similar situation that I now find in Amsterdam and trying to find my way out of the airport.

Friday, March 9, 2012

Genetic Gumbo

No doctor appointment quite prepares you for an appointment with a Geneticist (Dr. M). This doctor is our final hope, our last stop, the end of the line in terms of our search for a cause to Rae's Hypotonia. They don't just ask you the usual questions...nope...they want as close to accurate accounting of your family medical history. No detail is too small and no family member is too distant. If you even have an inclining that your third cousin twice removed on your mother's father's side of the family may have had something remotely similar to what they believe your child has they WANT to know. It's exhausting!

Genetic Gumbo Recipe:
  • Diabetes - we're stubborn and still eat as we please...most of the time.
  • Heart Disease - double dose.
  • Bad Knees - both my Great Uncle and Dad are bionic and trigger metal detectors.
  • High Blood Pressure - some of this is self inflicted...what can I say we're wound a little tight.
  • Strokes - "Anymore, anymore...damn it!" was about all my Great Aunt could say after hers...well that and singing hymns, go figure.
  • Hip Malformation - can be painful and makes me and my Dad walk funny at times.
  • Penicillin Allergies - lost an Uncle because of this allergy.
  • Arthritis - are you eating celery or were those your knees making that crunching sound.
  • Gall Bladder Issues - that's right we're a gall-less family.
  • Kidney Issues - stones...enough said.
  • Fibromyalgia - only one person to my knowledge.
  • Dementia/Alzheimer's - this is why I journal because I'm sure I will forget everything at some point.
  • Miscarriages - none for me thankfully, but she asked about family history so in the pot it goes.
  • Seizures/Epilepsy - distant, but apparently relative.
  • Psoriasis - which she thinks Rae has on her eyebrows and maybe scalp (yippie).
  • Ankylosing Spondylitis - an obscure weird genetic spinal thing where the bones slowly fuse. together and you can't move. In my Dad's case it's his neck.
  • Macular Degeneration - eventually causes blindness (I wasn't aware of this at the appointment).
Simmer for 20-30 years and WALA! You have a member of my family.
I know I missed a few ingredients, like Cancer (at least four cases), but it honestly slipped my mind (How does that happen?) and I keep trying to reach out to other family members to find out if there is something we all have dealt with, but don't realize it as a possible genetic thing. Dr. M also asked about my pregnancy and delivery. Which was well for lack of a better word...boring. Don't get me wrong the pregnancy was exciting and delivery (via C-section) was a thrill since our wait for Rae was over, but it was a very uneventful pregnancy. Hallelujah!

After playing 50 questions, it was time for her to give Rae a physical assessment, which was equally as thorough as her questions. She checked Rae's reflexes, her palms, her eyes, her ears, the bottom of her feet...basically every teeny square inch was inspected. Dr. M noticed that Rae responded to some simple commands like, "Do you want the light thing-a-ma-bob? Reach for it..." and of course she did. Rae already has listening to others down better than listening to her Mother. I can't even seem to get her raise her arm(s) (I'll settle for one) when she wants to be picked up.

Once the exam was completed, Dr. M went over how she would like to proceed...with, you guessed it, more testing. What a surprise. She informed us of  Pompe disease (there are so, so many possibilities) that she wanted to test for and apparently Duke University was doing a free study (Yippie! No bill!!). We took our lab orders and went for yet another blood draw. This time I made her Dad hold her because, honestly, I was really tired of always being the "bad" guy when it came to the not so fun stuff. Much to my surprise, dismay, irritation, and thankfulness Rae didn't even react to the sting of the needle. Grrrr! Don't get me wrong, I am happy she didn't have an emotional meltdown, but of course she didn't even make a peep when her Dad was the one holding her arm while it's being poked.

There's no crying in the lab...
Just one more...

All done!
Bandaged and no worse for wear, we strapped Rae into her stroller, made our way to the parking lot, loaded up and headed home (after grabbing lunch at Firehouse we were starving!). It felt like we were there all day, but it was only a couple of hours. Now the real waiting begins...we don't get all of the results until April 26th!

Thursday, March 8, 2012

Sun Beams: More Little Victories

We have a couple of exciting developments to share...

Two weeks ago, while reading Goodnight Moon to Rae, I noticed that she started helping me turn the pages, which is a great improvement over trying to eat the pages. I couldn't wait to show her PT.

Then this past week, while my Franklin and his, then girlfriend, Rae (now fiance, Yippie!) were visiting she taught our Rae how to "high-five." This nearly brought me to tears because it's the first hand gesture that she's done and it's been consistent (four days in a row and counting).

I still tear up thinking about those precious "high-fives" and how long I've waited to see her use her hands. We're so grateful for these little victories because they keep us focused on all the progress Rae has made and the progress we know will come in time.

Thursday, March 1, 2012

Lazy Baby

From time to time I am guilty of telling my daughter she is being lazy about one thing or another. Usually, it is when she doesn't want to hold her own bottle. I know Rae's abilities better than most and definitely better than strangers so I feel like my use of the word "lazy" doesn't hold the same connotation as some random person. Honestly, I probably shouldn't say it to her at all, but that is not the point and I am trying to remove that particular verbiage from my speech.

This being said...

The other day we were sitting in the waiting room of Rae's Pediatrician, Dr. A, and she was happily laying down in her stroller. We were there for a standard check-up, which was a nice change of pace, and she was thirsty, but didn't want to put any effort into holding her bottle. I'm pretty sure that she believed if she keep playing the "I'm too weak" game I would eventually cave in and hold it for her. Ha! She was so wrong. I refused to play her game and just kept telling her that she was capable of holding her own bottle.

During this battle of wills, an elderly woman started shuffling our way. As anyone with a baby will tell you their cubby, pinchable cheeks seem to have a gravitational force all their own and it seems no one is immune to its pull. So, it was no surprise that she peeked into Rae's stroller and started a conversation with me. Unfortunately, while she made her way towards us she overheard the one sided discussion I was having with Rae about her unwillingness to hold her own bottle.  So, I immediately started bracing myself for the inevitable questions and I was not disappointed.
EW: "How old is she?" 
Me: (Yes, I know, I know she's old enough to walk just go ahead and ask) "16 months." 
EW: "Oh, well she should be more than capable of holding her bottle."
Me: (*sigh*) "No, it's okay she has some difficulty and doesn't always want to." 
EW: "Is she walking?" 
Me: (Deep breath, you knew she was going to ask) "No, not yet."
EW: "Well, she's just being lazy."
Me: (Did I just hear that? Seriously?? Geez! Deep breath, she doesn't know any better. Just smile and nod. If you correct her it will be awkward and then she may ask more questions.) *uncomfortable smile and gentle nod*
EW: *quietly shuffles off to an empty seat*
What I actually wanted to say in a slightly snarky tone: "No she's NOT lazy. She has a medical condition. Thanks for the reminder." Sometimes these conversations are like having alcohol rubbed into an open wound. Burn, burn, burn! Unfortunately, at the time, I lacked the ability to verbalize any response much less one that wouldn't be considered rude (no point it both of us being impolite). So I swallowed my words, bit my tongue, offered a slight smile and nodded. I do that a lot.

Sometimes, it's because I don't really want to open a dialogue about Rae's Hypotonia. I may be in a very vulnerable place that day and tears will appear with the slightest provocation. Other times, I know they don't intend any harm in their questions or comments and by pointing out their social faux pas it makes every one uncomfortable. I don't like making people feel uncomfortable (intentionally or unintentionally). More often than not, I know that by stating Rae has Hypotonia it will solicit any number of questions to which I usually have no answer, advice that I really don't want, or pity. I HATE pity.

I don't want to be pitied. I have a beautiful, smart, champagne haired, blue eyed daughter, with a lovely countenance, sparkling smile, impish grin, even temperament (most of the time), contagious laugh, and a crazy sense of humor (she's into physical comedy). She has the most pinchable, dimpled cheeks (of course I'm biased) and when she gazes at people (even strangers) she makes them feel like they are the only important person in her world (except for Moe-Moe the monkey or Elmo).

These are the reasons I didn't correct the elderly woman's assumption that Rae was "just being lazy" and then ranted to my support team.  Later that evening, I sat in my living room repairing the tiny fissure she created in my ostrich egg.