Tuesday, December 22, 2009

tis the season to be jolly...

It has been a busy few weeks getting ready for the holidays! It is going to be a quiet one at home for the most part, but it is sure to be a memorable one regardless! We are fully aware of how lucky we are to be able to celebrate as a family this year. We have experienced many miracles this past year that have gotten us where we are today.

In Charlie news, he is doing fantastically well! He had his "9 month" check up a couple weeks ago at the pediatrician's. While I was not completely thrilled with how our pediatrician handled our appointment, he did not seem to have any problems with Charlie and his progress thus far! He gained a little more weight and was up to 20 pounds 6 ounces and measured in at 30 inches - though he was throwing such a fit as she tried to measure him, that I am not sure how she was able to get an accurate length! Unfortunately, as a result of our MANY trips to the pediatrician's for flu shots (4 total!) and now synagis shots, Charlie has learned to fear everyone there. He screams and cries as soon as anyone touches him, whether they are actually doing anything to hurt him or not. It is rather upsetting for me to see him so upset, but obviously the appointments are a necessity!

Charlie's walking continues to get better and better. He loves being mobile and no longer likes to be held still! The sippy cup still does not go over very well. He really wants nothing to do with it. As for finger foods, he LOVES his puffs! We have managed to teach him sign language for "more" but he has come to equate that sign with his puffs and asks for his puffs by making the sign. He really does not enjoy anything else that we have given him for finger foods - canned fruit, toast, cooked veggies, pasta. He doesn't seem to understand what to do with them and fights you when you try to put it in his mouth for him. He will learn with time though! Feedings are going fairly well. He has been taking his bottles well every day. He still has good and bad days when it comes to his food though.

He is starting to connect words with objects now. There are a couple toys that he will go and get when you ask them where they are (his sock monkey ornament from Dee and his lion rattle). Some days it seems like he knows "dada" and connects it with Vince - but then there are days like yesterday when he said dada to everything and everyone. He says something that sounds like "kitty" when he sees the cats sometimes. And with the influx of new toys he has received, he has started almost saying "ball" from time to time.

Charlie seems to be a bit mind boggled by everything having to do with the holidays so far! From chopping down the tree and putting it in our house, to gift wrapping and new toys left and right - he is loving every minute overall! Dee even made it possible for Charlie to spend a couple minutes sitting on Santa's lap! She arranged it for us to "crash" the NICU family Christmas breakfast and be first in line to sit on Santa's lap. He seemed a little overwhelmed and only lasted a few seconds before crying out to be taken away from Santa. Dee was happy to console him afterwards though! Grandma and Grandpa D'Angelo have headed to Florida for the holidays, so we celebrated with them a couple weeks ago. Charlie made out with bunches of great new toys and a toy box to store them all in! Now, if we could just teach him to pick up after himself! :-)

Winter has been far more mild around here than is typical, but we have made it out to experience the snow for a couple minutes here and there. Charlie likes to look at it and seems a bit perplexed by it. Once he touches it and gets his hand cold though, he is no longer happy to be out in it. Thinking about him toddling around in it later this season or next year is just amazing - so much to look forward to!

Charlie is his blue sweatsuit that used to belong to daddy!

"I don't know about this guys!!"

Christmas with Grandma and Grandpa D'Angelo

"Choo Choo! Coming through!"
Riding around on his new train from the Hinamans

"I love my new lion from Aunt Sheri!"
P.S. I really can't ride it by myself yet - I just like to pretend!

"Here's my monkey from Aunt Dee!"
(This is the rocking chair my PopPophad made for
me on my first Christmas many many years ago!)

Big Smiles!

Driving Mr Charlie

Showing our SU pride before Daddy headed
out to take his basketball team to the game!

Sunday, December 20, 2009

sad news

We are so sad to report that Briana lost her fight with CDH this morning. We know that they had an amazing team of nurses and doctors and specialists on their side at Crouse, but God had bigger and better plans for Briana with him. We have unfortunately been witness to too many babies being dealt this fate in the past year and we have cried for them all, but this one hits particularly close to home. Angela and Jim came to us over the summer looking for support and guidance and were inspired by Charlie and his brave journey. I wish we could have given them more than just hope. We were so blessed to have had them brought into our lives. Please continue to pray for them. They are amazing people and have been dealt what no parent should ever have to face.

Monday, December 14, 2009

Walking on Sunshine

Our little guy is not so little any more...

Friday, December 4, 2009

Double Digits!

Our little Charlie is 10 months old today! Its hard to believe! Where has the time gone?! He is doing amazingly well and is such a little man! He gets better and better at things every day.

Our Thanksgiving was very nice - an enjoyable time spent with family and friends. Even though it was an "off" day for his schedule, he was still a very happy baby all day and evening. He loves having people around to show off for!

We were finally approved for our Synagis shots to protect him against RSV this winter. Thankfully they approved us for 5 injections, so we should be good for the entire season. We went on Monday to get the first injection. Because the medication is based on weight, he required more medicine that could be given in one shot. (He weighed in at 20 pounds even!) So the poor baby needed an injection in each leg. And to make it worse, after four flu shots in less than two months, he has learned to be afraid and started crying hysterically as soon as I laid him down. Luckily daddy will be able to come with us next time!

After his appointment Monday morning we went over to visit with Dee and she watched Charlie for a few hours while I did some holiday and grocery shopping. When I returned she had given him a sock monkey ornament off her Christmas tree. He loves it! When you ask him where his monkey is, he looks around until he finds it and goes and picks it up. Such a smart little boy!!

He has been moving around more and more lately too. He cruises along the couch and between his toys with no problem. Earlier this week he started taking a few shaky steps on his own. He gets better and better at it every day.

He has also progressed from making random noises to definitely trying to communicate more logically now. He is saying something, we just can't figure it out. He keeps saying what sounds like "hiya" over and over. And just now as I was pointing at his hand and saying no as he was trying to grab the laptop, he started pointing at me and yelling something back. We are in trouble!

We are going to cut down our Christmas tree tomorrow, so we are sure that he will be in awe of all that goes along with that! We are really excited for this holiday season and everything just seems that much sweeter and more special this year. We know how blessed we are and we truly appreciate every facet of each experience we have.

We do think often of all the families missing their sweet babies and how hard this time of the year must be for them. Know that you are always in our thoughts and prayers. And please, continue to pray for Baby Briana and the Hayes family. Briana was born at Crouse early Wednesday morning and was put on ECMO a few hours later. She had a very stable day yesterday and is in very good hands, but still needs all the prayers we can spare.

Remember to count your blessings and enjoy the little things this time of the year brings! Don't get caught up in all the chaos and stress! Its just not worth it!

"Come on guys! Lets eat!"

"I'm ready for some turkey!!"

Eman and Charlie happened to bring the same pajamas
to Nana's house on Thanksgiving! Kodak moment!

"I gotcha Chester!"

Tuesday, December 1, 2009

Another CDH Baby on the Way!

Please say a prayer for the Hayes family as they are admitted to Crouse Hospital tonight and prepare for their induction. Hopefully Briana Emily will come into this world as easily and stress free as possible!

Angela and Jim contacted us after seeing our story on the news in July for the Letters for CDH project. They had just received their CDH diagnosis and were happy to find a personal connection with CDH close by. They have had a special place in our hearts since then as we know only too well what they are going through right now. They are in the best of hands though!