It's the Most Wonderful Time of the Year... Already?

So I stick my finger in this socket, Dad? Just kidding... he loves Christmas lights & loved helping Daddy!

What do I do with these bows, Momma?

Decorating Caelin's first Christmas tree! He is hanging his own bulbs!

Decorating the tree with Momma!

In front of our *almost* finished tree but someone was getting tired.

So smiley.

Oh my Cael.

At the Zoo!

With Auntie Sammy in front of the Flamingos!

Snuggling with Auntie Sammy on Thanksgiving.

Family on Thanksgiving!

Santa's Little Helper... except in the presence of Santa.

Caelin with his "Healing Helper," Walter.

Tummy time! Extending those legs & playing with toys!

Check him out! Man he is awesome.

Riding the train at the zoo!

Enjoying his first CAR WASH!

Still hungry after lunch.

LOVES his stocking. He will love it even more once Santa fills it up!

Like father, like son. 

Every time I write a blog post I tell myself the next one is only going to be a couple days after this one because I have to write more frequently and share all the wonderful moments of our life. Also because with the way I am doing it now, it takes me HOURS because I am afraid I am going to miss a detail of utmost importance or an irresistible picture. And knowing how long it will take I further push it down on the “List of Priorities,” which I write and rewrite daily, inevitably procrastinating on ACTUALLY completing many of the tasks, justifying it with the fact that I have an adorable, miraculous and easy to love little warrior who is growing faster than I ever imagined who needs my full, undivided attention every moment he is awake. So here I am once more, apologizing for my procrastination, thanking you for understanding and declaring I will update more frequently. #rant complete.

So now onto the topic of discussion for which you all read this blog: Caelin. Had I posted this right after Thanksgiving, it would have said he seemed to be doing great but we are a little worried that his heart is not working as well as we all hoped it would. But since that post was never written, here is how he stands today: AMAZING, WONDERFUL, FANTASTIC, STRONG, HEALING, HEALTHY & CHUNKY. J He received an echocardiogram yesterday which showed his function is normal, his ventricle wall (which was really thick) is starting to thin and recover, and his Tricuspid Valve regurgitation has minimized. Thank God! All of this news was a breath of fresh air, an incredible relief and reassured us that he is healing the way we ALL HOPED he would. This also helps us feel more strongly that his heart is not causing his persistent isolated liver enzyme elevation. The only non-invasive explanation left, as expressed by the Cardiologist and GI doctor, is it being medication related. So the plan now is to wean him off his Clonidine (used for blood pressure) by 5mcg every 3 days. On December 27^th Cael goes back to Cardiology to get his blood pressure retested and his liver enzymes rechecked and hopefully we will get good (praying for normal) results for both. If his liver enzymes still are not lowering/normalizing, the GI doctor is thinking a liver biopsy might be the next step. Please pray this will not have to happen.

So other than the liver enzymes, Caelin is doing fabulous! He loves to eat pureed foods and is eating between 2-4 ounces a day by mouth! He drinks a little from his sippy cup and bottle each day, too (this is a little more inconsistent). He is also tolerating us condensing his G tube feeds. He now gets 132 mLs in 1 hour and 45 minutes and gets a break of 1 hour and 15 minutes in between doses. We hope to get him down to bolus feeds on the pump and then deliver them by gravity if he can handle it. We also hope this will get him to wanting more by mouth so we can do less by tube… of course, that is in a perfect world.

Physically he continues to improve, as well. He tolerates tummy time better and is playing with toys while lying on his belly. He is trying to pull himself with his arms (like an army crawl) and kicks his legs while doing tummy time. We have been working on positioning him in and out of tummy time, too, and getting him comfortable with putting weight on his feet, hands and arms to try to help him be comfortable in a crawling position. Also, Cael loves his jumper. He stretches out his legs as soon as he sees we are putting him in it and he is using his legs more to jump off the floor. He still is not a huge fan of supporting himself with his legs… for whatever reason, he just does not like to put weight on them… hopefully physical therapy can help him with this. Yes, he FINALLY started physical therapy last week with a wonderful lady named Juliet. She is patient, sweet, understanding and proud of everything he is able to do after all he went through in his first 6 months of life. We are really hoping it will continue to be a positive experience for Caelin and will help him improve even more and help him become mobile. I also contacted Early Steps to try to get at home physical therapy visits for Caelin because he was approved for two half hour visits a week through insurance but ACH PT can only fit him in once a week. Plus we would ideally like for him to be in his home environment for PT in hopes he would be more comfortable and in turn, be more effective and beneficial.

His fine motor and manipulative skills have always been great and they continue to progress. He is shaking his head “no” now… all the time! J He still loves to give high-fives and now he gives kisses! He will smack his lips together and then we lean in for a kiss and go “Muah” and he opens his little mouth to give us kisses. This evening he even took his binky out so Momma could kiss him, and then he put it back in right after kisses. It was utterly adorable. He really likes to smack his lips, blow raspberries, and babble! He has not said “Mama” or “Dada” yet but he has been experimenting with vowel and consonant sounds for a while and often says “Aba” “Ahh” “Esss” “IIII” and a few other ones… we feel Mama or Dada will be coming any moment & we are competing for which actually comes out first! Although developmentally, “Dada” normally comes first because of the way babies can form the sounds, but I think he has the ability to say “Mama” first! =D He is also beginning to understand the concept of “hugging” and is getting better with waving! He never ceases to amaze us and we are so proud of him.

Caelin had a wonderful first Thanksgiving! His Auntie Sammy was in town and we all drove over to Melbourne to enjoy it with family there. We ate delicious food and had a great time (even though the Lions disappointed- as usual) with special people. Caelin did not get to eat any table food but he did get a jar of sweet potatoes and he ate about half of it. This was the first time he really ate that much solid food in one sitting and now it has become his normal. We had fun making his "I'm thankful" cards for the month of November! It was hard to decide each day what to write because he really has so much to be thankful for, as we all do. But above all, he is thankful for LIFE, his, ours, yours, the ability to live and all that that implies. <3

Almost forgot to mention that Caelin got to go to the zoo for the first time last month! We went to the Lowry Park Zoo and he got to see so many astounding animals and he got to ride his very first train! Granted it was just one of the little ones that goes in a small circle but he enjoyed it! It was really great to have his Auntie Sammy in town, too! We love her company and missed her so very much, of course we are back to missing her, but it was nice to have her here for a week! This month we are going to have lots of visitors and we are SUPER EXCITED! Mommy has been feeling sick knowing we are not going to be able to celebrate Christmas up in Michigan with all our family like we normally do. Although we lived in Florida last year, we were able to drive to Michigan for Christmas. This year that is an unrealistic expectation but luckily, we have wonderful family members who will be able to make it our way! First Caelin’s Grandpa will be down. Then we are hoping his Great Papaw will get to meet him for the first time, along with his second cousins and Great Uncle Billy and be reunited with his Great Aunt Sheri and Uncle Tristan! Plus, Momma and Papa Cherf will get to meet Caelin this month! Family and friends are wonderful. Life is wonderful. <3

Last Sunday Caelin met Santa Claus! Mommy and Cael had watched videos of Santa to try to prepare him for their rendezvous but it did not work. At all. He completely skipped the pout face… One look at Santa and he held his breath in preparation of unleashing a record-breaking scream and boy he did not disappoint. But as soon as he was back in Mommy’s arms, everything was copasetic. Christmas just wouldn’t be complete without a picture with Santa Claus (although it may be perfect in Cael’s eyes) and even though he’s not smiling, it is already a priceless classic and we are so grateful that LoveScript Photography made it happen and captured it for us. J

Thank you all so much for loving our son and for continuing to pray for his strength, healing and recovery! This year has brought us infinite love, happiness, and bliss through all the struggles and we are blessed and thankful for every moment of life that we get to enjoy with our son.