Lots going on, and LOTS of pictures to show for it!

AAAAAAh, where do I start? I wish I had time to blog daily so that I didnt have to jump around in my posts. Lets see, first Brianna's medical update then I will post everything else going on under its designated pictures.

Brianna is now officially cleared from pulmonary to get her tonsil/adenoid_ectomy surgery (removal of her tonsils and adenoids)... sigh... which is good and bad. Good because that means her collapsed left lung is recovering so well that they feel she is fit to undergo surgery... and those words exactly are the bad part "undergo surgery"... sigh... having to put our sweet child through yet a 4th surgery in her short 3 years of life is hard, very hard, but she will benefit from this and I am thankful for medical science, doctors/surgeons, our CHOC Childrens Hospital and mainly to God. As soon as the authorization goes through for ENT we will schedule her for surgery consult. YIKES! So surgery coming up in the next 2-3 weeks.

Brianna has had many many pulmonary follow ups and now 2 extras since discharge from the hospital Feb 7th. She actually saw pulmonary again 2 days ago and they continue to see improvement, means the Vest and Pulmozyme along with her regular meds are doing their job, which is FANTASTIC! So we will continue to do them as regularly scheduled. The bad part is that now Brianna has PERMANENT DAMAGE to her left lung and brochials... called ATELECTASIS OF THE LEFT LUNG, and BRONCHIECTASIS :( I dont feel like putting their meaning here Im tired of reading about them, you can google them and itll explain them. Basically not the worst thing that can happen, it is expected damange but still hard to swallow that your child now has PERMANENT DAMANGE TO HER LUNG! :( Well treatment for these is continuing the clearing of the lung and preventing and treating respiratory infections ASAP when they happen. Surgery could be a possibility to help repair but its only in severe cases and by how pleased and happy the doctors express themselves about Briannas RECOVERY of her lung collapse I do not believe its anywhere near severe...

What will we do next? Figure out WHY this pneumonia was SO BAD. Shes had plenty in the past, even a lung collapse in March of last year... and it was never so bad, so the big question is "why did it take such a toll on her THIS time... and why did she have SUCH a hard time recovering from it?".... how will we try to figure this out? Infectious Disease Immuno Deficiancy Specialist...... yeah even the sound of that gives me the creeps, but I am hopeful... there is a plan and I feel very good about it. We suspect an immune deficiancy now I am hoping its something we can have a cure/fix to... or treatment I should say like immunity boosters of some sort, I hope that if she does have a deficiancy that its one that we can treat. Prayers greatly appreciated. We had an apt on Wednesday with ID specialty but it turns out that they booked us in a 20 min window and the Dr needs us for 1 hour so they had to reschedule us.... wish us luck.

I think in my last post I mentioned that Brianna was sick again? She received steroids, antibiotics and an additional nasal spray that helped immensly and now shes back to her normal happy silly self. Wheezing and crackling here and there but her doctors said just 2 days ago that her lungs sound clear its all in her nose/throat and she is coughing it well.

Oh yeeeeah... more fun... Brianna is being refered to a Pediatric Endocrinologist Specialist for testing of her pitutary gland to see if she has Growth Hormone Defiancy or if she has something else relating to short stature. They are leaning towards GH deficancy and want to do GH shots... will update more about these later I am looking forward to helping her grow especially in how beneficial this would be to her respiratory health problems but not looking forward to giving my daughter a nightly shot...

During wednesdays visit they scrapped Bris nose again to test for Celiac Disease AGAIN last time they didnt get enough cells to test so the results were inconclusive.

Looks like we have a good treatment plan for the present issues and a good treatment/testing plan to prevent these from happening again and to help her. I am thankful, I am hopeful, I AM HAPPY.

Ok that was most of Briannas updates I think... Now new with the family in general? Hmmm Hailey got a new haircut pics below, she enjoyed her first St Pattys Day at school, she had to get blood work done again to test her cholesterol levels and AGAIN they came out HIGH! :( Normal levels are between 33-115 and hers were 150 they said she is getting close to needing medical treatment (pills) and think its genetic... I am putting family history down on paper for her doctor to review to see if medicine would be good for her just yet or not. We changed her diet long ago so its not that and shes WAY active.... will post more when I know more.

I got a FULL day of fun with my sisters and daughter at Disneyland last weekend... it was so good for me to have some care free fun! It was AMAZING! I love these girls! It makes me sad to know we only have 4 weeks left on our annual Disney passes and that we wont have the funds to renew them this year again but we look forward to doing so soon in the next yr or two :D

Thank you for reading, God Bless you.

A very happy, hopeful, proud mommy. _Araceli Sandoval
(PICTURES BELOW)


*My first time making Mickey Mouse head pancakes for Hailey girl*


*My pathetic attempt of painting Haileys nails pink with green shamrocks*


*We have all been getting pretty crafty around our house, this is Haileys first art project. This one will not be for sale on our site this is a mommys keeper, check out the rest that we will post on www.silverliningcraftcreations.blogspot.com *


*This was my first pot craft creation for my new crafts for sale site www.silverliningcraftcreations.blogspot.com these will go for $15 I will probably spend the weekend making more characters ((( or worrying about the stupid radiation cloud that came from Japan that is over California right now scaring people that they will get cancer, or worrying about the predictors prediction that California will get hit with a massive Earthquake like Japans sometime this week! ugh!)))) *


*Haileys new haircut! She got BANGS! Silly girl... she looks so cute though*


*Haileys bangs before the haircut*


*Haileys first St Pattys Day in Kindergarten* She had soooo much fun*


*aaaaah Haileys Spring school pictures... and the story behind them.... this was the ONLY day I ever sent her to school without combing her hair it was the day after Brianna had gotten discharged fromt he hospital and we had to get up twice for an hour throughout the night to administer IV antibiotics at home so we were tired... come to find out AFTER the fact that it was picture day... wow she will hate me when shes older but she looks oh so cute*


*My poor baby's bloody nose from the scrape test for nasal cells to test for Celiac Disease*


*Bri killing time at the doctors office, this was a 3 hour pulmonary visit OMG*


*My sweet girl was so patient and so good during this loooong 3 hour pulmonary visit*


*Bri Bri girl checking into CHOC Childrens Hospital of Orange Countys Pulmonary Specialty Clinic*


*This kid is an expert at doing meds and play at the same time*


*Brianna has been showing off her American Sign Language lately, she was signing BABY here*


*More sign language, I am so proud of her here she is signing DADDY*


*YAY more sign language, she is signing MORE here*


*Brianna signing ALL DONE in her slightly modified way*


*The hubbys Mickey Mouse pot creation for our new site www.silverliningcraftcreations.blogspot.com *


*Hailey, me and Jessie on Tower of Terror at Disneys California Adventure ride*


*Daddy and his sweet baby at Disney CA*


*My two beautiful babies Hailey and Brianna and my beautiful baby sister Jessie*


*The Serrano Sandoval Family enjoying sunny beautiful Disneyland California Adventure Theme Park*


*Baby sister Jessie and Big Girl Hailey*


*Us girls on Space Mountain at Disneyland! Mayra, Carina, Jessie, Hailey, Liz, and Me*


*My little sister Cari shes so beautiful and Big girl Hailey at Disneyland*


*My pretty lil sissy Jessie and myself at Disneyland*


*The little sisters, Carina and Jessie with my big girl Hailey outside of Pirates of the Carabian at Disneyland*


*All of us girls on Space Mountain at Disney again*


*My big girl Hailey and I at Disneyland*


* Jessie, Carina, Mayra and Liz at Disneyland*


* Skinny butt Bri and her loveys PACIFIERS lol *


* Tiny B *


* Mommy and Hailey getting tag team blood work, its always funner to get your blood drawn together right ? LOL Mommy and daughter blood test *


*Brianna getting her night time meds through her gtube (mic-key button)*


*These are just her NIGHT time meds along with the VEST and CPT but she gets a heck of a lot more vest and breathing treatments throughout the day*

Thats all for now folks hope the Earthquake and possible sunami doesnt swipe out California !

part 7 of todays post videos of March 2008 3 years ago today

Part 6 of todays Post. Videos of Brianna after her 1st surgery and ACC diangose 3 years ago today.

my sweet baby girl

Part 5 of todays post, more videos of 3 years ago today.

My sweet chubby girl, I had forgotten how hard we worked for her to hold her hands flat she would keep her hands in a fist all the time and therefore didnt have a grip she would grab her toys with her fists :P I cant say time has flown and I cant say its gone by slow... steady.... with lots of ups and lots of downs. My poor baby.

part 4 of todays post videos of today 3 years ago March 2011

oooh I remember this days....

sort of....

the pain so vivid and real....

the events so faint....

the words out of the doctors mouth permanently indented in my brain....

Part 3 of todays post pics and video 3 years ago today March 2008

I am going through these pictures and videos today March 9th 2011, 3 years exactly from her first surgery... sigh and they are getting to me more than I expected. She was just so chubby and looked so healthy how were we supposed to know anything was wrong with her if the doctors said everything was fine and she looked this good?! :(

She has been through so much and come so far from this day. Even after this surgery and diagnose of Agenesis of the Corpus Callosum at this time, we didnt expect she was going to go through all that she has in the last 3 years, we thought this surgery _recovery, acc diagnose and move on .... little did we know.

Part 2 of todays post pics and videos of 3 years ago this week

March 9th 3 years ago and where we are today. PICTURE OVERLOAD! :)

I am a slacker! Sorry! I have not posted an update in such a long time and I am so sorry for that, things have been very hectic and very crazy. But today, March 9th, I just have to post.



So let me try to go back a little bit. Brianna did not end up staying in the hospital for 3 weeks. She stayed 7 days out of the 3 weeks. The main reason why she only stayed 7 days was because while being in the hospital her doctors pushed the insurance company HARD for approval of the vest and medicines and they approved a 30 day rental through the hospitals equipment (for the Vest) and a 30 day supply of the pulmozyme from the hospitals pharmacy. YAY. The 30 days have come and gone (wow that long without an update, I am terrible so sorry) and we were recently approved for another 30 day rental on the Vest AND another 30 day suppply of the pulmozyme THROUGH OUR PHARMACY! OMG This is FANTASTIC. We were getting ready to make an offer to go half and half on the Vest to the insurance (with the fundraiser money) and pay a months worth of the medicine $3,000!


I may jump around sorry.

Since I mentioned the fundraiser I must mention that with the car washes, donations, fundraiser dance, and i got cha pizza we raised over 16,000!!!! I will take this opportunity to extend my gratitude to EVERYONE involved in the donations events etc thank you thank you thank you this means more than anyone will ever know and we are forever eternally grateful to each and every one of you who donated your time, your money, and extended love and support to Brianna and my family, THANK YOU.
The money thankfully has not been touched yet, and it was deposited under Briannas charity savings account which I will maintain open if anyone would still like to contribute (as some wonderful people have still done) let me know and I will give the info. When the money is used for any of Briannas medical needs I WILL DEFINITELY POST AN UPDATE and show RECEIPTS for whomever is interested.





Ok next. Brianna came home 2/4/2011 after 7 day stay in the hospital with a PICC LINE for the remainder 14 days of antibiotics for those who dont know this is an IV line directly into the heart, hers was 30cm long from her elbow to her heart. We had a nurse train my husband and I on how to administer the antibiotics through her PICC line and we learned very quickly and felt comfortable with doing them at home.




I will post pictures of her line and how we did this at home. The only hard part was getting any sleep they were Q6 (every 6 hours) and couldnt be given more than an hour early or an hour late and she had a 2 a.m dose for the 14 days and you have to wait 30-40 minutes for it to be complete and then flush her line so this was not fun for her or us because she would wake up fuzz and cry and we didnt get much sleep. She was a little disoriented and fuzzy the first 2 days that she came home on the line she didnt understand why she came home with it you could see it in her face she was worried and frightened. She is used to IV lines but also used to having them removed to go home.... sigh.



Since shes had that removed and shes been doing really great (so good she has now been cleared to go into surgery in the next few weeks to remove her tonsils and adenoids) on the vest and pulmozyme (along with the rest of her meds) and her last check up last week her pulmonary said her lung function in her left lung has dramatically improved since discharge! YAY. She was very suprised at how much sound (air) was moving in her left lung and was so pleased with how the vest and meds are working out for her (which is why she wants to continue them perhaps life long).

Unfortunatly Brianna got sick again this week and she is back on antibiotics, steriods and a new nasal spray on top of her other medications to try to prevent this new respiratory infection from turning into a pneumonia or even worse collapse her left lung again while its still in recovery mode... sigh but shes started on meds and we are continuing her vest and breathing treatments and her mood seems to be normal and happy so we have FAITH, as always :)

Next. Ahh the reason for posting. Today marks 3 years since Brianna's (and ours her familys) life was turned upside down and around. March 9th 3 years ago today Brianna stopped breathing and fainted, she had to be rushed to the ER and she ended up having her life saving emergency surgery around 2 am to correct her intestinal malrotation and remove her apendix, this leading to testing testing testing and receiving her diagnose of Agenesis of the Corpus Callosum.... we received anywhere from the worst to the most discouraging information ever at this time the same night... but what they didnt tell me was just how much I was going to learn, and how I was going to learn to love in a much deeper more pure way, that this child was going to completely melt me and change me and our lives and a lot of peoples' around her.



She has over come so so much which I dont have time to go into but you can see in the history of her blog...

I am proud of her.

She amazes me.

I love her so so much since this day 3 years ago this child of mine has endured contless surgeries, tests, procedures, blood work, shots, pokes, hospitalizations, therapies, doctors appointments, and an overload of treatments and medications she is MY HERO, she has come up and out of all this and continues to climb up this rough steep mountain with her own hands and knees basically her love for life is more than my words could ever express, she is strong she is full of life and love for it. she is amazing she is a child who motivates and fills people up with faith and love and hope she re fuels me with energy emotionally physically and emotionally.


I thank God because I know he has been there with her EVERY step of the way holding her hand and never letting her go.



I LOVE YOU BRIANNA! I LOVE YOU MORE THAN LIFE BABY GIRL.





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<3 PICTURE OVERLOAD! I LOVE IT!!!





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<3 MY GIRLS MY GIRLS. I LOVE YOU HAILEY AND BRIANNA !




<3 If this caption ends up where its supposed to (next to the dark pic of Bri under the table, she was going around writing on things even under the table to write on the chairs lol.


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Love,

Mommy