Update

Thanks to many of you that have faithfully checked in on us and have been asking for an update to the Foxhole.

A couple weeks back, we celebrated  Princess' birthday!  Although she was not feeling her best, we did have a nice week celebrating her.  Through our best attempts to celebrate, we did have more appointments with multiple docs trying to address a lot of the secondary symptoms that Princess is experiencing.  Through the course of doing her lab work, her results came back that she is severely anemic and her iron counts are devastatingly low.  This might explain some of the secondary symptoms.  Additionally, the docs have also advised that truly the only option remaining for Princess at this time to address her seizures will have to be the chemotherapy/immuno-suppression.  However, due to the lab results, her anemia has to be addressed.

This past week was more of the same, new appointment, new doctor, similar results...

Frustrating as it was, Princess was and is, still battling through her days having multiple seizures per day. While the seizures themselves seem to be more debilitating, she is incredible!  Her tenacity to get through each day and make the most of each moment is something that is to be admired.  We were able to get to the hospital on Thursday this past week to begin doing an Iron infusion.  Literally, iron is supposed to be infused into the vein so that Princess can hopefully begin producing "good blood" and jump-start her body to then hopefully reduce/eliminate some of the secondary symptoms.  Thereafter, we'll hopefully be able to begin addressing the use of chemo for the seizures.  While as simple as this may sound, unfortunately, Thursday's trip to the infusion center did not go well as through literally 6 separate attempts and blown veins, a horrible seizure, we left not able to receive the iron and were very frustrated by the overall experience and overall lack of care.  It truly was a very disappointing experience that we are still trying to wrap our minds around.

So overall, the last few weeks have been exhausting with more doc appointments, more unknowns and new challenges.  BUT, we are grateful for your continued prayers, friendship, and support.  While God is carrying us, you are walking alongside sharing in our burdens and our life.  Thank you!

Note that we did have some fun moments this past week and will post pictures later of a very fun Halloween!  Old Cars!  Wolves...

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.

Sunday Update

WOW!!!  How amazing to see prayers pour in and see the Lord answer!  Critter has had a good day today and thanks to your many suggestions and recommendations on taking her medicine, we successfully gave Critter her medicine this morning without any flinching or hestitation.  Both Princess and I were like little kids on Christmas morning, filled with excitement.  Talk about trying to keep a secret!!!  So thanks again!

So what worked?  We decided to divide her medicine among all her choices at breakfast.  We ended up doing 2 ml in orange juice, 1 ml in her yogurt, and then 1 ml more in her pancake.  Again, it worked and mom and dad were greatly relieved!

Overall, Critter is doing much better.  She even got 11 hours of sleep last night which was wonderful for everyone!  We pray that she will continue to get better each day.

Princess has had a different kind of day.  It started off incredibly sweet with some good cuddles from Critter. However, after waking, Princess' heart rate dramatically jumped.  This was similar to what we experienced in the hospital.  She did take a moment to rest.  Since Critter is sick we did not go to church.  In hindsight this was probably best as Princess then spent the rest of the morning and afternoon exhausted with no energy.  Please pray that Princess would be restored.  That these seizures would stop. At the time of this post, she has already had 3 seizures!!!  Also pray that she would be able to maximize her time with Critter.  It was really special for her to get some "Mommy-time" this past week before the seizures increased and even yesterday taking care of Critter.

Pneumonia

"Lord, please protect our family. Please watch over our little one tonight while she sleeps. Please bring relief and healing to Critter."

This is our prayer this evening.  Critter, as you know from our earlier posts, got sick earlier in the week with Croup.  After getting better, she actually had a very rough night last night sleeping and probably only slept about 6 hours as opposed to usual 11 to 12 hours.  Her short night was due to being up coughing and not being able to breathe.  With such a rough night, we took her to an after hours clinic that sees patients on the weekends.  It was here that Critter was in fact diagnosed with pneumonia.  Her right lung is full with pneumonia and her left lung is showing some infiltrate...so very scary!  We are especially concerned as we don't fully know what to do as Critter has never really been sick.

In addition to the pneumonia difficulties, we are actually having an even tougher time getting her antibiotics down.  Any tips you have would be greatly appreciated as Critter wants nothing to do with her medicine and throws it all up if we force it.  HELP!!!

So please join us in praying for Critter's healing and that she will beat this pneumonia!  We are also praying that she will get some great rest this evening!

Thank you for your continued prayers on our behalf.  We're so thankful that we are back home from the hospital during all this.

From M's Mom

We have come to you so often asking for your prayers and you have been so faithful.
Hopefully, there is not an allotment per family, because we need you again.
Critter was diagnosed with Croup on Tuesday and was responding well to the treatment.  However, after a sleepless night with difficult breathing and a high temp, the Doctor on call at our Pediatrician feels she may be experiencing a rebound that has progressed to a respiratory infection, bronchitis or pneumonia.
We were directed to a pediatric urgent care in Garland and they don't open until noon!!
Are you kidding me??
It appears that all of the offices we have contacted don't have Saturday hours until next month.  Please pray with us for our precious girl and for all of this to be easily resolved.
M was allowed to come home from the hospital with orders for complete bed rest and needless to say that has not happened....and a seizure this morning has further complicated this process.
Thanking you in advance for your love and prayers!

A Day's End....Finally

Oh the joy to finally be home.  It has truly been great being back home and having the family back together as one under the same roof!  Princess has really enjoyed feeling good these last few days and it has especially felt good as she has truly been able to take care of Critter while she was dealing with croup.

Critter had a much better night and woke feeling much better. The game-plan was to monitor her during the day and then follow up with the doctor to get their assessment.  The blessing of the day was that Critter was 90% better today according to the doctor and she felt that Critter would be back to her old self in no time.

While Critter was feeling much better, Princess on the other hand woke up having a seizure and a headache that persisted throughout the day.  Miss C was so sweet that while B was out on an appointment, Miss C grabbed an ice pack and made Princess lie down and try to rest.  And how miserable the headache got.  After I got home, Princess was still in bed with a throbbing headache and to compound things, she felt like she was on the verge of having a big seizure.  Something just wasn't right.  Even at the time of this post, Princess' headache is still very present.

Meanwhile, I was able to get in an appointment for work (felt good), and then spent over an hour at the Pharmacy trying to get the meds the doc called in on Tuesday.  And while that was going on, the dealership that I took my truck to was calling to say my truck was being fixed.  Not too bad!  Thanks by the way for the multiple folks that either called or texted me about a vehicle.  You guys rock and were such a blessing to realize that even if my vehicle was not able to work, we had some options.  So the cool thing was that the Dealership was in fact able to fix my truck and this afternoon I was able to get my truck!  YEA!!!

So all in all it wasn't the best of all days, but things worked out.  We even had a surprise visitor come over and share some of her precious hugs and memories..."Mrs. L"!!!  Mrs. L. has just been so sweet in helping to care for Critter and had a surprise to drop off for both  Critter and Mommy.  Much to Critter's delight, Critter was able to get her very own painted pumpkin!  How precious! And as if her coming was not special already, she brought us a gift that will help us with grocery trips in the next few weeks.

To end the day we did enjoy getting back to the dinner table and dine together as a family.  However, we did hurry as we had to get ready for a visitation service for a dear friend's brother who had passed away.

Prayers:

• Headache is still pretty bad for Princess, please pray that it would cease
• Communication with our doc now that we are not in the hospital and we need to know what to do for her on days like today.  
• Critter would continue to get better
• Healing for Princess!

Croup, there it is....

Pardon the '90s one hit wonder pun...

Turns out she got much worse this afternoon.
We are praying this is a one time thing and it will be over soon.

B spent almost the entire day on the phone with insurance companies & car dealerships to try to get his truck repaired.  Turns out that if he replaced the ignition cylinder (rather than rebuilding it), it requires some type of special code from Ford due to the anti-theft stuff on the truck.  Ford isn't being helpful at all.  Does anyone have any good connections with Ford?  They are seriously being very difficult.  We need them to provide "the code" to the dealership to reset the anti-theft.

On the other hand, our local Chevy dealership fought for B's business.  So, this afternoon our insurance company was going to tow his truck to the dealership.  They thought they would arrive about 3:45p.  Miss P woke up from her nap unable to really breathe at all.  Mom stopped by around that time and we all agreed she needed to get in to see the doc quickly.

About that time the towing company called to say they were sitting in the parking lot looking for B's truck.  So, he had to jump in Miss C's car and race up there while C, Miss P, and I jumped in the car and rushed to the doc's office.

Turns out they didn't bring a big enough tow truck to get his truck.  So, they had to call for a flat bed.  In the meantime, B kept working on it.  He was able to get it started and he drove it to the dealership.  Mom then took him back to C's car & he met us just in time at the doc's office.

Doc said it's definitely croup and her airway is so constricted she feels the need to act quickly.  So, she wanted to do a steroid treatment and epinephrine nebulizer.  Miss P could not stand the medicine.  She was spitting it all over the place, crying hysterically, and then threw everything up.  It was so heartbreaking.  That's when B arrived and he tried every trick up his sleeve, too.  She would not take the medicine.  So, they moved on to the nebulizer and she fought that like crazy with plenty of tears involved, as well..  Then, all of a sudden, she stopped, calmed down, took it in her own hands and held it for the rest of the treatment.

In Daddy's arms being a big girl and getting the treatment.

We are so proud of her!  She did such a good job.  Then, they had to come in and give her a shot for the medicine that she could not take orally.  She was one tough cookie.  She barely flinched while the rest of us were almost in tears because we didn't want her to be hurt by the shot after all she had been through...she even got the doc to stay in and hold her hand while the nurse gave the shot.

Once we left the office, she got a treat of Sonic Ice and we headed home, ate dinner, did a few steam showers, and then she sat on our bed and read her new book with Daddy!

What a Daddy will do for his girl.  Yes, this is one of my headbands and he let us put it on him for her!!!

That's my man and I'm so smitten with him!!  Wow!!!

See how her hair is starting to curl from all of the steam showers.  She wanted to take everyone's temp, including the pillow, blankets, etc.

So, once she finished her book, she went to bed almost immediately.  Please pray that she makes it through the night, gets the rest she needs, and gets well quickly.

As well, they don't have a good estimate on when B's truck will be ready.  So, please say a prayer that it's ready tomorrow or that we can find a loaner car so that he can get to work, etc.