Seizure and Updates

A grand mal seizure was not on the agenda for last Thursday night.

It was hard, emotional, and I may have ridden in the ambulance with her... but it's her daddy that's getting mad props from paramedics, doctors and nurses for Tessa's most spectacular setup!! So thankful she was stable and resting well during transport and our trip to the ER. 

Determining the culprit behind this nasty seizure is another story, but we were so blessed to have amazing professionals help us throughout the evening.

Things can change so fast. Thankful for incredible emergency and medical professionals that helped us navigate last night's seizure. We are resting and recovering back at home today. We got home in the middle of the night after everything checked out at the hospital. Thankful for no underlying illness, but ready to sort through other potential factors. Thank you again for all of your thoughts and prayers.

Tessa Wednesday to Thursday

Wed.

Thurs.

my exhausted mom look :( 

always such a completely helpless feeling...and so many tears cried

Tessa's neurology appointment went well. Her doc has always been amazing and we got some much needed clarity. We are going to up Tessa's rescue med dosage. It took us a little too long to recognize this last seizure, and unfortunately, the longer you wait to administer the meds...the harder it is for the meds to work. Lots of stress when a seizure lasts close to 40 minutes :( But now we have experience with another kind of seizure and we'll hopefully feel more prepared next time. It's an isolating place to live, so we can't express how much your prayers and encouragement have meant to us!! 

We had some entertaining family shenanigans to help ease the weight of a heavy appointment.

When you're a mama and you're still in a bit of a state of worry about your girl...and her sweet Para sends you a video and pics and the timing couldn't be more perfect.

The message: "This girl... she rolled herself over and started doing push ups😂😂."

Little Miss Mighty knows how to show her mama she's ok 😉 <3 :="" and="" back="" day...and="" each="" gaining="" her="" more="" nbsp="" ok="" p="" s="" she="" strength="">

Well, actually more than ok...I mean she's doing push ups for crying out loud! 

~Whitney

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

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

Catching Things Up!

It has been a busy busy couple of weeks for us, so now it's time to catch things up!

After doing the 5K without my sweet Tessa...I am now determined to do them with her!  We will be spending lots of time together walking & carrying and walking & pushing.  Parker has lots of fun pushing her too...he justs gets a bit out of control sometimes ;)  

4/27/2014

Last Tuesday night's baseball game was a cold one!  Tessa doesn't mind the cold (she's a lot like her mama), so we went out to the game and we buddied up as a family!

4/29/2014

Parker was shivering and complaining about how cold and windy it was, and Tessa would just laugh.

Her grin in this picture cracks me up!  Stinker!

Last Thursday morning I went in to kiss Tessa goodbye before I headed to work.

She was so peaceful, so beautiful.

5/1/2014 a.m.

Thursday was an exceptionally hard day for Little Miss.  Now that it's all said and done, we realize she was seizing off and on from about 11:30 a.m. to until about 3:00 that afternoon.  She wasn't sick, that we know of, so it was very out of the blue.  By about 4:00 that afternoon, Darin had gotten her home and gave her a Diastat per doctor's orders.  We needed to slow the frequency of the cluster seizures and help her catch a break.

So I left my sleeping beauty that morning and came home to sleeping beauty that evening.  It was so hard to know she had such a terrible day and to not have been there with her through it all.  I knew she was in great hands...but as her mama, it was tough.  I did get some time with her later that evening before she went to bed again...moments when you take it all in...the whole world stops...and you have incredible clarity about what matters in this life.

by 5:00 that evening

Saturday was a beautiful relaxing day and Parker and I had our first sewing session!  No, I'm not teaching him...he's actually helping me learn ;)  He is great at instructions and loves figuring things out...so, we put on some YouTube videos and got busy learning my new sewing machine.  

I'm looking forward to making things for Tessa, headbands, onesies, etc. and also just experimenting and being creative with stuff for our family (assuming I ever get the hang of it ;) !

When I first ordered the machine I had no idea how excited Parker would be!  I am really looking forward to sharing this fun time with him, hopefully for years to come :)

5/3/2014

Then we had family pictures Saturday evening.  This picture below is literally probably the only one we got of Tessa smiling...and it took tons of effort to get this one smile...and only captured it on my phone.  I'm sad for how much that speaks to how incredibly disruptive seizures are in her life right now.

5/3/2014

And here's our handsome man!

He was so helpful and always has such a fun time smiling for the camera :)

We had dinner out after pictures and Little Miss was showing off her big-girl-cup holding skills!

Darin has been working with her to see if she can start holding without handles...so far so good :)

Rocky got groomed at PetsMart on Saturday...and him and Parker have been inseparable ever since.

These two have shared their lives togther!

Sunday afternoon we finally got around to planting some flowers!!  Yay!!  Last year when we moved in, working in the garden was the least of our worries ;)  So this year, it's fun to be settled and spend some time making things pretty.

It was really hot on Sunday and Tessa was not enjoying being outside...so my sweet husband did all the digging and all the planting.  That's the way things go with us most times...we would love to get to do everything together, but tending to the kiddos definitely takes priority.  So, I cleared the weeds out of the flower bed and lined everything up and Darin did the 'heavy' lifting :)

While Darin finished up the planting, I had some time to try on our new Boba Air carrier with Tessa!  This carrier is 100% Nylon, so the plan is to try and use it in the pool this summer to swim together!  I'm really excited about it and I think Tessa will be too once we're in the water.  

Here's hoping!

Monday night was date-night Thunder style!

Darin and I hadn't been to an OKC basketball game together in a couple of years...hard to believe!

I put my name in for some company tickets and wal-lah!

We had incredible seats...and even though the Thunder lost, we had so much fun.

We don't get out near enough...and it was so good to laugh, cheer, dance, and just enjoy each other's company for the evening.

It was a really late game and we couldn't have done it without some dear friends that were willing to keep the kids.  And we actually made successful transitions from picking up, to putting in the car, to getting out of the car and putting into bed.  

This was them when we pulled in the driveway :)

Tuesday was a big day!  We had Tessa's long awaited follow up appointment with her Neurologist, Dr. Norman.  She was waiting like such a big girl.  She wasn't thrilled with all the pictures I was taking, but she just looked so stinkin cute.

Here is the neurology update summary:

Our appointment went really well. We will be adding a maintenance seizure med called Keppra to Tessa's daily meds. We will wean Tessa onto it over the next 2 weeks until we reach the full target dose. Then we will try out the Trileptal/Keppra combo for awhile, then probably try and wean her off the Trileptal to see if the Keppra can maintain things for her. We will also now have Clonazepam on hand for the days she deals with the shorter cluster seizures, and then will still have the Diastat for the prolonged 2 minute+ convulsive seizures. Tessa's doctor was able to help confirm the seizure activity in the videos we've gotten since November. We also discussed some little episodes Tessa has been having that are too short to even catch on video...and those are potentially what they call Epileptic Spams. The doctor confirmed that we have definitely experienced a pretty big shift and cooresponding learning curve in the evolution of Tessa's epilepsy. But, we have a plan that we feel really good about it, and for now we are just excited to get our sweet/giggly Tessa back....we've missed her dearly over the last several months and are so ready for her to be spending her days seizure free!

I finally got a little smirk out of her ;)

She was pooped after her appointment...probably because she hadn't taken a nap that day ;)

I'm so thankful to have ways to hold Tessa so close.  When she's feeling better, she'll be more motivated to move around and explore...but for the last serveral months, she has definitely needed lots of snuggle time.

Last night we went for a walk, in the rain, with an umbrella.  She gave me lots of sweet smiles...knowing it was a completely new experience for her.  She found the umbrella very intriguing and I could tell she loved feeling the rain drops on her feet.  Medical equipment, while incredibly necessary, doesn't typically allow for such sweet intimate moments as these.

We are hoping and praying earnestly for seizure relief for Tessa.  She will be on her full target dose of the new Keppra medicine within a couple of weeks and then it could take another 7-10 days after that to begin seeing the full effects of the medicine.  These last several months have been the hardest we have been through.  Seizures are terrifying...they strip away so much from Tessa and from our lives and we will be so grateful for improvement in the coming month.

~Whitney

(I think I'm caught up now ;)