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.

All I Want For Christmas & Evermore

I love his face.

Waiting so patiently at his cardiology appointment.

Self-photo. He takes good shots of himself!

Sleepy boy snuggling with the blankie from his cousin made from Great Nana's sweatshirts.

Just got done creating a special gift for a special someone!

Time to eat. I just love this picture.

Eating the tracking information for Grandma's present.

I spy with my little eye, a baby. Yes, that is all of our clean laundry that was at the bottom of the priority list for weeks.

Eating soda crackers with Daddy.

Caelin was supposed to be napping but apparently he thought he should make better use of his alone time.

First time in a cart without his car seat. Thank God for Lysol wipes, hand sanitizer & blankets.

Momma & Cael shared a baguette on our date night to Panera.

Cutest date ever, although not the most loyal. He had the audacity to flirt with other women while on our date.

Check out those toes on the ground! He's jumping like a big boy!

He's reaching so far and recovering so well! His comfort and confidence level is increasing with his strength!

Trying to grab Mommy's phone. See the snot coming out of his nostril... poor sick little bud.

Check out the drool under that double chin. From babbling and blowing raspberries while avoiding a nap! :)

Tummy time!

Mastered sitting... when he does not want to be lazy. He now finds it entertaining to throw himself backward purposely.

Lounging in his bath, holding his hands and waiting to be pampered.

So here is that post I promised I would write sooner than the trend of how I have been writing! J However, there is not much activity to share about our little warrior because we have been trying to keep life as uneventful as possible right now as he is sick. =( Yes, as many of you know, Caelin has his very first cold. Last Wednesday he threw up in the evening but we thought he just needed to be vented. Thursday he was fine and then he threw up again Friday and Saturday. After Saturday’s double dose of vomiting, we became suspicious that it was more than just venting related and worried it was his liver enzymes again. I called GI first thing Monday morning and left a message for a nurse. She called me back in the afternoon and after speaking with her, we decided to put him on Pedialyte for 24 hours then transition him back to formula as tolerated and if the vomiting persisted to come in to have his blood drawn a week early to check his enzymes. Well, that night he developed a cough and sneeze. Tuesday morning he woke up with a stuffy nose, constant sneezing, and a decent cough. Thank God he has had no fever and his temperament hasn’t been too concerning, especially because he is still not allowed to have Tylenol because of his liver.  His color has been normal (indicating good blood oxygenation) and pulses have been great so we feel his heart is doing well through this virus battle. If we notice any changes at all, we will most definitely head to the hospital but we are hoping Cael will not get worse. He goes through quick spurts of being happy and playful to cuddly and sensitive but he is still overall our resilient and eager warrior. With his cold he has not been much into eating solid foods but he felt better today and ate about 2 ounces of food. We are hoping and praying this is just a quick virus and that it does not feel the need to linger around our house. We always have hand sanitizer in every room of our house, are frequent hand washers, and are big proponents of Lysol spray and wipes so hopefully this will help abolish the wrath of the virus.

Tomorrow Caelin has his weekly physical therapy visit and we are hoping it is more beneficial and productive than last week’s. He was not in the mood to play with Juliet or Mommy during the visit and Mommy suspected he was not feeling well, as he was not himself. He was not happy with anything we tried, so I guess tomorrow’s visit couldn’t be much worse. We just really want Caelin to get the most possible out of these visits but I guess even though the visit itself did not go well, Juliet did show Mommy a new holding position to try at home to get Caelin to bear weight on his legs and it IS helping! So we are still thankful and appreciative for the help and advice from the specialist. Tomorrow afternoon Caelin has a preliminary evaluation from a representative from the Early Steps program, which helps children from birth to 3 years who have a developmental delay. We are really hoping he qualifies for this program as they do at home therapy! We would no longer have to take Caelin out to the hospital for his physical therapy; the specialist would come to him at our home, his natural environment. This program focuses on the whole child so this same specialist would be able to help him in other areas of development here and there, if needed. This program would be so great for our little warrior and our family!

One thing I forgot to mention in the last post... Caelin's cardiologist is predicting his next heart surgery will be in mid to late summer 2014. Caelin will be close to 2 1/2 years at this time and his heart will most likely be ready for the physiology of the Fontan. Although we want Caelin's heart to be relieved of extra work and pump as efficiently as possible, we are not looking forward to him having another open-heart surgery... especially as a (assumingly so) mischievous and inquisitive toddler. 

Otherwise, there is not too much going on- just trying to get our little guy healthy and keep ourselves healthy, too. We are most definitely ready for Christmas and for visits from family! Decorations are hung, cards are mailed and presents are wrapped and nestled under the tree. I look forward to Caelin unwrapping his gifts Christmas morning! Our video camera is ready to record! Our first Christmas as a family of three is only twelve days away now (shall I break into song here?) … This time is so delightful and enchanting. There is truly something magical about watching my child’s face brighten with wide eyes and a big two-teeth smile upon seeing a green tree start glowing with fluorescent rainbow Christmas lights topped with a color-changing star with just the flip of a switch… No matter how many times he has seen it, his reaction continues to be that of such genuine awe. And no matter how many times I see his reaction, the same complete feeling overwhelms me and I am reminded that everything I will ever need, I have. Each and every child is a blessing but Caelin is more of a miraculous blessing than we ever imagined any child could be. Until you have a child, you can only speculate the impact he/she will have on your life. Until you have a child with a major birth defect and witness moments first hand where angels carry him back to you from Heaven’s gate on multiple occasions, speculation of the impact is impossible. I thank God every day for Caelin and his triumphs over what many would call the impossible and for the people who aided him in his victories. Perhaps it is cliché, but enjoy and embrace every moment you have with all your loved ones… the good, happy, sad, frustrating times and everything in between and when you are given the opportunity to forgive and be forgiven, clinch it.

Thank you for your support. Thank you for your love. Thank you for your prayers. Thank you for being a part of our lives in so many ways! 

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.