Happy Birthday, Miracle Warrior!

Birthday Kisses at the park!

Uncle Brandon, Cael & Daddy at the heart walk!

Flying his first kite!!!!

Our heart walk shirts!

Our family & Piper's Family

Opening presents at his party!

Enjoying his Mickey cake!

Very much over the Mickey cake now... lol

Grandma & the birthday boy!

Brandon & the one year old!

Daddy, Cael & Momma! One Year photo session.

How many men does it take to feed a baby?

Enjoying his first ever ice cream cone!

love.this.boy.with.everything.

Drinking from a straw!

At the cardiology appointment.

Yes, he

Oh sweet smiles!

The Guys!!

Rockin' his Detroit Tiger's jacket from Grandma!

Lookin' all awesome in the Jeep at Toys R Us!

Hi Grandma, I missed you!

Opening his gifts!

On March 15^th at 4:59 PM Caelin turned ONE YEAR OLD! He received an astounding amount of birthday cards from family, friends and fans from all over the world! We are amazed and thankful that so many people helped up celebrate Caelin’s first birthday from afar by sending Caelin a birthday card, writing letters, and even sending gifts. He received some surprise gifts of crocheted hats, outfits, toys, stuffed animals, books and more! Thank you for making him feel extra loved and special! All of the cards are going into a scrapbook for safekeeping and he is enjoying wearing and playing with all the other gifts!

For his birthday, Caelin’s Grandma flew down and his Uncle Brandon drove down, too. So we (Mommy, Daddy, Caelin, Grandma & Uncle Brandon) spent his actual birthday opening presents and playing with his new toys at home. Then in the evening we went to the park and Caelin got to help Daddy fly a kite for the first time ever! It was a cool and windy evening but the sun was shining and Caelin’s radiant smile and contagious giggles while flying the kite warmed all our hearts! The day after his birthday was the Heart Walk in Tampa Bay, which was a major success. This was the first heart walk we ever participated in and we are thankful we got to all walk together and were able to raise a total of $650 as a team! What a great contribution to fighting CHD! Caelin got to walk with many other heart warriors, including his friend Piper, and some of his nurses from the CVICU. Thank you to everyone who supported us and donated. Also, a HUGE THANK YOU to Bill Tipton of Loyal Tees for creating our AWESOME tee shirts specifically for the heart walk and gifting them to us! You are a blessing! To end his birthday weekend, we had a birthday party at Seminole park on Sunday. We were able to celebrate this special milestone with not only Caelin’s Grandma and Uncle from Michigan but also with many new friends (which include nurses, staff and families from the CVICU). All the family arrived to the park early to decorate the area and set up for the party. Daddy and Brandon left a little while later to talk Caelin home to nap while Mom and Grandma stayed at the park finishing the details of the party. Around 10:40 AM Daddy woke up Cael from his nap and Cael was less than thrilled. Despite Mommy suggesting to just grab Cael and go and dress him once he got to the park, Daddy dressed Caelin at home, which increased Cael’s frustration. By the time Cael was strapped in his car seat he was screaming and choking on his saliva. Well, when he screams that hard he usually vomits… which is exactly what happened. Caelin projectile vomited all over his birthday outfit, the car, his car seat, and of course, Daddy.  So Sean had to take Caelin back inside, calm him down, clean him up and change his outfit. Caelin finally arrived to the party at 11:35 AM, 35 minutes late and after ALLLLL the guests were there, of course. Apparently he just wanted to make a grand fashionably late entrance. And boy did he ever. He did not get to wear his Mickey Mouse suspender outfit as Mommy had envisioned but he sure did rock his button up, blue striped shirt with his green tie, Khakis and Nike Shocks. Although the day did not begin as planned, it recovered thanks to everyone being so understanding, wonderful and in love with Cael! J His birthday weekend could not have been any better! We praise God for placing such remarkable people in our lives, extending our support system and giving us the greatest gift of all- Caelin!

Teeth #7 & 8 are making their way in and do not appear to have the Enamel Hypoplasia like his one front tooth, so hopefully it is confined to just that one. He had his first visit with his new Pediatrician on March 21^st. She seems great and I already like the office much more than his initial Pediatrician. Cael currently weighs over 23 pounds and is about 29 ½ inches long.  WOO HOO! He got his shots but only cried one tear out of his left eye. He will have to get shots at 15 months and 18 months to get caught up completely caught up from falling behind in the hospital. I did express some concerns about the tough transition from pureed foods to solid foods because Caelin’s gag reflex is so strong and his palate is so high. So once a piece of food hits that reflex, he brings up everything he ate previously… this is just not healthy and it is scary and sad each time it happens. Also, when he does drink fluids he often sounds wet, even when he doesn’t vomit/spit up. These two concerns brought up the discussion of trying Speech therapy again. The ACH Speech department just happened to have a cancellation that same day, so Caelin had a new speech evaluation on March 21^st. The speech therapist said he is doing really well and is impressed that he drinks through a straw because many normal children his age do not but she did recommend a swallow study to check for aspiration. Cael will have his swallow study on April 11^th and we are waiting for an opening for once a week therapy visits for feeding; the department is really busy and there is currently a waiting list. Meanwhile, we will continue to work strongly with him at home. The therapist who did his evaluation, Victoria, gave Mommy some new suggestions to try and so far they seem to be helping! Praying for continued improvement with oral feeds!

As for advancement with oral feeding, he is on 53mLs/hour for 10 hours of night feeds. We went to this rate on Tuesday, March 26^th from 47mLs/hour for 11 hours. We are beginning to condense the feeds (same volume in 10 hour period as was given in previous 11 hours) to stretch his stomach and eventually come off night feeds… this process will take months if not more than a year but we have to start somewhere. J We have no intention of getting rid of Caelin’s Mic-Key button before his Fontan but it would be nice to be rely on it as little as possible so the transition is not more challenging later in life. …Hopefully that makes sense to our readers. Lol He does drink about 3-7 ounces of formula a day by mouth!!!! This is a HUGE improvement from NOTHING just a couple months ago! On March 9th, he learned how to drink from a straw and now that is all he uses. We are done with the bottle and he really does not like the sippy cup. So straws it is! Next step, big boy lidless cup! He can also start having dairy products. We are starting him with cheese products and yogurt. The cheese is going to take some getting used to because of the texture but he LOVES yogurt! We got him the Yobaby and so far he is devouring the peach and blueberry flavors! Great sign! J His struggle comes with more solid foods like pastas, fruits and vegetables. We have not yet tried meats because he cannot tolerate the easier foods yet so we know meat is just not an option. So most of the food that he still gets is pureed but we are mashing a variety of foods with our forks and offering it to him to try to get him used to these other textures. As with everything else, one step at a time. He will also be switching from Elecare to Elecare JR. The doctors want him to stay on formula for a little while longer because he is primarily tube fed and the formula is such a great source of vitamins, minerals and overall nutrition. And with his heart defect and being so active now, adequate nutrition is crucial to his continued growth, recovery and progress.

He had a full Cardiology visit on March 12^th; Dr. Stapleton said his heart looks good and that his regurgitation appears to be even less than in December. YAY! His blood pressure was at 94 systolic, which is actually on the low end for Caelin and Dr. Stapleton is happy with it and will keep him on the same medicine. Great news! J We did receive some sad news while we there though- our other favorite cardiologist, Dr. Wilmot, chose to leave ACH and go to Cincinnati to further develop his career. We were told his passion is with transplant and ACH could not offer him enough experience in this area so he sought out a program that could. We are disappointed and heavyhearted that he left because he played such an imperative role in the survival and recovery of Caelin. We prayed he would be there for Caelin’s Fontan but God seems to have other plans. He invested in Caelin so greatly and frequently stayed late to care for Cael, answer our questions and comfort our fears. He truly has a gift and we are so thankful for everything he did for Caelin and for our family. His intricate involvement in his patients’ care is a treasured rarity and we hope his future patients and coworkers realize this and respect him for it. We miss him but wish him well and all the best during this new chapter in his life. Again, on a happier note, since Caelin’s heart looks good he has been cleared to travel to MI in June! As long as Cael continues to do well, our family will be up there! We are planning for June 8^th to June 15^th. Mark your calendars!! :D

Caelin is now going into the sitting position on his own. The first time he did this was on Tuesday, March 26; Sean walked into Cael’s room after his evening nap and he was sitting up in his crib!! He did it again on Wednesday while playing on the floor in the living room; Cael was lying on his back when I went into my bedroom to hang up some laundry, I walked out and he was sitting up! He is now pulling himself up on all fours and rocking (3/27) and he is scooting backward forcefully. He can go forward with assistance but hasn’t quite mastered the coordination to do it himself. He can scoot forward while sitting up on his knees (started this on 3/28) and we practice moving from side to side while sitting on his knees (did this first on 3/11), too. He does really love to stand and on March 9^th he started walking with assistance. Now pointing is his new favorite thing. So he will point to something, reach for mommy or daddy and then want to walk over to the object he points to. His communication skills really are fantastic! He is beginning to repeat signs that Mommy practices with him, too! He is just learning so much and we LOVE it! I remember the days when Caelin would keep his legs frogged and never let them touch the floor and did not even want to try to lie on his side, let alone his belly. He has come so far and is well on his way to catching up to be as physically capable as a normal, healthy toddler. TODDLER? That still is just bizarre but so cool at the same time. And no matter his age, he will always be Momma’s baby Cael!

During this time last year, Caelin was recovering from his Norwood and emergency bedside reopening for his shunt thrombosis. Looking back at the photos, reading the details, and reliving the emotions creates this ultimate sense of blessing and gratitude for every person who helped Caelin to recover and get to where he is today and for The Lord’s protection and guidance to help Caelin fight so strongly and live as normal of a life as possible. We pray and hope for continued recovery and many more days, years and birthdays to celebrate with Caelin! LIFE IS SO GOOD!