I Asked the Question...

Last night, for me, everything came crashing down.  Tessa is doing better and we are thrilled...we are seeing improvements with each passing day.  And maybe that's why I asked the question...now that she is improving, maybe my mind has a little more room to think/question.

The question?
......

What if she hadn't been right there???  The emotion and fear was overwhelming.  I was re-living the moments from Friday night during the seizure, that she wasn't taking a breath, when she should have taken a breath.

What if we hadn't laid her down in her nap nanny right there in the kitchen with us Friday night to fall asleep? What if we had put her in her room, in her own bed, to sleep that night?  The seizure was silent.  I only noticed something because I was sitting right there and saw her eyes pop open after she had been asleep a good 30+ minutes.  We only reacted because she was silently gagging and it seemed as if maybe she was trying to cough or maybe choking.

As I was on the phone with the dispatcher that night, he had me kneel down by her and say "now" every time she took a breath in.  I started and went consistently for a bit....and then a break....I don't know how long the break was, obviously nothing serious in the whole scheme of things...but the way it felt in the moment was long enough to think...to question...if she was going to take another one??

What if she hadn't taken another breath?  What if we had put her in her room that night and never knew what was happening?  What if???

How do you experience something like that and not experience fear?  How do you not experience moments of complete despair imagining a different outcome if we hadn't been right there?  It's a lot. It had me pleading with time to stop and stand still while I tried to process it all.  I told Darin through my tears last night that I know we are not in control.  God has made that so powerfully clear to us, time and time again, and we are so thankful that we're not.  But the fear...the emotional toll an experience like that can take on your heart and soul...it can feel impossible to overcome.

It can feel impossible and then I am reminded by the One that loves us and created us...that the plans He has for us are good.

Jeremiah 29:11 New International Version (NIV)

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Isaiah 55:9-11 New International Version (NIV)

9 “As the heavens are higher than the earth,

    so are my ways higher than your ways

    and my thoughts than your thoughts.

10 As the rain and the snow

    come down from heaven,

and do not return to it

    without watering the earth

and making it bud and flourish,

    so that it yields seed for the sower and bread for the eater,

11 so is my word that goes out from my mouth:

    It will not return to me empty,

but will accomplish what I desire

    and achieve the purpose for which I sent it.     

From Jesus Calling yesterday:

Approach this day with awareness of who is boss.  As you make plans for the day, remember that it is I who orchestrate the events of your life.  On days when things go smoothly, according to your plans, you may be unaware of My sovereign Presence.  On days when your plans are thwarted, be on the lookout for Me!  I may be doing something important in your life, something quite different from what you expected.  It is essential at such times to stay in communication with Me, accepting My way as better than yours.  Don't try to figure out what is happening.  Simply trust Me and thank Me in advance for the good that will come out of it all.  I know the plans I have for you, and they are good.

The exhaustion from the last week and a half makes it very challenging to process anything...especially the intense emotions and the fear.  But what I noticed in scripture last night was that there was nothing but peace and clarity in God's word.  He will accomplish what He desires and His desires for us are good.  His plans include hope and a future.  

The clarity in that message wins the war over fear.  I am human, so the fear will exist...but the critical point is choosing to adjust my perspective so that my thoughts and emotions are ruled by these very promises in God's word.

~Whitney

Sunshine and Smiles!

Darin and the kids had the day off yesterday and Tessa had a really good day!

After Friday, Saturday and Sunday were so rough, it was incredible to see these precious smiles on our Monday evening walk!

I think Tessa really enjoyed the fresh air and the beautiful evening and I loved her precious and entertaining smiles and giggles while we walked!

Recovery can be such a slow process and there wasn't a minute of this that I took for granted.

Tessa's smiles help me navigate how she is feeling...it was a gift after such a very long weekend!

~Whitney

R&R

Yesterday and today we rested.

We were thankful for Tessa's appetite for Biscuits and Gravy!

And we rested some more.

 ~Whitney

Grand Mal #3

These pictures were taken around 9:00 pm Friday evening...

 little miss adorable!

at 10:30 things suddenly changed and by 11:15, this was my view. 

Tessa had a really rough week last week.  Last Sunday she experienced about an hour+ of throwing up.  We kept her home from school on Monday and she had a good day.  We chalked it up to a less-than-24 hour bug of some sort.  

She went to school on Tuesday, and then by Tuesday evening she was dealing with lots of drainage and coughing.  With limited trunk and neck control, these types of experiences take an incredible toll on her little body.  Her nights and mornings were the worst.  Darin and I spent our nights doing everything we could to try and keep her comfortable...not an easy task.  By the afternoons, she would have perked up after clearing most of the mucus out, but then it would start all over again every night when it came time to sleep.  It was of course exhausting, but also devastating to be so limited in the ways we could help her.  

Darin kept Tessa home on Friday in hopes to give her an extra day to her long weekend to help her get to feeling better.  She had a really good day on Friday.  She had an afternoon mapping appointment at Hearts for Hearing that went well and overall, did great that day.  

We had a later-than-usual evening on Friday but as you can tell from the pictures above, she was all smiles and giggles even up until 9:00 p.m. at night.  Shortly after those pictures were taken, she had all of her nightly meds and was fast asleep in her nap nanny.  

Then around 10:30 we noticed something was off.  She had opened her eyes and appeared to be needing to cough or like she was choking or something.  Then she started spitting bubbles out of her mouth.  It didn't take long for Darin and I to realize that she was having a very intense seizure.  Once Darin had picked her up and was patting her back, we could see in her eyes that she was not responsive at that point.  We immediately took her into our room and laid her on her side on our bed.  By 10:34 we were administering her first dose of Diastat.  We gave it the two minutes that we give it to work, and as she continued to struggle to breath, we immediately administered the second dose.  

By 10:36 I was on the phone with 911.  Beginning to end, we think the seizure lasted between 15 and 20 mintues.

The ambulance arrived promptly and Tessa was slowly beginning to breath more normally.  She was still very out of it...not only because of the seizure, but now also due to the amount of medicine we had just administered.  Our protocol to call 911 is due to the risk of respiratory failure after administering that much anti-seizure rescue medicine.  It's not that we don't think the seizure will stop after two doses, so far it always has, but it's because we need medical professionals involved with monitoring her vitals after having to introduce that much medicine to her system.  We also have no idea what things would look like if the seizure didn't stop after the two doses, or if for some reason she began seizing again even after the max dose of Diastat.

Although this is something we could never anticipate, we weren't completely shocked by the grand mal.  It was a little surprising considering how good of a day Tessa had on Friday, but overall, she had been through so much in a week....exhaustion was an understatement.  Her little body was spent and in such a weakened state.  

Tessa's vitals remained stable.  She was breathing well on her own.  While we were at the hospital they ran a bunch of different tests to help determine if there were any underlying issues/illnesses that could have contributed to the onset of the grand mal.

They did a blood draw to check her organ function and blood cultures.  They checked for a UTI, they swabbed for the flu, and did chest xrays to check for pneumonia.  Everything came back looking okay, except that the lung xrays did show signs of viral bronchitis.  This made perfect sense after the week she had, but we were so thankful that no bacterial infections had set in and we weren't dealing with pneumonia.

It was a very long night.  The ER doctor consulted with Tessa's neurologist and after all of the testing they ended up administering Keppra in her IV and gave us instructions to increase her daily dose of Keppra from 5 mLs twice a day to 6.5 mLs twice a day.  We were on our way home by 4:30 a.m.

Saturday and Sunday we rested.  Tessa was still dealing with the viral bronchitis and we were still doing everything we could to keep her comfortable.  

~Whitney

What Dreams are Made of

SJN Moments and a Dream Coming True!

This is huge! Tessa is so incredibly picky about who she'll take food from....took awhile for her to trust her own brother. Tells me so much to see her taking her snacks from her friends! One feeding and one wiping her mouth and offering encouragement :)

Needing a little extra sleep time in the morning, but that doesn't stop her little friends from reading to her! Melts my heart.

This is what I call an ADORABLE little girl's club. So cute!

And this! So precious. Sweet lovins

~Whitney

Tessa's Recliner

Tessa's new recliner is a huge hit!! 

So happy to have a fun big-girl option for her to snuggle in!

~Whitney 

Precious Moments

We've had lots of precious moments over the last week or so!

Grandma and Grandpa braved the weather and came to hang out for New Years day

We had dinner at IHop and lots of fun during their short time here :)

 We had lots of fun dog-sitting Apple and she seemed pretty fond of Miss Tessa during her stay ;)

Parker always helps take great care of Tessa!
There's just something about these two these days.  Parker can turn Tessa's cries into laughter almost immediately.  I'm so incredibly thankful for the bond that these two share!

Tessa got an evening of pampering over the weekend.  I cut about 3 inches off her hair and we even took the time to round brush blow dry and style :) I've never done all that before and it was lots of fun
(for me anyway ;).
I'm not sure it's quite Tessa's definition of 'pampering', but she humored us! 

It was so worth it to capture these incredibly beautiful and natural pictures of her :) 

Look how BIG she is!!

We are so grateful for what glasses, headbands and cochlears allow for her....but man does her natural look make me long for perfect hearing, eye sight, head control, and complete physical independence. 

 It didn't take long before the ponytail was necessary,...just ask Darin! ;)

But this man is so sweet and (fairly) patient with my requests to 'try' different things.  Holding Tessa up and steady during a round brush blow dry was no easy task.  Then being ask to hold her up even longer and more steady while I tried to style and then take pictures of the cuteness in front of me... no.easy.task.

There's probably a reason why I don't try different things too often...most of the rest of the evening was spent imagining Tessa up walking and playing around.  Wondering what all she would be doing as a typical 4 1/2 year old little girl.  When she isn't wearing all of her 'gear' it makes me wonder what life would be like for her if she didn't need any of it at all.  A natural part of this imagining is sadness, but God is so faithful to turn that sadness so quickly into joy and celebration for exactly who Tessa is and the fact that we are the ones that get to love her, care for her, and pamper her :)

And then tonight this happened!

One of Tessa's very first intentional hugs.

This has got to be one of my most favorite pictures of all time now.  Darin was carrying Tessa to load her up in the car so we could to head to the store.  On his way out the garage door I heard this very excited "Aww" come from Darin.  He was grinning from ear to ear and said that Tessa had her arms clutched around his neck hugging him the whole way to the car.  When he opens the door to put her in and I saw those smiles on their faces, I of course grabbed my phone!

And oh my goodness, the moment captured is the best.

I truly think Tessa could tell by her Daddy's voice how excited he was about what she was doing.  She didn't want to let go...I don't think either of them ever wanted her to let go ;)

I still can't believe I caught the moment on camera.  I could sit and look at this picture all day.

A first hug around the neck...such a precious moment...one we will never forget.

~Whitney