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

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...............

SCARLET FEVER

Well guess what. I took Lilly in today through the rain and snow. She has had a fever for days now.. but always under 100. Poor child has scarlet fever! UGHHH

Rain.....

I think it has been raining for 3 days now. My garage is floading away. My backyard seems to have absolutely no drainage and my dogs are going insane, because they can not play outside. Not to forget...every time they come in from outside.. they ruin my floor and carpet some more.

FUNNNNN