Finals & Feelings

I'm blogging from the bath tub right now. The warmest room in the house... It's nice & quiet in here. I'd brought my history book ong with me in high hopes of accomplishing some reading but was distracted by a game of Angey Birds! The RIO version! Awesome game!

Finals are coming up and I'm NOT looking forward to it/ them. I have such mixed emotions about school. I love learning new things but hates the time that it takes away from my family. I hate missing out on time with my girls, even when they aren't doing much. I can't wait to graduate in May, but I'm not even motivated to enroll for the upcoming semester. I'm sure I will though... Just not real sure how somone can successfully manage 4 online classes & possibly move across country at the same time. Ugh!! Just the thought of that is frustrating!

A is doing awesome lately and since my last post she has started preschool 2 days a week. She loves her teachers & all the crafts she gets to do. She can't wait to go to "ghoul" on her school days!

D is having a successful kindergarten term & is awaiting testing for the gifted program! No big surprise to us though, we've known she was bright since birth! There had to be some explanation for an infant who never slept and was almost adult like. I guess I'll post about the results when they come in.

Happy Birthday Ariah!

July 14th was Ariah's third birthday!  She is such a blessing and an amazing picture of strength and beauty.  I can't believe that she is three... it actually makes me kind of sad.  But, she will always be my baby!  We started her day out right with a six hour road trip.  Unfortunately there was little to no celebration in the car since between the arguments, naps and singing songs we had little time to "party!"  We did however go to Build a Bear a little while after getting home.  It was fun for the girls but I really think it was over priced for what it was... but we do have two very cute stuffed CATS to show for it!  Ariah chose a Hello Kitty and named it Hello Kitty Cat!  Danica made a pretty pink & white cat names Ashla!  Such good names!

Ariah's "real" birthday party is coming up and I'm not very motivated to get anything done for it.  In fact I haven't bought ONE thing yet and it is in 7 days.  Guess Im just really not ready for her to be so BIG... I remember my little girl that could stand up at the age of 6 months old and that somehow got herself into a moving box.  My baby that crawled into the fire place to taste the remaining soot in the middle of summer... My baby who never could seem to get enough to eat and would eat everything!  But now my baby is bigger and has some very cute habits... she loves all small things and everything that is little is a "baby".  She is convinced she will grow backwards and one day be a teeny tiny baby again and I will have to carry her everywhere (something she talks about daily!).  Her newest habit is to beg for me to rock her to sleep and she now plays with my ear while falling asleep.  Ordinarily I don't rock her to sleep but some nights when she is up way past her bedtime (as usual for her!), I do and it's so nice to know she still needs me!  

Me and the girls July 2011

Me, Ariah and Danica July 4, 2010

Ariah, Me, Danica July 4, 2009

The light at the end of the tunnel

Just as I thought things were starting to look up for us this summer we are yet again faced with a road block.  This time it is financial in nature and completely due to a mistake that a male household member made... (bills paid online twice.. it happens! LOL) But we will somehow make it through and be just fine.  I mean surely it is possible for three people to live off of $2.57 a day for 13 days, and if not then I can drain our savings account- what's left of it.  As some of you know Jake is not in the country right now and things tend to really go bad when he is gone.  But so far this detachment has been a breeze in comparison to ones in the past.  No one has died, been to the emergency room or admitted to a hospital... & it seems like my girls really can be normal kids in Texas as long as I take the proper precautions before hand.  We were even able to play outside this week in the pool and go to a splash park in the middle of the afternoon!  I am so thankful for the opportunity to let them be little and just play!

Danica & Ariah enjoying an afternoon snack in the backyard.  

A day in the life of...

So, I should start out by saying that this entry is for those of you who wonder what in the heck it is that SAHM's do ALL day...?!?  Oh and SAHM means Stay At Home Mom- though I'm NOT always home.

Anyway, here it is!
I will start at midnight -YES MIDNIGHT!- on June 13th.  Why Midnight? Because one of my children had just fallen asleep at 12:01 am and so it begins at midnight!

12:01 am- A is finally out for the night, only 30 minutes behind her big sister and yet I know she will be the one who is up first and the only member in our house who somehow wakes fully rested.

7:00 am- A wanders into my bedroom and removes her pull up on the way in... only problem is that it started leaking hours ago so she is soaked and stinky.

7:05 am- as I'm laying in bed with a naked, half smelly toddler D walks in demanding that she get in the tub with her "soap" because she is itchy.  This soap is not soap at all but it a paste of Apple Cider Vinegar and baking soda that she rubs all over.

7:10 - 8:00 am- kids are in the tub, half playing and half arguing over who gets to touch what toy and in what order.  I sit on the toilet seat (just sitting!) and listen, direct and wash kids.

8:10 am- A is now fully dressed to her approval and D is flopping around on the floor complaining about the pants that SHE picked out... this does not end until 10 but the show must go on, right?

8:30 am- BREAKFAST- well at least for the kids...

9:00 am- A decided to play in her toy room while D continued to throw her fit so I snuck off to take a shower.  My shower lasted about 7 minutes and that time included me "getting ready" for the day.  Not a pretty picture as I'm sure you can imagine!

9:20 am- pick up breakfast dishes and eat remaining oatmeal out of D's bowl... YUMMY!

The next 45 minutes is spent in an attempt to get you know who to put her shoes on by herself... she's 5 and they slip on so I refused to "help"

10:30 - arrive at the YMCA for mom and me class!  We had a good time

11-12- ME TIME!  Kids in the nursery and me on some random piece of workout equipment trying to look like Im awake.

12:10 pm- Arrive at Target for the sole purpose of buying juice and milk... EPIC FAILURE> I would NOT let A get some nasty all dye and no juice fruit punch so she threw one of her very long and very LOUD tantrums... she was half hanging out of the cart during the whole ordeal as she refused to sit or walk or be carried.  I bought 100% APPLE JUICE thank You!

12:30 pm- Get home and start cooking lunch, a lunch that no one ate and all went to the dog.  But at least I can say I tried.  While cooking I had to make an important phone call and during this time the kids decided to throw down... I sent A to the potty to buy me some time!  LOL something Im sure I can only do during this potty training phase, but I was so thankful to be able to distract her!

1:00- after no one eating because all they wanted was juice or bc there food touched I decided to attempt to get them to nap...

1:30 I left the bedroom to clean up from lunch.  1:30 is also when A decided it was more fun to be a monkey than to sleep... whatever... I went in the room after about 15 minutes of listening to their insane laughter and turned the light on and told them they could read books.

2:00- they wonder out and demand ice cream... I then have to inform them that they can have grapes NOT ice cream and that if they would have eaten their lunch then blah blah blah... I get tears and screams... we all scream for ice cream!  JOY!

2:30 ish... they began to settle down but only bc I turned on some movie about going to Mars... they watched it while I did the laundry... oh and they ate pretzels not grapes... but still better than ice cream

3:00 we made a chain of paper chains to represent the number of days their daddy will be gone... D got the concept, A did not.  A cut things out of a catalog and glued them to paper...  but we had fun anyway

4:00 kids start to get bored with artwork and sine it was only 100 degrees out and the UV index was starting to dip decided we could play outside.  I snuck out and filed the pool and hung yet another sun shade...

4:10 let the bathing suit battle begin!  D wanted to wear her bikini... A NO NO for PMLE kids... but I let her wear it and covered every inch of her in Lizard Lotion.

4:15 go outside!  This is where I did sit and relax... kind of... if getting splashed and having mud flung at you is relaxing  :) but this was by far the highlight of my day since the girls were having a blast!

5:00 RUN inside and grab food to feed the girls outside!  they ate canteloupe, the whole thing!  I offered other things but once again they didnt want those things.

6:00 hose kids off and head inside.

6:15 get on pj's

6:30 turn on Go Diego Go... hoping this would help them unwind... it didnt.  Damn Diego and Dora!  Always wanting kids to yell at the tv!!!  I would have preferred Spongebob over those two but it wasnt on...!?!

7:00 pm- brush teeth, read book tuck kids in... for the first time anyway.

7:30 pm remind kids that it is bedtime and not play time.

7:45 pm- now mommy is losing patience and they are getting whinier every minute.

8:00 D falls asleep and A wakes her by climbing on her bed... UGH!!!

8:10 pm- both kids are screaming "MOMMY I WANT YOU!" as I am attempting to put my dinner in the oven....

8:30 pm- A is crying so hard that her whole body is red.  Great!  so I lay down in the middle of D's twin bed, one kid on each side.  A passes right out but D keeps singing quietly to herself and wants me to scratch her back.  So I do, for 30 minutes!

9:00 pm- I tell D that she needs to fall asleep now... she does...

9-10 pm talk on the phone to my mom while feeding the guinea pig, dogs, and cleaning up the living room...

10- BLOG

so that is what I did all day!

Wake up call

Here it is 2:38 am and Danica is watching Little Bear on Nick Jr.  Quality parenting right.  I told her she could watch one show after she took her medicines, she was begging anyways.  So now she is half sleeping, half watching and sipping her beloved "miky".  She is once again covered in PMLE rash despite our best efforts to protect her.  She was wearing sun protective clothing, SPF 110 *yes they make such a thing!* and playing in a very shaded backyard, all after 4pm.  So now what... can she just not go outside?  Im seriously confused and it looks like yet again she will miss school and we will be at the dermatologist office.  (primarily to get a refill on meds and to ask why she is sooo sensitive and to see what else we should be doing... unfortunately once they start to get the rash it just has to run its course, usually about a week)

Tomorrow *today really* is field day at school and the last day of school as well.  She was really looking forward to getting a snow cone and playing one last time with her friends.  But on the up side she has a class at the YMCA tomorrow and Im babysitting one of her friends so I guess we will have to make due.  We've also got to drag her out to get her labs done... something I tried previously to do but was asked to leave since she threw such a huge fit!  Im positive it will take both Jake and I to hold her down... not that blood work really hurts but she has NO tolerance for pain and a major fear of needles.

Its going to be a LONG summer with NO sun... we are very open to suggestions on what to do with two children who cannot enjoy the great outdoors... I guess its time to stock up on playdough, rice bins with sand toys and all the other things we used to do to pass the time in South Texas...   Oh and the play date we are hosting on Tuesday... well... can we all just meet at McDonalds by the mall instead?!?  LOL!  we will have to cancel... unless your boys want to come over and play with Barbie and her super cool house!

D & A- EXPLAINED

It has come to my attention that I should clarify a few things...
***D*** is our oldest daughter, she just turned 5 years old and will enter kindergarten in the fall. She's a Girly girl & so smart! (I'm not just saying that either, the kid spoke full sentences at 12 months old!). D loves the color pink, kidz bop songs, barbies & digging in the dirt. When she grows up she wants to be nothing less than a "stage star!". D is our child with the sun allergy. And although we've always known something may be wrong with her we never knew, until late, what was wrong. (okay thats not entirely true, remember that denial is a powerful thing and that sometimes we only hear what we want too) Now, if nothing else, we know... She is an awesome vibrant child!

***A*** is our youngest daughter, she is almost 3 years old. A is a little wild child and an angel baby all wrapped up in one mighty Package! Her hazel eyes and toothy grin warms everyone's heart! Like her big sister she too is very intelligent!  At five months old A was diagnosed with Mastocytosis.  Initially we were devastated by her diagnosis but have since learned to live with it.  She takes daily antihistamines and has to have an epi pen near her at all times.  Children with Mastocytosis have too many mast cells in their bodies. Mast cells release histamine and causes itching, diarrhea, vomiting, flushing, and in severe cases can lower blood pressure.  Some mast cell reactions can be life threatening.  For A we have to avoid any insect in the hymenoptra classification (bees, wasps, fire ants) these are known to cause anaphylaxis for her.  Heat is another thing we have to avoid because heat triggers her mast cells to release histamine and then we have an itchy, sick child.  So A wears a cooling vest outside in temps over 77 degrees.  Her disease is far more complex than I can explain and I don't know how it is that I understand it but cannot explain it, but thats how it is for me.  In the past ten months she has had two hospitalizations, multiple er visits and at least 3 dozen office visits... Aug 22, 2011 will mark one year OUT of the Hospital for A!!!  Fingers crossed that we get to celebrate that victory!  I should also mention that ppl with masto sometimes have spotted skin, A does, and that there is NO known cure

you cAN LEARN MORE ABOUT MASTO AT WWW.MASTOKIDS.ORg or www.tmsforacuRE.ORG  (A IS PLAYING WITH THE caps lock button...)

Stages of Mourning

I've always found it interesting how differently people cope with death and loss, and now I find myself doing just that.  I am trying to cope with a huge loss of normalcy and to regain some footing in this new and scary world.  Yesterday it was confirmed that our oldest daughter has PMLE (Polymorphic light eruption- sun allergy).  Yes, sun allergy... so now we have to learn how to keep her healthy and still allow her to be a child and have a childhood.  Two very complicated tasks that seem to be mutually exclusive.  Though technically no one is dead, or even going to die, I am definitely struggling with the diagnosis.  Just when we got a handle on things with our youngest rare medical condition this happens.  There is just no simple way about it.

Stage 1: Denial and Isolation- about three weeks ago we were told she probably had PMLE but that it could have also been a number of other things and so we were hopeful (in denial).  I knew deep in my gut that it was PMLE causing her to have a horrible red itchy rash, but I completely tried to believe it could be something else.  Isolation is something I cant handle since by nature I'm a fairly social person.  And how do you explain to people that you have two children with unrelated conditions but that both conditions leave them unable to play outside in the heat and sun?  Its just not so simple and people can be so cruel.  It is my experience that when initially faced with these challenges it is best to withdraw.

Stage 2: Anger- I'm down right pissed off about all of this and I don't even know if I have the right to be.  It's the hardest thing right now.  I want my children to just be normal and run around in a sprinkler without all kinds of preventive measures taking place before hand.  I want my oldest child to be able to wear her favorite dress and ride her bike.  I don't want them to have to listen to their mom helplessly try to answer strangers stupid questions or have to deal with the stares.  So yes, Im angry... I guess this is where Im at right now.  I think I am somewhat quickly progressing while other family members and still in denial and this is all the more frustrating!

Stage 3: Bargaining... I hope to skip this step as there is nothing I can do to change this

Stage 4: Depression- sometimes all we really need is a hug... but I'm not a hugger so please don't touch me

Stage 5: Acceptance- I know I can learn to accept this for what it is.  I can accept the fact that A has mastocytosis than surely I can make sense of this PMLE too...

You may be wondering what is PMLE so here is a simple explanation with NO medical jargon.  PMLE is a sun allergy, not a sunburn.  The immune system is activated to attack itself when exposed to UVA or UVB rays and in some people both rays cause the reaction.  The exposure does not have to be long or be direct sunlight for this reaction to occur within the body.  The reaction starts immediately but does not show up on the skin for usually one to two hours after sun exposure.  The rash can be hives, small red patches, or red itchy areas that cover most or all of the sun exposed area... in more severe cases it can appear even under clothing.  D is somewhere between moderate to severe, as she does have the rash on non exposed areas.  It can be managed by using physician strength sunblock, UPF clothing AND limiting sun exposure.  The rash is intensely itchy and once it appears it can take days to a week or more to resolve.