Thursday, May 9, 2013

Crawling, Talking, Soon to be Walking, Oh My! :)

Caelin had THE MOST AMAZING photo shoot on Saturday, May 4th. Thank you to my very wonderful, talented, great friend Stacia from Love Script Photography for being so good to our family and capturing these precious faces to remember always. <3











13 months... now almost 14!
Climbing up his dresser!
Cool little dude.
Loving taking a lick of Mom's dum- dum!
Caelin's new bathroom!
Helping Dada paint!
Cuddling with Momma on her birthday!
Watching the sharks at the Happy Heart Party @ Clearwater Aquarium.
Getting into mischief.
Buh- bye condo on Sailwinds Blvd. We will miss you and forever cherish the memories made here! 

Since the last blog update, we have been struggling with oral feeding. Cael was vomiting almost daily from 3/21/13 to 4/21/13, which is completely out of the norm for him, and his Gastroenterologist and staff were of no help. They blame it on reflux or a virus but we do not agree with them. He has never been one to have severe reflux because he gets the medicines (Prilosec & Zantac) to prevent it. When he was originally diagnosed with GERD, his heart was failing and no one knew that; so really, it would not be a stretch to say that he could have been misdiagnosed with GERD because his heart was not properly perfusing the GI system. This lack of perfusion caused his intolerance of feeds and incessant vomiting. Anyway, Sean and I think this recent vomiting is from elevated liver enzymes. We thought about getting them tested early (scheduled for mid-May) but didn’t end up taking him, as we were waiting for labs from Cardiology to test for other issues like thyroid problems & such. We have not heard from cardio further about these tests so he will get just liver blood labs drawn next week and we will see where his liver enzyme levels are. We just pray that it is not his heart. This time of the year last year is when we were having the serious vomiting issues and it WAS his heart… his aorta was obstructed causing a major pressure gradient and poor perfusion through his body. He went to the cardiologist on March 12th and we were told his heart looks good; that it is pumping well and his Tricuspid regurgitation appears even less than December and that is a good thing. Since April 21st, Caelin has been getting back to his normal eating schedule and expanding his food preferences. He now eats canned fruits and vegetables daily, baked beans and has even tasted baked chicken! We pray this continues because the more real food he tolerates and enjoys, the less formula we have to supplement. Of course, some days are better than others. He will also eat soggy cheerios with formula now (did this to introduce this type of texture to him) but still prefers the crunchy, dry cheerios. He drinks at least 6 ounces of formula through his straw sippy cups and some days he does even better. I think part of the struggle with him eating food and drinking his formula is that his stomach is still smaller than the average 13 month old. We really hope he can tolerate condensing his night feeds so we can work to stretch his stomach and for him to accept more food/formula during the day. J

Caelin does have an appointment in Gainsville at Shands’ liver clinic on 5/22 for a second opinion on the elevated liver enzymes. We are hoping this drive will not be a waste and that they have more to offer than the ACH gastroenterologists. Please pray for better insight and helpful guidance!

His physical progress is OUTSTANDING! On Sat 4/6 he walked forward in his walker for the first time. Now that we live in a townhouse with all wood floors, he can move more freely with his walking toys. On Sat 4/13 Cael crawled forward for the first time and then on Mommy’s birthday (4/23) he actually crawled with several forward movements!! On Sat 4/13 he pulled himself up onto his knees while in his stroller and on Thurs 5/2 Daddy caught Cael standing up in his crib on his own for the first time. Since May 2nd, Caelin has worked on standing on his own and is able to do it while gripping Mommy/Daddy but has not built up the confidence to pull up to standing from his knees using the couch or coffee table. He does love to sit up on his knees and play, he will even crawl on his knees while upright and holding onto his cube, walker, the couch or coffee table, etc. He is now walking from one end of the couch to the other and along any piece of furniture available. He is more comfortable walking from the left to the right (we work with him going the opposite way) and makes it to the end in the blink of an eye. He can also walk with his sit-to-stand walker on his own but he goes very slowly so we like to stay right behind him with the wood floors. The wood floors in our new home are a blessing but also a pain because he has already had about 5 big bumps with being mobile and the wood floor is not as forgiving as carpet. Needless to say, he now has 52 foam alphabet pieces in his play corner to help cushion his falls.

So not only is he crawling and cruising all over the place, he is expanding his vocabulary too and learning the names of so many things! He newest words are “Momma,” “Buh-bye,” and “Yes.” He loves to say many other things though, like “Dada,” “Hi!” “Yah,” and “Dah (dog).” When asked where his body parts are located, he can identify his legs, feet, toes, hands, fingers, eyes, nose, head, mouth, scar, and ears!!! Mommy just LOVES this! He is doing great with identifying animals and the sounds they make. He can say what an elephant, a lion, a snake, and a butterfly (waves his arms to fly) do. We are working on cow, monkey, owl, dog, and cat, too! J Each day he astonishes us with what his abilities, his knowledge, and how quickly he learns new tricks. LOVE IT!

 Since the beginning of April he has been giving Mommy trouble with taking naps because he just wants to play. Even when he is exhausted and can hardly keep his eyes open, he will sit up in his crib and attempt to get out through the bars, play with his blankets and binkies, or turn the pages on his music box.

Our trip to Michigan is still on! We plan to be there from June 8th until June 15th and are so excited to see all of our family and friends. We are excited for Cael to meet all the people we love and who love us! J Please pray for Cardiology clearance on May 21st and safe traveling! Speaking of May 21st, that is the anniversary of ECMO. Cannot believe it has been almost a year since our little man endured a cardiac arrest, requiring CPR and life support! If someone, anyone, would have told me a year ago that my son would be mobile and talking today I would not have believed that person. Even if it were The Lord himself, I would have had my doubts because our days were clouded with so much darkness and sickness. I pray every day giving thanks to God for wrapping his loving arms around our son, then sending him back to experience a happy, healthy life with us.