Thursday, May 28, 2009
Fundraiser for Lilly's stroller!
We have exhausted all the options. If you can help and give something to the cause. Please do.
Fran
http://www.fundable.com/groupactions/groupaction.2009-05-29.3117210716/groupaction_view
Sunday, May 17, 2009
UPDATE!!!
Thursday, April 2, 2009
Piper and Lilly
WELLLLLLLL .. while I was waiting for Piper and Grandma to draw blood...I asked if Lilly's bloodtest came back. We had tested her last week for food allergies. WELL brace yourself.Lilly has IGA ... an immune deficeny that affects upper respiratory diseases. Normal levels are 40-90... low levels are 7. Lilly has 0!!!!!!!!!!!!!!!!!!! Now we know why she has been sick and in and out of the pediatricians office all winter long. I don't know much more yet until I meet with the Immunology doc overthere on Tuesday..but it looks like they can rule Celiac's disease out, but than she has no antibodies so it could be a false negative.
I think the next step is to draw more blood. Give her a pneumonia "vaccine" and see if she can build antibodies...if not... she has to get transfusions of them.
My friend said to me..."The Lord does not give you more than you can handle or sooooo much that you break." Well... today I am not sure that I can say that anymore.. cause I think I am breaking. It has been one heck of a week...from my Dad to biting ants...to a crazy landlord..to ped trips...to this.
My heart is bleeding for this child. It's like adding insult to injury. I gotta go to bed cause tomorrow is a new day..and we are heading to UCLA for ophthalmology testing.
Please keep praying for this baby. I know one thing.. she has more than one angel...otherwise she would have been in the hospital with pneumonia and who knows what several times over the winter... BUT.. something/somebody (incl Doc Jenet) kept her out of it.
Love, FranPS: Here is a link to the "disease/illness". http://www.vaccinationnews.com/DailyNews/May2002/SelectIgADeficiency.htm
Friday, March 27, 2009
Lilly's Story
http://www.aicardisyndrome.org/site/node/320
Sunday, March 1, 2009
Weekend.....
This was one of those weekends (besides just being too short.)
It was a weekend of "gone" friends, new friends and friends.
Emily Dickinson said: "My friends are my estate." I am assuming meaning my rock and shoulder to lean on.
I am thinking of my friend Shantelle when I read Proverbs 17:17 (A friend loves at all times. A brother is born to share troubles) and 18:24 (A man who has friends must be a friend, but there is a friend who stays nearer than a brother.) That's my sister Shantelle... without her I'd probably go insane.
Than there is my new friend Angela .... she seems to have reason for anything reminding me of Proverbs 27:17 (Iron is made sharp with iron, and one man is made sharp by a friend.) We trade kids stories back and forth...and other things.. she really helps me through the day.
Than there was a old/new/still friend? I felt compelled to reach out to her, against maybe my better judgement, but than I read 2 Corinthians 9:7. Each man should give as he has decided in his heart. He should not give, wishing he could keep it. Or he should not give if he feels he has to give. God loves a man who gives because he wants to give. So I helped out a young mother with some kind words and just maybe she can make a turn for the better in many ways.
And than there was a "friend" who shall remain nameless...this person struck me with unkind words and the feeling that I don't deal with what GOD dealt me and that I do not love my children...and that person hurt my pride (and other things.) BUT...my little book says... Do not be wise in your own eyes. Fear the Lord and turn away from what is sinful (Proverb 3:7.) So I think that's the last we hear from that "friend."
Cause after alllll.... "...it is impossible to be in the presence of Jesus and not be changed." None of us have to qualify to be holy.
Fran
Causes
I am speechless. Keep them coming.... all these gorgeous AS babies out there need us to spread the word for them.
www.causes.com/aicardisyndrome
Monday, February 23, 2009
UCLA GENETICS ....
Today was THE day we've been waiting for (1yr) ... Genetic Testing at UCLA. I meant to get the results out earlier, but I got caught up in work and Verizon (I'll get to that later.)
Anyways. Mom and I were asked a million questions about our background. The professor was very kind and nice we liked him a lot. He had never met an Aicardi Baby before. He said it was a priviledge to meet Lilly. He felt she was "advanced" for her syndrome and looked good. We got the compliment that, because of us, Lilly is who she is and that she is doing so well because of the care she receives. He said God knew what he was doing! (SNIFF)
Back to the results. He said there is a 0% chance that this will happen to us again, but he is factoring in 5%, because of a woman who had 2 Aicardi Babies. SOOOOOO... I from now on am considered a "high risk pregnancy." I am offered "MRI imaging" within the 1st trimester if I become pregnant. The test is so sensitive that it would notice any absense of the corpus collasum in the brain...which would be an indicator that the baby could have Aicardi. Everything else is than up to me and Donnie. He than took a picture of Lilly (so he doesnt forget what she looks like :o) ) and we signed up for genetic testing (research.)
The gene that causes Aicardi Syndrome is still unknown...it's only narrowed down to the area, which is the X Chromosome, hence there are no boys with this disorder. If there are boys they have XXY chromosomes (an extra X chromosome) and have Kleinfelder Syndrome (very rare.) Anyways, they will send us information and they will draw our blood. I figure if we say NO and wouldn't participate it will take even longer to find the gene....and I am hoping before Piper has children (around the time she is 50) they will find the gene. There is a chance she could have an Aicardi Baby as well...it's all in the eggs ...so I have learned today.
The professor gave us encouragement that we are doing all the right things and most of all he gave me and Donnie ..... HOPE!
Now to the reason I didn't get this out earlier. I called Verizon, because I had this insanely large bill. I ended up talking to this nice woman...she sounded my age. Not just did she fix my bill, but for some reason we ended up talking for 45min about our childrens disabilities.
Her son was born with a cleft pallet. It was not noticed during any ultrasound. She was very distraught and upset seeing this little baby boy go through 3 surgeries. I could absolutely relate to her feelings, since we have seen Lilly undergo many medical procedures that can make any grown Marine well up. Her husband and her gave up the thought of having another child, because of how traumatic the first time had been. After 45 minutes of talking and sharing my story..I had given her HOPE. She will now talk to her provider and consider being a high risk pregnancy and have maybe even "Early MRI Imaging" done.
BOY I sure felt good getting off the phone..I kinda felt like asking her for her phone number lol. Bottom line... Professor Martinez gave me and my husband hope today... and I was able to do the same for another person that probably has felt discouraged for a long time.
GOD WORKS IN MYSTERIOUS WAYS!
GOOD NIGHT FOLKS...............
Monday, February 9, 2009
SCARLET FEVER
Saturday, February 7, 2009
Rain.....
FUNNNNN
Monday, February 2, 2009
FUN.....
Need to do that again....
GOOD NIGHT
Sunday, February 1, 2009
Monday, January 26, 2009
GOD LIVES UNDER THE BED!!!

GOD LIVES UNDER THE BED
I envy Kevin. My brother, Kevin, thinks God lives under his bed. At least that's what I heard him say one night.
He was praying out loud in his dark bedroom, and I stopped to listen, 'Are you there, God?' he said. 'Where are you? Oh, I see. Under the bed...'
I giggled softly and tiptoed off to my own room. Kevin's unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.
He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an adult.
He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.
I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?
Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed.
The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.
He does not seem dissatisfied.
He lopes out to the bus every morning at 7:05, eager for a day of simple work.
He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day's laundry chores.
And Saturdays - oh, the bliss of Saturdays! That's the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. 'That one's goin' to Chi-car-go! ' Kevin shouts as he claps his hands.
His anticipation is so great he can hardly sleep on Friday nights.
And so goes his world of daily rituals and weekend field trips.
He doesn't know what it means to be discontent.
His life is simple.
He will never know the entanglements of wealth of power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.
His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it.
He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax.
He is not obsessed with his work or the work of others. His heart is pure.
He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue.
Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.
Not confined by intellectual reasoning, when he comes to the Lord, he comes as a child. Kevin seems to know God - to really be friends with Him in a way that is difficult for an 'educated' person to grasp. God seems like his closest companion.
In my moments of doubt and frustrations with my beliefs, I envy the security Kevin has in his simple faith.
It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions.
It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances - they all become disabilities when I do not trust them to God's care.
Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.
And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I'll realize that God heard the simple prayers of a boy who believed that God lived under his bed.
Kevin won't be surprised at all!
Sunday, January 25, 2009
Mommy Time

Tuesday, January 20, 2009
Inspirational!!!!!
Monday, January 19, 2009
Grieve the Child You Thought You Would Have....
Friday, January 16, 2009
HAPPY BIRTHDAY!!

Thursday, January 15, 2009
Oh Lord!
SO I called the agency and the regional center, who funds the agency. They all assured me they'd find somebody else. I also made sure to mention that next time. Please do not send me a nurse that smokes...I do not enjoy my child smelling like smoke and being coughed at.
Anyways...now that that's out. TBALL was absolutely hilarious. Marky and Piper had a blast. It sure is fun to watch a couple of 4 y r olds (4 TOMORROWWWWW) trying to figure out the game of tball. It was a hoot. This should be great fun every Wednesday night.
Piper got to take cupcakes to school today...which were a hit. I ran some errands, which took a load off. I been working since about 1pm, because we are going to the Long Beach Aquarium for Piper's B-day tomorrow. I hope I can get it all done...plus I have to pack everyone up!!!!
Lilly had a "so-so" day. She threw up her medication twice last night, which never happened before. So I tried to make up for what she threw up, while trying to not to over or underdose her for that matter. Than this morning she woke up with a fever and shortly after she had a seizure. The rest of the day seemed to have been much better. She slept and played quite a bit..but shes having a little temperature right now....so we'll see how it goes!!!!!
Back to work I go......
Tuesday, January 13, 2009
"American Idol"
Today was part running children around and working. Nothing eventful happened. I am actually quite tired.
Tomorrow Ms Barbara is coming again..and I am going to pick out some stuff for Piper's Bday party.....and Ms Piper starts her Tball tomorrow. A little birdie told me Marky is going to be there as well. That should be FUNNNNN!
BUTTTTT. I do have to vent for a minute. IHSS (In Home Support Services) the state funded agency that pays me for staying home with Lilly. NOOOOO sit back down they only give me 48hours a month..nothing earth shattering.. I am still fighting them (but that's a whole nother blog.)
Welll so I finally get my paycheck for the month (it's the 13th people) and without any explanation..they took out dental and dues!!!??!! DUES???? WTF for?????? And DENTAL???? I have dental..this is the military people. So now I have the pleasure to call my friends at IHSS again tomorrow..and find out why they are taking this madness out of my check.
It's always a pleasure to talk to ignorant people that totally picked the wrong career. I dont even think half the people working there know what it means to take care of a handicapped child. Nor could they bring up the compassion to even attempt being a caregiver for a handicapped child. I dont even want to go there, but do I think that they understand what the word "caregiver" means. Probably not.
On this note.... I will end it with ALWAYS SOMETHING!!!!!!
Monday, January 12, 2009
"Bride Wars"
Which brings me to..... today was Lilly's official first day with Ms Barbara...the LVN. I am very proud of her..she's really trying to befriend my dog. She seems very sweet with my Lilly..which makes you pretty much golden in my eyes.
Let's see what else happened today. Oh yea... I apparently offended people by putting up "George Lopez' Stand Up" on my facebook. I been thinking about it all day...on how to even address this. Than my Mom and a good friend of mine gave me the answer. Nobody is here to judge somebody elses life...that is our Lord and Saviors job. Judging somebody here on earth...is like condeming them. I have a problem with that (and I assume most of you do.) I am who I am. I have come to the point in my life (almost 27yrs now) now where I do not feel the need to defend my i.e. weight, religious believes, the way I raise my children, my tattooes or my potty mouth. That is between me and God...nobody else. My Momma says: "If you do not have anything nice to say...dont say anything at all." So all im going to say about George Lopez is... if you have children on this here facebook or myspace.. they are obviously subjected to: 1 the real world, 2 adult content. I trust that everyone on my friends list has raised their children with enough common sense to look through the bad language or not look at it at all.
This concludes my blog for tonight I am off to food and an episode of the 1st 48.
Sunday, January 11, 2009
Lillian Update ...

I havent updated on Lilly Girl's status in a very, very long time. Simply because I am always busy and Lilly is always, always progressing.
Her seizures are much better. She had one the other day after her bath, but it was very subdued. It was very hard for me to figure out when it started and when it ended.
She can also roll now from front to back and back to front. She can bare weight on her legs and scoot when SHE wants to. We have also seen her do mini crunches a good indication that she wants to sit.
Also, we have been trying to work on getting a bathchair for Lilly. She of course is getting bigger every day and she's a slippery little sucker. SOOO I have been trying to work with CCS (California Children's Services) to get her a bathchair....BUT they decided Lilly wasn't eligible for the program. Sure sucks when you are so RARE that the govt can not put you into a category, so you too can receive help besides your SSI of $14.57.
As previously mentioned ... Mommy does not give up. I e-mailed Lilly's old neurologist down in San Diego and asked her for help. She said a certain program within our insurance should be able to help us. So currently Lilly's physical therapist and ECHO are working on getting Lilly girl a bathchair. Once we accomplish that... we will work on a seating system for Lillian.
I have also met with a LVN (sponsored by the regional center.) The big test comes tomorrow when I leave her alone with Lilly. I was very upfront with the company that sends the nurses. I told them I have 2 dogs, one of them a pitbull puppy (I know how some people are.) Anyways, they send me this sweet 70 yr old blk lady DEATHLY afraid of my dogs, especially Kala. I have never seen such terror in somebody's eyes EVER before.
If all goes well .. I will have her for 12 hours a week....which means my life will be much easier. I can go run errands with much more ease. Yay. Actually it's a little sad that I think running errands is fun. I need to think NAP, BATH, READING while she is here.
Anyways. We'll see what tomorrow brings. Let's hope she can handle it.
Why you cryin' cochina ... FTP!
SO I came across George Lopez .. his show is my nightly ritual! I got stuck watching his stand up show for over an hour. Now this is nothing for the weak of heart or the ones, who have allergies to them "bad words." BUT I have not laughed this hard in IDK how long.
All I can say is.... I really, really needed to laugh like this. It's been a while.
I posted his stuff on myspace and facebook...check it out...if you need a laugh.
Judge the Deed NOT the Breed!

Back in September I took in my new puppy Kala Maleah (Gentle Bear from Heaven.) I received a lot of scrutiny back than for taking in a pitbull. Things like: "Are you crazy? What about your babies? What if it snaps?" were thrown at me constantly from all different directions.
I was very discouraged and upset back than! I had hand picked her. She was the ONE dog that came up to me and licked my hand when everyone else was playing.
Kala and I have been through a lot together since than. She fell ill with parvo 5 days after being here. The doctors said: "Well, pits don't usually make it." If you know me ... a couple apparent things about me are: 1. I love animals. 2. I don't give up. So guess what? After a few tears, $$$$ and more scrutiny...Kala MADE IT.
A couple of months later Kala got mites (also known as mange.) A lot of people said: "Your putting alllll this money (money you do not have) into something that will do you wrong one day or possibly has to be put down, because of the mange!" AGAIN ... I do not give up. This past Saturday (after 2 months of doctors visits and dips.) Kala is mite FREE. She made it.
You may wonder why I am telling you all this. Go back to the title. During these past months...Kala has become a loved member of this family who has been nothing BUT a joy to all of us.
When I picked Kala up Saturday I spoke to the vet about her for a few minutes. She said to me (as Kala is "hugging" and licking her) this is one of THE friendliest and happiest pitbulls I have ever seen. I said "YES" it is a shame how some people treat and think about pitbulls. The vet responded: "It is NEVER the pet. It is ALWAYS the owner.
So before you approach me (or anybody else with a pit) about what you may know or not know. - Judge the Deed NOT the Breed.
Friday, January 2, 2009
You know you're a military wife when ...
... someone asks when your husband will be home, you say July or August instead of 5 or 6pm
....You live on your own and by yourself more after you're married than before you were married
....Most of the married women you know or meet are under 21 and if they are over they have kids, sometimes even under 21
....You know all of your husband's coworkers by their last name, and rarely know their first name
.... you say "I'm going to the commissary" instead of "grocery store"
.... you need I.D to buy groceries
...You are called "Ma'am" at the age of 18 by every MP or SF that comes into contact with you
.... you forget you have a driver's license and take your military ID everywhere with you
.... you hear of another death or injury of a US Military and weep inside for that wife or mother that loved that Marine, Soldier, Airmen, or Seamen
....You read everything you can get your hands on to learn more about your husband's job
.... you've never given a haircut in your life but you've perfected the medium fade, 6-8, skin
....You really want something but you say "damn, well I'm going to have to wait for the 1st... or 15th for it "
....You ask someone "what's your rank?" instead of "what's your job?!"
... half of your wardrobe has some kind of Military insignia on it and once belonged to your husband
.... the sounds of helicopters, and Jets flying over your house shaking your windows, surprisingly soothes you!
... you classify people by what phase, class, or rollback they are
....your husband's work and dress clothes cost more than yours do
....You only write in pencil because EVERYTHING is subject to change
....You know that a 2 month separation IS short, no matter what your civilian friends say
....You know better than to go to the NEX or commissary between 11:30 and 1:30 unless it's a life or death emergency
....You show your military ID to the greeter at Wal-Mart
....You know that any reference to "sand box" describes a deployment to Iraq/Kuwait, not your kid's backyard toys
....You have enough camouflage in your house to wallpaper the White House
....You don't have to think about what time 21:30 is
....You can't remember the last time you saw a doctor who wasn't wearing BDUs
....You pick apart uniforms on TV and in the movies for being inaccurate with your husband
....You are asked to stop talking in acronyms and translate it all to English
...You have multiple copies of P.O.A.'s to throw at the credit card people and the banks...


