Our Journey... Whats Next?!

Back to School!!

2011-08-23T11:40:00.005-05:00

Today was Mikaela's first day of Kindergarten and Frankie's first day of his last year in PPCD (Pre-K)!!! The kids did great getting up this morning and were so excited to get to school. Frankie was excited to see his Teachers and his classmate . Mikaela marched right into her big big class and never looked back! My babies are growing up!!!!!

Mikaela and Frankie

Frankie and his classmate, only 2 kids in the class this year :)

Frankie picking out his book

Mikaela ready to go to her class

My baby girl!!! All grown up :(

I was ok until I read this!

Photo Booth Fun!!

2011-07-28T08:35:00.002-05:00

The Wedding!

2011-07-25T19:11:00.009-05:00

The Bride and Groom, Mr. and Mrs. Bryce Christian :)

Court is now in session!

The girls shaking their hair back and forth!! They danced ALL NIGHT LONG!!!

My nephew Bryce got married this weekend, we had a blast!!

Happy 5th Birthday Miss Mikaela Breanna!!

2010-11-02T08:03:00.004-05:00

My Karate Kids :)

2010-10-22T15:17:00.004-05:00

Frankie warming up for his Orange belt Testing

Our newest Yellow Headband , she goes for Camo in December - then she can Sparr!

Frankie loves to wear Mikaela's sparring gear

And he's off!!

2010-09-23T07:53:00.003-05:00

Need I say more?!

2010-09-20T22:16:00.002-05:00

Our recent photo shoot! Thank you Mike and Jennifer Ortiz!!!

2010-07-01T21:46:00.004-05:00

They turned out beautiful!!! Thank you Mike for taking your time to capture these wonderful pictures of my babies! Please check out Mike's page and consider him for your future photo sessions. He is awesome!!!!!!!!!!! www.mikeortizphotography.zenfolio.com

Mike does it all and has a special touch with the kiddies and special needs kids as well. He is the father of Jude , an almost 2 year old with special needs. Please also check out Jude's blog at http://www.cjengo.blogspot.com/

The next Karate Kid(S)!

2010-06-30T10:27:00.010-05:00

Mikaela started Taekwondo a few months ago and is currently an orange belt (w/ headband) working towards yellow, she will be testing for her yellow belt at the end of July!! She is doing AWESOME! She loves going , she loves practicing her form and she has changed so much since starting! She is super polite, more energetic, she watches less TV now and even practices while going potty. LOL

Corey and I started this Monday (I'm super sore!!!!!!!) We had a great time and can't wait to go back tomorrow!

Frankie started his class yesterday. He is going to the Special Abilities Class. He will be learning wheelchair and walker forms for now. He had a blast, and so did I!! I absolutely LOVED watching the older kids, they are so inspiring!

SOOO, we currently are a family of 3 white belts and 1 orange with a headband (2nd stage of orange) We are officially the Hudson Taekwondo Family :)

Here are some pictures of the kids, you will never EVER see pictures of me and Corey!!!

Mikaela during testing - going for ORANGE!

Super Proud!

Testing for her headband

Go girl!! She did AWESOME!!!!!!

Frankies 1st day

And the most important thing! Our Taekwondo School / Family is Keller ATA Black Belt Academy in Keller, TX. They are an awesome family who exist for the students!! They are super sweet and wonderful!!!! If you are in our area check them out!! They are one of the FEW who offer the Special Abilities Class for Special needs Children and Adults!!!!!!!! Check them out at http://www.kellerata.com/

A BIG THANK YOU TO MS. MARY , MISS Z AND MISS N FOR ALL THAT YOU ARE DOING AND HAVE DONE FOR OUR FAMILY!

Terriffic Tuesday!

2010-05-25T13:47:00.003-05:00

Frankie took his walker to school today (for the first time!!), he has been doing SO good with it!!! Here is a picture of him walking to the car after school. My big boy!!!!! His pants fell down on the way to the car, WOOPS!!!!

What?!

2010-04-20T22:02:00.000-05:00

Our trip to Orlando...

2010-04-19T21:40:00.000-05:00

Kinda sums it up huh??? More to come!!

Frankie is 3!!!

2010-03-14T10:55:00.008-05:00

Happy Birthday to my Itty Bitty BIG BOY!! It's hard to believe that 3 years have passed!

Frankie Signing "Eat"

Frankie has been doing wonderfully!! He had surgery 12 days ago and got through it like a champ, he's such a strong boy! Frankie is going to be starting school on the 22nd, I never thought I would be able to send him at such a young age, however when we went up to the school and met all the wonderful people up there my mind changed! They fell in love with him instantly and he fell in love with them!! It was heartwarming to hear all the kind remarks from them, during his IEP meeting they all had their papers written up and every single person that he had met in his evaluation commented on how happy he was, the fact that he was always smiling! My boy is changing people, hes so sweet, so innocent and SO HAPPY!!

SO... When Frankie was diagnosed with RTS and I read all the information about it I cried. The hardest thing was reading that I had a 50 percent chance of never hearing my baby boys voice. Every mom wants to hear their child call them mommy or Momma right? Frankie has been making alot of progress in this area! He doesnt really "talk", but I have heard his voice! Frankie has a few words and also a few signs. If he doesn't add any new words for the rest of his life, I'M HAPPY!! Frankie says up, backpack , mama (not to me yet but he says it!!) , he calls me baba, he says bite, bubbles, bye bye and a few more random things! Frankie signs more, finished and eat! So much progress in the last 3 years, more than I could have hoped for!!

Now... I had a dream , my dream / wish was for Frankie to walk by his 3rd birthday. He crawled right before his 2nd birthday so it could happen right?? Well, check out the video below!

My dream/wish was never too specific , just to have Frankie walking. Frankie is walking, he is walking assisted - but he is walking!! Definitely a dream come true!!! I can't wait to see whats in store for us next!

Now for a little update on Frankie's growth. Frankie is now 24 pounds 3.2 oz and 33.1 inches long! Growing, slowly but surely!!

Frankies early birthday present!

2010-02-28T11:25:00.002-06:00

We found the PERFECT birthday present for Frankie!! It amazed me to see how fast he learned how to ride it when we put him on it at the store! It was so perfect that I had to give it to him 2 weeks early, its ok though - Frankie doesnt mind!!

JUST DO IT!!!!!

2010-02-22T19:51:00.003-06:00

Please!!! Just click and $1 will be donated to NORD (National Organization for Rare Diseases) RTS which is what my son Frankie has is considered a Rare Disease. Please help make a difference by clicking, it wont cost anything but a second of your time!!!!!!! SERIOUSLY!!!!!!!!!!!!!!!

Http://seed.sproutbuilder.com/JAB2DGWPIBkhhoZb?v=1266940107323

In Memory of a true RTS ANGEL AND FIGHTER

2010-01-25T09:16:00.003-06:00

In loving memory of Bella Reign, born to this world February 16th, 2007, taken to heaven too soon on January 25th, 2009. Bella, we miss your sweet precious face so much! You were the most beautiful and strongest baby girl I have ever met. I know you are having a blast in Heaven, free from everything that ailed you when you were here with us.

Bella Reign - In our hearts FOREVER!! Gone, but NEVER forgotten.

Please continue to pray for Monica and family during this difficult time and times to come.

RTS FAMILY IN NEED

2010-01-20T09:08:00.002-06:00

Below is a link that belongs to the blog of someone in our RTS family. They had a very bad flood in their house over the holidays and are now trying to put everything back together. Their son Jesus' room was damaged the worse. He is a 9 month old baby boy with RTS, hes another of Frankie's twins! They are in desperate need of a crib for Jesus as well as bedding. He also lost most of his toys. They also have a 3 year old daughter who lost the majority of her toys and books. If you can, please help this sweet family! New or used, it doesn't matter - they need your help!

http://jesusandesmeralda.blogspot.com

CHRISTmas Time! Lots of Pictures.......

2009-12-28T10:45:00.000-06:00

We had a great CHRISTmas, an entire month of listening to the Chipmunks CHRISTmas CD (kinda glad I can put it away now!) We had a pretty scary Christmas Eve, it snowed all day long - then turned to ice! We didn't know it was that bad when we left the house. We ended up getting stuck on a hill (with alot of other people) while on the way to my Mom's. Corey and my Brother were out in the cold for what seemed like an eternity helping the car in front of us get turned around, then our van, then the car behind us.. NOT FUN!!

We had a white CHRISTmas though!! The streets were much better by the next afternoon thankfully. We actually still have ice in our driveway -- again NOT FUN!! Still a little snow left too.. AND its supposed to snow again tonight, WOOHOO!!! Staying home tomorrow!!!

The kids got alot of cool stuff for CHRISTmas. Frankie opened some of his presents for the first time ever!! A MIRACLE!!!!!

Below are some pictures from CHRISTmas day

Doing a little spinning before starting the day..

Santa came!

Zhu- Zhus!

Santa ate both cookies and drank his Milk

Corey and Mikaela

Ready to open her presents

He is opening his presents!!!

He likes what he sees

Tea Set

Playing with the wrapping paper

Pushing his new remote control car

Loves his mailbox!!

Surprise!! She got her new motor scooter!

POOPED!!

Cousins

Beautiful Girl!

Sitting on his new 4 wheeler, loving it!!

What?!

2009-12-22T13:18:00.001-06:00

Please Please Please

2009-12-21T19:20:00.003-06:00

SAY IT GETS EASIER!!

Snow Day!! Well thats what we call it in TX!!

2009-12-03T09:59:00.003-06:00

Then there was HALLOWEEN!

2009-12-03T09:54:00.003-06:00

Better late than NEVER! Mikaela's 4th BDAY pics

2009-12-03T09:21:00.005-06:00

Getting so much closer to walking by himself!

2009-12-03T08:15:00.003-06:00

So proud of my baby boy!!!!!!

Stick and Stones May Break My Bones But........

2009-11-21T09:17:00.003-06:00

I'm SICK AND TIRED of people using HATEFUL WORDS. SICK AND TIRED of the forwarded emails and text messages making fun of the most PRECIOUS people out there.. SICK OF IT! I don't care if you are just being IGNORANT or EVIL, I'm SICK OF IT! SICK OF YOU?!

Short bus jokes, You're a retard, I'm retarded, I'm special, You're special.. Whichever term you use, PLEASE JUST QUIT.. I get it, you want to look cool using hateful words?

There are millions of special needs PEOPLE out there, they have millions of friends and family - do you want them to hear and hurt from your ignorance??

I'm not going to be passive anymore, I'm not going to just hurt inside , I will not keep my mouth shut anymore.. Do you really want to see what a mother will do for her child??? Keep pushing!!

STICKS AND STONES MAY BREAK MY BONE BUT WORDS ALWAYS HURT

My baby boy is one of those precious people, picture him the next time you choose to open your mouth.

And he claps!

2009-10-16T23:10:00.003-05:00

I've waited a long time to see him clap!!! Go Frankie!! Now, he claps and claps and claps and claps!!! I know, kinda corny --- BUT IT MADE MY DAY!!!!

Mikaela and her lollipop

Frankie, excited that big sister shared!

Excited Barney stance!

Waiting patiently

My precious babies!!!!!!!!!!

Please vote for Frankie in the Baby Gap Contest!!!

2009-10-01T20:35:00.001-05:00

http://family.go.com/gapcastingcall/entries/momma2mikaela/532031506/#vote/532031506

PLEASE!!

Looking back... This was one of my first real "Blog posts"

2009-09-13T10:56:00.000-05:00

I like to look back at our old blog every once in a while to see how far we have come..This post was kind of a coming out, going public with "Our New Journey". Everytime I look back it makes me cry! To see how far we have come, all the struggles we have endured and thinking about whatever the future may bring.

Why Frankie?

Date: 04/18/2007

I was in the NICU visiting Frankie, he was about 48 hours old. The Neonatologist came by to talk to me. He said "We think your son has Rubinstein-Taybi Syndrome." We had talked about some characteristics before (an extra toe, a crooked toe and finger, flat-broad fingers and toes, and a prominent forehead). He handed me a book and walked away. At the moment I was thinking that he had a few minor physical defects, who cares? That didn't bother me. I put the book down and went on to feed Frankie. My mom arrived a while later and I let her hold him. I picked the book back up and started to read. I didn't get very far. The further I read the harder I cried. I read about medical issues, heart defects, eye problems, feeding problems, delayed development, mental retardation. I read about the average ages for developmental milestones- walking- 30 months, first words 25 months, I read that 90 percent have speech delays and some never talk.

All I could think was why Frankie? Why us? Why anyone? We had many sleepless tearful nights at first. Everytime I saw our little angel I started to cry. Our world was upside down.Frankie has had numerous Dr's appointments to check on the most common medical issues that come with RTS.

He has seen an Opthomologist who said everything looks good right now. He said that alot of problems don't become visible until about 3 months of age, so we will visit him again next month when Frankie is 3 months old.

He has seen a Cardiologist who noticed a small opening in his heart. It may be the normal opening that some newborns have that close on their own in time or it may be a true defect. Only time will tell. He also has a soft murmur because of this opening and possibly an extra heartbeat. We go back in 6 months.

He has seen a Genetic Specialist who confirmed his diagnosis of RTS. She said that based on his physical features it looks like he may have a mild case. This is what we pray for, but only time will tell. We see her again in 6 months to check on his development.

We go next week to an orthopedic Dr. to get a consult on his fingers and toes and also possibly his bone structure.

Frankie has also been referred to ECI he will be having Physical Therapy, Occupational Therapy, Speech Therapy and lots more through them over the next three years.

We can now answer the question "Why?" Why Frankie? Because this is how God wants him to be. Why us? Because God chose us. We are here to teach him, he is here to teach us. He has already taught us so much, he has already changed us so much! He has given so much to us and everyone around him. I see it in Mikaela everyday. She loves her little brother so much, there is no jealousy. It is very strange to see her so accepting of him with her being so young.

We are very blessed to have Frankie as our son, we no longer have to ask why. We know why, Frankie is here to change the world one heart at a time.

We are so thankful to have such wonderful, caring and giving family and friends. Thank you all.

Please continue to pray for our Angel, your prayers are going to carry him further than you can imagine. Much further than the Dr's predict!

Our reality..

2009-09-06T12:13:00.003-05:00

His Beautiful Voice!

2009-09-03T21:03:00.006-05:00

I had a glimpse into Frankies future today. This morning as I opened the fridge he saw his yogurt, this boy loves his yogurt! He said clear as day "BITE!" Then this afternoon we had company over doing paperwork, when one of the ladies was leaving he looked at her, waived and said BYEBYE! (again clear as day!) I want to cry just thinking about it! For the first time in his life I think we will be able to hear his BEAUTIFUL VOICE! Whats next? :)

RTS Mid-South Reunion

2009-08-27T22:53:00.004-05:00

RTS Mid-South Reunion August 1, 2009

John (21?), Lily (14)

Madi (4) , Frankie (2), Bethany (3) , Jo-Jo (5)

We attended the RTS Mid-South Reunion in Little Rock, Arkansas at the beginning of the month and had a blast!! We were able to meet 5 other RTS Families. Here are a few pictures from our weekend...

Frankie stuffing his face!!

Mikaela and Madi hanging out under the table

Bethany and Mikaela hanging out

Jo-Jo Spinning Frankie and Bethany

Bethany and Madi saying their Goodbyes!

Bethany and Jo-Jo saying their Goodbyes!

Lauren (Bethany's big Sister) and Lily

Frankie and Bethany hanging out in the chair - spinning of course! They were so cute together!

My little Rock Climbing girl!

Mikaela and her "Bubba"!

We can't wait till next year!! We also hope to attend the RTS Conference in Ohio next year as well, there are more families to meet!

Some pictures from our San Antonio - 4th of July Trip

2009-07-16T15:33:00.011-05:00

Ouch!!!

2009-06-10T08:20:00.004-05:00

Mikaela introduced her forehead to the sidewalk Sunday night in her first bike accident. The contact was very loud and very scary!! The neighbors on the opposite side of the street even heard (The sound was her forehead hitting the sidewalk, a big thump! ) :(

Her head was all mushy so we ended up at the ER, all is well though thankfully!!

Here is a picture of her showing off her beauty of a forehead. It looks much uglier in person!

She's only 3!!

2009-05-18T15:44:00.000-05:00

MY BABY GIRL!!!

2009-05-17T21:28:00.000-05:00

Is riding her bike with no training wheels!!! Who taught her?!?! SHE TAUGHT HERSELF!!! She is only 3!!!! My baby is growing up!!!

We will be posting a video tomorrow, since she started in the dark!!

SO HAPPY!!!

Multi-Tasking

2009-05-14T12:09:00.005-05:00

Cruising and Crying :)

So proud of my Frankie Doodle!! (For the Cruising at least!)

Our Vacation - TONS OF PICTURES!

2009-05-08T12:40:00.001-05:00

We left early Saturday morning headed to San Antonio. The kids were great in the car !! It was about a 4 hour car ride (maybe a little longer.) While in San Antonio we visited Sea World (twice.) Mikaela loved the waterpark the most! We saw the Shamu Show (Believe) and one other while there. Mikaela wanted to sit in the splash zone during Believe (they also call it the soak zone). Her and Corey sat and waited for Shamu to splash their way, the moment it happened she lost it!! She cried so hard, it was actually kind of funny!!! She says she cried because Shamu got water in her mouth LOL.. Too funny!!! Now, onto Frankie. Frankie hated the sun, he hated the water, he hated the shows, hmm he hated just about everything!!! We also visited the Alamo area and Market Square while in San Antonio.

Monday morning we headed to Galveston, its still pretty tore up in some spots but its still beautiful!! Mikaela loved the beach, the sand, and the sun!! She built a few small sand castles, searched for sea shells and walked in the sand and water. Frankie hated the Beach! He hated the water, the sand and the sun! At night we went to Kemah's Boardwalk, Mikaela of course loved it!! We left after the Carousel, yes the Carousel made me feel woozy!!

On Tuesday before heading back to the beach we visited NASA in Houston. Mikaela loved it!! We saw a short movie which she actually sat through, visited a few exhibits then spent some time in the playzone. She talked me into going in with her, OH MY!! Its been sooooo long!! One hour and 3 slides later my back was ready to go!!

Back to the beach we went! Frankie didn't like NASA much, however instead of crying he slept for a while :) Wednesday we headed back home, the kids were super annoying in the car!! 5 hours later we made it home, the kids slept so late the next morning.. It was wonderful!!

When we pulled up to the house Frankie got excited and started his shaking thing , TOO FUNNY!! He shook all the way to the door then tried to jump out of my arms when we walked in.

Anyways, we are home. We had a great time!! Cant wait till our next trip!!

Two Days at Sea World San Antonio, TX

My exhausted babies!

The Alamo

On the Road Again!

Boardwalk- Kemah, TX

NASA Space Center - Houston, TX

Seeing how strong she is in the Different Planets!

Exhausted after visiting NASA

Refusing to nap!

Ready for the Beach :)

Galveston Island , TX

Sensory overload!!

She was in heaven!

Lets Go Momma, Outta here!!!

Vacation Pictures - Sneak Peek

2009-05-06T22:16:00.004-05:00

UH OH!!

2009-04-29T21:17:00.002-05:00

He will be going to the barber shop next time!!! Kinda messed up and had to go BALD!

Soccer??

2009-04-29T08:26:00.002-05:00

Maybe next season she will go on the field! :)

All Kids Count Picnic

2009-04-11T20:50:00.000-05:00

Today we attended the All Kids Count Picnic for Special Needs Kids and their Families. Horse Rides, Petting Zoo, Bounce Houses, Face Paintings, Crafts, Games, LOTS OF PRIZES, and Food! WE HAD A BLAST!!! We saw alot of Frankie's friends from his Therapy Center and hung out with a few people from our Special Needs Group. Its always nice to hang out with people who are in your "shoes."

Mikaela after we arrived, very excited!

Mama and Frankie getting ready for some fun

Anxiously awaiting her turn

Not too sure about it!

There she goes :)

She loved it!!

Hanging with the SuperHeroes

She loves her pink heart

Our little Kitty

What a wonderful day! Can't wait till next year!

The Walker!

2009-04-07T20:12:00.004-05:00

Today was Frankie's 1st time using the walker at therapy, look how good he is doing!! They will be ordering him his own next week, so exciting!!

What a Retard...

2009-03-31T14:58:00.004-05:00

What the heck?? Got your attention didn't I?

When Frankie was less than 2 days old he was diagnosed with Rubsintein-Taybi Syndrome (RTS). Among Frankies many medical conditions is Mental Retardation. My beautiful baby boy is Mentally Retarded, hearing that for the first time just broke my heart! Frankie is a little boy who is full of love, life and laughter. My heart is no longer broken, its complete!

How can you know someone like him and use the word Retard? Its such a hateful word! Unless its used as medical terminology its just plain wrong.

Today is a new day, please make a personal pledge to stop using the R Word. You never know whose heart you are breaking when the word comes out of your mouth. Think about it, please!

Please visit this link and help Spread the Word to End the use of the R- Word
http://www.r-word.org/

Happy Birthday Frankie Doodle!!

2009-03-14T17:30:00.005-05:00

Frankie's 1st pictures as a 2 year old!

Two years ago today we were blessed with the most handsome, sweetest and most special baby boy in the world!

We love you Frankie!!!

Mommy, Daddy and Big Sister Mikaela

Here are some Pictures of Frankie enjoying his new Tricycle!! Mikaela loves to push him around!

Party is tomorrow!

Bowl for Kids Sake - Donations Needed!!

2009-03-12T17:32:00.003-05:00

Ok, so Corey told me about this last minute!! He will bowling this Saturday, all donations go to the Big Brother Big Sister program.

Please donate if you can!!

His goal is $100 but we are hoping to collect more.. IF POSSIBLE WITH LESS THAN 2 DAYS NOTICE!! MEN!!!!!! :)

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=298335&lis=1&kntae298335=C88A661AEC2E469AA523A8691E402E1D&supId=245729604

What a Wonderful Day!

2009-03-07T09:32:00.003-06:00

Yesterday morning was so peaceful!! CALM BEFORE THE STORM!!!!

Frankie and Mikaela both slept late. Mikaela was up first. I kept checking on Frankie because it was so unlike him to sleep so late. At 1045 I decided to wake him up. When I went in he had vomit all over his shirt, a 104 fever and was out of it! He had been sleeping for almost 14 hours. I decided to take him back to the hospital. We were gone within about 5 minutes. 1/2 a mile from the house he got this horrible look on his face, he was choking, not breathing, foaming at the mouth and eventually vomiting enormous amounts of mucous. Our plans changed to drive him to the Firestation, he wasn't looking good. When we arrived he was scared to death but breathing, they immediately put him on oxygen. His o2 level was at 90 (not too bad but not good) his heart rate was 270. Frankie had his first and hopefully last ambulance ride yesterday. We spent about 4 hours at the hospital , diagnosis A BAD COLD with tons of mucous. Rsv, Step and Flu all came back negative again. We had a rough night last night! He was up wretching and choking about 8 times last night.. Hopefully things will get better!!

On the way to the firestation I ran over a few curbs (don't laugh!! I was scrared to death and people wouldn't move!!) Anyways, my car sustained some damage and is no longer operable :(

On the way to the hospital our Pediatricians office called regarding Mikaela's labs. She is allergic to Milk, Wheat, Egg Whites and Peanuts. What the heck?!!? We will be making an appointment for her to see an allergist ASAP. Does anyone know how accurate the blood allergy tests are?

Anyways, wonderful day yesterday!!

7 days till Frankies Birthday!!

Stop the R- Word

2009-03-06T10:06:00.003-06:00

Alot of people say it without thinking, some say it to be hurtful. Believe me , it hurts! Everytime I hear the word Retard or Retarded it hurts my heart!! Lets start here, with the people who know someone who is "Mentally Retarded". If you can see this message then you know me, maybe indirectly but you know me. My son is "Mentally Retarded". My son is the sweetest and most adorable baby boy in the world! Again, My son is "Mentally Retarded". The next time you even think about using this word just picture his sweet face and how much it will hurt him when he is able to understand your choice of words! Picture how much this word hurts those who know and love him. Picture how much it hurts the millions of people out there who know and love a Special Needs Person.

Think about it! If its not being used in medical terms then its derogatory, its hurtful!!!! ITS WRONG!!!

Our choice of language frames how we think about others. It is time to ACTNOW and pledge your support to eliminate the demeaning use of the r-word.

Visit our site now to help us change the conversation and stop using ther-word.Visit: http://www.r-word.org/

Frankie - almost 2 years old! Frankie has Rubinstein-Taybi Syndrome (RTS) he is severely delayed in every area. Frankie has Mental Retardation , most likely Moderately.

Please Pray for Cody's Family

2009-03-06T09:26:00.002-06:00

I have been following the blog of an adorable little boy named Cody for a few months. Cody has been battling cancer for a while now. Cody lost his battle this morning :(. Please be praying for his family.

http://deckapes.blogspot.com/

Update

2009-03-04T16:11:00.002-06:00

Mikaela is still getting hives, not as bad as they have been though. This morning they surrounded her right eye. It doesn't seem to bother her that much anymore.. She also has an ear infection and is on antibiotics.. I took her for lab work early this afternoon, it was a traumatizing experience!! It took 3 attempts but they finally were able to get what they needed. Afterwards she got her chocolate frozen custard with gummy bears from Woolleys next door. She is better now!!

We took Frankie to the ENT a few hours ago, he now has a double ear infection. They sucked alot of Puss and other goop from his ear, now we start using antibiotic ear drops. He is waiting on the report of the culture that was done yesterday to see if anything else needs to be done.
Frankie also is very congested and is having a hard time breathing. He keeps gasping for air. We may be back to the DR. Sooner than later!

Both kids are sleeping now, woohoo!! Going to catch up on the last 2 weeks DVR shows that I missed!

10 days till Frankies Birthday!!

My Life!!

2009-03-04T08:02:00.005-06:00

I felt like sharing the last 2 weeks with everyone!!

4 Visits to the pediatrician, 2 visits to Urgent Care, 2 visits to the Hospital, 1 Gastric Empty Study, 1 PH Probe. 2 Antibiotic Shots, 1 Penicillin shot, lots of Omnicef and Amoxicillan.

Tons of vomit (6 Days), hives, strep throat/ scarlet fever, coughing, snot, tears, fevers, puss coming from ears, crying, whining,.

Today -- Visit to the ENT, Visit to Quest for labwork.

3 Missed days of school, 3 missed days of Therapy.

Many sleepless nights!! I'm sooooo tired!!!

Two Beautiful Happy Babies!! Its definitely worth it!

Help!! Update on Mikaela

2009-03-02T08:12:00.005-06:00

So, 13 days ago Mikaela started getting hives. Shortly after she started vomiting and ran a high fever. The vomiting lasted 6 LONG HORRIBLE DAYS!! She is still getting major hives. We have used Benadryl and are now taking an allergy medicine. When she doesn't have medicine the hives return. She was diagnosed with Strep throat and then they said Scarlet Fever (strep throat with a rash). The hives she has however are not a strep throat rash (we were finally told this on Thursday). She has been to the DR. 4 times in the last 12 days. Does anyone know what this could be?? She has never had allergy issues before. Some of the hives are round circles, they look like bites. Alot of them are long and skinny - they look like scrapes. The area around them are usually very red and she gets swollen.. They are gone within about 30 minutes usually. They pop up at all times of the day, morning , noon, and night! The first few days they didn't seem to bother her, THEY DO NOW! She gets alot on her face, arms, legs, fingers and toes. Also a few on her tummy and back at times. We have not started any new lotions or detergents and its not specific to being inside or out.. She gets them Everywhere!

Here are some pictures that I took yesterday morning..

Rare Disease Day, and lots of Pictures!

2009-02-28T07:45:00.012-06:00

Please show your support and sign the petition for Rare Disease Day

http://www.thepetitionsite.com/1/rare-disease-awareness-day

Also please take a moment out of your busy day and educate yourself on a Special Disease / Disorder or just the organizations that are trying to bring light to all those who are affected. This may be something that means nothing to "you" but it means the world to me! Please help us make a difference. Just one more person who understands is victory to me!

http://www.rubinstein-taybi.org/ Rubinstein-Taybi Syndrome Family Resource Site

http://www.rubinsteintaybi.com/ Special Friends Foundation

http://www.stephanie-hunt.com/index.htm Stephanie Hunts page for Rare Disease day and RTS Fundraisers

http://rarediseases.org/%20 NORD - National Organization for Rare Disorders

Also check out the links on the right for other RTS Family Blogs!

Thank you for taking the time to learn more about our struggle!!

Below are some pictures that were taken when we had the opportunity to meet some of the RTS sweeties in our area.

February 2008 Incredible Pizza - 4 RTS Sweeties in attendance

March 15, 2008 Frankies 1st Birthday Party

June 2008 , RTS Barbecue at Frankie's House

December 2008 , Hanging out with Bella

January 2009 - Rest in Peace Princess Bella! We Miss you!!!

Thanks for looking!! Love Frankie :)

Rare Disease Day February 28, 2009

2009-02-27T10:19:00.004-06:00

I just wanted to share some news with yall! I just received an email from Governor Rick Perry's office. Texas is now on board for Rare Disease Day, he just signed today!!

This goes to show that when people work together change does happen!

Thank you to everyone who emailed , wrote or called on behalf of those who have a Rare Disease / Disorder.

Updates on the Kiddos

2009-02-17T21:21:00.001-06:00

Frankie is doing great, aside from his tantrums and constant screaming/crying!! The little boy didn't cry for the first 6 months of his life.. I knew he would make up for it sometime!! Thank God for tylenol!!! He is busy crawling around the house and getting into stuff.

Below are some pictures of his new Orthotics (Foot/ Ankle Braces) he has some trouble with his feet and trouble with the strength in his legs (he likes to lock his knees to get support) Hopefully the Orthotics will help!! He doesn't seem to mind them much. We even found a pair of tennis shoes that fit today, woohoo!! Stride Rite size 5 1/2 XW (Extra Wide) they look so huge compared to his little body!! They also fit into his Crocs which are pictured.

Frankie is also doing patching, switching eyes daily. He doesn't have strabismus but his eyes do wander at times. It took a while but he is finally getting used to it. At first everytime I patched him he would fall asleep, it was crazy yet lovely!!

Mikaela is doing great, she officially quit the basketball team! After about a week off we attempted practice again, she was scared the entire time. She wouldnt step foot on the court without me and freaked out everytime someone ran past her or just close to her.. Oh well, we will try again in a few years!!

Here she is with some of her artwork, well cutting!! She loves to cut up paper with her scissors - she calls it "making snowflakes". She doesn't like to clean it up though! Neither do I!!!!

Below are some pictures we took at Chuck E. Cheese, we went for our playgroups Valentines Party. Fun Fun Fun!!

Frankie with his "Cup". Endless hours of entertainment!! He loves to bang!

I can't believe it, but Frankie will be 2 in 25 days!! Where has the time gone??

Vomit--!!!! Mikaela has been vomiting all over this evening, she is so sick :( she is also running a high fever with whelps all over her body.. Frankie had a very upset stomach this past weekend, he even threw up (all over me of course) in the middle of the night.. Kind of crazy since he isnt supposed to be able to throw up!! I'm guessing maybe he got Mikaela and Corey sick?!! He also has had an ear infection for over a week and half. I can't wait till everyone is healthy again!!

Looked what he learned! So exciting :)

2009-02-06T23:16:00.003-06:00

Be sure to pause the music on the bottom right hand side!

Check him out!

2009-02-05T19:21:00.004-06:00

Frankie is now self feeding himself! Crackers, Rice Cakes, Cheerios, Gerber Puffs and on and on

Exiciting!! I have waited too long for this day!! I just love the messy carseat!!! Car trips are alot let stressful now, I can hand him something and it keeps him quiet for a while :) He loves his Chicken in a Bisquit crackers - pictured below!

NORD National Organization for Rare Disorders

2009-02-04T16:06:00.004-06:00

Please check out Stephanie Hunt's page - Former Mrs. United States. Stephanie has a son with RTS. February 28th is being set forth as Rare Disease day in many states. You can sign the petition and also find a sample letter to email to your governor to get your state involved!

I already emailed our Governor, Rick Perry. The more the better!!

For Texans you can click this link to email the Governor

http://governor.state.tx.us/contact/assistance.aspx

Please help us draw attention to the many Rare Disorders out there affecting our children! You are reading this blog so you know someone who is affected by a Rare Disorder - in Frankies case its RTS Rubinstein-Taybi Syndrome. Help us make a difference!!! Please spread the word

http://www.stephanie-hunt.com/ Stephanie Hunts page

http://www.thepetitionsite.com/1/rare-disease-awareness-day Petition

http://www.stephanie-hunt.com/nord.htm Link for Sample Letter

A Dream Come True!

2009-02-02T13:19:00.004-06:00

So guess what the kids are doing right now?? Playing in the playroom!! TOGETHER!! I know that sounds kind of strange to some out there, an almost 2 year old and a 3 year old are playing - BIG DEAL! Seriously, its a BIG DEAL!! I have been waiting sooooo long for this day!!!

Oh, and guess how Frankie ended up in the playroom? HE CRAWLED THERE :)

STEPPING UP!

2009-02-01T17:04:00.001-06:00

Two RTS Angels, one on earth and one watching over us from Heaven

I think its about time that something is done. I am sick and tired of Rubinstein-Taybi Syndrome (RTS) being foreign. I am so tired of having to teach Dr's and Nurses about my son, aren't they supposed to teach us? Aren't we supposed to learn from them? I know that RTS is very rare but if you are treating someone with RTS shouldn't you make an effort?

I heard too much these past few weeks, I think I was pushed over the edge! I'm referencing the time we spent in the hospital with Bella. I was present for a few conversations with her Dr's, I was also told about many more.. Specifically a Dr's response to questions about a lung transplant. "Why can't Bella get on the list for a lung transplant?" Response - "It's my understanding that she doesn't qualify because of her Syndrome" WHAT THE HECK?? Its my understanding that you DONT UNDERSTAND! Another example would be the questioning of her medications. There are some medications that we as the families know that some of our kids can't handle. I.E. Versed , I.E. Morphine and on and on. When the questions arose the Dr's replied with "Show me the research then we will talk about it." Shouldn't they be the ones showing us the research?? The problem is that there isn't any research! I am fearful for the day that Frankie is in this position, I pray that he will never be!

We need to step up and do something. Remember the RTS Research Fund? I strongly believe that research isn't going to help us. We can't change our children, but we can change what information is available to us and the Medical community. Can we use some of the funds and future funds for Medical Documentation /Compilation? Statistics? Like what medications are questionable, how many had adverse reactions? Updated facts on Medical issues? It's so hard being in the dark, but even harder when your child is facing the fight of their life and noone knows anything about their condition.

I don't know where to start but I know that we need to! We are blessed to be the family and friends of RTS Angels, we all need to step up and make a difference for the future of our Sweeties.

We are stepping up and spreading the word, are you?

Rest in Peace Princess Bella

2009-01-31T20:45:00.003-06:00

Rest in peace Bella Reign, you will be in our hearts forever!!

I wanted to write and let you all know that yesterday was the saddest yet most beautiful day ever. Bella was laid to rest yesterday morning, many thanks to all the RTS families , Special Friends Foundation and Wesley T Helmbrecht Foundation for making the day possible. Her final resting place is next to a young tree, one that will grow with her. The cemetary that she is in is very beautiful.

I wanted to ask again that you all continue to pray for Monica and her family.

Please also pray for the Priest who led Bella's Mass yesterday. Pray that he finds the lord in his life, pray for his heart! I have never met such a rude, cold and heartless person in my life.. And for him to be a priest? Pray that Monica can get past his actions yesterday and be able to see how beautiful and perfect everything was.

Our kids are truly wonderful and all knowing! Everytime Frankie was in Bella's presence he just put his head on my shoulder and was so calm and peaceful. He also saw her a few times, everytime he saw her he got the biggest smile on his face - bigger than I have ever seen. He was overwhelmed with joy, he knows that she is comfortable now and in an awesome place.

here is a link to her obituary

http://www.cleburnetimesreview.com/archivesearch/local_story_028113518.html

Thanks again,

Gena

Thank You Thank You Thank You!!

2009-01-29T13:02:00.002-06:00

Many thanks to the Special Friends Foundation and the Wesley T Helmbrecht RTS Foundation for covering THE ENTIRE COST OF THE FUNERAL AND BURIAL!

We are all blown away by their generosity!

An account has still been set up to help with other expenses, mainly travel related.

If you are wanting to make a donation the account is at Bank of America and I have the Acct Number. It is under the name of Monica Cordova - Beneficiary 488019761509 (I think that is how its listed) Anything received beyond their needs is going to be donated to RTS Research. If you want to make a donation directly or send a card , Monicas address again is

1302 Kilpatrick #217 Cleburne, TX 76031

Thank you all again for your prayers and assistance. Please continue to pray for Monica and Family.

Frankie and I are leaving in a few hours so we can be there tomorrow. We are flying (thank you Jayne for the Buddy pass!) Driving is just not an option with Frankie, at least not by myself!

Celebration of Life

2009-01-28T08:02:00.002-06:00

Bellas Funeral is going to be Friday in Midland, TX. Viewing is going to be today.

Monica has asked to please not send any flowers or gifts. She asks that if you were wanting to do this that you send a monetary donation instead. She is needing assistance in funeral costs.Anything will help. Whatever is left after funeral costs she will be donating to RTS Research and Cook Childrens Hospital - Cooks took such wonderful care of her for 2 years!

An account will be opened today for donations to be deposited into. Please help us in remembering Bella! Bella's funeral will be a celebration of her life with a princess theme, not the traditional black. A beautiful day for such a beautiful angel!

I will update with Donation information once the account is set up.. Thank you all! Please keep Monica and family in your prayers

In the Arms of the Angels

2009-01-26T08:39:00.001-06:00

In memory of Bella Reign Guerra February 16, 2007 - January 25, 2009

Bella went on to be with the Lord last night.

Please keep Monica, Marcel, Destiny, Destin and Family in your prayers.

Bella was truly an angel sent from above, I feel very blessed to have known her.

Bella was 23 months old.

Basketball Practice Disaster!!!

2009-01-24T22:54:00.004-06:00

Mikaela had basketball practice last night.. It started at 6pm, at 615 we were on the way to the ER! Right when we walked in she got smacked in the face with a ball, I should have known it was going to be one of those nights!! At 615 she was chasing after her ball, the team on the other side of the court started running laps around the gym (8 year olds, GRRR!!) Mikaela was hit head on and flew back busting the back of her head. We spent a lovely 6 hours in the ER. Mikaela had a CT Scan which came back good. She has a swollen nose, 2 small black eyes, a bump on the back of her head and a concussion.

Since we were already there we registered Frankie who hasn't been doing too good, he has an upper respiratory infection.

Monday morning I will be making phone calls! They practice at an elementary school GYM, its not huge. To have kids running around when there are 3 and 4 year olds practicing is ridiculous.. Because of the size of the Gym, these kids were actually running on the court. GENA IS ANGRY!!! We were so lucky that it wasn't any worse! The girl who ran into her (big girl!) hurt her shoulder , she too was crying! I'm not sure if she will be continuing this season, it was very scary!!! I don't know who cried more, Mikaela or I!

Sneak Peek from Bella's photoshoot

2009-01-24T18:51:00.004-06:00

My nephews girlfriend came out and did lots of pictures of Bella today, here is a sneak peek. These are pictures that I took, hers of course will be much better!!

Frankies appointment

2009-01-22T16:59:00.002-06:00

Well I guess I misunderstood or was told incorrectly. We showed up at 1030 and ended up with an Upper GI.. The scope, etc will be next Wednesday!

The Upper GI showed a little herniation of his Fundo, not much else..

Thanks for thinking of us :)

Our visit with Bella

2009-01-22T14:30:00.004-06:00

We were able to see Bella today while we were at the hospital, they even let Frankie in! Here are a few pictures..

Please continue to pray for Bella, Monica and Family. There is going to be a meeting at 1230 on Monday afternoon to discuss whats next. There aren't very many options, turning off the Vent and letting her pass or taking her home in her present "state".

Monica wanted a picture of the two of them together, so she tossed Frankie in the crib when the nurse turned her back!

Check out the princess!! Monica braided her hair, she looks like Pippi Longstocking!

I was asked by a few people for an address to send cards and notes too..

Their address is 1302 Kilpatrick #217 Cleburne, TX 76031

Please be thinking of Frankie today!

2009-01-22T08:06:00.002-06:00

Frankie is going in for another EGD, biopsies and possibly pylorus dialation. We have to be there at 1030 this morning..

He has been burping like a mad man and has even spit up a few times, something that he isnt supposed to be able to do.. He has been up at night crying and crying and crying.. Hopefully they figure out whats up and hopefully whatever it is doesnt require a repeat surgery!

Please say a prayer for him that anesthesia doesnt get him this time like it did 6 days ago!

Another Bella update

2009-01-21T20:51:00.003-06:00

Bella is still "asleep". They attempted to ween her off the drugs that are keeping her out, this started on Monday. She finally woke up today and was not breathing at all. Of course she fought the Vent, shes a stubborn little princess! They had to put her back under unfortunately. Thats all that I have for now, nothing much has changed :(

Please continue to pray for sweet Bella!

This first picture is from Saturday when i visited her. She was awake and at about 50 percent Ventilator.

This picture was taken yesterday, 100 percent Ventilator and in drug induced sleep.

Bella Update

2009-01-18T20:47:00.003-06:00

I was waiting till today to give an update because I was hoping for good news from Monica this morning.

I was able to go visit Bella yesterday afternoon. She was on the Vent, I think maybe around 50 percent O2.. I was there when the Dr's visited. RSV and Flu both came out negative. They talked some about her chest Xrays, evidently she has Pneumonia again. The nurse had said that her xray was very hazy, it looked horrible. He did however say that it looked a little better than it did during the night. Bella was "drugged up" quite a bit because she does not like the vent. She was still awake and wanted to play though. She kept begging to be held but we arent able to hold her. Monica got to hear Bella for the first time yesterday. She was making alot of noise, the typical baby noise.. It was adorable! This really made Monica feel alot better, she has always wanted to be able to hear her "voice" definitely not in this way but it did bring a little sunshine to her day.

Monica left late last night to go home and get her other kids ready for the week of school ahead of them. When she returned Bella was on the Vent at 100 percent and they had paralyzed her. At this point they are going to keep her paralyzed for a few days to try and give her body a chance to heal / fight. She seems to be getting worse instead of better. It also doesn't help that she is fighting the vent with every ounce of energy that she has!

Things aren't looking good at all. Please continue to pray for Bella, she is the sweetest most precious baby girl in the world! Please also pray for Monica, she has some very tough decisions ahead of her.

Please pray for Bella!

2009-01-17T06:00:00.002-06:00

I wanted to give an update on Bella, she was admitted to the hospital yesterday (Friday). They were thinking she has RSV, I'm not sure if that was confirmed yet. She had a tight chest, wheezing and a 102 fever. They attempted an IV on her and she stopped breathing, she was transferred to the ICU. The last update that I received was at about 1 AM and she had just been put on a Vent.

Please be praying for Bella, Monica and Family. She had just recovered from Pneumonia, and had been out of the hospital for about a week. I had last spoken to Monica on Thursday and she said she was doing great. There was a big change in just 24 hours. Bella is a very strong girl, a fighter like the rest of our RTS sweeties! Please pray that she pulls through. Bella will be 2 on February 16th :)

Gena

We are home!

2009-01-16T15:46:00.002-06:00

It was a very long day!! We left the house at 530 AM and didn't get back home until about 245 PM. The surgery itself went great, it took about 5 minutes to get the Adenoids out. Recovery wasn't as great. He was in recovery for close to 2 hours before I was able to see him, a long 2 hours! He had alot of trouble breathing and was on oxygen for quite a while, thankfully it didn't last too long - they were talking about keeping him overnight!

We are home and he is sleeping.. He doesn't seem to be in too much pain but he is exhausted. He also keeps choking and gagging, I'm guessing because of the swelling.

Thats it for now!

Surgery

2009-01-15T21:15:00.000-06:00

Surgery is at 7am, we have to be there at 6am -- YES 6AM!!

Will update when we get home

Shes a Superstar!!

2009-01-10T21:59:00.002-06:00

Getting ready for the 1st game!

Isn't she just too cute?!?!

Warming up

Good Game!! Maybe next time there will be less running in circles and running off the court to see Mommy, Daddy and Bubba

You have to see it to believe it!

2009-01-08T18:48:00.004-06:00

Snorrrrringggg!

2009-01-07T21:23:00.002-06:00

Frankie snores horribly, he also has apnea episodes throughout the night. I took him to the ENT on the 23rd of December for a consult. I was told his tonsils are tiny , they did an Xray of his Adenoids and they are HUGE. After much consideration we decided to have the Adenoids removed. He will be having surgery on January 16th - next Friday. If all goes well he will be home that afternoon! Please say a prayer that everything goes ok! Its a pretty simple surgery, as usual, anesthesia is the biggest concern.

Heres a cute picture that I took a few weeks ago, Frankie got into the crayons!

Check us out!

2009-01-03T22:30:00.008-06:00

Well they did a few updates today and we are all over the site :)

Frankie is now on the homepage!

http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html

He is also on the Heroes page
http://www.littlestheroesproject.org/Littlest_Heroes_Project/Our_Heroes.html

And we are all on the Experience page!!

http://www.littlestheroesproject.org/Littlest_Heroes_Project/The_Experience/The_Experience.html

Here is a picture of Frankie after his haircut today, hes so FINE!! And to all you out there freezing today, it was 80 here today - see his summer attire?

Check him out!!

2009-01-03T18:31:00.001-06:00

Frankie made it onto the Littlest Heroes Website!

Check him out!!!!

http://www.littlestheroesproject.org/Littlest_Heroes_Project/Our_Heroes.html

Bella came to visit us today!!

2008-12-29T19:50:00.007-06:00

We had a blast today, thanks for coming to play Bella! Bella motivated me to start teaching Frankie sign language, after I saw her sign Mommy! UNBELIEVABLE!!

Aren't they cute together?!!

Bella checking Frankie out

Frankie riding his horse while Bella tries out his "Wheelchair"

Look at the big girl, shes so strong!

Cardiologist last week

2008-12-18T20:55:00.002-06:00

I guess I forgot to do an update!! The appointment was horrible! Frankie has devloped a hatred for Dr's offices, it started the day before when he went to the pediatrician and then to the lab for bloodwork. He screamed the entire time at the cardiologist, he shook and he literally choked me.

Anyways, through the fits they were able to get some info off the Echo.. He still has an ASD, its about 4mm. The Dr. said that because it is so small he may never have to have surgery to fix it. GOOD NEWS!!!

Update on the kids --- Mikaela has been sick since last Tuesday. Yes, almost a week and a half!! She has been miserable, high fever , lots of coughing and just plain feeling like CRAP! Frankie has been sick since Sunday, today he seemed a little worse. I took them both to the Dr. this morning. Mikaela seems ok - meaning lungs , ears and throat. Frankie has an ear infection :( I was bragging just the other day about how long it has been since he had an infection!!!!

Frankie will be going in on Monday night for a sleep study (wish us luck!) We then go Tuesday morning to the ENT. He snores horribly!! They will be testing for apnea. Hopefully its just snoring, but you never know!

Mikaela loves Christmas Time!!

2008-12-17T11:42:00.003-06:00

Mikaela is soooo into Christmas this year!! So far we have gone to Prairie Lights, the drive through light show. They also have rides and junk food! We have also gone to the Special Needs Christmas party at Incredible Pizza. Below are some pictures of her enjoying herself!

Still to come - Holiday in the Park at Six Flags (If we are feeling better, we have all been sick! It started with Mikaela and Corey last Tuesday. Then Frankie and I on Sunday. Now Mikaela again!!)

Everytime we go out at night time we have to take her to see all the pretty houses with lights. When we get back to our neighborhood she immediately advises us to open up the van door on her side so she can do her ride through the hood and see all the lights.. Too cute!!

Pictures taken at Prairie Lights in Grand Prairie

Mikaela and Santa at Incredible Pizza

Merry Christmas everyone!! 8 more days! I hope you are enjoying the season as much as we are!

Only 8 more days to fight the presents out of Mikaelas hands after she attempts to open them! Who knows, maybe next year I will get to fight Frankie too :)

The Littlest Heroes Project

2008-12-14T18:04:00.008-06:00

We had our photo shoot 8 days ago, it was wonderful! Megan Hamilton is an awesome photographer, so sweet and caring! Thank you so much for coming out to our home Megan!
She posted a few pictures on her blog -- a sneak peek. They look great! Here is her blogspot link if you want to see them all, I will post a few here. http://meganhamiltonphotography.blogspot.com/

Big thanks to the Megan Hamilton and the Littlest Heroes Project http://littlestheroesproject.org/Littlest_Heroes_Project/Home.html, we gave up on portrait studios because of the stress it put on us and the kids. We know who is doing our pictures next time :)

DFW Folks -- Please check Megan out at http://meganhamiltonphotography.com/ you will love her and her work!

Thanks also to Jessica Pruitt for letting us know about the Littlest Heroes Project!!

Cardiologist appointment

2008-12-08T11:05:00.002-06:00

We have been rescheduled for Friday at 11am! Thank God! I thought we were going to have to wait another 2 months!

Well I received a call this morning from the Cardiologists office, the Dr. is out sick. Are they allowed to be sick?! Anyways, they will be rescheduling us. I was so anxious to hear what they had to say today! :(

Cardiologist follow up is tomorrow!

2008-12-07T16:16:00.005-06:00

Frankie has his yearly follow up with his cardiologist tomorrow at 1130. Pray for good news!

Just wanted to share!

2008-12-02T13:30:00.003-06:00

Just wanted to share with yall what Frankie's PT said today. She asked if we had locks on the cabinets yet. Why, you say? Frankie should be crawling soon! He is doing great and almost has it!! So exciting!!

Frankie and his little cuz Trey playing on Thanksgiving

Getting ready to brush his teeth! He loves to brush his teeth! Ok, he loves the little game we made out of it!!

For the DFW folks

2008-12-02T08:28:00.001-06:00

this sounds awesome! we will be going to the Euless one!! Frankie loves Incredible Pizza!!

http://www.ipceuless.com/

The first ever Special Needs Christmas party will be held on Saturday, December 13, 2008 from 9:00 a.m. to 1:00 pm at both America’s Incredible Pizza Company locations at 1201 W. Airport Freeway in Euless and 1330 N. Town East Blvd. in Mesquite. Incredible Pizza will be open only to special needs children and their families from 9:00 a.m. to 11:00 am on December 13th. A reservation is required for attendance. (For reservations call: Cynthia Ward at 817-538-3209). Lunch will be served from 12:00 noon to 1:00 pm. At 12:00 noon Santa (Santa USA) will land in two helicopters with his elves. We are asking the public to participate by donating a new unwrapped toy for a special needs child. Toys will be accepted at both Incredible Pizza locations from October 30th to December 12th as gifts for the special needs children. These gifts will be distributed to special needs children at the event on December 13th. A dove tree will be located in each lobby with children’s ages for Christmas gifts. If you know a special needs child that would like to attend the event please call for a reservation. Reservations are free of charge for the special needs child and their family. They are available on a first call, first served basis with 300 seats available.

Got Milk?

2008-11-25T17:04:00.000-06:00

Too cute huh?! Frankie now understands what a cup is for, he has been bringing it up to his mouth to take a sip. He did this in the bathtub the other day and got a little too much water!

So proud of our little man!

What's up with Frankie?

2008-11-23T21:21:00.008-06:00

***UPDATE -**** So, I guess I was wrong :( Frankie weighs 18 lbs 4.2 oz , he only gained a tiny tiny bit .. He is 28 1/2 inches long . He is now in the .01 percentile for weight and .01 for height

Its been a while since I gave a Frankie update , so here it goes!

Frankie has been doing great! As of the 14th he now has 6 teeth, 2 on the top and 4 on the bottom. Too cute!! He does like to bite now so beware!! He also looks like he is putting on some weight -- finally! His dietician will be here tomorrow morning for a weigh in, I'm thinking that hes at about 18 1/2 or even more now. Hopefully I'm right!

Frankie's jumperoo has been in the garage for a while - he had gotten a little bored of it. We pulled it out about a week ago and guess what he did? He jumped! Hes a jumping fool! Its too cute, I've been waiting for this day! He got the jumperoo a few weeks before Christmas last year, it just took 11 months to figure it out. Go Frankie!! I've been trying to post a video, I think its too long. I will get one up though so everyone can see the big boy in action!

I'm not sure if I mentioned this before, but Frankie now gets into the crawling position by himself, he also will get out of the crawling position and sit up. We are hoping to have him crawling before his 2nd birthday, we have about 4 more months - wish him luck! He has made alot of progress in just the last few weeks! He has even been pulling up on some things, mainly his computer chair. He will pull himself up to the side, very cute yet scary!

One more thing, I contacted the Littlest Heroes Project http://littlestheroesproject.org/Littlest_Heroes_Project/Home.html a few months ago and finally heard something back! (Thanks for telling us about it Jessica!) We will have our photo shoot on Saturday December 6th, we cant wait!!

Finally, our Halloween Pictures!

2008-11-12T14:09:00.002-06:00

Playgroup Halloween Party

After Playgroup Party

Fall Harvest Festival at Mikaela's School / Church

Trick or Treating

Mikaela and Alyssa eating their Goodies!

All in one day!

Our baby is 3!! Happy Birthday Mikaela!

2008-11-11T21:28:00.000-06:00

9 days late but finally posting!

Mikaela turned 3 on the 2nd, my how time flies! Just yesterday she was a tiny little thing! We celebrated her birthday at Incredible Pizza, she had so much fun! Thanks to everyone who attended :)

We are so blessed to have our 3 year old angel PRINCESS !!!!!!

Heres a little flashback before we get to her 3rd birthday pictures...

Mikaela's BIRTH-day

Mikaela's First Birthday

Mikaela's 2nd Birthday

Mikaela is 3!!!

Happy Birthday baby girl, we love you!!

My SuperBabies!! And then some...

2008-10-30T13:13:00.010-05:00

SuperGirl!!!

SuperBaby-Boy!!

Look at my big boy!!!!!!!! I just love this picture :)

Practicing standing and loving it!

Playing ball with Sister, he loves to roll it back and forth!

Sharing his chair with Maggie, so sweet of him!

Hanging out on Maggies shoulder

My beautiful princess!! Almost 3 years old!

Such a Sweetheart :)

Isaac and Mikaela, so sweet!

"Mommy hes slapping me again!!"

The Three Amigos hanging out

His "Wheelchair"

2008-10-22T15:24:00.004-05:00

It's finally here!! Frankie loves it!! He threw a fit the entire time the man was here setting it up, all he wanted to do was get in!

Look at him!!

2008-10-21T14:44:00.004-05:00

Frankie took his first big boy bath on Saturday!! Both he and Mikaela loved it, our little baby is growing up!!!

He wasn't too sure about it at first, notice the weird angle of his body?

Sister trying to clean him up

Sitting a bit straighter!

At the request of Mikaela, Frankie joined her again this morning.. Too cute!!!!!

The Booty Biopsy

2008-10-20T12:11:00.002-05:00

Frankie's surgeon called last night (yes on a Sunday night!) with biopsy results. He tested Negative for Hirschsprung's!! :)

It looks like his constipation issues are just the normal RTS problems, mainly low muscle tone.

1 Morning - 3 Appointments - 1 BIG NAP!

2008-10-17T11:48:00.000-05:00

Frankie had his biopsy yesterday morning. We should have the results either today or tomorrow morning. We are hoping its negative!

He also saw his GI Dr. yesterday. He has lost more weight, he is back at 17.8 pounds (with a diaper on) he was at 18.1 without a diaper. We are going to start night time pump feedings to get him extra calories. This will also get us extra sleep, as long as his tummy tolerates it! Hopefully we figure out the magic number and won't have any wretching episodes...

After the GI appointment we went to the lab for bloodwork, they are checking for a milk allergy. My poor little guy was poked 3 times, he was hysterical the entire time! They can never get blood from him, they even have a hard time with IV's - he always comes back with multiple pokes after surgery. They don't even do it until hes asleep so we know its just not his wiggling! Anyways, hopefully we know the results from the blood work soon.

When we finally got home from our LONG MORNING Frankie took his afternoon nap - 4 hours!!!! It was crazy yet wonderful!! He is napping now as we speak, going on 2 hours :)

Enjoying the nice afternoon on the lawn

Look at the excitement in her face, she loves her BUBBA!!

Mikaela feeding her Bubba apple juice and Miralax, Momma's big helper!

Hanging out with Bubba on his Chair. They love each other so much!

Mikaela loves to fold towels, great helper always!

My Swinging Babies :)

My princess is an outdoor gal

He's a screamer!

2008-10-17T11:47:00.004-05:00

Excuse Me!!!

2008-10-12T21:44:00.010-05:00

He did it! Frankie burped today!!! So exciting!!!!!!!!! I haven't heard my little man burp since he had his Fundoplication in February.. It was beautiful!! Burpppppppp! :) Of course I made a big deal about it - even got him excited!

I'm hoping this keeps up so he can get rid of that nasty gas that always hangs out in his tummy. At the same time I'm hoping that this doesn't mean reflux will start coming up again.. Wish us luck!

Hanging out in the front yard, poor baby is sick :(

Getting ready to carve her pumpkin! She already "colored" it!

Goodmorning!! Hanging out on the couch watching some cartoons :)

Getting ready to spin!

18 Month Checkup

2008-10-08T11:03:00.006-05:00

Frankie had his 18 month checkup yesterday. He is once again at 18.1 pounds and is 29 1/2 inches long.

Constipation was the topic of discussion yesterday. His Dr. wants him tested for Hirschsprung's disease. We are going tomorrow at 2 to see his pediatric surgeon at which point they are probably going to set a day and time for a biopsy. Chances are that its just the normal RTS constipation, but because his main issue is just getting it out - its not the normal type of hard stool constipation he will be tested to be cautious!

One part of me is hoping that its not Hirschsprung's but then another part of me is hoping for a cure to his constipation! He is just so miserable, its an endless cycle! He does so good then it hits him, he cant eat because he is feeling so bad. He ends up losing weight and on and on and on. Medicine isn't working anymore, suppositories only work sometimes and we have to resort to enemas. Everytime he is finally able to go he screams in horrible pain! :(

Please say a prayer for Frankie!

Why did I Brag?!

2008-10-05T17:05:00.005-05:00

It seems like everytime I post something positive things just turn around!!

A little more than a week ago Frankie started cutting back on his baby food (Watching his figure?) . Day by day things have gotten worse.. At this point he is eating nothing and drinking almost nothing! During the day he is refusing everything, at night he is doing fair. I GUESS WE ARENT GETTING THE G-TUBE OUT :( He has lost weight since his last weigh in.. He's not doing so good!

Well I typed that up a few days ago and never got a chance to finish!!

I ended up taking him to the ER on Tuesday. It seems his whole tummy was full of gas, not sure what was going on! They gave us some super duper anti-gas medicine for him and also did an enema while he was there (the other end was clogged!) Anyways, he is doing better now! Eating alot better, not as well as before but better thankfully!

Frankie now has 5 teeth!! From 3 to 5 in a few days! Woohoo!!

He also started holding more than one toy and banging them together!

I wasn't the only one excited! Check him out!!

His foot looks huge in this picture, hes actually only a size 2!!

AND he loves to play peek a boo!! I will add a video later, its so cute!!!!!

We got a call about Frankies new stroller (pediatric wheelchair) , it has been approved and should be delivered in the next 2 weeks! So exciting! We are going to have to put insurance on this thing, I can't believe how much they cost!!!!!

Here is a picture of the one he is getting - his has orange trim..

Mikaela's Updates!

Isn't she Beautiful!!

Mikaela is now sick , a bad cold I guess. She is losing her voice , coughing alot and feverish.. Hopefully Frankie won't get sick because it always lasts much longer with him and as with everything else he stops eating and loses weight!

She is loving her new school! She has alot of friends and loves her two teachers! She is having her Stone Soup Dinner and program this Thursday - we can't wait!! This past week she got to see a fireman and firetruck, she was in heaven! We have pictures of her trying on the firemans helmet, I will try to scan them later so I can share!

Mikaela will be 3 in less than a month!! I can't believe it!!

Hanging out at McDonald's

Mikaela and Frankie play together alot now - FINALLY! Its too cute!! I will try to get some pictures and videos taken soon. Its so sweet to watch!

A Dream Come True!

2008-09-20T20:08:00.014-05:00

OUR BIG BOY!!

Something happened, I'm not so sure what it was but Frankie is a different boy!! In the last 24 hours he has been playing with toys, sitting up for very long periods of time and he hasn't really cried once!! Its a miracle!! I've been waiting for this day for soooo long!! My little man played with his toys!! He has never really done this before!!!!! He sat up for an hour last night just watching everyone, watching TV and playing. Not too long ago he could only sit up for a minute or so and would throw himself back violently. Change is in the air, my baby boy is finally growing up!! I actually did stuff today, I watched TV with hardly any interuption for the first time in forever!

Last night he slept for 6 straight hours before waking up to eat, I haven't had a good night of sleep in how long? I hope this keeps on!! He has been sleeping since 6:30, he really wore himself out today. He has never been this active, never in his 18 months of life! Can you tell I'm excited?! :) Its hard having a "baby" for 18 months! Finally a break :)

The day is finally here, things do get better!! What a day!

Playing with his music toy

Still going strong, I can't believe it!

Getting excited, but not as excited as we are!

He's never had this much fun before :)

Loving his keyboard

Playing with his baby doll while reaching for another toy!

Hanging out with his buddy Maggie

So sleepy after a full day of playing!!!!!