Friday, February 1, 2013

I Am Fearfully and Wonderfully Made





Spaghetti!




Practicing Standing.
Peek-a-boo!
Saying "See-ya-later" to Daddy before he got on the plane.
Crazy jumper.
Eating his puffs!
Nakey baby waving, "Hello!"
My hero in red. <3
Picture of his teeth on Wednesday... they are in even more now!
Push ups time!
Before I get into the details of Caelin, I would like to inform everyone that February is heart month. Heart meaning Congenital Heart Disease Awareness, not Valentine’s Day. CHD Awareness week specifically is February 7th through February 14th. Keep your favorite heart warrior in mind ;) and remember that 1 out of 100 babies born have a CHD. Not all of them are as complex as Caelin, yet some are more. Too many of these children do not get to know life after birth, let alone see their first birthday. Caelin has beat many odds stacked against him and others have not been as blessed. So please, let’s come together and be informed about CHD and how we can help those affected. Today was National Wear Red Day for CHD and we are ecstatic with the number of people who are wearing red in Caelin’s honor and for all the other heart warriors out there… thank you! Your support and love mean more than we could ever begin to explain!

A couple days ago, my “Inspirations” application sent this to me: “Psalm 139:13-14, 16 For you formed my inmost being. You knit me together in my mother’s womb. I will give thanks to you, for I am fearfully and wonderfully made. Your works are wonderful. My soul knows that very well. Your eyes saw my body. In your book they were all written, the days that were ordained for me, when as yet there were none of them.” This quote so perfectly fits Cael’s miraculous destiny for greatness. Through all of Caelin’s struggles, obstacles and emotionally trying times this quote reminds us that Caelin has a purpose. Before we knew of Caelin’s heart defect and the affects it would have on us and so many, we hoped Caelin would become a happy, influential and productive individual and we now KNOW he will, as he is off to an early start. Already, his resilience, determination and strength have brought hope, love and faith to our family and to so many people around the world.

So since it has been a couple weeks since the last blog update (sorry), let’s get you all caught up! J The past two weeks were phenomenal. Caelin has healed from his sickness and is tolerating feeds and building his endurance during physical activity. On Thursday, January 24th, Caelin’s top, front, left tooth broke the skin and Friday the top, front, right tooth broke through! Both teeth are coming in SUPER fast. Within just one week, the complete bottoms of both teeth are already exposed. Although he is constantly on chewing anything his little fingers can grab hold of, he has not been unusually crabby or irritable- thank goodness because he does not like Orajel and he cannot have Tylenol.

Caelin is proving to us all just how ready he is to become mobile. He is eager to try new things and never bats twice at an opportunity for success. For the most part, he can go into a side sit while reaching for toys and tries so hard to pull himself back into a basic butt-sit… he gets a little bit better at it each day. He also tries to pull himself up into a sitting position while lying down on his back… he can do it while holding onto our index fingers with very little support. Saturday the 26th, he started pushing up on his legs while laying down to make a bridge with his bottom. He now does these thrusts while in this position and they have gotten higher off the ground, more frequent, and he is even laughing while doing it. Juliet (PT) says this is a great step toward crawling. Caelin is standing on his legs more and actually initiating standing while being held and in transitions during exercises (forget the jumper- he’s going to end up busting that thing with how he is trying to jump out of it! Lol). In PT this past Monday (1.28), she went to put him on his knees but he straightened his legs and put his feet on the floor to stand. This is the first time Juliet had ever seen this happen and boy, was she impressed! Juliet is more than pleased with his ever-increasing physical progress, confidence, and endurance. Endurance is key with a heart baby because so many things that seem simple to a healthy person and usually require little effort, actually exhaust little guys like Cael and then this makes the baby frustrated. We have seen this happen with Caelin; he gets too tired to try and then he gets frustrated and yells/cries because he WANTS to try, he just can’t… Even though he cannot always complete certain exercises now, he is not reserved about trying them and putting forth the effort and this reassures us that he will complete them one day soon. I pray he always keeps his strong, fearless confidence and that hunger to learn and grow despite his physical limitations.

As for his diet, Caelin has made HUGE strides! On the 20th he tried his very first real meal- spaghetti! He did well eating it and enjoyed eating the same meal as Mommy and Daddy. Since then he has tried egg & dairy free banana bread, egg & dairy free mac-n-cheese, peas, carrots, green beans, peaches, mandarin oranges, and sweet potatoes. Of all these, mandarin oranges and sweet potatoes seem to be his favorite… the mac-n-cheese was a little too soon for his chewing abilities so we will try again in a few weeks or so. He also eats puffs, mum-mums, and yogurt melts made with rice milk and he absolutely LOVES all of these! Since letting him try more solid foods he is not really interested in the pureed foods; he wants the solid foods but his chewing abilities are not fully developed but again that confidence and eager personality wants to do more than his body is allowing.  He does do great with a sippy cup. We decided to ditch the bottle because at this point he would only be on it for a maximum of six more weeks and he just does not get enough volume out of the bottle compared with the sippy. Plus, sucking from the bottle causes him to tire easily and the sippy helps to preserve that energy a bit better. Along with all of these improved oral feeding steps, Tuesday (1.29) we trialed bolus feeds and eliminated the feeding pump during the day. What a pleasant surprise- he tolerated them! FIRST TIME EVER attempted and it was a success. He still gets continuous night feeds to ensure adequate nutrition and so we do not have to overload his belly during the day but he has now tolerated bolus feeds FOUR days in a row! Hallelujah! Pride for our son is just seeping from our pores!

In between working hard and helping Caelin progress, we have been trying to spend as much family time as possible. Daddy was recently accepted to the Masters Program of Cardiovascular Science (Perfusion) at Midwestern in Glendale, Arizona so he leaves in August and will be gone for nine months. Needless to say, we are eating up every moment of family time we have while we have it! Even if it is just cuddling up on the floor reading books, or watching Mickey on the couch or an extended bath for Cael because he just loves splashing in the water. So we recently went to the zoo and saw the new baby elephant among many other animals. We go for lots of walks and enjoy the close parks. We went to Babies R Us and tried Caelin in a walker; as soon as Mommy sat him in it, he was off! Well, he took off backwards but that’s okay because it is developmentally appropriate. ;) We were still pretty shocked that his little legs knew what to do and although we did not buy it that day, we decided to go back two days later and get it as an early birthday gift. He LOVES it! He has used it outside, rolls around in the kitchen with it while Mommy is cooking dinner and he can even push it across the carpet- GREAT investment!

Speaking of birthday, it is EXACTLY 6 WEEKS until Caelin’s FIRST BIRTHDAY! OH MY March 15th is coming fast! We cannot believe just how fast time is going by, how much Caelin has healed and grown and just how blessed we are to have him in our lives. We truly had no idea what we were missing before we had Caelin… no one could have ever prepared us for the unconditional, absolute love and pride we feel for our son. Well, I will save those emotions for his birthday post. But with his birthday coming up, we are hoping all of Caelin’s family, friends and fans near and far, who are so much a part of his story and support system, will send him a birthday card! Caelin’s Mommy will be creating a collage of all his cards for decorating for his first birthday and then putting them in a memory book. We would love for you to write to him and wish him a happy birthday but we would also like for you to tell us a little bit about yourself and/or your family in the card so he (we) can know more about the wonderful people whose great love, prayers and well wishes have made him victorious through countless battles! He has his very own address:

Caelin Clingan
PO Box 1631
Largo FL 33779-1631

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