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 ;)