Give Me Five!

Discharged from the hospital!

Cael giving Daddy high-five!

Big Guy & Little Guy Clingan. First time wearing their shirts together since Daddy got them on Father's Day! 

Cael's AWESOME new sweatshirt!

Cael tickling Daddy's beard!

Great Grandma holding Cael for the first time! 

Sitting up playing his piano with his hands!

Painting for Daddy! Happy Birthday!

First time with a sippy cup!

Happy!

Nappy time!

Such happy guys!

Here's your card, Daddy!

MMmmmMM Blueberries!

Helping Daddy blow out the candles!

Looking at the sting rays in the aquarium. 

Looking at the BIG tank!

In front of his favorite tank! Can you spy the rainbow fish and the blue fish?

Cael & Mommy mesmerized!

Outside the aquarium!

Here's my tooth!

Since being discharged from the hospital, Cael has returned to his normal, spunky, energetic, and full-of-life self! It's such a great feeling, looking into his innocent, sparkling, blue eyes and just seeing how much he loves life. 

Cael had a cardiologist appointment last Tuesday and got his blood drawn for a comprehensive metabolic panel. His liver enzyme levels are still elevated. His ALT is at 252 and the week before was 274. His AST increased to 172 from 80 upon discharge. His Direct bilirubin level is 1.5 while his total bilirubin (indicating Jaundice) is 3.8. The cardiologist, Dr. Stapleton, said Cael's heart is doing great and scheduled his next appointment in December. Wednesday he had a GI appointment and we discussed his elevated enzymes and bilirubin levels. Dr. Rivera still thinks it is viral but we told the nurse practitioner we are worried about it being hepatotoxicity (liver poisoning) from a combination of some of his medications. They don't think this is probable, but we are just nervous because his little body seems to be so sensitive, especially after requiring 50 minutes of CPR & 48 hours of ECMO in May. We just want to try to keep him as healthy as possible. But she did suggest weaning him off Reglan as he has been on it for over 6 months and it does have the potential to cause hepatotoxicity. Saturday we decreased his dose from 4 times a day to 3 times a day and we will slowly wean him off in between increasing his feeds. He goes back on November 7th to get his enzyme levels rechecked.

Because of throwing up and having to be hospitalized for six days, he is still on continuous 24-hour feeds through his G-tube. We have been able to increase his rate so he is getting more adequate nutrition. He was gaining weight and growing very well but he has sort of leveled off since he had the throw up spell on September 26^th and is starting to look skinny again. Luckily, he has not thrown up again since the day he was admitted but now we want him to get chunky again. It is a bit of a challenge to feed him orally because he is never “hungry,” nonetheless, Caelin really seems to love exploring different flavors of solid foods. Up to this point he has tried sweet potatoes, carrots, squash, peas, apples, bananas, and rice cereal. He also drinks a little from a bottle each day and has begun experimenting with a sippy cup. Recently, we put frozen blueberries in a little net specifically for introducing solid foods. It is called the  “Munchkin Fresh Food Feeder.” It is a way for him to get delicious, nutritious food and is great for his teething gums! By his smiling, purple face it was quite clear that he loves this new way of exploring foods. In fact, his Speech therapist is very happy with all the practice Mommy and Daddy do with Cael at home and thinks he only needs a couple more appointments until he is on bolus feeds because there is nothing more she can do for him than what we are already doing for him at home. Truthfully he does better at home for us than he does for her at his appointments because he is out of his comfort zone when he is at the appointment.

Friday was Daddy’s birthday! Caelin created a painting especially for Daddy and he also wrote a message and his name in a birthday card! Of course, Mommy held his hand and moved it to spell out the words while Cael held the marker but he was intrigued with the new experience. And he was so very proud to give Daddy his gifts Friday evening! Sean had a great first birthday as a Daddy!

Cael’s Great Grandma (Sean’s Grandma) flew down last Tuesday to meet him for the very first time! He loves her and all the attention she gave him! =) While she was here, we took Caelin to The Florida Aquarium in Tampa for the very first time. He was mesmerized by all the bright colors and different sized fish swimming all around! He loved to watch the big schools of fish and the large sharks swim by but his favorite tank was the one with bright blue fish and a rainbow fish!

Caelin cut his very first tooth on Wednesday! He has been teething for a couple months now but his first tooth finally arrived! We thought the first tooth was going to be on his left, side/front because a little white dot appeared there under his gums before he was discharged but his first tooth ended up being his very front right tooth! When he cries or smiles real big, you can see it! It is absolutely adorable but we are going to miss that contagious toothless smile!

Over the past couple of weeks we have been working with him on developing his physical and gross-motor skills and learning more fine-motor skills. And this past week Caelin mastered two new things: waving and high-fives! Daddy taught him how to give “high-five” and he likes to give them! When he is in one of his happy-go-lucky moods, he gets a kick out of laughing and giving high-fives. Grandma was the first one who got to get him to wave! She waved to him on Friday morning while he was lying on his bedroom floor playing. He imitated her and waved back while flashing a huge smile! =) He sure knows how to charm! We are still working on clapping- he recognizes the song, “If you’re happy and you know it…” but he only puts his hands together once. He doesn’t continue the clapping after his hands hit, instead he folds his hands then smiles and puts his fingers in his mouth. Goofball! We are actively working on other things like him sitting up on his own, rolling over, tummy time, jumping (assisted), and mimicking movements and sounds (especially Momma, Dadda, and uh-oh). He is still getting used to the jumper. He now sits comfortably in it with his legs extended and will play with the attached toys for a decent amount of time, but he has yet to really get his legs to jump. His first outpatient physical therapy appointment is Tuesday, October 23^rd so maybe they will show us some more exercises to help strengthen his chest, core, arms, and legs.

Finances are starting to get tight so we are trying to cut costs where available including cable & Internet. Caelin is definitely going to miss his Mickey Mouse Clubhouse in the morning but we do have a couple DVDs for him. Plus with Christmas coming, Mommy decided to find an evening/weekend job and she got lucky and got hired within a couple weeks of applying. She starts her part time job at Kohl’s next week.

Tomorrow our babe turns 7 months! Wow. We are so blessed to have him safe at home, continuing to heal, learn and grow. And we are so very appreciative of the love and prayers from you all! Thank you for loving our son and being a part of his journey!