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,

Preschool Line-Up: Bible Beginnings

We teach our kids about God and the Bible.

Surprised?

I didn't think so!

If you know us, you know that learning about God and His Word is a part of our everyday.

Our faith is the most important aspect of raising and teaching our kids.

So it only makes sense that I would incorporate a concentrated Bible time into our day.

Piper is at the point of being able to learn and remember various Bible stories and this is the first year that she has been able to learn and retain a memory verse with ease!

Our Bible time routine has changed from last year though -

we now read one story from The Beginner's Bible each day of the week.

The repetition of the same story all week has been very effective with the girls.

They remember much better what the story was about.

Then, I use the Beginning With God activity book to help introduce the story and the activites suggested in it to reinforce what we are learning.

There is a 'Make It and Munch It' section of the book that supplies a craft idea to accompany the story.

The ideas are very simple but quite effective at driving the point home.

The girls completed this craft after learning about how Adam took care of all the animals in the garden but couldn't find a friend who was suitable for him.

The girls stuck animal stickers all around stick figure Adam:

Then God made Eve to be the perfect mate for him. Thus the foam hearts pasted all around stick figure Adam and Eve! :)

Very simple but they LOVED it!

Memorizing Bible verses and the Catechism for Young Children has been incorporated into our circle time routine.

Last year we used Songs for Saplings to help us learn memory verses.

It was fun and the kids still love listening to it!

This year though, we are using Seeds Family Worship: Seeds of Courage CD and is it ever great!

I even love the music and the girls and I have a great time dancing around and belting the verses out at the top of our lungs!

Check it out for yourself to see what I mean!

Additionally there are numerous printables that you can find to go along with each verse at In My Heart @ Totally Tots.

It is so neat to see Piper be able to memorize these verses and get so excited about reciting them!

Often it is one of the first things we do in circle time because she just can't wait to say her verse!

During circle time we also learn songs that are commonly sung at our church.

I think it is important that the kids recognize the songs when they are sung in church and they be able to sing along as much as possible.

So, every morning we sing the Doxology.

(For the first little while Piper would ask to sing 'the ducks'! lol)

As well, we are in the process of learning Oh Protector of my Soul.

I wasn't totally sure how well it would go trying to teach the kids songs that weren't kid oriented.

But the more I read, the more I realized that they were more than capable of not just learning these songs but enjoying them!

This has proven true!

They are very excited every day to sing our songs!

Of course, there is generally a request for 'Jesus Loves Me' and thats OK too!

I am thoroughly enjoying singing together with my girls about the God I love!

Finally, I would like to highly recommend The Jesus Storybook Bible.

It is by far the best children's story Bible I have ever read.

I even learned new things from it!

The author, Sally Lloyd-Jones, does a beautiful job of showing how every story "whispers His name".

There are numerous videos of various stories on the Jesus Storybook Bible Facebook page to give you an idea of what it is like.

Well worth checking out!

{Almost} Fall, Y’all!

 

The calendar is soooooo wrong this year.  Fall in the Bluegrass State started Labor Day weekend when the temp dropped like 40 degrees overnight.  This summer lovin’ girl wasn’t quite ready for the change.  I feel like I just put my boots away, and suddenly it’s time to break them out again.  Am I right in saying this is an El Nino-esque year?  I don’t remember if it is Nino or Nina, but whoever it is is supposed to be bringing us “lots of precipitation” this winter {read: SNOW}.  Grrr.  I’m partial to that white stuff only in December, particularly on Christmas, so I’d rather not have 6 months of it despite my Ugg boot fetish. 

I will say that I’m kinda enjoying our early fall.  Only kinda though.  And mostly because of spiced everything.  Spiced candles, cake and coffee are 12 kinds of up my ally. 

Exhibit A:

We’re Keurig-ers at our house (Father’s Day gift to B this past year), and I about died when I saw the fall sampler pack last night at Bed, Bath, and Beyond.  {Yes, we’re totally Old School, and our dates now include trips to BB&B.}  Um, Pumpkin Spice Lattes and Apple Cider? YES, PUH-LEASE!

Us on our date with my sister, Chelsea and her hubs, Matt.  We had so much fun!  The only thing that would have made it better was if Aubs could’ve been there, too!

Exhibit B:

I couldn’t escape BB&B without a new Yankee Candle.  Also, I had about $5 more left to spend to use my coupon. Ha!  So, I went with Apple Cider.  It was a good, good choice.  She burned all day and made my house smell all kinds of fantastic.

Exhibit C:

Then, today, the pumpkin and I made chili, cornbread muffins, and the simplest and most delicious Apple Cider cake you ever did eat (credit: Chels for giving me the recipe, though you can find the deets HERE). 

I should have clarified, Captain Pumpkin.  Don’t ask.  I have no idea.

I forgot to add the powdered sugar to the pic, but you’ll need that, too, to make the glaze.  Other than that, this is everything you need for the cake and the glaze.

Shockingly, the cake batter is just the cake mix and 15 oz of pumpkin puree!  That’s it! And they look this beautiful when the emerge.  And your house will smell *ah-mazing.*

And the final product?  Oh. My. YUM.  It might be overkill, but I can promise you I will be eating a slice of this with my pumpkin spice latte in the morning :)

 

Have a fantastic week, bloggy friends!

TWO!

When we woke up this morning, my baby wasn't one anymore...

I might have been sad if she didn't endlessly give me so many reasons to smile!

Like this expression when Mama brought out a Toaster Strudel with a 2 candle in it!

Accompanied by her 2 favorite breakfasts foods - a smoothie and eggs - we were off to a good start!

She was then delighted by her sister's gift (it pays to have a big sis who is a mean Dollarama shopper!)

And spent some time making dolly talk at the Melissa and Doug Doorbell House.

But soon it was time for some b-day adventures!

And what does this girl love to do?

Well, dance for one!

And wouldn't you know - the Harvest Jazz and Blues Festival was happening right around the corner!

She even got to show off her mad skills on the violin! ;)

After nap, we took the 'plunge' and did her other favorite thing - swim!

...and indulge birthday girl's obsession with the water slide...

To end the day, we went to the last place I was before my water broke and baby Taitum arrived - Rocky Mountain Chocolate Factory!

(As legend would have it, it was one of their delicious apples that brought on labor. I'll be buying my fair share again in January! ha!)

Tait was not disappointed with this sweet treat!

Definitely worth entering the world for!

Happy 2nd Birthday, Taitum Jubilee!!

You're as precious as can be!

I love you so very much!