Another One Bites the Dust...

As if we don't already have enough fun around our house, our fridge decided to stop working yesterday!  We noticed that it didn't feel super cold when we were getting Miss P's breakfast and so we changed the setting to "make it colder."  It seemed to get better. 

Since Tuesday was such a rough day with seizures and we had to get a rescue injection to stop them, we didn't have a birthday meal.  So, Mom, B, and Miss C took me to lunch yesterday.  We picked P up from school and came home to a fridge that wasn't cold.  Yikes!!!

B had to jump into Mr. Repairman mode!  He worked so hard to get it fixed.  Then, Miss P woke up from her nap and wanted to help!!

Is it fixed yet, Daddy?

"Please, no cameras, we are working."

"Wow, Daddy, fan condenser motors are really cool."

"Oh no.  This means we might not be able to fix it tonight."

"I'll just rest here, Daddy, while you fix everything."

"before you get up, I need you to do a few push-ups for me, sir."

"1, 2, ..."

"10!!!  Good job, Daddy"

So, we are hoping to get the fridge fixed today.  Please pray that it's not something major!  We have a repair company that is trying to work us in for the day!!

All that work in the kitchen really wore the boys out and so they had some good snuggles to follow!

It's Someone's Birthday...

SURPRISE!!!

Please send a special wish to my wife for life, PRINCESS!!!

Whoo-hoo!  We get to celebrate her today. And not just celebrate, but honor her.

A wife of noble character who can find?
    She is worth far more than rubies.   -Proverbs 31:10


Happy Birthday to you, my Princess!  You are absolutely incredible and inspire me each day.  Thanks for teaching me how to love, all the while, allowing me to show my love and admiration for you.  It is an honor to LOVE you as Christ loved the church and to be that example to so many.  You are so deserving of much more and I look forward to many more days that we get to celebrate YOU!!!!

Happy YOU day my Princess and my LOVE.

Your Prince

Big Girl Bed

Wow!  Our girl is growing up so quickly.  Not only is she going to college soon, but she got a big girl bed tonight!!!  We've been saving since Miss P was born and looking for quite a while for the "perfect" bed.  We still can't find exactly what we're looking for...however, my cousin, S, shared her daughter's bed with us.  Miss P was SOOOO excited!!!

Helping Daddy carry everything inside!!!

Finding the right spot for the bed!

Helping Daddy put it in place.

While B was getting the bed put together in her room, he put the trundle in the entry.

The trundle was so exciting!

Let's get cozy!!

Ahhhhh!!!

Being a big girl is fun!!!

Goodnight!!

Shhhh...the baby is pretend sleeping!

She thought this was so cool!!!!

Now, she gets to sit in her new, big girl bed!!!  Wow!!!

Wish you could have seen her running all over the house screaming, "big girl bed!"  She was so excited!

Pretending to be asleep!!!

In her PJs ready for bed...closing her eyes to pose for the picture!

Someone is excited!!!

She said, "look at my tongue!!"

"See my teeth!"

Wish you all could have seen the excitement this evening as she ran through the house dancing and talking about getting to sleep in a "big girl bed!!!!"  Please pray that it is an easy transition and she stays in bed and is safe!!

Out of the Mouths of Babes...

As we were getting ready for church this morning, Miss P walked in our closet and picked up a gift bag.  Many of you know that I'm a coupon shopper (my theory is that if I can't make money for our family, I can at least save it) and so I stock up on items when they are on sale!!!  Thus, we have a lot of toothbrushes, floss, etc.  Those are at a shelf level that is perfect for her to grab.  So, they get reorganized quite often.  However, today took on a whole new life.

Converation:

Miss P:  Mom, I'm packing for college.

Me:  You're packing for college?

Miss P: Yes!

Then, I turn to B and say, "Aren't we supposed to cry when our daughter tells us she is going to be leaving for college?  This just seems like it's happening out of order."

B:  Well, P, where are you going to go to college?

Miss P:  Aggieland!

All of us: WHOOP!!!

B:  What do you plan to study?

Miss P:  Corps Boys!!!!

Yikes!!!  Start praying now!!! 

Halfway through October!!!

Well, we're halfway through October and it's not going the way we would have planned!  Oh, you mean that we don't get to plan our lives?  Oh!  See, I like to have everything nicely planned!!! ; )

Anyway, I've already had 58 seizures this month which means that in half the time, we've beat the count for the entire month of February, April, May, June, or August.  The last time that I averaged this many seizures in one month was in 2011 after the IVIg treatments.  So, it sure feels like we're headed in the wrong direction.

The docs have a rule as to when I am supposed to take my rescue meds because they know that I don't like to take those strong meds unless I absolutely have to...well, at the rate we are going, this month has me taking more rescue meds than any other month in history.  The dose is also much higher than it's ever been to try to get it to work.  As well, I'm still having more seizures (thus, the rescue med doesn't seem to be stopping the seizures)!

Come on, Lord!  How do we get this to stop?

Please pray that B will be able to accomplish all the work that he needs to get done while still helping to care for me.  The seizures are getting much worse and are requiring more of a hands on approach from someone else; whereas, the last seven and a half years, I've been "okay" by myself.

I had two bad ones Tuesday and then a third that I was "stuck" in...that basically means that it's like it wouldn't end.  B came home and my body was remaining tensed up and he couldn't get it loosened.  One of our dear friends, David's daddy (remember sweet David that you each prayed for...)  came over and was able to start a line to give me an IV version of the rescue medicine. That tends to work much faster and tends to last much longer.  It did work quickly and I was able to stand up soon after he left.  However, I already had another seizure by Wednesday at noon.  We used to be able to get a few days out of the IV meds.  That doesn't seem to be the case anymore.

So, please join us in prayer as things are getting much worse.  UT Southwestern is very difficult to communicate with and get any type of answer.  We specifically asked the doc last week how to best reach him.  We have done exactly what he asked and still haven't heard back from him, even with e-mail promises from his nurse as to exact times that he would call and then apologies from his NP that he was too busy to call.

We had a great conversation with a Pediatric Neuro that actually studies GAD-65 and has a lot of experience with all that we are going through, but in kiddos.  He's not able to treat adults, though.  We sure wish he could take over my care.  He had an amazing knowledge of all we are going through that most of the docs haven't come near understanding.

According to each of the docs, chemo seems to be the only "next choice."  Obviously, we don't want to do chemo unnecessarily.  So, please shower our appointment today with prayers and pray the docs will be overwhelmed with the wisdom of the Lord!

Friday night and shooting for normalcy

Clearly we are behind on the updates.  This was the first Friday of the month.  P had her visit at Scottish Rite.  She still has yet to notice that her toes are swollen, but she takes her meds like a champ.  The docs have give us permission to try lowering her dose to see if it offers the same control.

That evening, we had a meeting for B's office in Allen, and then decided to try for some normalcy and we went to our local football game.  By the time we arrived, I had already had five seizures.  I had another while there totaling six for the day.  So, exhaustion was in full force.  However, it's hard not to smile when you see this sweet face enjoying football!!!

It might be difficult to see, but one of our sweet friends is a sideline photographer.  So, his wife came to grab Miss P and took her down to the sidelines.  That was a dream come true for little Miss Football!!!

P on the sidelines.

P posing for pictures!!!

More pics of P!!!

So, it was a special change of pace and Miss P had a blast!!!!!

From the Inside of a Home....

What a relief it has been to be back home!  The walls of a home have never looked better!  We are also excited that Critter finally finished her antibiotic and is over her pneumonia.  Thank you for your continued prayers and thank you for your faithful follow-up.  Many of you have reached out to us and have wanted an update.  In the past it has seemed that "no news, is good news...", but unfortunately, that hasn't been the case.  While having a couple good days at home after our month long stay in the hospital, and dealing with Critter's illness, Princess began having more seizures.  This week eventually progressed to the point that we felt we had to have an emergency plan in place for Princess, just in case we were back in the hospital.

While we did not go back into the hospital over the weekend, we did have a pretty rough weekend with nearly 20 seizures over the course of three days.  By Monday, our Neuro wanted to admit us back into the hospital and begin doing PLEX again followed by chemotherapy.  That said, we weren't fully on board as the orders were only being relayed to us through other channels rather than being shared from our doctor directly.  This form of communication unfortunately doesn't allow for any feedback (one of our concerns and prayer requests in coordinating Princess' care).  Fortunately, we were able to get in some feedback and rather than being admitted to the hospital, we were able to be put on our Neuro's clinic schedule and had an appointment with him today.

Praise the Lord for our appointment today.  In a managed care system that is broken and unfortunately doesn't allow for the patient's cares and needs to be fully addressed, we somehow spent nearly 3 hours with our Neuro.  Specific prayers were answered as we 1) were finally able to share a complete history of Princess' seizures; 2) had effective communication regarding Princess' care; 3) thoroughly reviewed Princess' seizure journal that was recorded while in the hospital; and 4) evaluated whether PLEX served any benefit.

So there we were, visiting with the Neuro and finally getting our chance to visit and share uninterrupted and feeling that we were finally getting to share Princess' story.  What a great feeling!

So, what came of today?  Bottom line, the doctor agreed that Princess' treatment over the last month did not provide us with enough evidence that it worked.  Additionally, the doctor was able to see that prior to our hospitalization, Princess was doing better than she has under his care.  The evidence provided was an eye opener, but it also meant that treatment options were still being limited with each proposed treatment's failure.

From here, we now see ourselves moving in the direction of chemo.  Specifically, we'll be looking into doing the drug Rituxan.  This particular chemo agent targets a specific cell in the body, which will basically suppress the immune system and hopefully wipe out the antibody that is the supposed culprit of Princess' seizures.  We are still days away from doing this, but we have a clearer picture of what is ahead.  In the interim, we have to get through day upon day of having seizures.  Just a brief glimpse- Princess has already had 32 seizures just for the month of October.  Seventeen of those have been since Sunday.  So we covet you prayers, and thank you again and again, for being on this journey with us.

Prayer Requests:

• Our Neuro's heart and that he would come to know the Lord.
• Strength for Princess as she is continuing to have so many seizures.
• NO MORE SEIZURES!!!
• Peace with starting Rituxan, if this is where the Lord is leading us.  
• Better communication with the Neuro team and how to best handle these seizures
• More of a multi-disciplanary approach through Southwestern as they are telling us it might be next year before we can see some of the docs that Princess' neuro wants her to see.