Saturday, December 29, 2012

Tummy Update

Well, we haven't even really talked about Frankie's tummy too much recently! It has been on the back burner for so long now! There isn't any new info that needs to be said but I figured we would post some pictures of his tummy so that everyone can see how it has progressed. When I took him to the surgeons a couple months ago, Dr. Keller said that he is still far too small to start any repairs. I am taking him back in February, just for another check up, and I'm sure they will say the same thing. He said he wouldn't consider a repair until he is AT LEAST two. I can see it being longer just because Frankie is so small. But, who knows! As normal, we are on Frankie time! And we have to do what is best for him! Shoving everything back in when he's not ready is the worst thing we can do for him. I don't want him to be hospitalized for a long time again and come across more complications. Anyhow... Here's some pictures. Ps- Yes, I was slacking at the crack of dawn this morning and my cloth diapers were in the other room so I grabbed a disposable!
 Completely unwrapped, hanging down because he's standing up.

 Wrapped in Xeroform and then gauze.

Complete! Last step is to compression wrap with an Ace Bandage. 

We are so thankful that Frankie has been doing so incredibly well! And that his O has reduced in size! He is SUCH a miracle! And we are thankful for all of you each and everyday for praying for him, continuously! Much love!

Thursday, December 20, 2012

Food, food, food!

If only Frankie loved it as much as I did! Hopefully someday soon!

Over the last several days, Frankie has taken to eating a little better. Well, for him, it's a huge step. I'm very hopeful that this is a step in the right direction! About a month before his asd repair, I took Frankie to Children's for a feeding evaluation and was not happy with the outcome. It just wasn't what I had anticipated and I was not impressed with the staff. I must say, I was pretty heart broken because we do everything through Children's and I was pretty bummed that this is one thing I'd have to find elsewhere.

Today, I took Frankie to Cardinal Glennon (another children's hospital in Stl). I felt like I was cheating on Children's, but hey! You gotta do what you gotta do! I was super happy with how things went today! The ladies were so very nice and offered some great suggestions and also reinforced all the great things we already do for Frankie! It's so nice to hear sometimes that you are doing this right! This is going to be a slow moving process for Frankie but he is finally showing signs of interest and this is a window of opportunity that we have been waiting for and we HAVE to take advantage of it! We made a couple small changes to Frankie's feeding schedule. I'm going to implement them daily and we have a follow up appointment on Jan. 3rd to check his weight and see how this is working for him and make adjustments as needed.

Tonight, I sent out an email to Frankie's wonderful First Steps team. These are the gals that come out to the house and help with Frankie. Ellen is Frankie's occupational therapist who comes weekly. Angela is Frankie's physical therapist who comes twice a month and Nancy is Frankie's dietitian who comes monthly but I speak to frequently through email, text, phone. In the email I addressed how Frankie has been lately (his Ot has seen it and agrees!) and my concern. My concern being the amount of time we see Ellen. Since we are in the "now or never" stage, I think it is best that Frankie gets bumped up to twice a week with Ellen until he gets the hang of things. Once I get an initial email reply, I will also suggest reducing pt down once a month since Frankie is doing so well. That may not happen until March but I think his ot visits need to be increased asap.

Overall, I was impressed with Cardinal Glennon's feeding team today and I'm praying HARD that Frankie is making his first big steps to oral eating! He's taken to a few foods recently:
-club cracker
-peanut butter
-thin sliced turkey

He eats these in small amounts but they are amounts!

Thanks for all the positive thoughts, love, support and prayers! FRANKIE CAN DO THIS! We can't wait for the day that we say GOODBYE to the ng tube!

Tuesday, December 18, 2012

15 month update!

Frankie DiFranco is 15 months old! I can not believe it! He has changed so much since he turned 1! What's new with Frankie... Let me name a few things:
-He's looking much more like a little toddler boy! It's freaking me out!
-The toddler attitude is in full affect! And, I wouldn't have it any other way. It's part of development and there are some hilarious moments that come pouring out of this bambino now! I can't get enough of him!
-HE'S WALKING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (He actually accomplished this at 14 months to be exact!)
-He's starting to stand, without help, in the middle of the floor (he did it twice now today!).
-His vocab is expanding rapidly! The kid says a ton! Here are a couple of my favorites:
     -I did it!
     -Love you!
-He has taken to a few books that I must read over and over and over and over and over and over. God love him. He's lucky I'm all about reading to kids. I will seriously sit here and read it as many times as he would like. It's so good for him! Favorite books:
     -Barnyard Dance by Sandra Boynton
     -One, Two, Three by Sandra Boynton (She's one of our favorite authors. She rocks.)
     -Tractor, a Touch and Feel Book
     -Elmo:Balls! (newest obsession)
-He's become more affectionate and lovely/cuddly. Really likes to give us kisses and hugs.
-He's sleeping with his little booty popped up in the air! Which means he's on his belly. Super cool for an O kid.
-He's more interested in "snacks" and "num nums". The last two days especially. He's liking to try more and more new things where he would typically stick with plain and or Honey Nut Cheerios. Hoping we are making a turn here!
-Teeth... HELLO molars! Frankie has 10 teeth now! That's right! 10! Now we just have to get him to use them more.... we are getting there!
-Singing songs! Oh yes! And doing the hand motions! Some favorites:
     -Patty Cake
     -Itsy Bitsy Spider
     -Wheels on the Bus
-Touching the Christmas tree while shaking his head and saying, "No, no, no". He actually gets himself in trouble a lot because he says "No, no" as he is going to do it. Like pull the books off the shelf. :)
-Whenever he wants to see the Christmas lights or he does see them he says, "Ights, ights!" The joy on his face is priceless!
-I love this one! He says "Co, Co" for uncle Cody. ADORABLE!
-Whenever he is stuck or in a situation he doesn't like or it's not going his way he says "Tuck!" to get my attention. I've taught him I don't respond to the whining. Mama's ears can't handle it. But, when you use your words, I'll be there in a split second!
-He is hiding behind walls to play hide and seek! Not just us hiding anymore, HE is hiding now, too! And he loves it!
-This will melt your heart.... Reaching up to you when he wants to be picked up.... How could you EVER say no?! Oh, that's right I don't (I may regret this one day but until then, I'm soaking it up!) Those big, blue, sweet eyes! Ugh... Gotta pick that baby up!
-If you aren't paying attention to Frankie and he wants it, lets start counting how many times he will say "Hi!" and bat those pretty eyes at you! He is so good at salutations I tell ya!

15 month pediatrician appointment today:
Dr. Terrill is impressed with Frankie! She said he looks fantastic! :) This makes me oh-so very happy! She loves that he is walking around and how well he is doing it! He is in the 30th percentile for height! CAN YOU BELIEVE IT?!  We hit the charts on something! Woohooo! His weight on the other hand is low. 18lbs 5oz. But, his height has continuously increased which is what is best! This means that he is getting enough calories to grow and isn't malnourished. She said children who are, do not grow in length. His head size is smaller too, but it matches his body! We don't want a little baby with a big old head! How funny would that be?! Haha! He's just perfect! It's hard to fatten him because he's so busy but I will at least work more towards some what of a gain in the next month-three months when we see her again. Frankie has two 15 month shots to get and his second flu shot. I will be getting him those within the next 2 weeks. His lungs and heart sounded great today, too. It was such a nice appointment! To go, do the normal and leave with no extra instructions and complications was really nice!

Next appointments: Thursday 12-20-12 we are going to Cardinal Glennon (So weird not to be at Children's but we need to try this) and are getting a feeding evaluation from their feeding team there. It will be interesting and I will keep everyone posted.

Umm... at some point in the next couple months we will see surgery again to check up on the the old hydrocele in the testicle. But, I think that's it! Until his 18 month appointment with the pediatrician! Praying all stays as well as it has been! We have been so blessed to be going down a good road for awhile! This will be our FIRST Christmas at home and we are beyong excited! I will definitely have a post after that for sure and after the feed eval on Thursday.
Thank you all for your everyday support, love and prayers! They mean everything to us!

Gettin' down on that french fry! Hell yes!
Pudding, peanut butter and cracker, OH MY! :) So much fun!
Yup, that's my son!