A Mended Heart is a Special Heart!

Cute face.

Momma & Cael @ the park.

Someone found the toilet paper roll... trouble.

Lunch time cutie!

First Valentine's Day!

Help support Cael on his heartwalk! (See Below) 

Great Papaw & Cael

Our 11 month old! 

Cool dude in his Harley outfit, shades, beanie & on his ride!

Loves his new walker!

East Coast Family!

Great Aunt Sheri & Cael

Sleeping baby on the beach! <3

Uncle Tristan & Cael

Cael and Piper!

Beach Baby & his football!

BUBBLES!

One month. Over four weeks since the last blog update. I am a slacker, so much so that I had to go back and reread the last blog to remind myself what I needed to follow up on and what exciting new things I get to share! So here is what Mr. Cael has been up to in the month of February and the beginning of March:

We had family visit! Caelin got to meet his Great Papaw for the first time ever and he was also reacquainted with his Uncle Tristan and Great Aunt Sheri. Caelin loved the company! He was not afraid or shy with them, he went right to them to be held and to cuddle and he loved playing games with them, like peek-a-boo and pat a cake. He also loved his Christmas in February! Originally, their trip down was supposed to be in December but Papaw’s dog had some complications after being neutered so they postponed the trip a few weeks. I do not think Cael minded their coming later because he got to have a second Christmas! And boy, did he love opening all his presents! He tore through the paper so well, much better than on Christmas day. While they were down here, we also went to the Pier in St. Petersburg, John’s Pass and to Sand Key Beach. We weren’t sure how Caelin would do with a day on the beach but he did WONDERFUL! Great Aunt Sheri rented a cabana and so Cael got to be in his pack and play under the shade of the cabana, feel the ocean breeze, hear the waves crashing on the shore and watch all the seagulls. He even drank 70 mLs from his bottle this day! So perhaps the trick to getting him to drink is taking him to the ocean. Unfortunately our family had to head back North and resume life’s responsibilities but we are so grateful for the week they spent down here with us! We also got to see some family who are on the East Coast and that was really nice, too!

Caelin also had his first (play) date with a fellow heart warrior, Piper. She has HLHS like Cael and was in CVICU at ACH with him. The similarities between the two of them is uncanny… even in the hospital the nurses said they were practically spitting images of the other with regards to their health, history and behavior and always referred to them as conspiring together as boyfriend and girlfriend. ;) We met Piper and her family at Burrito Border in St. Pete before Piper’s GI appointment and they were so cute together! Once they locked eyes, they just started at each other. We parked their strollers across from one another and they were trying to play footsie. Then we brought them up in our laps and sat them next to each other. Cael was shy and turned away smiling while Piper was smiling and talking to him. We are really excited about their next play date and getting them to actually play on the floor together!

Caelin now has SIX teeth! So drooling and chewing are his favorite things to do right now. He chews on anything and everything he can get his hands on. In fact, the other day he was giving Daddy’s hands kisses when he very sweetly chomped down on Daddy’s skin leaving faint teeth marks. But Caelin’s front top right tooth is coming in yellow so we wanted to seek treatment right away. Finding a dentist was not as straightforward as one would think because of his heart condition. If he has to have an oral procedure done that requires anesthesia, it must be performed at All Children’s; which means the dentist must have access to and privileges at the hospital. Thank goodness he has THE MOST WONDERFUL nursing staff at the heart institute who got us into contact with a highly recommended dentist with the required privileges. We are so blessed to have their support and guidance every step of the way when it comes to Caelin’s health. They never make us feel incompetent, inadequate or overprotective/paranoid about Caelin, even when we make ourselves feel this way (… it’s not often but it does happen). Despite our superhero disguises, we really are just humans. ;) So Caelin went to his very first dentist visit on Friday, March 1, 2013. The entire staff was welcoming, friendly and smitten by Cael. They do not typically accept patients under 3 so I think an adorable 11 month old as a patient was a treat for them. The dentist office is decorated in trains. It has an enclosed track mounted on the ceiling where electric trains go around. It has a free train for kids to ride (like the ones at Chuck E Cheese and similar to the penny ride horse at Meijer). Plus, Mickey Mouse Clubhouse was on the big screen TV, so what more could a kid ask for?! His dentist was thorough, quick, compassionate and interested in his history. After examination, she concluded he has enamel hypoplasia on his front, top right tooth; this means the enamel did not form all the way on this tooth. There is no direct cause for it (could have been a number of things- heart surgery, antibiotics, anesthesia, in eutero, etc) and it is common in even normal healthy children.  She said it is uncommon for only one tooth to be effected, as both front teeth usually have the same diagnosis but his adjacent tooth seems to be normal. She said his whole tooth may not have enamel hypoplasia but we won’t know until his whole tooth grows in. She also said some of his other teeth may have it, but so far it is just the one! J This was good news. We were worried it was coming in decayed or infected but it’s just a little softer than the rest. So we need to brush his teeth twice daily to help protect the tooth and keep it healthy.

Right now, he has a frustrating and finicky appetite. But I am incredibly proud to say that throughout the whole month of February he tolerated bolus feeds during the day. For the average parent you never think about it, but for the parent of a G-tube baby it is so nice to have him not be attached to that darn pump! It really is a pain to lug around and my shins are finally free of bruises for the first time since August 25^th. As for oral feeds, he drinks a little each day, three times a day. The most formula has ever taken by mouth is 70 mLs. During the day we go back and forth between a bottle & sippy cup. We use the bottle to measure the amount of his oral feeding & bolus and one day he reached for the bottle and chugged it. So if that’s what he wants, that’s what he gets because if there is one thing we have learned since he has been born it is that HE calls the shots. So Cael is still pretty inconsistent and unpredictable with feeding but he at least takes SOME formula and SOME pureed foods every day. And that is what is important at this time. He also loves Mum Mums, Puffs, Crunchies, Saltine crackers and non-dairy yogurt melts.

His physical abilities increase daily. Everything I wrote in the last post regarding his mastered physical skills holds true, with increased confidence, strength, endurance and determination. So he can do everything he could a few weeks ago but requires less effort, less support and fewer breaks. He requires less help getting into a sit position, attempts to go on all fours, claps his hands on command and pulls himself up completely on his own with his pull-up bar in his bedroom. Just this morning he was standing on the floor holding onto his Mickey chair when he attempted to move to the loveseat. He reached his left hand first then moved his right hand onto the loveseat but needed some assistant with his legs… it was awesome! He is just full of surprises! He wants to stand… All. The. Time. Although he is learning his body will not allow him to do this. I tell him his heart gives him some limitations that he must abide by but he refuses to believe it as he moans, groans, and shrieks at me when I force him to lie down for a break. And I tell Sean that his brain is working too fast for his body. His frustration with his physical limits is frequent; he wants to climb off our lap onto the floor, he wants to crawl (he is very close and can do it well with help), he wants to reach for objects that are far away, etc. He is just physically is not there yet but we know it is coming soon as he is mentally ready. THIS KID NEVER STOPS AMAZING US.

He is also big on communication now. He is constantly reaching and pointing to toys and objects he desires, often pairing noises with those objects. He shakes his head “no” in response to questions and this is getting more accurate. He is slightly beginning to nod “yes” but when he means “yes” he more often verbally says “Yah” and claps. He also pairs waving with saying, “HI.” Wednesday he started saying, “Key” while watching Mickey Mouse Clubhouse and playing with his Safari Mickey and Singing Mickey. He tries to say “Dog” while pointing to Audee or Louee and he is trying to say “Mom” but it just comes out as “Ahhh” or he says “Dada.”

Caelin has a cardiology appointment coming up on March 12^th so we will see how his heart is doing then. He also has his one-year check up at his new pediatrician office on the 21^st. It is so hard to believe he will be one year old in 12 days!!!! Good gracious, where does the time go? There were so many moments where time seemed to stand still, now that Caelin is healthy and home time just flies by. Even though we wish it wasn’t going to fast, we do love and enjoy every moment. If you would like to join in our celebration of Caelin’s birthday and are far away, we would love for you to send a card! His first birthday is such a huge milestone and so many people have helped Caelin get to this point and we would love for you to send him a card with birthday wishes and a little blurb about yourselves. I am going to be creating a birthday card collage to show off at his first birthday and then store them in a memory book. These are keepsakes that we want to be able to share with Caelin when he is older and show him just how loved and supported he has been since the day he was born! You can send the card to:

Caelin Clingan

PO Box 1631

Largo FL 33779-1631

Caelin will be walking in the heart walk in Tampa, FL on 3/16/2013. If you are in the area we would love for you to come meet him & help spread awareness of his heart defect and other CHDs on the day after his FIRST BIRTHDAY! Please help Cael and his team raise money to fight CHD and spread awareness. If you are close to Tampa and can walk, please join our team & help raise money! If you cannot walk, we would still greatly appreciate a contribution. We understand times are tough, but EVERY donation counts and helps our children fight the trying battle against CHD. Nothing is too small! Thank you Barb, Dawn, Sue, and Michele for your contribution in honor of Caelin! http://congenitalheartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1050004&team=5403052

And an announcement to all of our Michiganders:

We will be in Michigan in June! We plan to arrive June 8^th, 2013 and depart June 15^th, 2013. So clear your calendars! We hope to have a little meet-n-greet celebration at a park on Sunday, June 9^th for family, friends, fans, acquaintances & friends of friends to meet Cael! J We have not worked out complete details yet but just want to give everyone an early heads up. See you all soon!