Everything He Gets Will Be Given In Love

Saying good-bye to Great Grandma!

Our 7 Month old. 

Lovin' on his Mickey Mouse!

Not so happy before bath time!

Getting his feet!

BIG laughs!

MmMmM... these taste good! 

Uh-oh! Who me?

He doesn't have any Tigers gear that fits him so this will have to do! GO TIGERS!!!

Last Friday, Donna from the Family Representative Program at All Children's called Mommy to let us know Caelin's photos from Flashes of Hope arrived. "Flashes of Hope is a 

non-profit organization dedicated to creating powerful, uplifting portraits of children 

fighting cancer and other life-threatening illnesses." This organization visits All Children's Hospital every other month, brings professional award-winning photographers, and takes pictures of children free of charge. What an amazing company! Anyway, Donna said she would have them mailed out to us. Before today we hadn't yet received them so Mommy called since we were going to be right down the street from the hospital and Outpatient Care Center. Donna contacted the Flashes of Hope representative and he still had the pictures. He ran the photos over to the rehabilitation building and delivered them to Caelin's speech therapist's room. What a marvelous surprise this was and such an admired and appreciated gesture! How gorgeous are these photos? I am in love! =)

Being in the hospital we were used to unbelievably remarkable understanding, compassionate, loving and respectful people. These people became our family. They helped us, supported us and loved us through THE WORST days of our lives but also some of the very best. In fact, many of you are reading this now & to us, you will always be family. We will always cherish you and the love you show toward our family. There may have been days where our gratitude went unexpressed but please know we are so thankful for every moment dedicated to our son and to us. Thank you!

No, I do not have a medical background but yes, I have a college education during which I learned research skills. I was born with something called common sense (many appear not to be). I also understand the difference between normal and abnormal. These two things are opposite and, therefore, cannot be compared but contrasted.

Sometimes I wonder if some (NOT all) of these outpatient health professionals have seen the inpatient side of the experience? And even then, can they empathize with the families as they watch their children struggle and fight to live? When they compare a normal child to a child who has been hospitalized for 5 and a half months, had their chest cracked open 4 times and been moments away from gaining his wings and reaching heaven's gate... Do they truly understand it is a comparison that it is impossible to make? Especially at the young age of 7 months. Or do they think that because he is out of the hospital that suddenly everything is all better and he is somehow normal? Because it's not. And he will never be normal. His blue eyes and bright smile may fool some but his scars are very real. They are an every day reminder of his resilience and determination to live but also of his fragility.

And now,  I can't help but feel frustrated, disappointed and angry when a distant outsider, a stranger- not a friend or member of our family- says that we need to work on getting our son a little less detached so he will be social in the future. Or that we need to work with him more so he doesn't fall further behind developmentally when nearly every moment of his awake time is spent doing different exercises, stretches, movements & activities to try to build muscle and strength that he has never had. In fact, he probably burns too many calories in a day because it is TWICE AS HARD for his body to do these things because his heart is not whole nor does it function as properly as a normal baby's heart. Some exercises are more difficult and more exhausting than others and I am not sorry that I refuse to over-exhaust him or keep him in a position when he is screaming so hard he can't catch his breath. I love working with him and watching him grow- in fact there is nothing more special to me than this time I spend with him. Thinking of how there were so many days that I thought these moments would never come for Caelin and I. Since the day I found out I was expecting, I wanted to dedicate my life to loving and protecting this little being inside of me. I quit my career so I could do this. Being his Mother is the best title I have ever held and I have never been more proud than when I am watching him overcome his countless adversities and heal, grow, & progress. But I will not force him to put unnecessary stress on his body and heart at this point in time- turning purple with a salty river running down each cheek is where I draw the line.

No, he cannot hold his feet in his mouth or hold his head up off the floor for minutes at a time, or hold himself up, or rock on all fours, or crawl, or pull himself up, or stand. It has been just 54 days since he was discharged from the hospital for the first time ever. This includes a 6 day re-admittance for vomiting & dangerously high levels of liver enzymes. That is 48 days out of the hospital. 13 of these days were interrupted by some sort of follow-up appointment. So he has had 35 uninterrupted days of "normal living." In those 35-47 days he has made what most would classify as admirable/awe-inspiring/ marvelous/ wonderful/amazing/remarkable/astonishing progress. He reaches for toys with both hands or one at a time. Every single object he can get his hand on, he brings to his mouth. He grabs his binky, even when it is out of sight, and puts it in his mouth on his own- while awake AND while in bed during naps and overnight (That's right! We don't even have to get up to give it to him while he is sleeping a lot of the time because he finds it in his crib himself. Yes, he knows it is there even without seeing it & he finds it on his own). He also insists on holding the bottle and sippy cup on his own while practicing drinking. He is starting to wave, gives high-fives, and is beginning to clap. He also splashes with both hands and feet during bath time. He loves to pull smaller toys (balls) out of larger toys ( boxes). He has complete neck control. His core strength has improved and he is now starting to try to pull himself forward & he reaches for his toes. He can sit in the Bumbo unassisted and play with toys on the tray in front of him. He sits supported and enjoys playing his piano in front of him. He can sit on his own while leaning forward, his weight bearing on his arms against the boppy for a while & without the boppy for a couple of seconds. He rolls from side to side ALL THE TIME. He has rolled over completely on his own twice, once from front to back and once vice versa. He kicks his legs like crazy! He will sometimes kick and laugh for an hour as we are playing and practicing using and mastering gross and fine motor skills. He can lay on his tummy and lift up his head; he can turn his neck from side to side to track an object while having it elevated; yes, this is one of the more difficult tasks as he has only been able to really do tummy time for 4 weeks out of his whole life. But he CAN do it. He does his jumper once a day to increase leg strength and help get him to put weight on his legs because he does not like to do so. No, Cael's jumper is not used as a cage or babysitter. He also laughs more & babbles. There are several times where he engages in serious conversations with Mommy & Daddy using appropriate facial expressions to match his tone although we have not the slightest clue what he is saying.

This progress has been made because of Mommy & Daddy's persistence with and love for Cael. We did have the wonderful Abby & Judy show us some exercises and stretches to do with Cael before he left- they helped throughout his whole hospitalization (thank you, ladies!). But since 8/25 we are the ones who have followed through on them. Since he has been discharged, we are the only ones who have worked on his developmental progress with him.

In addition to this, he now eats by mouth at least three times a day. When he was in the hospital we were allowed to give him ONE mL of milk via pacifier twice a day- that was it. If his schedule clashed with Speech or he wasn't cooperative for her, he didn't get any more oral stimulation.  Now, in the morning he gets cereal & a bottle. In the late morning he gets fruit (5-15 mLs) and a bottle. In the evening he gets a vegetable (5-15 mLs) and a bottle or sippy. From the bottle, he drinks at least a couple mLs EVERY time. He also gets his feeder net with frozen blueberries. All of this is going on while he is continuously G tube fed. Yes, he has made this much progress while not experiencing "hunger cycles" because it is a part of our routine now & we know how important oral feeding is, especially as he gets older, so the experiences now are irreplaceable. All of his current practice will make the transition easier once he is on more condensed G tube feeds.

Soooo...
I will cuddle him as much as I want. I will love him as much as I can. I will protect him with all I have. I will not allow others to judge or belittle him, me, or my husband based on isolated visits outside of Caelin's new-found comfort zone. He is our miracle and our warrior. Everything he gets will be given in love & we will ensure that each and every day.

I don't think it's too much to ask for help and assistance instead of judgement and criticism. Perhaps I'm wrong? Nope, I don't think so.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

So over the last couple of days Caelin had a physical therapy evaluation and another speech appointment. Speech went really well... Caelin seems to adore his therapist and she is very encouraging. Thank goodness. 

Mommy to Caelin to the library for the very first time on Wednesday. There were about two dozen children between infant and 4-5 years. This was out of Mommy's comfort zone, so we left. We are hoping to return with Daddy at an earlier time with Daddy & find a little nook where we can enjoy some books together and let Cael people watch. Cael is especially interested in little children and other babies. Once he spots them, he locks in on them. We know he would love to interact but we are so afraid of him getting sick again so we are still keeping some distance between him and others. Actually tomorrow we will be visiting a friend who has three older children (above 7 years) & I am interested to see how he responds to them. 

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!

Hi Ho, Hi Ho, It's Back to the Hospital We Go.

So the last blog update was written while we were at home. Unfortunately this one comes from All Children’s Hospital once again. Many of you also follow Caelin’s Journey on his Facebook page, and if you do then you already know of his trip back to the CVICU but for those of you who do not, I will explain how he got back here and how things have been the last week.

Cael feeling festive on Monday!

Watching Mickey with his Mickey on Tuesday.

Smiley boy on Wednesday with Mommy right by his side.

Believe it or not, this was in between vomiting #2 and #3. He just got a bath but threw up soon after. 

Such a cute boy in his hospital gown. <3

Got his peripheral IV & just arrived in the CVICU.

Looking out the window Thursday afternoon.

Practicing sitting up with Daddy on Friday while watching Mickey Mouse!

Playing with his Mickey!

Fast asleep on Saturday. Today was one of his least energetic days.

Fast asleep with Daddy Saturday night.

Sunday, another day with low energy. Sporting an oh- so- true, tee shirt!

Kisses and cuddles with Momma.

Not sure how he's feeling about being here. (His shirt has a guitar & says, "Chick Magnet.")

Definitely teething.

There is a smile! Finally!

Sleeping on Momma Tuesday morning.

Fast asleep during his afternoon nap. He looks so comfy!

Caelin had a pretty rough Monday, a decent Tuesday, and a horrible Wednesday. Tuesday night Caelin did not sleep well at all. Mommy and Daddy were up with him frequently trying to get him to calm. Finally just before 3:00 AM he made his way into bed with us (the earliest we had ever brought him in) but it didn’t help like normal. He was still pretty fussy and restless. Daddy’s alarm sounded for school just after 5:00 AM and only minutes later did Cael wake up vomiting. We figured he needed his tube to be vented so we let out all the air and it seemed to comfort Cael. Before 2:00 PM Caelin threw up three more times. After the third time throwing up, Mommy called the Pediatrician and left a message. And right before she spoke with Daddy, who was at school, Caelin threw up again. After discussing his vomiting and still not hearing from the Pediatrician, we decided to call Caelin’s Cardiologists to see what they recommended. Ultimately they told us to hold his 9:00 PM dose of Lasix (to not dehydrate him extensively) and if he continued to vomit throughout the night to bring him to the Emergency Center at All Children’s. All day until bed time, the only place Caelin was content was in Mommy’s arms. It did not matter if she was next to him, he wanted to be as close to her as possible. So he went to bed but slept lightly and fussed a little while asleep. So at 1:55 AM when Mommy’s alarm was going off to give Caelin his nighttime medications, she walked in his room and he began to stir. With the subtlest movement, Caelin started retching and gulping. Afraid to leave him in case he started vomiting, Mommy quietly but quickly turned toward the door to go grab his vent to let out the air from his tube. Before she could take two steps Cael’s noises turned wet and she knew it was coming. He projectile vomited all over. She yelled through the monitor to Daddy and he darted in the room. He paused the feeds, grabbed Cael’s vent, and helped clean up. As we contemplated taking him to the EC, Cael’s feeds were still paused but he was sad, tired, and looked ill. We decided if he threw up again, we would take him. Luckily Mommy had packed everything including formula and medications after speaking with the nurse at the cardiology office because before Daddy even finished his suggestion of holding off leaving until one more time, Cael threw up again. Then again. So on our way we went. Luckily Cael kept everything down while in the car although we were prepared with a bib, a blanket, and burp cloths. We walked into the Emergency Center and as Mommy was filling out the admission sheet, Cael threw up a little bit again and had dry heaving. Upon seeing him do this, the guy at the front desk sent us to the back where Cael was weighed and got his blood pressure taken. Then we were directed to his room. He was seen by the nurse then the doctor and ordered to get a belly film (X-ray). The X-ray looked good but the doctor wanted blood work. It came back in only a few minutes and showed his liver enzymes were dangerously elevated. They were over 1,000 (one thousand) when they should be around 40 (yes, forty) apparently. As a result of this test, he had a belly ultrasound performed. Caelin was such a great boy during all of this, especially the ultrasound! He moved and rolled cooperatively and let the technician get some very good photos. It was during this ultrasound the tech noticed he had some sludge in his gallbladder and it was a bit enlarged, but his liver looked normal. The combination of all of these things led to the decision of his admission. At first he was to be sent to PICU but at the last minute CVICU took him instead. Thank goodness! We were nervous to be in a different part of the hospital where they were not as familiar with Cael (although the same cardiologist and a familiar ICU doctor would have seen him). So it was definitely great for him to be in a place where he recognized voices and faces. It was also great for Mommy and Daddy because it was more comforting to have nurses and nurse practitioners we know, trust, and adore.

Here are the posts we wrote on Caelin’s Journey. They pretty much summarize the details of his stay:

Thursday 9.27.12 (Morning) So the GI docs seems to think his throwing up & gallbladder/liver issues are viral based on his other enzymes and levels being normal- the liver ones are the only ones that are high but they are VERY high. They are going to run a few viral cultures but it takes a few days to get results. So we are thinking he will be here for at least through Saturday. He is not allowed to have formula for 24 hours so he is just on IV fluids- they will retest his tolerance tomorrow. He is getting an echocardiogram today, too.

Thursday 9.27.12 (Evening) We're still hanging tight, waiting on results of all the cultures (will take a couple days) & Cael's being monitored. They still plan to resume feedings tomorrow morning, but possibly starting with Pedialyte.

Friday 9.28.12 Caelin had a decent night even though he slept lightly. Right now he is doing alright- he has been very tired for most of the day but still flashing smiles. His liver enzymes went down a little while his billirubin level more than doubled but the docs still do not think anything is wrong with his liver or gallbladder & are focused on it being viral. We convinced them to start Actigall though (helps absorb fat & hoping it will break down the sludge) as a prophylactic step instead of having to be reactive in case they are wrong about his vomiting being caused by a virus. He is on 10mLs of Pedialyte now & they are increasing every 4 hours by 5 mLs to a goal of 35. If he tolerates it, they will switch to formula, if not we are not sure what their plan is. With how he has been since being on 10mLs, I do not think he is going to tolerate full volume... But we will see. His blood pressure is also high so he is now maxed on his Captopril (2.0) but his echocardiogram yesterday looked good. The cardiologist said his Tricuspid Valve regurgitation has ever so slightly worsened. :/ We’re still waiting & hoping for a real diagnosis and a resolution so we can get back to being a family at home.

Saturday 9.29.12 So today Caelin woke up full of smiles and we thought for sure he was feeling better. Then 10:30AM came and he pretty much slept from then on. When he did wake up, he was very lethargic and out of it. Because he tolerated full volume Pedialyte in the morning, Cael was put on full formula feeds at noon but didn't tolerate them. He didn't throw up but when we vented his tube at 4:00PM he pushed out 50mLs which is an hour and a half of feeds. As a result, they have reduced him to 1/4 formula 20 calorie & 3/4 Pedialyte. This is only because we pushed for him to keep something in his belly for nutrition and to get him to poop to hopefully help the Jaundice (he woke up with yellow eyes & skin and an even higher bilirubin level this morning). They wanted him to be on just IV fluids for another 24 hours and then restart his formula at an even slower rate because they are still hung up on this being a virus. Even if it is a virus, we did not want him to be restricted to only IV fluids for another 24 hours. The GI doctor is coming to talk with us in the AM about everything since not one GI doc has come to see him since he's been here, only the GI nurse practitioner. We really do want this to only be a virus but our instincts are telling us it's more... Praying for healing and recovery for our baby boy. We miss his energy and personality & we miss cuddling and playing at home.

Monday 10.1.12 Yesterday morning the GI doctor came and apologized for not coming sooner. (We were told she said Caelin was a priority for Friday night/Saturday and she would be in to talk to us… but she never came). So Sunday morning she reassured us that because his liver enzymes are still coming down relatively quicly and his bilirubin was ever so slightly lower than Saturday, she still really feels like it is just an unusual virus he caught. Unusual meaning he did not have a fever, diarrhea, or increased white blood cells and it seemed to really only affect his liver. They think the sludge in his gallbladder is nothing to worry about & say it is actually quite common and most people who have it are asymptomatic. Because today is Monday, a new ICU doctor (Dr. Pettigrew) and cardiologist (Dr. Wilmot) are on this week and they, too, believe it is viral. We truly do hope they are right and want to trust them as they have been two of our most favorite doctor’s during Caelin’s journey at All Children’s! Yesterday he was put on half formula (20 cal) and half Pedialyte and he tolerated it well. He is now on 3/4 formula (20 cal) and 1/4 Pedialyte. He will be on 3/4 feeds all night and if tolerated, he will be put to 100% formula at 20 calories (his normal diet is 24 calorie) in the morning (Tuesday). He has been having spurts with more energy but is overall still feeling under the weather and sleeping more. Most of the viral cultures have come back negative finalized. But it would be next to impossible and impractical for them to test for every possible virus. He will get more labs done in the morning to test his levels to ensure they are continuing to lower (they gave him a break from blood draws today). Also, his bowels are finally moving again so hopefully he gets the waste and bilirubin out of his body so his Jaundice clears (he was not put on lights because it is not alarmingly high & they wanted to see if pooping would help it). On a good note, his temperature, heart rate, respiratory rate, oxygen saturations, and blood pressures have all been good. All of these vitals being in normal range are also reassuring! =) Thank you all so much for sending such wonderful, encouraging blessings, thoughts and prayers! Hugs & Love from Caelin!

News from today (Tuesday 10.2.12): His labs this morning showed two of his liver enzymes are continuing to decrease while one increased, along with his bilirubin (up to 4.6 from 4.0 Sunday). The doctors during rounds said they are not concerned with the slight increase in these numbers even though he has stooled twice because he is not yet on full, proper nutrition. They said that these two numbers are often the slowest to come down and it may take a couple weeks of adequate nutrition and regular bowel movements to make the numbers level out back to normal. Caelin is teething but we are instructed not to give him Tylenol because it can negatively affect his liver. Yikes! Orajel it is, if necessary! His little left, front, bottom tooth that began making its appearance is finally becoming more prevalent. It is really cute watching him feel and play with it with his fingers and his tongue. One of the surgeons or a PA was supposed to come by Cael’s room today to check out his sternal wires placed from his Glenn. He has two that are very close to the surface of his skin and we are nervous about him rolling over and doing increased tummy time with him in fear of one of the wires popping through and poking a hole in his skin and in turn, causing an infection. Neither a surgeon nor a PA was able to make it in today so hopefully they will stop by tomorrow to give us their opinion and offer any advice. Although the doctors have labeled Caelin’s sickness as a virus, we discussed the possibility of it being caused by inappropriate medication dose (we got refills of all his meds at a different Walgreen’s location the Friday prior to him getting sick and they had to adjust the compounding ones for some reason for them to be covered under our insurance). Although the actual concentration of the medications cannot be tested, one of the pharmacists from All Children’s (ironically the one who overdosed Caelin on Clonidine back in June) called Walgreens to get the prescription dosing and compounding details to ensure they were all appropriate. Apparently everything is cleared and the medications should be fine. The doctors still discussed writing him all new prescriptions and getting them filled at the original Suncoast Walgreens where we had no issues with his compounded medications before (and this is where we will get all his meds in the future just for peace of mind). We also discussed the possibility of his sickness being a reaction to his first ever immunizations given on September 20^th. This was brought up because Dr. Smith (ICU doc on Saturday) held his Synagis (for RSV) shot because there was a 1% chance it could negatively affect his liver. Unfortunately, the only way we will know this for a fact is if it happens again with his next immunizations, which I am COMPLETELY DREADING by the way. L One good bit of news from today is Caelin had A LOT more energy! After his afternoon nap he was nonstop kicking, playing, smiling, and even let out a couple giggles. It is so great to see his little personality shining through again! We have missed it so very, very much! 

 We know Caelin is a fragile kid and we have heard many instances of children with heart defects needing to be hospitalized for infections and viruses but this really solidified it for us. We are so nervous to take him places in fear of ending up back in the hospital, but at the same time, we do not want him to live a sheltered life. We will have to work on finding him that happy-medium, but for now, home it is with outings only as necessary!

Several people have inquired about the Gerber Generation Photo Search 2012- we have not been personally contacted at all but this afternoon Gerber posted an update saying they would be revealing the 6 milestone winners on or before November 1^st. On Gerber’s page they also posted that they would be contacting the family of the winner by phone, e-mail, or letter. I am getting butterflies in my stomach, hoping Cael has been one of 6 chosen. But regardless of the results, in our eyes he will always be the chosen one.

I do have to share, whether we are in the hospital or at home, tonight I recognized a feeling like no other… there is something truly special and heartwarming about watching my son rub his eyes, grab his Wubbanub and put it in his mouth, then roll to his left side while swinging his right arm over his eyes. In the comfort of my presence he drifts off to sleep slurping on the end of his Soothie. I think, “When did he get so big?” Then I wisper, “I love you, goodnight.” Now the day is complete and I anxiously wait for the next to begin. Especially tomorrow as Caelin should be headed back home in the afternoon as long as he is tolerating full volume 24-calorie formula. As always, thank you for your prayers, especially during Caelin’s difficult times.