What a Thanksgiving!!

We all have so much to be thankful for with our little heart angels.  But we as a family really had a tough but blessed year.  

*Last year in December we found out my mom had Gastric Cancer and she had 85% of her stomach removed on December 14, 2007.  After 6 weeks at home she began a regimented chemo/radiation cycle which lasted about 4 months.  Mind you Gastric CA is not one of the typical ones that responds to chemo/radiation.  (A blessing-she is now completely cancer free and healthy) 

 

*You all know about Ari and our Fontan which we went into the hospital for on June 19 and officially came out of the hospital on September 19.  Yep 3 months (93 days to be exact)  Without the love and support of our family, friends, the doctors and nurses and God we were released without any further complications and are now starting to live a "normal" life.

*The last item which I don't think  many of you know about is Miguel's deployment orders to Kosovo for 14 months.  I know--just shoot me now.  But once again, God carried us through and he, with the help of Dr. Mainwaring/Dr. Juris writing letters about Ari's condition and the stress on our family and the need to have him at home got him out of his deployment.  

Like I said before Miracles do happen.  We just have to open our eyes and see. 

Neverthless, I am so thankful for God, my healthy family, all of you, the wonderful friends I've made and the amazing Dr.'s and nurses that passed those long 93 days with us.  Christal & Maria-and all the rest of the crew WE LOVE YOU. Happy Thanksgiving to all.

Boo...Happy Halloween!!

Here are our 2 beautiful princesses on Halloween...

No More NG Tube

Hello friends.  I'm so sorry that it's been so long  since our last post.  Ari is doing amazingly well.  Last week on Thursday 10/30 we (Miguel and I) removed her feeding tube.  It was a bit traumatic for her and us both.  Bianca was the one with the level head who suggested to get her Bella Doll that Ms. Siri gave her at the hospital.  Little Bella has had everything done to her that Ari has.  She is our therapy doll and so Ari gently removed Bella's tube, asked if she was ok and then we removed Ari's with some tears. 

Looking at her round angelic face after removing the tube, I started to cry myself because I realized that was the first time we had seen her face without anything on it for 4 1/2 months.  Wow!!  So with God's good grace, Ari is on the road to a full recovery, but I on the other hand am finally starting to face and deal with all of the feelings, stress, and anxiety of our hospital experience.  Nonetheless, processing all of my feelings has been a difficult.  

I never got a chance to thank Andrea and Valerie for creating and carrying out the Raffle for us. Finances has been yet another stress and we thank all of the friends and family who supported us and participated in the raffle.  Thank you, Thank you, Thank you.  We look forward to paying it forward to another family in need.  

Family Fun!!!!

Oh what fun! We, Miguel the girls and I took my mom bowling for her birthday.  Oh we had a great time.  All I can say is Thank God for bumpers.  This was Ari's first time ever and Bianca's second time so it was all pretty new to the girls.  We all, my mom included had a great time.  It's so nice to be able to do things together as a family again.  Ari is just still a big attention getter with her big'ole cheeks and of course her NG tube.  Hopefully soon, that too will be a thing of the past.  

Hugs and kisses to all.

Bahar

Trying to keep up...

That's kinda how I've been feeling this last week.  We have now almost been home 2 weeks and I still am having a bit of a tough time getting situated and on a regular schedule.  Ari on the other hand is loving being home.  She tells everybody she sees about her "2-story bunk bed" and how she "sleeps on the first floor and sissy sleeps on the second floor."  She is now a bundle of tireless energy.  Miguel and I are exhausted running after her with her IV pole.  We actually got a new backpack to put her pump and portagen bag in and that works much better.  We are much more mobile that way.  

We have a home health-nurse Alice (in pic)who comes to the house 1/week and she is totally impressed with Ari's recovery and energy.  

I think Dr. M. created a bionic baby.  Thank God for all that energy. We're down to once a week visits in Sac. and everyone is very pleased with how she is doing.  The only problem still in her book is that "Bob's hambugga, the donut shop, Ribeye (Outback), and McDonalds" are still closed.  They are due to open as soon as we get the green light from Dr. M.  Maybe he's saving that for a Christmas Surprise.  Until then we are all vegetarians!!

**Believe in the power of prayer**

We are all still praying for Gina, Kira, and our other angels. You know who you are!!

xoxo

Bahar

The sweetest picture on earth.  Here is Ari and her Mamani, my mom.

WE'RE HOME!!!!!!!!!!!!!!

Yes!  I said WE'RE HOME!!!!!!!!!  Ari got released last night Sept. 19 after 93 days in the PICU. There was some separation anxiety for everyone, but one of the beautiful parts about the 19th is that her actual Fontan was on June 19.  Exactly 3 months in the hospital. We served our time and now we  are home and trying to adjust to preparing meds, nonfat meals, portagen, running around, redisciplining both of the girls, oh and trying to move back into our house.  Nevertheless that means I better get back to work. We love you all & already miss our Sutter family, the most amazing nurses in the world.  Stay tuned for a new update soon. 

xoxo

Could it be?

Well God willing tomorrow 9/19/08 is the day we have been waiting for.  Yes we are DUE to go home.  Hmm...home that sounds awfully nice, but at the same time a little scary.  Ari is simply excited to see her bunk bed and not to be connected to a pole, that's about it.  As for me, I am elated, scared, anxious, & nervous, all in one.  We want to first Thank God then all of you, our family, friends, Doctors, and nurses who have stood by us and supported us through this very long and scary journey.  

Okay, I know I need to have my sister put some new pics of our little Puff Angel (compliments of the steroids) on the blog.  The pics are her job. I'm just the author.  Hugs and kisses to all of you.  

*Believe in miracles.  We do!! They really do happen!!*

xoxo Bahar

Proud, but exhausted mother of Arianna and Bianca Torrente

By the way:  Bianca truly deserves the Sister of the Year Award!!  She has been a champ throughout this whole thing.

Hippity Hoppity

Hello all! I titled this entry hippity hoppity because that's what Ari was saying as she was skipping-yes skipping down the hallway without her IV pole today. She was freed from her pole this morning. Her Octreotide, her last IV med was turned was turned completely off at 6:00 a.m. and now when she is off of her tube feeds (4 hours a day), she is free to explore without her IV pole. She was so excited to leave the room without the pole, she was telling everyone in sight. Actually at first she (we) were a little shocked. She turned, looked at her pole, looked at herself, then looked at me and then took off. 89 days later we have no pole. There's also a buzz in the air that we might be going home this week. Hallelujah! Miracles do happen!! We love you all and thank you from the bottom of our hearts for all the support.

*I'd like to send a special thanks to Valerie for the circus tickets. My sister and I took Bianca yesterday and it was a lot of fun!! xoxo

A Brighter Day!

Hello all, I finally found the station where I can update the blog myself. My sister set it up for me. See I'm still discovering new things even on day 82. Today, Dr. M. and Dr. Falco removed Ari's last chest tube, changed her PICC line dressing, took labs, and fiddled with her NG tube all in about 15 minutes. Now that's teamwork!! Ari felt great afterward and is currently building with legos and walking comfortably. Well gotta go for now, our Octreotide IV just beeped!! xoxo

Day 81

Looking better and better each day! I just hope and pray that it stays like this OR gets better. Yesterday Arianna's drainage was less than 10 ml. WOW! Her x-ray looked beautiful and she is in good spirits! Yesterday she also went for 3 walks, but if you ask her she will tell you she walked, "3 many times!" She will also sit there and say, "Momma, I want someTING... I will then say, what do you want Ari?? I want GRAPES! But she can only have clear liquids so I let her know that we don't have any grapes. Arianna then proceeds to say, "That's ok Momma, just tell Carlotta (PICU nurse) and she will order it for me!" She had us all laughing hysterically!!!



Also, Dr. Mainwaring came in to check her toay and she told him, "I want BOBS ham-bugga with kethcup, corn and ranch!" Really the opposite of the diet Dr. M wants her on. By the way BOBS hambugga are the burgers at The Habbit, a burger place on Howe, def recommend it if you are in the mood for BURGERS! BOBS is a burger resturaunt in Stockton, so she thinks these burgers are from the Stockton BOBS!!!



Overall, Arianna is doing really well, so thank you to all for your continued support and yummy meals! Lets all keep Kira and her family in our prayers as well.

Just checking!

I just created my blog and I am checking to see how it works!!