105!!!

Wow!  Our day was crazy.  Started with our trip to Scottish Rite with Miss P.  They first needed lab work.  Last time was easy and she didn't even flinch.  This time she screamed like crazy and it took two sticks to finally get what they needed. 

She seemed to realize where she was and she did not want to sit still in a room.  So, she and I walked the halls together and let Daddy come tell us when we needed to be in the room.  We were in the hallway, and saw a gentleman that looked so familiar, but he didn't say anything and so I thought I must be wrong.  Then, I heard him say his wife's name and our city to the gentleman he was speaking to and got excited that we had a friend there.  Turns out he is the "man in charge" over the entire area that P is being treated!  He used to teach our Sunday School.  So fun!

Since it is a teaching hospital, you might not get the same doc each time and they send in the resident before the doc.  We asked the nurse how a different doc would know if there was substantial improvement or not since no pics were taken at the previous visit.  She said they have #s they apply to it and that would help.  We still beg for our original doc, though.  The resident came in and he was very kind, but many of the concerns that we had just stated to the nurse were starting to be proven true.  He asked us what it looked like before and if there was any improvement!  Grrrr!  He then left by telling us that they might stick with the meds she was on, but it was time to add the chemotherapy.  He said he would go get the doc on call and let her know.

P and Mommy walked the halls for a little bit while Mommy cried and prayed with Miss P.  Daddy called us back in that the doc was ready to see us.  Praise the Lord, the doc that saw P today is the one that saw her last time and is considered to be the #1 doc in the nation for this condition!!!  Thank you, Lord!!  So, she did a full exam and said that she felt there was enough improvement to stick with the current course of treatment/no chemo (Mommy teared up and let out a, "Praise Jesus." at this point)!!

She said that P couldn't have picked a better spot to have Juvenile Arthritis if she was going to have it.  Just about any other joint probably would require the chemo, but she felt the toes were okay to watch a little longer.  We also found out that her's does not seem to be rheumatoid, but more Psoriatic.  So, we go back for our next check in October!!  The doc was also incredibly sweet this time and asked how my health was progressing!

So, after she left we started to notice that P felt a little warm.  They brought the prescription for P's meds and we were about to leave.  Then, the doc came in the room and said that P's urinalysis came back pretty indicative of a UTI and that we should contact her pediatrician.  We got in the car and tried to feed P her lunch.  She wanted nothing to do with it.  She basically refused to eat it which isn't like her.

We have a sweet friend that we can't wait to tell you about, but things have been so crazy.  Anyway, we needed to take our friend to a doc appt, as well.  So, we went to her appt.  P slept on the way and then came in the doc office and walked around for a while though she still felt a bit warm!

When we got back in the car, she wanted to finish all of her lunch.  She also ate her afternoon snack and drink.  So, we thought we were on the road to being better.  She slept on the way home.  We put her down for a nap as soon as we arrived. 

She woke up screaming and was super hot.  We made it to the doc's office in no time to find that sweet little Miss P had a fever of 105!!  The doc's office immediately sprung into action with Motrin, cooling rags, flu & strep tests, etc.  I pray that it never has to happen again, but despite having two seizures today, the Lord gave me the ability to be her Mommy!  I got to hold my precious girl as she screamed and cried (no seizures).  She also allowed me to sing to her and just hold her and comfort her!  Wow!!  What a gift to get to be her Mommy!  Again, I pray this never ever happens, but I am so grateful that the Lord allowed me to be her Mommy today!  Thank you, Jesus! 

They kept trying to get a urine collection so that they could give her an antibiotic shot.  However, she just would not share.  So, once her fever had dropped to about 102 they allowed us to head home.  Had she not responded to the meds, they were about to send us to Children's, but she did respond and so we are at home with our girl tonight.

We have to wake her up multiple times throughout the night, take temps (we don't have a good thermometer for a kiddo and so this should be fun), give her meds, etc.  B has a full day at work tomorrow since he had to take all of today off for all of our appts.  He has to cancel a few morning appts. to get us to the doc in the morning, but then has to get to his appointments.  So, please pray that she is feeling well in the morning.

There are many of you that received requests to pray for her through B's work, etc.  Thank you all for selflessly stopping to lift our girl up to our Savior.  May she continue to heal and may HE be glorified!!  Praise Jesus that our girl is feeling better!!!

Quick Prayers

I had lofty intentions of doing a few posts to update all that has gone on in the last few days...hasn't happened.

So, I want to quickly hit the most important and we'll see if I can get to the others soon.

Playing Follow the Leader!!

Tomorrow (Monday) P will have her follow-up appointment at Scottish Rite.  This is the appointment where they will determine the next step in her treatment.  As we understand it, if they believe the current meds are working well enough, no change.  If they don't feel like they are making enough of a difference, then they will start chemo.  That is my understanding.  Obviously, we will learn more in the morning!

Thank you for all of your faithful prayers!!!!

Do you see what IC?

We are spending the weekend/early week at B's Annual Meeting for work!  There is absolutely no hint, whatsoever ; ) as to what hotel we were supposed to be staying in while here.

I know you're not supposed to share when you are out of town, but we have some incredibly vicious pups that would kiss someone to death if they tried to break in...plus, we've had so many weird things in our neighborhood we have almost constant police supervision.  So, if someone isn't scared of puppy kisses; hopefully, our police department is tough enough!!!

Anyway, thought we'd share about our trip so far!  It's been crazy!  As we were packing our bags and trying to get to the airport, we received a call from my benefits administrator stating that the clarification we received in writing a few weeks ago was "wrong" and so it doesn't stand!  What??  It basically means that I would lose all health coverage (smart choice when someone is on disability-great chance of them improving if they aren't able to get medical coverage) and depending on who you speak with, B & P might lose all coverage, as well!  This situation has already taken over 24 hours of time on the phone and many seizures following as being on the phone is a trigger for my seizures.  Anyway, I was bawling as we were trying to leave.

Then, on the way to the airport, the sky let loose and started hailing on our car.  We finally got checked in for our flight and they told us it would be a while before they could find seats for us because they had a previous flight that was cancelled and they were having to address all of those passengers first.

Our plane was over an hour late to the gate (we were supposed to leave at 8:10p and arrive around 10:15p) which meant we didn't land until close to midnight.  I may be a bit of a hotel snob, but these rooms are priced at a premium because every Northwestern Mutual Rep and their families descend upon this city and take over.  Thus, they can charge way too much.  So, it was my opinion that if we were having to pay this much, we should have a super nice room.  We got to our room and found this.

Yucky, anyone?

You think they cleaned before we arrived?

We were supposed to have a fridge in the room for all of my food.  They knew is was for a medical condition.  While a fridge was provided, we could barely fit two chicken breasts in because it was so small.  They told us they couldn't help us until the next morning because Engineering wasn't there. 

If it tells you anything, I wasn't comfortable walking around the room without my house shoes on my feet.  However, when they were kind enough to move us to the next room, I didn't want to put my slippers back in my bag in case anything else got floor cooties!! ; )  It was truly so gross!

This was the soap tray.  Your hand would feel super clean after this, right?

Anyway, they were kind and moved us to another room.  Now, it's long after midnight and we are past exhausted.  They agreed to switch us to another room.  Here is the fun we found in the next room!

Hard to see, but food on the chair.

Huge, grody (is that a word) stains all over the carpet.

The best part might have been that this well respected hotel sells an "intimacy kit" at the "mini bar."  Really?  B asked where the spot was to put the quarter in the bed. 

It is super hard to see in these pics, but the shower curtain was covered in mold!  Yucky!!!

Can you see a little bit of it here?

 Anyway, we called other hotels in town to no avail.  So, B had to take most of my food down to the employee fridge for the night. Now, it's 2:45am.  We didn't unpack at all in hopes that we would find something else as soon as we woke up the next morning.

It was a tad difficult to fall asleep because the down mattress pad (which most people would love) was a little odd.  Literally, every time we rolled over, we had something sharp stick our skin.  Each time, we could pull a feather out of the bed.

Oh yeah and there was a police investigation going on down the hall from one of the rooms due to "unruly behavior" from one of the guests.  Lovely!!

Anyway, this was just a super weird experience as this is a very well respected hotel.  We found a room at the hotel that we usually choose and were seeing how fast we could get there.  We called down to the front desk to check out and the manager said that he didn't believe that we could have had two dirty rooms and that he would charge us the full amount for the full stay.  We called the amazing woman at B's office that organizes all of the hotel rooms and she was about to "attack!"  In the meantime, the event manager for the not so clean hotel called us, apologized, and had a taxi sent to take us to our new hotel!  Super impressive!  Once we arrived at this hotel, it was completely different experience.  It has just seemed clean from moment #1.  We also have a rather large fridge!!  Then, we received a fruit tray and some fun different waters from the previous hotel.  Again, impressive!!

So, that was the first twelve hours of our trip!!!

Anyone else out there a hotel snob?
Anyone else had a similar experience?

All the Mommies Out There

This could be a TMI kind of post.  However, I'm hoping that the sweet mommies that read this can help.

Little Miss P always gets a bottle before bed, always has...we see it as keeping her "full" so that she can sleep through the night (typically 11-12 hours)!!  Yes, we love it!

However, our little cutie pie, who clearly has us wrapped around her fingers (see below), has been waking with diapers so full that the sheets would need changing every day if not for sheet savers!  Her little diaper is about to explode and her PJs are sopping wet. 

So, what do we do?  Is that normal?  Do we start giving her less?  If we give it any earlier it would be at dinner...

As you can see, the girl loves to swing!!!

Resist the devil...

and he will flea from you!  James 4:7

Misspelled word intentional!

Yes, we had fleas in our house on Monday.  Of the 30+ years that I have had animals, I don't recall this ever happening.  Anyway, we spent the morning trying to figure out how to safely get rid of fleas.  That meant lots of laundry.  A cleaning crew working so hard since I'm not allowed to clean, vacuum, etc.  That afternoon we had the house treated for fleas...Wow!  Unbelievable.  We are all covered in bites and praying for the day that they are all gone!!!

We'll take any secrets that y'all want to share!!!