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!