Myonical Bionical

Sooo…. We had a bit of a scare here recently… 

Miss Maddie-Me has been hitting all her milestones just peachy but about a week and a half ago I noticed she would do something odd.  At random moments her arms would stiffen and shoot out into the air or her whole body would stiffen and jerk back.  It just wasn’t “normal” looking behavior and had us concerned enough to try to catch it on video to show to our doctor.  We had our doctor and another doctor look at it and while there was a range of possible diagnoses, the one that kept coming up was “infantile spasms.” 

If you aren’t familiar with the term “infantile spasms,” you might be shocked at just how serious this seemingly innocuous sounding problem really is.  We took to Google and were subsequently terrified at what we might possibly be facing.

Our next step was to get an EEG for Little Miss so we waited for the call from scheduling.  Meanwhile, it was the weekend, and Maddie had an episode that lasted far longer than before and seemed to be having many more than her “usual.”  We made the decision to drive to our nearest children’s hospital ER that had pediatric neurology services.

We arrived to the busy ER about 2.5 hours away and were in a room and seeing the doctor within 30 minutes. Again, we were told we needed an EEG and they could perform one and have a neurologist see us the next morning… so that’s how Miss Maddie’s first hospital stay was written in the books.

Our EEG was in the morning – it was a traumatic experience for all involved - and we nervously awaited the results.  The neurologist came to see us and the first thing he said was “Her EEG was completely NORMAL.”  I think our first words were “Thank GOD!”  Or at least that’s what I said in my head… He went on to then say he wasn’t exactly sure what we are dealing with but that he is pretty sure it wasn’t in the epilepsy family.  Of course since Mads didn’t have any spasms during the procedure its hard to tell exactly what happens but the “hypsarrythmia” in “infantile spasms” would have shown up if she had that.  Our differential diagnoses currently are: Benign Myoclonus of Early Infancy or Sterotypies.  We think the myoclonus description sounds exactly like what she does. 

So what’s the plan of action?  We have to log any events she has and possibly capture more video and return to the neurologist in May.  Depending on how things are at that point, we might have a 24 hour video EEG ordered. If we notice any regression in her developmental milestones or progression in the severity of her episodes we have to call much sooner.

We would appreciate all your thoughts and prayers as we work to figure out exactly what is going on with our precious little girl!

{Belated} Birthday Update: Eight Months!

Birth Deets: 21.5in, 8lbs 12oz 
6 month Deets: 16lbs 7oz, 26.5 inches
Height: no appt this month
Weight: no appt this month… was 17lb 3oz at a sick visit
Nicknames: Maddie, Miss Me, babydoll, Little Baby Wee, Silly Wee, Mads
Exciting Events: Mid February to mid March wasn’t particularly exciting as winter raged on and we stayed in out of the cold.  Maddie also caught quite a bad cold and proceeded to share it with mommy, daddy and grandma and grandpa H!  Hey… at least we are teaching her to share from a young age?  We did celebrate our very first Saint Patrick’s Day… Miss Maddie is definitely our little pot of gold!  And we had visitors from Michigan!  We did a little sight seeing with them as things started to thaw out around here a bit.  Mads even did her first stint on the AT! This month she tried toast and a few other big people foods straight from the table.  She loves sharing mommy’s oatmeal in the mornings.  We’ve also started Maddie/Mommy time where we spend some time playing and watching a movie (mostly mommy watching a movie and playing with Maddie) but just spending time with “us girls” while daddy gets to watch sports or play a video game or two. One of Maddie’s favorite things in the world is the cat – Tills. She will pull on his tail or his ear or just handfuls of his fur and he just takes it all in stride. She sometimes will be so excited to see him that she will barely touch his fur before bursting into a huge grin and giggles.
What She Does: Maddie can pull herself up to a standing position like its no big deal. Yup, been doing this forever mom!  She doesn’t crawl but will roll or fall forward to get to what she wants.  I think she’s planning to just skip that whole crawling thing and will be walking soon enough! She is already getting good at walking from one place to another while holding on to someone’s hands. She still has no teeth but that doesn’t stop her from gnawing on her toast!  She says “Mom” all.the.time.  Like literally it’s the only thing she says 24-7. Except when she is baby rapping… still hoping to catch that on video because its hilarious. She’s recently picked up on waving and will sometimes display this new knowledge if you are lucky.  And mommy’s favorite new skill… the head hugs!  When Maddie gets super excited to be with you she will press her little noggin against yours really hard and rub it back and forth with a smile on her face. Sometimes she adds grabbing your ears to pull you closer or noshing on your nose for good measure.  Its quite possibly the cutest thing ever! <3

Comparison Shot

Lots of people say Miss M looks like her mommy so I wanted to do a little comparison shot for y’all!

Yes, we are both little cue balls… mommy didn’t have hair until she was a year!  Both have blue eyes and little ears that stick out.  But I think little miss definitely is the cuter of the two baby shots…I may just be a *bit* partial though! 

Happy Friday everyone!
(ps… anyone else notice the scary doll I was playing with?!?)

{Belated} Birthday Update: Seven Months!

Birth Deets: 21.5in, 8lbs 12oz 
6 month Deets: 16lbs 7oz, 26.5 inches
Height: no appt this month
Weight: no appt this month
Nicknames: Maddie, Miss Me, babydoll, Little Baby Wee, Silly Wee, Mads
Exciting Events: As we settled down from Christmas and New Year’s, we settled into the deep freeze that took over this winter. Brrr!   We got out of the house and went to a chocolate festival that benefitted the Make a Wish Foundation, took a weekend trip to Knoxville, and celebrated Maddie’s first Valentine’s Day.  Maddie and mommy baked a cake for Valentine’s day and daddy may or may not have let Maddie have a tiny little bit!  She’s tried quite a few other foods but still prefers her milk. Along with avocado, banana, and applesauce, we have tried… peas, green beans, sweet potatoes, pears, oatmeal.. and I’m sure I’m forgetting something in there.  She pretty much has decided she hates bananas but pears are where its at!  She also loooooves sweet potato!

What She Does: Maddie is still working on becoming mobile.  She will lean forward while sitting and stretch as far as her little body allows but her big noggin tends to pull her over before she can get anywhere.  She will roll and pull herself around her play quilt to get to her favorite toys and sometimes pulls herself up onto her knees but we’ve seen no actual crawling movement yet.  She can also pull herself up to a half standing position if you place something like a remote or cell phone just out of her reach!  She is definitely strong enough to hold herself up in a standing position and takes steps when holding on to your hands.  She still has a silly toothless grin but she faked us out with a tiny white bump that lasted about a day!  She still likes to teethe on anything she can put in her mouth but actually takes drinks from her sippy cup now.

Birthday Update: Six Months!

Birth Deets: 21.5in, 8lbs 12oz 
4 month Deets: 14lbs 2oz, 24.8 inches
Height: 26.5 inches
Weight: 16lbs 7oz
Nicknames: Maddie, Miss Me, Bay, babydoll, Little Wee, Silly Wee, Mads
Exciting Events: This month was really busy!  Besides marking half a year on this earth, Miss M was baptized, took a trip to Michigan and celebrated her very first Christmas!   While in Michigan, she met quite a few relatives for the first time – including great grandma and grandpa K!  She celebrated Christmas and loved opening presents.  Well… she really loved the wrapping paper that she tried to chew on.  She was blessed with way too many toys and more clothes than she can ever possibly wear in the upcoming months – but she will for sure try! It was a whirlwind week long trip and she left with her very first cold… that part wasn’t quite so fun or exciting.  I will say that Nosefrida The Snotsucker Nasal Aspirator was a complete and total lifesaver! Yes, there is a gross out factor involved but really, those little bulb suckers did nothing to help and this allowed her to breathe.  Maddie also took her first bites of real food this month… she’s not too keen on that quite yet though.  So far she’s tried avocadoes, bananas, and homemade applesauce.  Applesauce is her favorite by far!  She usually has 3-5 spoons and is done so her diet really hasn’t expanded past breastmilk all that much but we will be trying out more foods in the coming weeks!
What She Does: Miss M is an experienced sitter now!  She loves to sit and play on the floor and only occasionally topples to one side or the other while reaching for an object. She also loves to stand and will lean against items like footstools or the back of the couch and stand on her own for small stretches of time. She will even take steps across the room while we hold her arms!  Her toes are an endless source of entertainment and more often than not end up in her mouth – totally gross – and socks never last more than a few minutes at a time.  Yes, you can follow us around the grocery store by following the trail of baby socks!  Maddie loves music, and we have found that the piano and drum apps on our tablets are a fun distraction once in a while.  She still has no teeth but she acts like she's teething… oh joy!  She loves chewing on a sippy cup when her teeth really start to bother her.  So far she hasn’t really learned how to drink from the sippy cups but she does get some baby water out on her shirt!