Photos, Photos, & Love @ 8

Big Boy Playing!

Check out that flexibility and that tongue!

Tummy time on the arm of the couch.

Happy boy tummy time.

Bath time with Momma. 

Waldo lost his cane.

Cael & his Mam binky!

Sup homie?

How grown up does he look!?!?

Cael with his Nuk brush from his fabulous Speech Therapist.

Using the big boy cup!

Oh that tongue. <3

His excited face!

Light up reindeer ears... not amused.

So sleepy waiting to get his blood drawn. :(

LOOK AT MY TEETH!!!!!!!

Momma & Cael!

Hello Everyone! Life down here in Florida is going well. Our little warrior is continuing to grow, learn & impress us! HE IS 8 MONTHS OLD TODAY! Can you even believe how quickly time passes? Oh how each day is a cherished blessing! When we went to the WIC office on Tuesday, he weighed in at 17 pounds 3 ounces (with shorts & t-shirt) and 26 ½ inches long! J Cael loves to give high-fives & he is sitting on his own for longer periods of time. He’s much stronger and pulls himself forward every time he sits on the couch, in his high chair, stroller, and even tries while in the bathtub (slippery!) and car seat (thank goodness for restraints)! Also, our little Cael officially has two teeth! Both of his bottom front teeth popped through and are very sharp- and wowie did this make for a cranky boy on and off but happy so say, “That’s normal!” He is also experimenting more consistently with using “Mam” pacifiers. It may be because he is teething but he seems to actually like them! He truly is the best company one could ever imagine. Although he is so happy, tolerating feeds and growing appropriately, his body is still very much recovering.

His liver enzymes continue to be very high. Monday, November 5^th Caelin had a GI appointment because he had blood coming out through his tube with his formula when we vented him. The nurse practitioner increased his Prevacid & Zantac in hopes it would help the blood and we have only seen a few specs since. He also has a script for Carafate to help his stomach if the blood continues/gets worse. On Monday he also had follow-up labs from his vomiting spell and elevated enzymes in September (the time that required him to be re-admitted for 6 days). His enzyme levels nearly doubled since early October to 499 and 349 while his total total bilirubin decreased to 1.6. Again, the GI doctor asked us if Cael has been sick and the response was the same as in September: NO. He has not been sick. He was never sick. No fever. No coughing. No sneezing. No runny nose. No congestion. It is something else. We have always believed it was something else but GI INSISTED it was a virus. So he had his blood retested on November 12^th and his enzymes were 479 and 304 with his bilirubin at 1.2. Yesterday (Wednesday, November 14) Cael also had a follow up ultrasound, as requested by Mommy. The radiologist read it and the GI doctor called us to tell us the results- the liver measures normal, has normal texture, and seems to be functioning normally. We are very thankful for that! His gallbladder still has “sludge” in it but he has been on Actigall now for about 6 weeks and we hope it will break down and clear out that sludge. When we were watching the ultrasound in progress, the “sludge” looked more formed and spherical this time around (like a stone) but as Dr. Wilsey so politely reminded us, “This is what the radiologist does for a living.” So we will stick with “sludge.” Nonetheless, protecting and advocating for our son is what we do for a living so we will express as many concerns and ask as many questions as necessary. NO ONE is right all the time, especially in the medical field; this fact has been made clear to us time and time again.

Now that whatever is going on with Caelin’s liver enzymes is clearly not caused by a virus, just as OUR intuition and sense told us all along, GI has changed their diagnosis. They say it is Congestive hepatopathy. Congestive hepatopathy is liver dysfunction caused by blood backing up into the liver (venous congestion) as a result of right heart failure a.k.a. congestive heart failure. With everything that Caelin has been through, he has never been classified as being in congestive heart failure so we have extremely mixed emotions about this whole thing. Caelin’s cardiologist strongly feels it is NOT his heart causing the liver enzymes to be high but Cael has not had an echocardiogram or heart-related blood labs since he was in the hospital so we are really hoping his heart has not gotten worse since the last time he got all these tests. He is scheduled to visit cardiology on December 4^th but we are kind of wishing it were sooner because we are feeling anxious. We are just so nervous because a similar situation like this happened in April & May. As many of you remember, Caelin was being fed past his stomach into the small intestine and he was not tolerating his feeds at all. GI blamed his heart and Cardiology blamed his GI tract. While they were passing the blame for weeks, Caelin’s feeding never got better because his heart WAS failing from an obstruction in his Aorta. This is what made his heart so sick and so weak and why he required 50 minutes of CPR and 48 hours of life support. We are deathly afraid that something is being missed and we do not want to wait for it to present itself in a similar manner. We just want our son to be healthy and live a long and full life. We pray his heart is still healing and not digressing.

On a happier note, he did have his last speech appointment on November 1^st because he is doing well with oral tasting. During the session his therapist introduced the Nuk brush, which is a cone-shaped rubber, bristled brush good for teething and putting food on. Cael really likes it! We now use it in conjunction with a spoon. When we try his bottle now, we use the “fast” nipple so he does not have to suck so hard and he seems to really like it. He has been practicing using a sippy cup and has used a big boy cup a couple times to mimic Mom & Dad drinking! He likes to drink all three ways! As a matter of fact, yesterday he went a total of 4 hours without food as necessary for the ultrasound. Afterward, Cael drank 20 mLs from his bottle! Although did not make up for all the lost time, it was still more than we expected him to take by mouth! Go Cael! We also started incorporating meats into his diet and he has since tried Turkey Apple Cranberry, Chicken & Sweet Potatoes & Chicken Apple Compote and he has liked everything he has tried! Mommy is sooooo happy he is not a picky eater thus far!

He will be starting Physical therapy the week after Thanksgiving. The PT office FINALLY got visits approved and finalized but I had to call them to get it finalized. The experience thus far with this outpatient Physical Therapy has been very negative and I hope to find a different place where we (specifically Cael) will have positive experiences and interactions. It has just been tricky with our insurance changing… this month he has Humana, next month Medicaid and January will be Blue Cross. Insurance is always a headache.

Last weekend we were blessed with taking our very first family photos since Caelin’s birth. We met our photographer at a local park and she is one of the most wonderful and inspirational people on this planet. Our session was on Saturday but we met an hour and a half before Caelin normally wakes up and he made us pay for it. ;) He was a tired little chap and so not in the mood for getting his picture taken. Since the family photos were not the greatest, we thought it a good idea to try photographing him on his own while we entertained him. Definitely not one of our most brilliant moments as he was tired, fell over and put a halt to all potential smiles. But like I mentioned, the photographer is absolutely phenomenal and she suggested trying again the next morning at a later time. Perhaps Mommy talked about the photo session a bit too much because Caelin seemed to take it very seriously on Sunday, as if he were posing for GQ, as Daddy said. He was most definitely in a better mood and not as tired so despite his seriousness Stacia captured some really good smiles and silly “Cael” faces. She did a fabulous job capturing our true essence as a family and we are so thankful God sent her to us!

We are eager for the holidays to come and experiencing them with Cael for the first time! Thanksgiving is only a week away and there are so many people, places and things we are thankful for! At the top of our list is, of course, our little miracle and powerful warrior, Caelin Steven. As for so many other “Thankfuls” we have let Cael speak for our family. Because everything he is thankful for, we are also thankful for and it is wayyy cuter and more special coming from him! Although we are not able to share this day with our family in Michigan, we will be able to share it with some family and friends who live down here in Florida. Grantie Wanda invited us to share Thanksgiving with them at her home in Melbourne and we are looking forward to being in good company on such a special day! We are also excited for Mommy’s best friend, Caelin’s “Auntie Sammy,” to fly down Saturday for a week and share Thanksgiving with us! We are so blessed and do have infinite reasons to be thankful! YOU are one of them!

Pulled himself forward like a big boy.

Told you... GQ!

8 MONTHS!

8 Month old warrior & proud daddy!

8 Month old warrior & proud mommy!

Caelin's festive crib! (Not to worry, lights do not stay on throughout the night)

Momma's light detangler.

Eating a cracker for the first time (Momma was eating them & he kept asking for one)!... Just missing tea to go w/that pinky!

Moved to the Bumbo because he liked the taste of it and wanted more!

It's a Bird, It's a Plane, It's....

It has been two weeks since the last blog, so you all are long overdue for an update! We are happy to report these last two weeks were full of bliss, delight and more mastered milestones! The pictures pretty much speak for themselves but I will go ahead and narrate anyway! <3

Playing with his toys!

Eating prunes.. his new favorite! LOVES them!

Playing on his side!

"If You're Happy and You Know It, Clap Your Hands!"

Lookin' cute in his Mickey!

Go Tigers! Fans through wins & losses!

Getting ready for pumpkin painting! 

Cael & Dadda... Clearly he painted more than just the pumpkin! :)

Momma & Cael.

The Piano Man.

Eating his toes!!!

Proud of his pumpkin!

Cael with all our pumpkins!

Daddy & Superman on his first hayride!

Momma & Superman!

With Frankenstein!

Cael & Despicable Me pumpkin at DQ.

.... It's SUPERMAN!

Proud Parents with our Superhero.

Audee & Superman!

Caelin and his "I Declare" statement!

Does this kid know how to pose or what?!

Tummy time on Momma's leg while pulling toys out of a box!

Caelin’s new favorite things to do are blow raspberries with his tongue against his lips, sit up, jump, and put his feet in his mouth! That’s right, only four days after the last blog update he started pulling his feet more and finally got them to his mouth! His right leg is easier to pull up because his G tube is on his left side so he often favors his right foot in his mouth (or perhaps it tastes better?). He also waves! Because he is still learning how to wave, he often waves when prompted then looks for approval, then waves again with a smile. This is the sweetest thing! <3 He is still pretty inconsistent with clapping but we are still working on it. He will clap sometimes and then act like he has no idea what I am doing or how to copy me. He is one stubborn cutie.

But one recent milestone that Cael has absolutely astounded us with is his sitting ability. He has practiced sitting in his Bumbo and on our laps with support for a while now but recently we’ve decreased the amount of support we provide him. To our surprise, Caelin’s balance and strength have improved so much he is able to sit on his own for several second intervals. He can also sit while bearing his weight through his arms on the floor or an object in front of him (he has done this for as long as 2.5 minutes continuously). Cael often works up a sweat while doing all the work himself so although he is often smiling, laughing, and babbling while sitting, it is clear this exercise is tiring for him so we do not let him do it for too long. But goodness, we are so very proud!

Going along with sitting up, he is starting to pull himself forward while sitting in his car seat, stroller, and high chair. He is also starting to lift his lower back and bottom up off the floor while laying- he typically does this right before turning onto his side so it is a swift motion, but exhibits his increased strength, nonetheless. We practice tummy time with Cael daily. He prefers to do tummy time while lying over Mommy’s thigh, on the Boppy, or on Mommy and Daddy’s bed and is still not a fan of being flat on the floor. It is a challenge, but he can hold his head up off the floor and is starting to reach and play with toys while on his belly. He holds his head up and plays with the toys more consistently when the tummy time exercise is across Mommy’s thigh (as seen in the picture above). He also loves to play in his jumper and is finally starting to actually JUMP consistently while in it.

His oral feeding continues to be positive and enjoyable. His Speech appointment for feeding was cancelled last week because his therapist was not in on Thursday. We did go yesterday and it went really well. Cael ate about 15mLs of prunes for her and drank 10-15 mLs from his bottle, too! We have agreed with the therapist that feeding is going well enough at home to where we do not have to visit weekly so it will be discontinued after next week’s appointment. Caelin may resume in a couple months if needed once he is older, his G tube feeds are more condensed and able to eat a wider variety of food by mouth.

He continues to get caught up on his immunizations, also, with his first Pneumococcal Conjugate (PCV13) shot last week. He got the Synagis shot to protect him from RSV, also. He did great with these (minus a few expected tears)! His legs did not even seem to bother him this time around. And he has not gotten a fever from an immunization yet, either, thank God!

For Caelin’s first Halloween, we partook in a few festivities! The first thing we did was carve/paint pumpkins as a family. Caelin loved painting his little pumpkin and putting stickers on afterward. He started with 6 Disney stickers but decided the Minnie, Donald, and Group stickers were not impressive enough to leave on. So he peeled them off and left Mickey, Goofy, and Pluto. Mommy and Daddy carved Mickey and Minnie in their pumpkins and Cael enjoyed watching them use the tools. Daddy put the gooey pumpkin meat on Cael’s hands and watching his smile turn into a distained frown with furrowed brows told us he was not a fan. We enjoyed reading Halloween books and listening to/singing Halloween songs. Cael also got to watch his Halloween episodes of Mickey Mouse Clubhouse! On Halloween we took him to Brighthouse Field for their Boo Bash. This consisted of trick or treating around the stadium, a haunted house, and a hayride around the field. Although we skipped out on the haunted house, we walked him around the stadium as if he were a trick or treater but instead of taking candy, we just showed him off in his Superman costume! He received numerous comments and compliments on his attire! Cael also got to see his first baseball diamond up close and personal while enjoying his first hayride! He was pretty tired while all of this was happening but he seemed to like the time spent with Mom and Dad while watching all the little kids wander around (One of Cael’s favorite things to do is people watch). After leaving the field we went to Dairy Queen and although Cael did not get a treat from DQ, he did think the Despicable Me pumpkin was cute! Once we got home, we took him for a walk down the street to see some Halloween festive houses. One in particular had a lot of bright lights and inflatable lawn figures, including Frankenstein, which Cael’s eyes were glued to. We finally walked into the house just before 8, got Caelin into his pumpkin pajamas and he fell fast asleep on Mommy’s lap within 10 minutes of cuddling on the couch. This was our first holiday celebrated outside of the hospital and it was awesome! 

 

In other news, Caelin’s Daddy has decided to travel down a new career path and has officially accepted a new position in the medical field. His new title is: Sean Clingan, Perfusion Assistant, PBMT (Perioperative Blood Management Technician) one of those fancy euphemistic titles. He deals with blood during operations. ;) For those of you who do not know, when Caelin was on ECMO, Sean wanted to know all the details of the machine and took a professional interest in it and the people behind it who helped save our son’s life. This experience brought him closer with the Chief Perfusionist at All Children’s Hospital and they have kept in contact since that heart-wrenching day in May. Recently, a position opened in their practice and Sean embraced the opportunity. Interesting how life’s course takes unexpected turns, especially when good things come from the darkest of times. We once received this advice, “God sometimes has bigger plans than we have for ourselves,” and I am truly beginning to feel the truth in this statement and embrace it.

Thank you all so much for continuing to follow Caelin’s journey and pray for him and our family. We are so thankful for each and every one of you who takes the time to make our son’s life a part of theirs, as you all have become a part of his and ours. We cannot believe he has had almost 46,000 views to his blog! Sending lots of Love & Hugs!