Hello Hello...

It is 12:37am and I am just starting to type.  I really should be sleeping but my 5 hour energy drinks tend to kick in around this time.  I may possibly start drinking them around this time, that way I'm energized and ready to go at about noon the next day when I actually need to be:)

I first want to send out a HUGE thank you... 

#1: To Babble.com for hosting the "Mominees who are changing your world" contest this month.

#2: Again, to Melissa Pline, for nominating me for this award. 

and #3: To everyone who took time to vote for me!

I won in the Inspirational category and won $5,000 donated to the charity of my choice! 

I chose DebRA, as I am very grateful for the help they have given us directly after Tripp was born. 

To win this contest and see the people who voted for me and left comments on my nomination was so humbling.  I think this is the biggest honor I've ever received.  

I am truly blessed and I thank you all for making this possible. 

You can view my win HERE.  

Things have been just plain rough around here.  Today made 4 days straight that Tripp hasn't stood up to play.  He just rocks the entire day, occasionally smiling and playing a little in the rocker.  But mostly not even wanting to move much.  He's back to running his low grade fevers and pretty much just feels plain YUCK about 95% of the day.  He is currently on 2 antibiotics: one that I stopped today due to MASSIVE diarrhea, even with probiotics.  

And this is the latest on the G-CSF: The doctor who Dr. D and I are communicating with in Tennessee wanted us to get some baseline labs (blood work) before we could talk about starting this drug.  So we did... and (I think I mentioned this in a previous post) they were a bit out of whack.  His white blood cells were elevated and his platelets were elevated- which for Tripp, is what we are used to.  But, understandably, when a hematologist sees these labs, it's a little bit different.  He said that he couldn't start Tripp on the G-CSF with his blood counts like they were because he would probably have a stroke... (which is actually something that is possible on a daily basis with Tripp, being that his platelets stay so elevated).  But I totally understand his point of view.  So he told us that if we can get rid of the infection Tripp has (hmmm... which one?) that he would start him on the drug.  

Well... 

This now goes back to everything I said I was not going to do.  

The prying and the poking.  

BUT... I also don't think that I will have a clear conscience if I don't try this drug on him at least once, just to see what it does.  If it can give him a little relief anywhere- his mouth, his sores, his breathing... it will be worth it.  

So, right now we started him on 2 oral antibiotics (we are trying these one more time before we decide on any prying and poking).  One that is for his mouth/ears- in case he has an infection brewing there.  And the other one is the only one left that we think still treats the type of pseudomonas that is covering his body.  But the antibiotic for his mouth/ears is giving him diarrhea.  BAD.  So I stopped it today.  Diarrhea + bandages + an "already raw to begin with" butt = a nightmare.  

After we finish this antibiotic, then we will re-draw his blood work and see if his counts dropped then go from there.  Please pray that they drop so we can have the option of trying the G-CSF.  

His breathing has been just a little bit better.  He's been at the highest dose of oral steroids, on new and stronger nebulized steroids, and on continuous oxygen for about 5 days now.  I've had to start sedating him again for his baths because he gets so upset that he can't breathe.  When Dr. Rodriguez came to the house about a week ago, she looked down his trach with her scope and said that his airway was floppy and that every time that he went to breathe "out," his airway was collapsing.  Lovely, right?  So she ordered him a bigger and longer trach, hoping that we can "bypass" the floppy part of the airway.  Well, the trach came in today- I texted her- and she is coming in the morning to help me put it in (she's afraid it may be hard to get it past the "floppy" part) and then scope him again and make sure it's the right length.  Talk about service, right?  I am 110% positive that God hand-picked Tripp's doctors.  They are absolutely amazing and I could never say enough wonderful things about them.  Never once have I had to ask Dr. Rodriguez or Dr. Defusco to come to the house- they offer every time.  They are angels. 

So since Dr. R is coming in the morning, I did something horrible and skipped bath tonight! 

I know... this does NOT happen often, but mom and I decided that he was just feeling horrible, having way too much diarrhea, and if we were doing a trach change in the morning already, then we might as well just wait and do everything in the AM.  But as I'm laying next to my little angel right now, I'm thinking it wasn't the smartest idea because he's itching so bad and so restless in his sleep.  This proves to me that every other day is the only option for baths.  My poor bub:(

Guess what?? 

It's that time again... COLD AND FLU SEASON! 

And I know you all know that kids haven't been allowed in this house in over a year now, but I'm going to ask again that even if you are AROUND a child, adult, animal, or ANYTHING that even looks like it might have a cold or is sick, that you pretty please stay away:)  

I love you... but I love Tripp just a tad bit more. 

And right now, a simple cold could kill him.  Literally. 

And he's #1 priority, of course.  

Why?  

Because "Who's the cutest baby boy in the world??"

TRIPP IS! 

Duh :)

Love,

2 Lil' Cowboys & Loving Life!

Today marked the first official afternoon that I was alone with my two lil' cowboys.  My mom came home from the hospital with us last Thursday and stayed for a week.  It was great to have her around and I guarantee my laundry has never had such a quick turnaround.  Kallahan has seriously worn the same nightgown every night since he came home!  She helped me through all the emotions that I was feeling, mainly feeling overwhelmed with a new baby, working from home and with a three-year-old that is taking time to adjust to all the changes.  She helped me realize that I will need more help than I initially intended.  Thank heavens for Granny that has offered to take the boys as often as I need her to so that I can stay caught up on work. 

But even though we had a few rough patches today – mommy getting emotional when Grandma left & Keeler not eating dinner well to name a few – we did great!  I just love my little cowboys and know that I will get spoiled getting to spend so much time with them during my maternity leave.  I just want these next ten weeks to go by slow so that I can appreciate every minute.  I already love living at a slower pace and getting to do things that I normally miss out on.  I started editing some of the first week pics this evening.  Check out some of my favorites of my cowboys!    

“It’s not what we have in our life, but who we have in our life that counts." - J. M. Laurence

School in a Day

I promised I'd post about how we fit our school plans into our day.

This is my attempt to do that.

But don't forget that this is coming from an amateur.

I'm no where near having it all together.

In fact, there is generally one point in my everyday where I feel overwhelmed.

Then again, thats just motherhood for you!

What matters is that at the end of the day I still love being a mom, having the opportunity to be home with my kids and to teach them.

I wouldn't change any of it.

I am content.

Enough rambling.

Here goes.

My biggest help is this handy dandy binder.

It contains the master plan.

Plus a million other things.

I have a schedule for each day of things that I want to get accomplished.

A wannabe lesson plan, if you will.

Complete with book page numbers and activity descriptions.

At least until Christmas.

(Note to self: Get Christams planning done!!)

I keep a circle time plan in my binder.

75% of our learning happens here so its kinda important.

And my head is a little foggy at 9am.

(Yes, I'm one of those.)

A little guidance helps immensely!

A lot of lists can be found in my binder, too.

Like craft and activity ideas for upcoming themes.

Books I need to reserve at the library.

Songs we'll want to learn.

Its ALL there!

Finally, our calendar board is a huge source of organizing our learning.

We use it each morning during circle time.

The girls love being the ones to add the date or the weather.

The printables for our board were found at the following sites:

Calendar and Seasons: Montessori For Everyone

Weather and Yesterday, Today and Tomorrow?: Confessions of a Homeschooler

Color of the Day: 1+1+1=1

Memory Verse: Totally Tots

( We have some extra space left in the top left hand corner. I'm thinking we'll put a hundreds chart there to count to our 100th day of school (from 1+1+1=1). )

In terms of how we fit our school time into our day, its pretty simple.

We spend 30 -45 minutes in the morning (usually) doing our circle time.

This includes our calendar board activities, Bible lesson and All About Reading lesson.

Everything else (ie. nature studies, cooking lessons, math, french, and themed workbox activites) gets fit in where I can find a good place for it.

I try my best to do it on the day on which I had originally planned it in our schedule.

But it doesn't always work that way.

And it is rare that we accomplish everything I set out for us to do in the week.

As long as a good chunk of it gets done, I'm happy!

Also helpful has been my husband's suggestion to make Friday a free day!

Nothing is planned for that day.

Instead it is reserved for catching up on schoolwork or housework or simply to get out and do something fun!

(Sometimes I do all 3!)

But its been wonderful in giving me some space to get things completed!

I'm enjoying this new level of organization for us this year.

It keeps me in order and not feeling like I'm pulling things together at the last minute.

Running around like a chicken with my head cut off is never fun!

As well, I love that homeschooling is something that you incorporate into your life.

The idea that you sit you kids at a desk for 8 hours a day in the basement is a false one.

We're living together, learning together and growing together.

And its beautiful.

(And frustrating and rewarding and time consuming and a blessing...)

In the end, I have no advice for how to 'do it all'.

Except to say that you simply don't.

Nor can you.

Its all a process of learning how to balance and manage it all and deciding what's most important.

A domestic triage, perhaps?

Links Worth Sharing

Thought I'd share a couple of great links with you before the new week really takes off!

Need some ideas for practicing pre-writing skills with your preschooler? Teach Preschool has some great ideas demonstrated in a video segment! Check it out!

Ever thought about the effect your stress has on your kids? Children and Secondhand Stress is worth considering...

Finally, a must read: Motherhood Is Application - "The gospel is not just something to talk about Sunday morning while you are in clean clothes and the kids are looking orderly. It is not limited to quiet times and reflective moods. It is something to apply while you are in a difficult position in the back of the car trying to buckle a child up who is playing the kazoo and needs their nose wiped. "

Enjoy and have a lovely week!

Kallahan Arrives!

Kallahan Troy Baker

Birthday:  09.19.11  /  Time: 8:00am

Weight: 6lbs 5.3oz.

Length: 19”

Head: 13.75”

Chest: 12”

Photo Collage by Sabra Turner Designs

Welcome to the family our newest little cowboy!  I have to start by reporting we are truly blessed with the most precious, perfect little cowboy named Kallahan Troy!  I feel  overwhelmingly privileged to be his mommy!!  So far, he really is like having a baby doll at home.  Such an easy baby, he wakes to eat every 3-4 hours and sleeps peacefully through all the chaos that surrounds him.  Our house has been quite busy with a lot visitors since we got home on Thursday.  We are so happy that everyone is getting to meet our precious addition.        

As most of you know, I experienced a pancreatic attack on Sunday which resulted in the doctor inducing delivery.  Kallahan was born at 8am on Monday @ 37 weeks.  This was so much better timing than with Keeler because with him I had to suffer through the pancreatitis for over a week until he was mature enough to induce.  With Kallahan at 37 weeks there was minimal concern for his well being.  So, in that case the pancreatitis has not been as bad.  My levels were high but not near as high as they were with Keeler.  For treatment, I was first put on a liquid diet after delivery but then my levels continued to increase.  So, they decided to completely rest my system and I was placed on IV fluids only.  With that treatment, my levels decreased overnight – praise the Lord!  After one more day of liquids and the completion on one solid meal my levels decreased enough that Kallahan & I got to come home on Thursday.   

Finally our little family of four was united.  Cowboy Keeler has done so well with welcoming Kallahan into our lives.  He had a nice vacation while we were in the hospital.  He stayed with Granny and loved all the attention.  He visited the hospital regularly and seemed to take to the idea of us possibly relocating there too well.  He actually called the waiting room his “living room”  - which was filled with books and toys that he and his grandparents enjoyed.  For his first show and tell at preschool he took a little wagon full of "It's a boy" suckers for his friends and proudly showed them pictures of his new baby brother.

It has been so nice to be back home.  I won’t lie, the last two days have been an emotional roller coaster.  Between the hormones, the pain medication and the surge of emotions I have been a basket case.  I just want to treasure every moment since they grow up so fast.  Luckily, we have the best support team to help us adjust.  We want to thank our family and friends for the prayer, support and concern throughout the entire ordeal.   I truly feel like the luckiest mommy in the world! 

 

 "Nothing is as precious or brings home so much love, as a brand new baby sent from above."

Roller Coaster of a Week

This week I felt like I was really dragging my feet.

Too many busy weekends in a row meant that I hadn't been able to catch up on sleep.

And I was feeling it!

Somehow we were able to keep up with school though.

And despite not accomplishing everything planned, it ended up being educationally packed anyways.

Our fav project of the week?

Our own little Garden of Eden.

Complete with Adam and Eve peg people!

Piper made us all a mean lunch of strawberry banana sandwiches on cinnamon raisin bread.

I think she's found her calling!

And we're moving right along with our alphabet!

Full speed ahead!

There may have been some trouble on the home front though...

Notice the chore list in the corner?

Yep.

One check mark.

I cleaned the bathroom.

And don't let that menu fool you.

It was followed two fifths of the time.

But our saying as of late is "Chill out, dude."

And I'm trying.

Really trying.

Life is not an emergency.

Life's a gift.

Just slow.

This little purchase brought some cheer to my poor, neglected home.

The smell of autumn in a candle.

For less than $5.

Which makes it smell even better!

And I was a tad too excited about this purchase.

I'm just a little overly pumped about our dinosaur theme planned for January!

Then I had a good laugh when I went to meet my obstetrician for the first time.

After sharing that I had breastfed both of my girls successfully and with no complications they proceeded to ask several times if I'd like to attend the breastfeeding clinic!

Um, pass.

I'm pretty sure practicing on a teddy bear is unnecessary at this point!



The week ended beautifully with my hubby taking me out for supper

(whoohoo for a 'no cooking' night!)

And my in-laws kept the girls for the night.

*Inject happy sigh*

I even went a little crazy and bought a whole bucket of candy to eat while we watched all the season premieres we missed during the week!

I didn't even mind that I looked like a stereotypical preggo walking out of the store with only a bucket of candy in hand!

But it did make me miss Germany.

And Haribo.

And orange Fanta.

Mmmmm...

As the saying goes, all good things must come to an end.

Tonight I find myself ever so grateful for intense cleaning tools.

Like Lysol wipes.

I'm all for natural cleaning products until my kid pukes all over her room.

Me and Lysol are besties at the moment.

But I might not be eating crunchy peanut butter for a good long time....



And so, we finish the week off with a family movie night, a bucket on the floor, a little sister keeping an eye out for her most favorite companion and hopes that maybe we'll make it through the night with no other incidents!

What a roller coaster!

I'm just so glad that there is so much happy to balance out the exhausting, disgusting and disappointing!

Isn't that just the life of a mother?

I think my best advice is to always look for the good.

Believe it or not, its there.

And when you find it and dwell on it, it overrides everything else!

Dear Bubba

I used to treasure my life,

Long before there was you.

I was selfish and clueless.

And invincible too.

I carried you in my belly,

While I fed my big behind.

With thoughts of an unhealthy baby,

Not once crossing my mind.

I was oblivious to the real world,

But my dreams were coming true. 

I was having a child of my own,

Anticipating days of "me and you."

You might think that the words "EB"

Hit me like a ton a bricks.

But it took Mommy a long time,

To realize this wasn't something I could fix. 

So here I am two years later,

Staring at your beautiful, raw face. 

Praying to God so desperately,

To let me take your place. 

You see, my Dear Bubba... 

I still treasure my life- but at a different length. 

Because now YOU are the center,

My heart, my soul, my strength.

I would go before you. 

I promise you I would. 

I'd give up everything here, 

If it meant that I could. 

I would take all of your pain. 

And put aside my dismay.

I would give up my life in a second, 

If it meant that you could stay. 

Free of sores, bandages and pain,

Just like a healthy boy.

If you could talk, sing, run or jump,

And live a life you could enjoy.

You might think I'm just saying this,

Because that's what a "mommy" would do.

But I mean every single word-

I'd give my life for you. 

"He won't live to be a year."

Those words cut like knives.

But little did they know...

You were put here to touch lives.

Oh, Bubba, it's so unfair. 

And everyone thinks so, too. 

It's a hard thing to comprehend, 

Why all of this suffering was given to you. 

And as the months have passed, 

I realize more and more. 

Why you were given this cross,

And why you're impossible to ignore.

Only you, Bub, could do it.

Your will to fight is like no other.

No one could possibly take your place,

Not even me, your mother. 

So even if I make bargains with God,

And beg and cry and plead.

I know He'll never let us trade. 

For He knew your role, indeed.

There's no doubt that you're a saint. 

Free of sin, innocent, and pure.

And this, Dear Bubba, I promise you...

For EB- we'll find a cure. 

I don't know how long it will take, 

Or if it will be too late. 

I do know one thing, though. 

You don't deserve to wait. 

So here is my prayer, God. 

I know, right? Not again?

"Give him peace here or peace in Heaven, 

My Dear Bubba."   

Amen. 

-Written by Mommy

9/24/11

Preschool Line-Up: Math, French and Phys. Ed.

Well, this is my last 'Preschool Line-Up' post!

That's right - we've come to the end of all of this years endevours!

I will take some time in days to come to explain how we fit these things into our week because from here it can look crazy and overwhelming!

I'm not even close to figuring it all out but I am learning a lot!

(And you thought it was just the kids who were learning!)

Let's start with Math!

Our main mode of study for math comes from this little book: MathArts.

Its full of crafty ideas that focus on building early math skills!

Genius, in my opinion!

Kids create masterpieces and learn math in the process!

For example, last week Piper made a bottle cap treasure board!

Not only did it provide a pretty spot to display our nature study findings, it also taught one-to-one correspondance!

The lovely thing about this book is that the materials needed are quite simple and the projects are fun and very kid-oriented!

Piper also has a math workbook for practicing writing numbers.

So far, its had little use.

When there is some spare time and she's up to it, I pull it out.

But at this point I'm not a big fan of offering workbooks and concentrating on copywork.

Right now strengthening those little hand muscles through various fine motor skill activites and strengthening the brain with counting, sequencing and matching activities are more important!

(That said, if your kid is really intent on workbook type work, follow their interest! I simply have not found it very successful for Piper at this time!)

We also pulled our Mighty Minds set out again.

I had ordered it last year for Piper as it was part of the Sonlight P3/4 curriculum.

It proved to be too advanced for Pipe, so I packed it away for awhile.

This year is a whole new story!

Not only is she capable of completeing the tasks but she enjoys doing it!

I just love watching her little mind figure the designs out and how excited she gets when she completes a card!

This year I have begun to purposefully introduce French into our learning.

Last year we simply worked on counting to ten in french and Piper caught on extremely fast.

Not only that but I have also marveled at their correct usage of Spanish words they've learned from Dora in everyday life.

I figured I'd be crazy to not start introducing some french vocabulary on a regular basis!

We're starting with colors and will add other common words as the year goes on.

Piper works on a page of her Basic French workbook each week.

Its quite helpful and well suited for her age group in that there is not much copywork but mainly coloring activites and such that require knowledge of the french word in order to be completed.

My First French Book is being used in our circle time to introduce and dialogue about the words we are learning.

Finally, we can't forget about Phys. Ed.

What kid doesn't like that class??

They are generally just aching to move and stretch those muscles!

Eventually (ie. when I'm not pregnant!) I intend to incorporate a kid friendly exercise video into our daily routine.

For now, we're content to take a daily walk or trip to the park.

I also make a point of involving the girls in classes outside our home.

There are some things that I just can't teach them.

Like dance.

Its just not happening no matter how ambitious I am!

So through the school year Piper goes to a weekly class that she is crazy about and has a load of fun at!

As well, both girls attend a swimming class each week.

Not only do they adore the water but its a skill that we feel is very important for them to learn!

That wraps up all of this year's homeschooling plans!

Don't be too sad -

I'll be posting regularly about many of our educational adventures!

We're already off to a great start and looking forward to all this year holds!

I'm just a little bit...

FRUSTRATED. 

It feels as if we are at a stand still... and all I want is just a little relief for my baby. 

I'll start by very briefly explaining the new drug I mentioned in my last post.  It's called G-CSF (that's actually the classification).  It is used to stimulate the production of granulocytes (a type of white blood cell) in patients undergoing a certain therapy that will lower your white blood cell counts.  This medication is used to prevent infection and fevers caused by chemotherapy.  I know of it as being used before the Bone Marrow Transplants in EB kids.  If I understand correctly, it's used about 5 days prior to starting the transplant.  Some EB patients that took this prior to their transplants started feeling better within the next day- their mouth healing, skin clearing up, etc.  But then the transplant began after the 5 days...

Now there is no data on this drug being used just to help stimulate "healing" in the mouth, esophagus, or skin.  It's never been used in this way before.  Now most of you know that some of the children that made it through the transplants are doing okay, but some of them are worse than before the transplants.  Most every one is different.  One of the transplant patients started the G-CSF strictly to "see what it would do," and had some good results within a few days, but then had to stop it due to a secondary infection.  

And if you know me... you know that I want this drug like yesterday.  I mean, what do we have to lose, right?  My baby's time clock is ticking...

So another super EB mommy got me in touch with this doctor and I practically begged him to let us try it on Tripp.  He was so nice.  I felt like he really cared and he was really willing to help us.  The problem is that this is brand new and no one knows short term or long term side effects of using this drug in this way.  AND he doesn't think the drug will do anything as long as Tripp is on steroids (which he's been on for about 2 years now).  And the steroids are difficult to taper off when you've been on them for so long.  But he told us that if I could do a viral swab in his mouth (and make sure the herpes virus wasn't lingering around in there again), try and taper his steroids down to about 2 mls, and draw some baseline labs on him... then we could talk about it.  So between me, Dr. Defusco, and our SUPER great and wonderful home health nurse, Kati Corso- we got the swab done and the labs drawn.  And I had already begun tapering his steroids.  

Viral swabs were negative (I guess that's one good thing), but his breathing starting getting wheezing when I started tapering his steroids, and his blood work was all over the place.  Electrolytes were up and down and crazy numbers... and he was more anemic than any blood work has shown before.  Go figure.  My excitement turned to disappointment really fast.  

Dr. D thinks I may have tapered his steroids too fast.  Which I probably did in the excitement of actually being able to try a drug that could make him feel a little better.  But doing that is bad- and it was a wake up call for both of us when we saw his labs.  I didn't think I tapered too fast.  I went down about a ml a day and then stayed at 3 mls for 2 days and then went to 2 mls.  Which is something that I actually do about once every 2 months (but I usually stay at around 3 mls).  I don't know... we aren't actually sure what made his blood work so out of whack, but we are going to try and draw new labs tomorrow to make sure these were accurate.  Which means more poking on sweet Tripp... ugh. 

SO... this of course means that this drug gets put on hold until we can get him stable enough to be able to try it (I'm assuming).  It's just frustrating.  This drug is no where near a "cure," I'm very aware... but if it can just help even his mouth to feel a little bit better (his mouth is just horrible right now)... I'm going to fight for it.  Like an angry momma tiger.  Grrr...

And what's my next frustration, you might ask? :)

Bath time.

Like I said in my previous post, I've been having to heavily sedate my little bubba at bath time.  I hate this.  The sedative I use drops his blood pressure and he trembles and his little teeth chatter.  And as yucky as I bet it makes him feel, it usually only lasts for about half of the dressing change.  Usually either the first half or the last half... never the whole time.  And then lately, after he's finished he's been wanting to play because I guess he feels better afterwards... but he's to sedated to really even stand up.  And that just makes me feel horrible because usually after bath was his most favorite time to play because he felt so good.

SO.

We tried bath tonight with no sedative.  Just the pain medicine and the anxiety medicine (not for mommy, for Tripp:).  He tried to flip over about 3 times when I first laid him down, but then we were able to talk him out of it and calm him down enough to let us unbandage him.  And bath was actually okay.  It was almost back to how it was before he was really sick.  He still cried, of course, but not to the point where it was unbearable.  

And then, of course, when we finished- he felt horrible and had no interest in playing.  

Really? 

I just don't know what the answer is anymore.  Everything is trial and error, but it's like nothing ever works the same way twice.  His poor little body must be so messed up from so many different medicines.  It's probably just plain confused.  I wish we could do to Tripp what my grandpa used to say about himself... "Why don't y'all just take me off all this medicine and see what happens?

That's not a bad idea, Paw Paw.... I might try it. 

On a brighter note, we did receive Tripp's song and an autographed picture from the one and only Elmo:)

I just made a simple little iMovie with two pictures because that's the only way I knew how to share the audio file that was sent.  

He sent us a whole CD of songs, but this version of "Tripp's world" was the only one I was told I could share! 

And what Elmo says, goes!:)

Tripp loves hearing his name in the song. 

Much love to you, Elmo... much love. 

I'll keep you guys posted on what happens with the G-CSF.  I'm hopeful.  I'm just not getting too excited about it because I know it's only a temporary fix if (any fix at all).  But like I said, if it can give this baby just a little bit of relief, it's worth it.  

I'm so emotionally exhausted seeing him in pain... being the one causing him the pain by doing what I have to do to keep him as clean and healthy as possible.  It's heart wrenching.  It really is. 

But moments like this are what keep me going...

This is occasionally what happens when I say, "Smile for Nanny!"

I love this little ham.

Love,