Feb. 25

Good News, we made is safe to our new house! The kids traveled great and the roads were good. The weather is a bit cold for us, won't take long before we get used to it!! We like our new house, and so far the area seems to be very nice! No complaints.

 

Bad news is Anya started her vomiting cycle this week! Poor baby girl. All the kids are sick, the boys have a bad cold and I'm sure Anya picked that up as well. So between moving boxes, unpacking, blowing sick little noses and giving extra hugs we are a busy household! We have a very important dr.'s appointment this Friday in Seattle WA. Please say an extra prayer that Anya gets healthy and is able to travel safely. This doctor appointment could really give us some much needed answers. Thank you.

 

2/18: Better now.

Anya snapped out of it last night and has been able to hold food down throught the night.  Time to pack in as many calories as we can in the next 7 days until she starts it all again....

 

Poems

I just wanted to share a couple poems I came across today.  We, as parents, can only guess what Anya is feeling.  I couldn't help but assume it is in these words...

 

 

source:

http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/lauren_poems.html

please check out her website as well...  I think Lauren is about 18yrs old and is suffering from Porphyria/

 

With courage and strength we fight the good fight, all day, everyday, through day into night. Our battles are lonely, confusing and trying, all the time we're determined not to think about dying. But we fight the good fight, and we know we can win, for our will to survive really does lie within. We hold our heads high and we live for today, we always are trying to keep our illnesses at bay. Through good times and bad, we keep our futures in sight, for we will not give up, we fight the good fight. Lauren

Dark, it's dark. The light runs away from me. Not alone, but lonely. Scared. Anticipating. Angry. However, a bleak light shines through,  making it past the cold wall that surrounds me. Sad, but hopeful,  for the light that shines through  renews my faith in something. Something. As long as there is something, I have hope. Lauren

  

Dominic suffers from Cyclic Vomiting Syndrome (CVS), just like Anya. Oh wait, I forgot, Anya doesn't have CVS according to one of her doctors because CVS is not a real disease. It is just something teenage girls make up to avoid going to school... (what a Jack-ass)...

 

From: http://www.cvsaonline.org/CVSAKidsZone_files/CVSAKidsZone.htm

 

I Wait

By Dominic Gallardi

 

I know it's always there,

Waiting to strike;

I know you all care,

But, this is my fight.

 

I count down the days,

Wishing it not to come;

I feel the first faze,

But, know I know I can't run.

 

I hope for a cure,

To this ugly disorder;

Until then I pray,

Each occurrence will get shorter.

 

Thank you for listening,

To my feelings and fears,

Thank you for helping,

Dry the children's tears.

2/15 Sick again

Again sounding like a broken record but she is puking again... Morning started great, happy as can be and then around 9:30 she started.

2/24 Happy V-day

We are so happy to report Anya is doing GREAT! She has been so happy these past several days.  She is smiling a lot and giggling consistantly and appropriately when being tickled.  Her breathing has been great as she is still getting over pneumonia.

Discharged!

Settled in.

Anya made it to childrens okay and is all settled in. Its a brand new hospital w/ nice big rooms and a beautiful view of the snow covered city from our 8th floor, corner room. Too bad nice views don't cure pnuemonia. She's getting a couple more xrays later tonight to reconfirm pnuemonia. She is still requiring oxygen, has labored breathing and weezing....

There goes my baby......

We're finally in route (6pm). Snow storm making the drive long.

3/4 pnuemonia again

We're back in the er and anya again has pnuemonia, a lttle worse this time. She will be transported to Childrens Hospital to be admitted shortly. On top of that she began vomiting again.

2/2: Still going..

We thought she was going to snap out of it a few times yesterday but unfortunately she did not.  She held down water from around 11pm until about 4 this morning and slept really well but then slipped back down hill.  After finding a few articles dating back to the early 1900's we had reason to suspect her Uric Acid levels to be elevated.  We began testing on Thursday (pre-episode) and sure enough, they were. We tested again yesterday during the episode and they were elevated even higher.  We plan to test again after she recuperates.  Uric acid levels are essentially dependent on how our body breaks down proteins, so hopeful this will be a valuable piece to her very confusing puzzle.

2/1: Spoke to soon again

Baby-doll seemed great this morning. Couple more smiles and just normal energy level.  But then around 8:30am she fell into another episode. Again, 7 days from the start of her last episode..