Saturday, September 20, 2008

A Dream Come True!


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!!!!!

Friday, September 19, 2008

Hard Work!

Not liking his tummy time too much!

He actually got into this position by himself last night!! Go Frankie Doodle!!!!!

He wants to be just like Mikaela!

Checking out the doggie

He has had enough!

Thanks, but its too late Momma!

My poor poor Baby!!

Happy Frankie!

Thursday, September 18, 2008

On the Charts!!

Frankie's dietician came over yesterday and did monthly measurements.

Weight - 18 lbs 0.5 oz -- he's now in the 0.03 percentile!

Length- 27 and 7/8 inches - ON THE CHART! 0.01 percentile :) :)

He is in the 7.5 percentile for head circumference

Ideal body weight is at 96 percent -- VERY GOOD!

He has grown a whole inch since her last visit! Go Frankie, you are becoming such a big boy!!!!

Saturday, September 13, 2008

18 Months and 18 Pounds!

Frankie is 18 months old today!! As of Friday he is 18.0 pounds. Our little man is growing up and getting big!! He is even starting to wear more 12 month clothes! I was so excited the other day when I put a 6-9 month t-shirt on him and it was tight :) Just to give an idea of his size now, if he were 6 months old he would be in the 50th percentile for weight, if he were 9 months old he would be in the 9th percentile! We haven't had exact measurements done in well over a month, the most accurate calculator online I have found puts our little man in the 0 percentile.


Frankie now has 3 teeth ( 1 top - 2 bottom) and 3 more that will hopefully be through soon!
To date Frankie has had 4 surgeries, 2 MRI's, 3 EGD's and many other tests.

His first surgery was a Nissen Fundoplication, G-Tube and testicle lowered - in February. In May he had his tethered spinal cord released. In June he had ear tubes placed. And just a few weeks ago he had orthopedic surgery to remove his extra little toe. Through all this he has still kept his smile and humor, what a trooper!!

Good news! The only surgery that is left would be having his ASD closed in a few years. We will be going back to his Cardiologist soon and hopefully we will get good news, news that it closed on its own! If not we will keep waiting and hoping!

Also on October 9th Frankie goes into his GI Dr. and will hopefully be getting his G-Tube out ! We only use it for medication and venting at this time and the venting is not nearly as much as before! We won't miss it!!

Poopie Wars! The poopie wars have returned. We had about 1 and a half good weeks but now we are struggling again :( Not fun!!!!!!


Favorite Foods : Mac and Cheese and McDonald's Cheeseburgers with extra ketchup - I should say tiny pieces of Cheeseburger drenched in ketchup

Favorite Dessert : Woolleys Chocolate Frozen Custard, Followed by Snow Cones and Snack cakes, Also a big one would be Gerber Yogurt Melts!

Favorite Song : Twinkle Twinkle Little Star - Sung by big sister Mikaela Breanna

Favorite Place: Incredible Pizza - Carousel , He also loves the outdoors

Favorite Toy : Wish he had one!!

Best Friend : Big Sister Mikaela Breanna!

Favorite Game : I drop it and you pick it up!

Favorite Activity: Spinning!! Loves to spin in the computer chair!

Favorite Therapy : Aquatic!

Favorite TV Show: Intro to JoJo's Cirus and Dora the Explorer

Most annoying habit: Grinding his teeth!!

No more pictures!! Please!

Updates on Therapy--

Frankie goes to Grapevine twice a week for Physical Therapy. Once his foot heals completely we will switch back to once a week PT and once a week Aquatic Therapy. In physical therapy they have been working on getting him in the crawling position-he screams the entire time, its very sad!! They have also been working on getting him into the standing position and a few other things. I can't see him crawling or standing on his own anytime soon but the practice will be good for him!
Also, once his foot heals they are going to look into getting him orthotics he needs the extra support in his weak little legs. He is doing very well with sitting now! As long as he has something to entertain him he will sit forever, once he gets bored - back he flies! He still can't be left alone sitting up, he will hurt himself!!

We also have a Speech Therapist come out to our house twice a week. He has made alot of progress in eating!! He eats almost 3 full jars of Stage two baby food a day! This is a big change from just a few bites a day!! His eating routine is less than desirable though! Here is how it goes... He will take maybe a bite or two to start off.. Then holds his mouth shut TIGHT shaking his head no. He does this until I give him something to hold in his hand, right when he gets something he will open and take a bite. THEN he drops its on the ground and we start all over.. You should see the area around his highchair when hes done, its surrounded with various objects! It gets him eating but its annoying!! :) We still haven't made much progress with getting him to drink out of a cup or straw yet. IN HIS TIME :)

His Occupational Therapist has been out sick for a while, but we are hoping she will start coming back out this week. He is supposed to be seeing her twice a week as well. He definitely needs her!!

Here he is refusing to take another bite!

Hanging out with Big Sister!

Throughout everything, he has not forgotten how to PULL MIKAELA'S HAIR!

Mikaela's 1st day of School!

Mikaela did great! She can't wait to go back!!

Her teachers said she was wonderful, she told them everytime she had to go potty too! I was afraid of accidents since this was something new for her. No need to worry about big girl Mikaela. She even took a nap!! This was very surprising to me!!!! Mikaela doesn't take naps very often, and when she does its a struggle to get her asleep. This school thing is going to be great for her!

Here is a picture of the big girl riding her new bike! Shes a speed racer!!!

Thursday, September 11, 2008

Mikaela Breanna!!

My baby girl started preschool today!!! It was a very hard decision , I always said I would never send my children to either daycare or preschool. She has been begging for the longest time to go to "her school bell". I know, too cute! It all came down to her needing more attention and out of the car. I drive Frankie to therapy in Grapevine on Tuesdays and Thursdays. 45 minutes there and 45 minutes back. Its not fun for an almost 3 year old to be stuck in the car all day!

Mikaela is a very very very smart girl, I think this program is going to be good for her! She goes on Tuesdays and Thursday from 9am - 2pm, its a Mothers Day out program at a Methodist Church. She has been so pumped up about going, she did get a little nervous on the way to school this morning though. I stayed with her for just a few minutes then when it was time for us to leave she cried for about a minute. We stood outside the door to make sure she was ok and she was! She started coloring and was fine. We will see what her teachers say when we pick her up. I'm betting she did great!! She has never been left with anyone but family before so this is very different for her. But, shes Mikaela. Mikaela is a trooper!

I've lost alot of sleep over this day but it turned out well! Not one tear shed here :) I know she will do just fine, its a wonderful program with wonderful teachers! Also, there are only 8 other kids in her class, this is wonderful!!!

The in class pictures didn't turn out too well :( The camera was on the wrong setting!!

Wondering why she was woke up so early this morning!

Multi-tasking, taking a bath and eating breakfast at the same time!

Ready for school!!

Are we there yet??

First day of school!!

Friday, September 5, 2008


RTS Fundraiser -

Please check out this website, the father of an RTS sweetie is running to raise money for the Special Friends Foundation - a Foundation for the families of RTS

The Special Friends Foundation is dedicated to providing information and resources to individuals with RTS and their families. The Foundation provides assistance to cover expenses incurred due to RTS that are not covered by medial insurance or Medicaid. SFF is honored to have worked directly with Dr. Rubinstein. The Special Friends Foundation continues to work with the University Affiliated Cincinnati Center for Development Disorders to support ongoing RTS research and the Louis Garavente Database for RTS research.