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| Cute face. |
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| Momma & Cael @ the park. |
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| Someone found the toilet paper roll... trouble. |
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| Lunch time cutie! |
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| First Valentine's Day! |
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| Help support Cael on his heartwalk! (See Below) |
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| Great Papaw & Cael |
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| Our 11 month old! |
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| Cool dude in his Harley outfit, shades, beanie & on his ride! |
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| Loves his new walker! |
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| East Coast Family! |
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| Great Aunt Sheri & Cael |
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| Sleeping baby on the beach! <3 |
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| Uncle Tristan & Cael |
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| Cael and Piper! |
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| Beach Baby & his football! |
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BUBBLES!
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One month. Over four weeks since the last blog update. I am
a slacker, so much so that I had to go back and reread the last blog to remind
myself what I needed to follow up on and what exciting new things I get to
share! So here is what Mr. Cael has been up to in the month of February and the
beginning of March:
We had family visit! Caelin got to meet his Great Papaw for
the first time ever and he was also reacquainted with his Uncle Tristan and
Great Aunt Sheri. Caelin loved the company! He was not afraid or shy with them,
he went right to them to be held and to cuddle and he loved playing games with
them, like peek-a-boo and pat a cake. He also loved his Christmas in February!
Originally, their trip down was supposed to be in December but Papaw’s dog had some
complications after being neutered so they postponed the trip a few weeks. I do
not think Cael minded their coming later because he got to have a second
Christmas! And boy, did he love opening all his presents! He tore through the
paper so well, much better than on Christmas day. While they were down here, we
also went to the Pier in St. Petersburg, John’s Pass and to Sand Key Beach. We
weren’t sure how Caelin would do with a day on the beach but he did WONDERFUL!
Great Aunt Sheri rented a cabana and so Cael got to be in his pack and play
under the shade of the cabana, feel the ocean breeze, hear the waves crashing
on the shore and watch all the seagulls. He even drank 70 mLs from his bottle
this day! So perhaps the trick to getting him to drink is taking him to the
ocean. Unfortunately our family had to head back North and resume life’s
responsibilities but we are so grateful for the week they spent down here with
us! We also got to see some family who are on the East Coast and that was really nice, too!
Caelin also had his first (play) date with a fellow heart
warrior, Piper. She has HLHS like Cael and was in CVICU at ACH with him. The
similarities between the two of them is uncanny… even in the hospital the
nurses said they were practically spitting images of the other with regards to
their health, history and behavior and always referred to them as conspiring
together as boyfriend and girlfriend. ;) We met Piper and her family at Burrito
Border in St. Pete before Piper’s GI appointment and they were so cute
together! Once they locked eyes, they just started at each other. We parked their
strollers across from one another and they were trying to play footsie. Then we
brought them up in our laps and sat them next to each other. Cael was shy and
turned away smiling while Piper was smiling and talking to him. We are really
excited about their next play date and getting them to actually play on the
floor together!
Caelin now has SIX teeth! So drooling and chewing are his
favorite things to do right now. He chews on anything and everything he can get
his hands on. In fact, the other day he was giving Daddy’s hands kisses when he
very sweetly chomped down on Daddy’s skin leaving faint teeth marks. But
Caelin’s front top right tooth is coming in yellow so we wanted to seek
treatment right away. Finding a dentist was not as straightforward as one would
think because of his heart condition. If he has to have an oral procedure done
that requires anesthesia, it must be performed at All Children’s; which means
the dentist must have access to and privileges at the hospital. Thank goodness
he has THE MOST WONDERFUL nursing staff at the heart institute who got us into
contact with a highly recommended dentist with the required privileges. We are
so blessed to have their support and guidance every step of the way when it
comes to Caelin’s health. They never make us feel incompetent, inadequate or
overprotective/paranoid about Caelin, even when we make ourselves feel this way
(… it’s not often but it does happen). Despite our superhero disguises, we
really are just humans. ;) So Caelin went to his very first dentist visit on
Friday, March 1, 2013. The entire staff was welcoming, friendly and smitten by
Cael. They do not typically accept patients under 3 so I think an adorable 11
month old as a patient was a treat for them. The dentist office is decorated in
trains. It has an enclosed track mounted on the ceiling where electric trains
go around. It has a free train for kids to ride (like the ones at Chuck E
Cheese and similar to the penny ride horse at Meijer). Plus, Mickey Mouse
Clubhouse was on the big screen TV, so what more could a kid ask for?! His
dentist was thorough, quick, compassionate and interested in his history. After
examination, she concluded he has enamel hypoplasia on his front, top right
tooth; this means the enamel did not form all the way on this tooth. There is
no direct cause for it (could have been a number of things- heart surgery,
antibiotics, anesthesia, in eutero, etc) and it is common in even normal
healthy children. She said it is
uncommon for only one tooth to be effected, as both front teeth usually have
the same diagnosis but his adjacent tooth seems to be normal. She said his
whole tooth may not have enamel hypoplasia but we won’t know until his whole
tooth grows in. She also said some of his other teeth may have it, but so far
it is just the one! J This was good news. We were worried it was coming in
decayed or infected but it’s just a little softer than the rest. So we need to
brush his teeth twice daily to help protect the tooth and keep it healthy.
Right now, he has a frustrating and finicky appetite. But I
am incredibly proud to say that throughout the whole month of February he
tolerated bolus feeds during the day. For the average parent you never think
about it, but for the parent of a G-tube baby it is so nice to have him not be
attached to that darn pump! It really is a pain to lug around and my shins are
finally free of bruises for the first time since August 25th. As for
oral feeds, he drinks a little each day, three times a day. The most formula
has ever taken by mouth is 70 mLs. During the day we go back and forth between
a bottle & sippy cup. We use the bottle to measure the amount of his oral
feeding & bolus and one day he reached for the bottle and chugged it. So if
that’s what he wants, that’s what he gets because if there is one thing we have
learned since he has been born it is that HE calls the shots. So Cael is still
pretty inconsistent and unpredictable with feeding but he at least takes SOME
formula and SOME pureed foods every day. And that is what is important at this
time. He also loves Mum Mums, Puffs, Crunchies, Saltine crackers and non-dairy
yogurt melts.
His physical abilities increase daily. Everything I wrote in
the last post regarding his mastered physical skills holds true, with increased
confidence, strength, endurance and determination. So he can do everything he
could a few weeks ago but requires less effort, less support and fewer breaks. He
requires less help getting into a sit position, attempts to go on all fours,
claps his hands on command and pulls himself up completely on his own with his
pull-up bar in his bedroom. Just this morning he was standing on the floor
holding onto his Mickey chair when he attempted to move to the loveseat. He
reached his left hand first then moved his right hand onto the loveseat but
needed some assistant with his legs… it was awesome! He is just full of
surprises! He wants to stand… All. The. Time. Although he is learning his body
will not allow him to do this. I tell him his heart gives him some limitations
that he must abide by but he refuses to believe it as he moans, groans, and
shrieks at me when I force him to lie down for a break. And I tell Sean that
his brain is working too fast for his body. His frustration with his physical
limits is frequent; he wants to climb off our lap onto the floor, he wants to
crawl (he is very close and can do it well with help), he wants to reach for
objects that are far away, etc. He is just physically is not there yet but we
know it is coming soon as he is mentally ready. THIS KID NEVER STOPS AMAZING
US.
He is also big on communication now. He is constantly
reaching and pointing to toys and objects he desires, often pairing noises with
those objects. He shakes his head “no” in response to questions and this is
getting more accurate. He is slightly beginning to nod “yes” but when he means
“yes” he more often verbally says “Yah” and claps. He also pairs waving with saying,
“HI.” Wednesday he started saying, “Key” while watching Mickey Mouse Clubhouse
and playing with his Safari Mickey and Singing Mickey. He tries to say “Dog”
while pointing to Audee or Louee and he is trying to say “Mom” but it just
comes out as “Ahhh” or he says “Dada.”
Caelin has a cardiology appointment coming up on March 12th
so we will see how his heart is doing then. He also has his one-year check up
at his new pediatrician office on the 21st. It is so hard to believe
he will be one year old in 12 days!!!! Good gracious, where does the time go? There
were so many moments where time seemed to stand still, now that Caelin is
healthy and home time just flies by. Even though we wish it wasn’t going to
fast, we do love and enjoy every moment. If you would like to join in our
celebration of Caelin’s birthday and are far away, we would love for you to
send a card! His first birthday is such a huge milestone and so many people
have helped Caelin get to this point and we would love for you to send him a
card with birthday wishes and a little blurb about yourselves. I am going to be
creating a birthday card collage to show off at his first birthday and then
store them in a memory book. These are keepsakes that we want to be able to
share with Caelin when he is older and show him just how loved and supported he
has been since the day he was born! You can send the card to:
Caelin Clingan
PO Box 1631
Largo FL 33779-1631
Caelin will be walking in the heart walk in Tampa, FL on
3/16/2013. If you are in the area we would love for you to come meet him &
help spread awareness of his heart defect and other CHDs on the day after his
FIRST BIRTHDAY! Please help Cael and his team raise money to fight CHD and
spread awareness. If you are close to Tampa and can walk, please join our team
& help raise money! If you cannot walk, we would still greatly appreciate a
contribution. We understand times are tough, but EVERY donation counts and
helps our children fight the trying battle against CHD. Nothing is too small! Thank
you Barb, Dawn, Sue, and Michele for your contribution in honor of Caelin! http://congenitalheartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1050004&team=5403052
And an announcement to all of our Michiganders:
We will be in Michigan in June! We plan to arrive June 8th,
2013 and depart June 15th, 2013. So clear your calendars! We hope to
have a little meet-n-greet celebration at a park on Sunday, June 9th
for family, friends, fans, acquaintances & friends of friends to meet Cael!
J
We have not worked out complete details yet but just want to give everyone an
early heads up. See you all soon!
