FEB b i r t h d a y s

c h e s

d o r e e n

d a d

l u k e

j o s h u a

t i t u s

firehouse fieldtrip

Peyton (and Rea) got to go on a fieldtrip to visit the local fire station with our mommy & me class

some updates on Rea

updates on Reagan: she's finally getting teeth (2 on the bottom and 1 on top seems to be trying to make it's way). finally made the moves to get her a new neurologist and a new GI-and we had the first appointments with those doctors and i can't tell you how much happier we are already. they already are moving forward with things-the neuro wants labs and an eeg and think hers seizures might be infantile spasms which means she needs different seizure meds and not the ones she's currently on. the new GI- wants to take her off 1 of her reflux meds, eventually get her off of prilosec and find one that best suits her and then wants to get her off her nutramigen formula-on to something like pediasure. and he wants her to start seeing a nutritionist. man, that is all soooo much more steps forward than her old neuro and GI ever did for her. we are also in the process of getting her seen by an orthopedist so she can start wearing AFO's and start standing. but we are working on getting that doctor at the same place as her new neuro and GI. Rea's making great progress with OT and PT and vision therapy too!!! super thankful for blessed with our little Rea.

will you be my Valentine?

Valentines Day for the girls started out early on Monday at dance.

Peyton and her teacher Miss Kayla

then there was hip hop class in the evening for Tay (Pey too-hehe)

then on Tuesday-actual Valentines Day
we started the morning with some heart shaped toast-which the girls love to eat for breakfast

Taylor had V-day festivities at school. Thank you Ms. Suzy for taking some pics. I couldn't be there since I was at mommy & me V-day with Pey and Rea.

Taylor and her many valentines and with her what she calls "twin" Rhianna.

and here's Peyton at mommy & me after they passed out Valentines

twinkie birthday

i love the awesome friends we have made at our church. some old and some new.

today we got to celebrate some little twin girls 1st birthday
lenora and adeline

candy barand pinwheels!
and time to sing happy birthday

sharkeys

today at mommy and me we took a field trip to Sharkey's.

it's a kid'ds haircut place and they also host parties and such with make up and dress up...

here's Pey getting ready for make-up

tada

you can't even tell she has anything on
then it was time for a costume and nails

the finished product!

banana bay for the birthday boy

celebrated my bro's b-day at the yummy banana bay

here he is with christina and their niece
the fam bam
and oh sooo much food

new year new diagnosis

praise God for a new year!!!

We recently just had Reagan's MRI read by Dr. Hahn at the Carter Center at Stanford University who specializes in Holoprosencephaly, and his diagnosis is that she does NOT have Holoprosencephaly, but rather: Absent Septum Pellucidum with ventriculomegaly and retrocerebellar cyst.

Jino started to research other possibilities to try and get a proper diagnosis for Reagan. He came across a study by Dr. James Barkovich at UCSF and asked if he could look at Reagan’s MRI to give a more detailed diagnosis. He gladly looked at her MRI and here is his response:

“Dear Mr. Martinez,

I have reviewed your daughter's MRI. She certainly does not have holoprosencephaly or septo-optic dysplasia. She has several brain abnormalities, including a condition known as polymicrogyria, usually caused by brain injury long before birth, but sometimes genetic, in which the cerebral cortex does not form properly. She has much too little white matter, the part of the brain that connects the nerve cells; this includes a very small or absent corpus callosum (the structure that connects the two halves of the brain). Finally, she has a very small cerebellar vermis and small brain stem. This type of injury may be the result of something that happened fairly early in development, long before birth, or it may be genetic. I would suggest that you contact a specialist in genetic diseases of the brain, such as Dr. William Dobyns at the University of Washington or Dr. Elliott Sherr here at UC San Francisco. They can do genetic tests and give you an idea of Reagan's prognosis and the likelihood that future children will be affected.

Sincerely yours,

A. James Barkovich

Professor of Radiology, Neurology,

Pediatrics, and Neurosurgery

University of California, San Francisco


SO with that being said...Reagan now has a rare brain condition known as Polymicrogyria (PMG) along with other brain abnormalities. Please pray for us and Reagan and the journey that lies ahead and pray for answers, guidance and direction. Thank you!

Here's some helpful sites to read about PMG:
Shannon's story

what is PMG?

Presley's story

PMG dad