Update, Babble Award, and some SUPER CUTE pictures I can only chalk up to the power of PRAYER!

So where shall I begin?  

I think I left off in the post before last about his previous lab work being too high to be able to start the G-CSF, and that we needed to find the source of Tripp's infection and treat it (HAHA) before we could get his white blood cell count down to be able to start this drug.  

SO... I mentioned last week that we started him on the one oral antibiotic that was left that we THOUGHT could still treat one type of his pseudomonas.  Well, about 3-4 days ago (after he had been on this antibiotic for about 3 days already)... his fever was only getting higher and he was really lethargic and not moving around much at all.  He looked awful.  

So Dr. Defusco decided that we needed to redraw his blood work- CBC, CMP, and blood cultures.

Dr. D texted our home health nurse, Kati Corso, and she was here the next day to draw his blood.  

Let me tell you a little bit about Tripp's nurse, Kati, because I truly believe that God sends the right people into our lives at the right time.  Kati works in home health (we are currently the only family she has on the Northshore- she lives in Destrehan) and she also works nights in the PICU at Children's hospital.  She is so thoughtful, so selfless, and a DARN good nurse.  Since the very first day she came, we fell in love with her, and I think she fell in love with Tripp, too:)  Kati has been a true blessing to us by being able to come whenever we need her (I know she would never tell me if she was just plain exhausted from working the night before)... Dr. D or I can text her, and she always makes plans to come out as quick as she can.  We are so lucky to have an AWESOME nurse, who also cares!!

I want to tell you, too, that in her spare time (ha), Kati is organizing the "Skip for Tripp" 5K Run/Walk in Destrehan next Saturday, October 15th.  You can visit the event page on Facebook HERE.  I know she's worked really hard doing this, and I truly appreciate her putting this together for us.  We love you, Kati:)

So, his blood work... Kati came out to draw it on Monday.  Tripp was SO GOOD for this.  It made my heart melt.  He barely even cried and just laid on the table so still.  Such an angel.  And then on Tuesday morning, the one and only Dr. Defusco came to the house again to discuss where we would go from here.  We got the blood work results that morning before she got here, so we had a chance to go over them.  His white blood cells were through the roof- way higher than last time.  This means no G-CSF (at least not any time soon- because G-CSF stimulates white blood cell production- and with such a high amount already, he could have a stroke) and it also means he is obviously fighting an infection.  His RED blood cells were VERY low.  Which isn't good either- this means he's very anemic.  It's no wonder he doesn't want to get up and play or move around- he's as weak as a cat (yes, Grammy, I stole your line:)

Here's what our brains came up with- a blood transfusion.  Yay.

I've thought about these before- obviously.  But it just didn't seem like a great idea to put him in the hospital and have to find an IV site, while of course risking him catching 45 other things while in the hospital.  So it kind of got put on the back-burner.  And to be honest, his red blood cells were always "lower" than normal- but never really low enough to need a transfusion... until now. 

The only way I would do this, though, is if we could do it here at the house.  And the only way we can do it here at the house is if we have a super awesome doctor and a super awesome nurse who would be willing to stay for 4 hours to let the transfusion run.  We are pretty lucky that we have both of those, RIGHT?  Thank you, Jesus.

So, Dr. D is in the process of checking to make sure we already have a type and match on him so we can get this ball rolling.  I, of course, will probably have to sedate him to be able to do this... but if it can give him just a little "boost," then it will be worth it.  

The Babble Award.  

AKA, The most special honor I've ever received in my whole life. 

Our story made the front page of Babble.com:

I was interviewed for this story by one of Babble's writers, Christina Couch.  She was so kind.  I actually cried on the phone with her.  I felt so bad.  I had to answer a lot of questions and talk about things that I haven't talked about in a very long time, and she was so sweet and understanding.  I am truly honored to have our story posted on the front web page!  This is so great for EB Awareness.  Thank you again to everyone at Babble.com for making this possible and for all of your kind words in your e-mails to me this week!  And of course, to everyone who voted for me:)

Please check out the story HERE.

Speaking of EB Awareness... I was in tears last night when I received an e-mail from another EB mom.  She went on to say about how "down" she had been about her son having EB (the feelings of guilt, hopelessness, etc).  But that she had "happened" upon my blog and it had helped her to get through some of her tougher times.  She then told me that the other day a stranger came up to HER in public- and mentioned the word "EB"- to HER- before SHE DID!  She said the woman smiled at her little boy, she didn't look at him "funny" or it wasn't "awkward."  She then said the lady told her that she had read my blog and was aware of EB and what is was.   

Tell me this is not... 

A. M. A. Z. I. N. G.

This is what I mean about spreading awareness.  Things like this are happening because all of YOU are helping us to spread awareness to this horrible disease.  If ONE less child gets ridiculed or "stared" at because we can educate people about EB, then it is worth it!  

That right there, my friends, puts the biggest smile on my face. 

And now to the "super cute pictures that I can only chalk up to the power of PRAYER."

In the past 2 days, Tripp seems to have felt a little bit better.  After Dr. D left yesterday, I went back up on his Acyclovir (the anti-viral drug)- so maybe he had that going on again and needed a higher dose?  Though I did write a post insinuating that we could use some prayers, too:)... so I definitely think that all of the prayers give us a little bit better days (drugs or no drugs).  He's still not getting up to play and is VERY weak, pale, and running fevers.  But he has been in a better mood and giving some super cute smiles in the rocking chair!  He will probably have the worst day EVER tomorrow because I'm bragging on him, but o well... I couldn't pass up sharing a few pictures!

These are all "smiles" by the way:)  Mommy's angel.

And introducing... Our new rocking chair!!!  

Our old one had WAY too many miles on it, no butt cushion left, and WD-40 didn't even help the "squeaks."  So it was time to upgrade.  I LOVE IT.  It swivels, glides, and reclines!  It's so comfy and has a lot more room for my growing boy:)  Well, he's at least growing in length! 

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you. "

-Matthew 17:20

PLEASE continue to pray and have faith in Tripp's miracle.

We have to TRULY BELIEVE that it's possible. 

I know it is. 

Love,

Pinteresting Recipes

Have you heard about Pinterest yet?

If not, you should check it out!

Its an amazing way to find ideas for just about anything!

I am a wee bit addicted!

I have found so many yummy recipes on there though!

It has somewhat rekindled my joy of trying new recipes out!

How could it not with hundreds of amazing photos thrown at me on a regular basis?!

Tonight I tried 2 new recipes found while 'pinning'.

Spinach, Mushroom and Pesto Lasagna

So stinking delicious!

Seriously, go make it right now!

You'll never be the same!

 

And these little lovelies:

Lemon Blueberry Cheesecake Cookies

So very scrumptious!

The dough itself was to die for!

(Not that I tried it or anything...)

It was a far messier process than I expected -

It was pretty impossible to not burst the blueberries so the dough was dripping with juice.

But I'm not complaining.

The end result was well worth it!

 

So if you're not pinning, get to it would ya!
You might end up cooking something fantastic.

Or making a dessert stand out of a thrift store plate and glass.

Or learn how to unplug your drains naturally.

Or find out that you can print on fabric!!

Or discover how to make puffy paint for the kids!

And while your at it...

 

Two weeks

Kallahan Troy
2 Weeks

Weight: 6lbs 13oz.

Length: 19 & 3/4”

Head: 14”

We are settling in well.  I have a had a lot of time with my boys which keeps me very busy.  Tyler is busy drilling which makes for some long work days.  Monday we took Kallahan to the doctor and he is doing great.  The doctor said the goal by the two week appointment is for the baby to regain to birth weight and obviously Kallahan did so and added eight ounces!  However, since Monday night it seems like his allergies have been bothering him.  All the cowboys in my life are fighting them – runny noses and coughing.  Hopefully the rain in the forecast will help all of them.  For now, we are trying to keep babies’ head elevated to decrease the drainage.  He is not sleeping well at night which is making for some long days but I know this will pass and my sweet little cowboy will be back to his content little self. 

Last night Granny watched Kallahan so I could take Keeler to the local Fairytale Fair.  He loved it!  Several organizations in town set up little booths and read different books to groups of kids.  Keeler is doing so well with accepting Kallahan into our lives.  Just the other night, he asked if Kallahan could join us for his bedtime story.  I know they are going to be the best of friends. 

“A brother is a friend God gave you; a friend is a brother your heart chose for you.”

The Good, the Bad and the Ugly

Somedays homeschooling is so rewarding.

Everything goes as planned.

Your kids learn something.

They impress Daddy with their new found ability.

The Good:

(Piper quoting this month's memory verse.)

Other days aren't quite so smooth.

But you get by.

Besides, they are only children!

And they generally make you crack a smile in the process.

The Bad:

(Piper's attempt at singing "Yes, Jesus Loves Me")

Other days are simply insane.

The kind of days that make you want to run back to bed and bury your head under the pillow.

You know what I'm talking about.

Sometimes children are beyond any explanation.

The Ugly:

(Uh....?)

But who am I kidding?

The good, the bad and the ugly -

I love it all!

Regardless of the kind of day, I'm glad they're mine!

Source: handletteringcite.wordpress.com via Gina on Pinterest

How to Keep the Kids Occupied and Your Kitchen Smelling Amazing!

I came across the following recipe at No Ordinary Moments.

It smells like Autumn.

It makes your whole kitchen smell like it!

And makes you want to bake and bake and bake.

I'm not the only one enamored with this delightful playdough...

After finding it in one of their workboxes this morning, it got hauled out multiple times today!

Lots of cookie making going on here!

And a few taste tests, too!

Word to the wise, it doesn't taste nearly as good as it smells!

Here are a few other things we are going to try with our Pumpkin Spice Playdough this week:

Make the letter out of playdough on this pumpkin playdough mat.

Leaf prints will be the perfect way to end our game of leaf bingo!

I came across mark making in playdough as a fun pre-writing activity - we'll be trying it out!

Letters from... Me.

Dear Tripp, 

I'm sorry these past few days have been so rough, bub.  It's not fair that you have to hurt.  It's not fair that you can't do the things that normal kids get to do, or that you have to take a bath in tremendous amounts of pain with raw, open sores all over your body.  It's not fair that every single breath you breathe is like work and a struggle to stay alive.  It's not fair that as you lay next to me right now, you're on so much medicine but yet you are itching all over and completely miserable trying to sleep.  You never catch a break.  A good day for you would be someone's worst nightmare.  I'm praying hard, buddy, that I make the right decisions coming up soon.  I pray that we can find out what's going on with you (this time) and that it's something that we can fix (temporarily).  But if I'm going to be honest with you... I'm praying for a miracle.  Because we are getting to the point where your sores and infections are taking over and there's not many options left to treat them without sticking you and putting you in the hospital.  I said I wasn't going to do that to you.  But that will be the hardest decision of my life.  I hope you'll help me through it.  You're so brave, bub.  

I love you.

Dear Mom, 

Oh Momma.  I'm so selfish sometimes.  Like tonight when bath was going so horrible and I "shut down."  I got quiet, I got short, and I got moody.  But you, angel mother... you take it all in stride.  You're sitting there, watching your daughter in pain AND your only grandson in pain.  Probably watching every word you want to say because my bratty self might jump down your throat (even though I learn that from you:)  And I never ask if you're okay.  I'm sorry.  I know I get my strength from you, you superwoman... but you don't have to always be strong for us, you know?  I'm the luckiest girl in the world to have you.  You're my strength when I have none left, you're my brain when mine is just plain "broken," and you give me hope when I'm ready to give in and give up.  I am who I am today because of you- because of what you've instilled in me and because of the example you have shown me.  I am so proud to call you my mom, but also proud to call you my very best friend. 

Dear Dr. Defusco, 

I know that when we had to choose a pediatrician on the south shore, that God led me right into your office.  You know why?  Because we weren't even supposed to see you that very first day.  I had called to make the appointment with another doctor, but she wasn't in that day, so they gave us your appointment.  And after I met you, I knew that you were ours and that we would never switch pediatricians again.  I could tell the very first day that you love your patients and that your heart is in your work (and I truly mean that).  I could never do what I am doing without you.  You put your whole heart and soul into helping Tripp from day one, and from the bottom of my heart I thank you.  I appreciate you.  And I hope every doctor in the world can learn from your devotion.  You never get frustrated with my constant calls or texts (at least you don't show it to me:).  I know you feel helpless just like I do... and I know that this disease is not what you are used to dealing with, because you are a pediatrician- not a hospice doctor, not a pain management doctor, not a hematologist.  But do you play all of these roles and more for Tripp?  Yes... and you play them well.  It has been such a blessing to me not to have to deal with a million different doctors- because YOU take care of what needs to be taken care of (with the exception of our fabulous ENT, Dr. Rodriguez). You communicate with the other doctors so I don't have to.  I just want you to know that you are more than a doctor to us... you are a friend.  And pretty much an angel.  

No matter what happens in the future, you are a HUGE part of the reason I got to see my son turn 2 years old this year.  Thank you for believing.  Thank you for your persistence.  Thank you for encouraging me.  And thank you for never giving up on my son. 

Dear all of you precious souls who support us, 

You know who you are.  And I'll be honest... do I get time to respond back to every message or e-mail?  No.  But do I read every single message and e-mail I receive?... YES.  They bring me hope and encouragement when I'm having a rough time.  They make me feel like I'm not in this alone.  The amount of support we have received is indescribable.  I am not sure why we were so fortunate and blessed with all of this, but I know that I thank God every day for the people He has brought into our lives.  Thank you all for standing by me through the ups and the downs.  Whether Tripp is thriving and standing up to play, or whether he is sick and totally immobile, we always have people who are supporting us, praying, and believing in a miracle.  Please know how much that means to me.  It's hard to thank you each individually... so thank YOU reading this... for reaching out to us, following our story, and praying for my little Bubba.

Dear God, 

I hope you didn't think I was going to give you a break tonight, did you?  I need you tonight more than ever.  I know that you know pain, God.  You sent yourself in the form of man to Earth to be crucified- the worst possible form of death (other than EB... just kidding...kind of).  You know Tripp is suffering- just like you suffered.  Sometimes he reminds me of you, God... when he cries and coughs really hard and all of his little scabs start to bleed and there are lines of blood just running down his face.  I think of you and the crown of thorns stuck into your head.  And how many times you were beaten and tortured.  I'm trying, God.  I'm trying so hard to understand what Tripp's purpose is.  Or more than that, HOW LONG his purpose is.  I know he's brought people back to prayer, back to church, helped us to love our children more, and appreciate little things that we never appreciated before... but he's miserable, God.  My sweet boy is tired.  And I know that I'm not telling you anything that you don't know... Heck, maybe you and Tripp communicate on a daily basis and Tripp knows exactly how long you expect him here on Earth.  That's really cute how you guys are keeping me out of the loop, though... Probably joking together and saying, "how many times do you think she's going to ask for her miracle today?"  No, but really... I trust you, God, I really do.  And I truly believe that you know what you are doing, so...

"When I am afraid, I will trust in You."

-Psalm 56:3

I'm afraid.  I'm sad.  I'm anxious. 

But I'm trusting. 

Sweet Jesus, what I wouldn't give to go back to this day and be able to look him in those beautiful brown eyes again... 

Love,

All About Me (And Then Some!)

This week flew!

Even despite having to deal with 2 year old molars coming in and long nights of croup-y coughing, it ended up being fun and full!

There is something about activity that helps get you through the most tiring of days!

So I apologize for the super long post but there is a lot to share!

(Much to my surprise!)

We learned about Noah's ark this week in our Bible studies.

This led to building our own ark out of mega blocks and loading all the animals we owned onto it!

The little pink ramp was all Piper's idea!

Smart girl!

The animals had to have a way to reach the door!

And the roof was her touch, too!

Our workboxes were filled with 'All About Me' themed activities this week.

(All printables for this theme were from Itsy Bitsy Learners.)

One box had family puzzles - pictures I added magnets to the back of and cut up.

The girls had a wonderful time putting them together and were delighted that they were pictures of people they knew!

Another box contained the ingredients to a cute little 'letter of your name' craft.

The girls glued colorful buttons all over their letter....

Which resulted in these fabulous little wall hangings!

I can't wait to hang these up in their room once they move in together!

Piper and Taitum also worked on making their own picture frames.

This involved painting...

And glittering...

(Lots and lots of glittering! I think I may be cleaning glitter up for the next year!)

They added some jewels and Mama helped them spell their name out correctly.

Finally, we completed the project with a cutsie photo!

One workbox contained a mirror and a page on which to draw a self portrait!

Piper set to right to work and impressed me with the likeness she drew!

I'm not quite sure about the tongue piercing though!

A fun activity was making outlines of the girls!

You should have heard the giggles as I traced around their armpits and feet!

Then they measured how tall they were in crayons...

And blocks!

Last but not least, they filled in those outlines with pretty colors!

Some more than others!

But there was one who was a bit more meticulous about her painting! :)

The girls took some time to make fingerprints and we talked about how they are different from anyone elses.

For this week's nature studies, we went for a walk at a local park and collected lots of beautiful leaves.

Later we made prints with the leaves!

I even got a little carried away with the joy of making autumn colored prints!

This week I got around to incorporating a few toddler specific actvities into our day for Taitum.

Because she is capable of attempting so much of what Piper does I haven't spent a ton of time focusing on Tot school.

But now that I have our school days under control as far as planning and such goes, I've begun to make a point of planning a few tot activities for Tait!

This week she had a ball playing with pipe cleaners and a strainer!

This was an idea I saw over at hands on : as we grow.

Taitum ended up spending quite a bit of time at this!

She also dotted all the 'A's in this apple printable from 1+1+1=1 while Pipe worked on something that was a bit too advanced for her.

As always, she thoroughly enjoyed getting to use the Do-A-Dot markers!

The cutest part was that she said 'A' with each dab of the marker!

'A' is the only letter she truly recognizes at this point so she was rather excited to see it on her page!

That was our week!

Or much of it, at least!

We also got to enjoy loads of time outside since the weather was beautiful!

And had enjoyable visits with friends!

Can't ask for much more than that, right?