After three long years ....

I AM BACKKKKKK!

I was reading my friend's blog the other day and I was thinking....wait a minute... I got one of those ...whatever happened to it ... OH YEA....LIFE!

I need to catch up on some reading...because I have not just been bad about blogging, but also bad about keeping up with other blogs ....

I than need to catch y'all up on everything from the big "D" to Halloween 2012! :o)

I promise by the end of this week .. I will be up and running...

MUAH!

Fundraiser for Lilly's stroller!

Most of you know how many problems we have had trying to get a stroller for Lilly.

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

UPDATE!!!

It's been a while. Lot's has been going on. Where do I start???

Let's see! Donnie comes back around July 24th. We are counting down the days ..literally.

I took Piper out of pre-school around Easter. Too much bullying, teachers that had no control and worse did not know they did not have control over twenty 3 and 4 year olds. Thanks to my dear friend Angela I found a great pre-school where she will start after the summer. Meanwhile we will get her some workbooks from Abeka. Piper is happy as always. She was the first to be in the pool this summer. She will take swim lessons with her little friends in a few weeks. I really think she'll be able to swim alone by the end of the summer.

LILLY!!!!!!!!!! Our Lilly has been seizure free for 3 months!!! KNOCK ON WOOD. She finally cut her last tooth (at least for a couple of months) this morning. She can roll. She can put weight on her forearms and lift her head. We saw her sit today in church for a few minutes, which was AWESOME! She babbles "mamama....bababa" every once in a while. We got her stander, car seat, bath chair and sitter, BUT no news on the denied stroller yet! We had a HUGE breakthrough with social security disability. AFTER giving her $5.57 (mo) for months and us appealing this decision...they called me on Friday and found an error and not just will she receive over $200/mo now, but she is also getting backpay from October to now!

She's got a rather big week coming up. She is going to the dentist and she is getting a pneumonia vaccine, which brings me to the point that she was diagnosed with IGA deficency. That explains why she spent all winter SICK! So depending on how she reacts to the vaccine, she may need to receive antibodies.

Other than that we learned that Lilly does what Lilly wants to do in her OWN time! FABULOUS!!

We are also waiting to move into a new house, into a better neighborhood and some other nice little perks. We have been waiting since March and hope we will be done waiting by end of June!!! I'd like to be moved in by the time Donnie comes back.

As for me. I am fine. My sister in law, her friend and I will be going to the Beyonce concert in July. We are all stoked for that one. I am glad to have found "real" friends. They are much appreciated and have been very supportive.

Annie Belle is still crazy and "neurotic (lol)" BUT she's my Annie B. Kala is a trip. Gorgeous, BUT a tat bit vicious lol.

ALL in all us 5 broads are pretty happy and we can't wait for Big Daddy to come home.

Love,

Fran

PS: Ang I didn't forget that I still owe you that birth story. Check your email for that in a little bit!

Piper and Lilly

So we went in today, because Piper has been peeing non stop..she's been through antibiotics..the pee was clear...she just pees constantly!! And I am talking every 15min. Long story short .. we got sent to advanced imaging... nothing is wrong with her kidneys...nothing is wrong with her bladder...NOTHING. They took some more blood, but what it boils down to is a pediatric urologist to see if he has anymore ideas.



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

Lilly's Story

I finally decided to share Lilly's story with other AS Mom's. If you follow this link you can read about Lilly and if you snoop around a bit you can get a good impression of how broad the spectrum actually is.


http://www.aicardisyndrome.org/site/node/320

Weekend.....

I am reading my "Bible Promise Book for Women" and am reflecting on the weekend before giving Lilly her meds.


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 started a group on facebook...called Aicardi Syndrome...within 2 weeks we managed to get 257 people to join.

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