Merry Christmas & Happy New Year!

Splashing in the bath

Sitting forward in the tub

Helping Mommy make Christmas cookies... wishing he could try the batter! Sorry bug!

Looking at Christmas lights

Cael & Mommy

Cael & Daddy 

Cael & Grandpa

Little stud.

Merry Christmas with Mickey!

The last two weeks of the year were fantastic! We had so much fun together enjoying the simple joys of life with a visit to the park, snuggles and play time in our home, going to see Christmas light displays and taking a trip to the Gulf. Caelin continues to grow and progress each day, never ceasing to amaze us. He absolutely loves to actively give hugs, kisses, and high fives, to babble, and to play peek-a-boo (he insists on being the peek-a-booer and likes for us to ask, "Where's Cael?" He will hide then reveal his face and we exclaim, "Peek-a-boo!" Simply loves it! He is also teething again... His two bottom teeth appear to be completely in and we suspect his bottom eye-teeth and/or his upper front teeth to be next.

Caelin’s Physical Therapist, Juliet, is now in the office Mondays & Thursdays so Cael finally sees her twice a week instead of just once. Although he has had PT for only a few weeks, the improvement in his skills are remarkable. He is so confident and fluent in his movements, puts weight on his feet while in and out of his jumper, is trying to push himself up while lying on his stomach and is rolling over on his own! Not only does he reach far in front of him and recover well, but he also reaches from side to side while keeping his balance and recovering. His growing confidence has also got him sitting up in the bath on his own. We NEVER let our hands more than a few inches from his body because he sometimes gets lazy in a split second and his little bum is sometimes slippery and the water can just be too dangerous. We are working with him to put more weight on his legs while being held and supported and to put more weight on his arms for longer periods of time while lying on his stomach. In the last blog, I mentioned how Caelin had a Preliminary evaulauation for Early Steps planned but it was rescheduled for this Wednesday, January 2^nd. We were not too stressed about it though because he has been so successful with his twice-weekly PT visits with the most lovely Juliet.

Caelin’s Cardiology follow-up visit last Thursday went well. He tolerated the Clonidine wean and experienced no symptoms of withdrawal. His sleep schedule changed a little bit but he still sleeps through the night for 11-12 hours straight. As a result of the continued Actigall and discontinued Clonidine, Caelin’s liver enzymes lowered and seem to be on the trend to normalize; his AST and ALT are finally both below 200! Dr. Stapleton has attributed his elevated enzymes to a reaction from the Clonidine & hopefully this is the case. As we agreed during the visit, Clonidine is a medication that will stay in the past. We have had enough excitement with that blasted medication. Cael does need to get these labs redrawn at the end of January to ensure they are normalizing and not going back up. If his liver continues to act up, a liver biopsy is the next step. We are praying and hoping this will not be necessary. He also had a GI appointment today and Dr. Wilsey acknowledged Caelin’s progress, pink color & improved lab numbers. This month Caelin got caught up on his immunizations finally, too! So since his Cardiology, GI, and Pediatrician visits all went well, he does not have another doctor’s appointment until MARCH! We cannot believe he is scheduled to go nearly THREE WHOLE MONTHS WITHOUT A DOCTOR’S VISIT… key word scheduled but hopefully he behaves and stays healthy… he will be eating a lot of apples, that’s for sure! ;)

Speaking of eating, he had a little setback with getting sick and we had to start condensing his feeds all over again. Tomorrow we will be starting a new schedule though and we are hoping his little body will tolerate it. We have been giving him pureed food 2-3 times a day but with our busy schedule, this was kind of inconsistent. So now that he is feeling better and is tolerating feeds well, it has become a priority to get him on a more “normal baby” feeding schedule and get him to like solid foods. He has gone through phases where he LOVES mum-mums and then the next day he gags on them and refuses to eat them. Well he is in the gagging phase and will not let any type of solid food in his mouth, only purees. So we are hoping this new schedule will help him have more of a hunger cycle and have consistent positive experiences with eating which will help him feel empowered and confident to eat mum-mums, puffs, cheerios & eventually soft small bites of cooked vegetables, fruits, pastas, etc. *Hopefully* J

Last week Caelin’s Grandpa was in town, which was wonderful. It was so great to watch him and Caelin play, interact and love on each other.  This was the first time they got to be together since Caelin was first born and they had such a blast together… it’s times like these that really make us regret not living closer. Caelin absolutely loves everyone who visits him. He is the most inquisitive and social little boy I have ever known; he is so interested in people and how everything in life works. I truly do wish he could be around family more often and play with all his little cousins. He has yet to actually interact with a baby his age, I feel like he is missing out. :/ Hopefully 2013 will be the year that Caelin gets to meet all of his awesome cousins and other family members who could not come down to FL in 2012.

We did have the most beautiful end to 2012. I love that the year ends with the most wonderful holiday of the year- Christmas! This was (obviously) Cael’s first Christmas and it was absolutely perfect. The day started with two excited parents who awoke way before the baby in anticipation of the days events… unwrapping presents, playing with new toys, taking pictures, eating delicious food, taking a trip to the beach and laughing, all while A Christmas Story is playing in the background. Caelin was overwhelmed with the process of unwrapping his truckload of presents and did it in two segments. He wasn’t really sure of what to do with the first round of presents but always smiled after the next toy was revealed. During the second round he understood what to do and really enjoyed pulling off the wrapping paper! He got so many great gifts from lots of people and we are very thankful for that! THANK YOU! So the day ended with an exhausted but very happy baby who discovered how to roll over on his own and two parents who felt blessed more than ever to have had such a beautiful first Christmas with our healthy, happy, handsome & strong son in our home! We did miss seeing all of our family members, though.

Before reflecting upon 2012, I must remind you there is no such thing as a bad year… only bad moments. Trust me, it would not be a stretch to say 2012 had more bad moments than any other year but it was those moments which made us appreciate the good, great, and best ones. We learned how fragile life is but also how truly magical and marvelous it is. Many believe it was a bad year for us and that 2013 can only be an improvement when that is simply not the case. As with any year it had its strengths, weaknesses, struggles and triumphs but above everything, it was the year in which our first son was born and beat all the odds set against him. He survived life after birth when many were skeptical. He taught us more about life than we learned in our previous 23 years. So you see, it is truly difficult to say goodbye to 2012, as it was full of many of the most wonderful moments of our lives... 2012 will always hold a special place in our hearts and in our memory.

 

So as we go forward into a new year, today is the day we overlook a year of heartache, fear, unknown, disappointment, and discouragement. We put behind us the empty words, broken promises and egocentric acts of those whom we once counted on. We forget the mistakes, accidents, and regrets of others and ours. Today, we turn all of these life experiences into lessons and moments from which we learn and grow.

And today we remember. We remember a year where our dreams became realities with the birth of our son, Caelin. His birth forever changed our lives as he became the center of our universe and we welcomed this change with arms wide open. We remember a year of strength, courage, resilience, determination and support. Our gratitude surmounts upon recalling the support from those who have been in similar shoes and from those who never want to know what our soles feel like. We cherish the ones who have helped us spiritually, mentally, emotionally, physically, financially and every other way imaginable. We look back on a year full of tremendous happiness, substantial milestones, blessings, and MIRACLES.

And today we wish for a year of optimism, continued altruistic support, health, and progress. We pray and vow to make 2013 a year full of LIFE where we continue to embrace the simple days at home, the special days out on the town and everything in-between. 2013 may hold no financial progress for our family but let there be physical, spiritual, and familial progress. Allow our son continue to learn, grow, and love as a healthy infant entering toddlerhood. And let our family grow closer together and closer to God.

Cael checking out his new chair from Santa! 

Loves his new toys!

OooOoOooh!

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HAPPY NEW YEAR to all our loved ones! Thank you for making 2012 the most memorable year of our lives! We look forward to making memories with you in 2013.