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.

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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.