Thursday, March 10, 2011

A Rough Patch - Beware this is a total RAMBLE

Where to begin. . . Oh yeah, I HATE Rett Syndrome!  So we've hit a little bit of a rough patch lately.  Mostly involving seizures.  So for those that don't know, Juliana had a couple really bad seizures about a month ago.  After careful consideration we decided it was time to try a different seizure medicine, since she was already on a high dose of the two she was on and still having seizures.  So we began the long process of weaning her off the meds she is on and onto a new one.  So things are going along fine for a few weeks and then SLAP!  She has another seizure at school.  UGHH!!!! No matter how many times it happens, it is always just as scary as the first time for us.  We get her home and surprisingly she recovers rather quickly.  So the next day, she is up and in a great mood.  YES!  Daddy gets her meds down and . . . . drum roll please . . . . . she throws up.  Yes, you guessed it all her breakfast and all her meds.  Now what do you do?  How much of her meds were absorbed and how much did she throw up?  I don't want to over dose her on meds but I also don't want her to have more seizures because we didn't give her enough. UGH!!!!  So we finally get a hold of her neurologist and unfortunately came to the mutual decision that we need to find a new neurologist.  Awesome!  What a great time to shop around for a new doctor - while you're in the middle of major change - sarcasm!  Thank God we've had Dr. Djukic in New York to consult and get us through this difficult time. But we do need someone local.  Someone we can run to when things go wrong or we have an emergency.  So, how hard can it be to find a new doctor?  Apparently VERY.  For one, there aren't many pediatric neurologist and number two, nothing is easy.  I call around and found a place I think we'll like, but we need to wait until our files get transferred and see if they are willing to take Juliana on as a patient, so we are looking at weeks before we can get in and News Flash .  . . I need someone NOW!  Because it's Thursday and guess what, she threw up again!  And yes, it was all of her dinner and all of her meds.  I have so many questions and no one has answers!  Like why is she throwing up (once on Tuesday and once on Thursday), is it the meds, is she getting sick???  But either way, why didn't she throw up on Wednesday?    And she's also teething (2 year molars), is this a cause for anything?  I just want answers and the reassurance to know that we are doing the right thing for our daughter.  I'm tired of seeing her sick, and tired and lethargic.  I want my happy healthy girl back.  Ok, I think I'm done.  I keep telling myself - This too shall pass!  And Juliana is a tough cookie! She will recover - I just want to know WHEN?????????  Okay - Lot's of prayers for a bit of normalcy and oh yeah, a cure would be awesome!

Tuesday, March 1, 2011

Happy 3rd Birthday Livi!

This past Saturday we celebrated Olivia's 3rd Birthday at Cotton Creek Park in Irving.  Actually it won't really be her birthday until next year.  She is actually only 3/4 of a year - Ha ha.  Anyway, it was a blast.  Last year's party was held at the same place but the weather didn't really cooperate.  It was freezing.  So this year we prayed for warmer and we got it!  The one thing we didn't pray for was not so much wind.  But luckily we had kites so it all worked out.

Now get ready for a ton of pictures!

Vick's/ Pacheco's/Valdez
Birthday Girl

Dan & Mariana
Zelma & Hannah

Here is Kevin - Roger in the background trying to get that kite off the ground

Kite 1, Roger 0.  Getting ready for round 2!

Livi greeting T-Bone!  She loves that baby!

Here she is giving Allison a sunburn hug.  Don't know why they both felt so awkward about this.

Mrs. West finally got here!  Juliana was waiting for her!

Kite 2, Roger 0.  But he's not giving up!
Kolton & Kevin
Livi with her bestie Faith - and her momma!
Go Faith!
Livi posing for the camera!

So here is the big moment she's being waiting for. . . . the blowing out of the candles!!!! Not so fast, did I mention there was like tornado speed wind.  Not conducive for lighting candles.  So here is me telling her that we are just going to pretend to blow out candles.  I don't think she's feeling it.

She loves us singing to her!

This is her fake blowing out of the candles.
I guess her wish came true!
After the cupcakes, it was back to the play ground!

Gab & Ris
Nora & Liv

T-Bone and Mrs. West wheeling Juliana to very top!

Juliana & her friend Mrs. West!

                                                           Now time for Presents!!!!

Look at this crowd!  Needless to say she got spoiled rotten!

Now here goes Livi trying her hand at kite flying.  I guess she takes after Roger in this arena:)

Then after the windy park it was time for La Margarita!  Not for Livi of course but for the parentals!

Here is her look of surprise when the waitstaff came out singing to her!

She was so worn out!  Long day but lots of fun!