Wednesday, September 10, 2014


Many of my readers have asked if I have taken a "break" from writing and I simply answer "Writing is my break". Life has gotten in the way and I have not been able to do what allows me the opportunity to escape in my head and share my thoughts. Yes, writing is my "break" from reality, my hobby, my "me" time and I have missed it, oh, so much.

Now that I am back at work, I have a lunch break again. As any stay at home Mom knows, there are no lunch breaks when you have children, especially very demanding, clingy (yet adorable) Pre-Schoolers. Most days this summer I felt accomplished if I did a load of laundry and felt like super mom if I actually found time to fold it.

So as much as I miss being with my children all day, every day, I do enjoy my time at work. It allows me to talk to other grown-ups, have a career, earn some money, listen to my music in the car and actually eat lunch without shoveling food into my mouth.

It has been an interesting summer with many highs and many lows. All in all, it was enjoyable. We took our first vacation as a family that did not involve other people traveling with us, a nurse or doctors visits. In June, the five of us went to Baltimore's Inner Harbor and enjoyed an Orioles game (or Oreo's as Emily and Ethan call them), the aquarium and the ferry back to New Jersey.


Caden received a few new pieces of equipment this summer which has been both beneficial therapeutically and socially. In July he got his Upsee which allows him to walk while strapped to an adult (it's much like when you stepped on your Dad's feet to dance as a child). Although he does not like being strapped into it, once in, he smiles ear to ear and loves "chasing" his siblings and "kicking" a ball.

Just a couple of weeks ago, he received his floor sitter which allows him to sit up while being nearer to the ground than he is in his KidKart. Because of this, he can be closer to Emily and Ethan when they are playing on the floor.

For Caden's fourth birthday, he received a special needs bouncy chair which, similar to the ones for babies, moves with any movement made by him. It's a little big for him now but he does enjoy the bouncing motion.

Caden has been doing well in his therapies. His one nurse can even get Caden to take about thirty steps in his gait trainer. His other nurse has him moving forward a bit while on his belly. He is using his hands more and playing more than I have ever seen before. 

Caden started his new school and after working out some glitches, things seem to be going well. They moved him to a higher functioning class which we are hoping pushes him to want to do things. Caden is a hard student to place because cognitively and socially he is more typical but developmentally he is about where a four or five month old would be. Despite this, I do feel he will be more successful in his new class.

Caden began therapeutic horse back riding last week. This is something we have wanted to do for a long time but hospital stays and various other set backs have not allowed. He seems to enjoy it although we had to order him a helmet because no helmet would fit his tiny head.

When I last wrote, I spoke of a few tests and studies Caden was having done. Surprise... surprise... both his sleep study and glucose breath test came back "normal". Again, according to Caden's test results, he should be an Olympic athelete.

The "big" event of the summer was our trip to Nationwide Children's Hospital in Columbus, Ohio. We were thoroughly impressed with the hospital, it's design and architecture, the level of care and the physicians and staff. We truly felt like Caden was their only patient. Before going out, Dr. Moussa and her team (G.I.) had scheduled one test and a couple of appointments. Once we saw her, she scheduled two more tests and an appointment with the dietician which all took place in the two days we were at the hospital. Caden had a gastric emptying study (normal), an anal manometry (for the most part...normal) and an upper G.I. (NOT NORMAL).

What we learned from this trip is that Caden's Nissen Fundoplication has slipped and he has hiatal hernia (see FEARS below). We also tweeked his diet a bit to balance nutrients but for the most part his blenderized diet was "approved" and they seemed impressed by my ability to create such a well balanced one. Dr. Moussa started him back on Periactin (to expand the stomache) and Zantac (for reflux). He also began a new medication called Bentyl (for irritable bowel).

I am not a hundred percent sure, but I think Bentyl might be the greatest medication ever. Now it could be just a "honeymoon" period but now that Caden has started the Bentyl his vomiting has been significantly reduced, he is sleeping much better and seems to be in less pain. The past month we have seen a wonderful version of our son; one we wish could last but are slowly beginning to see the "honeymoon" come to an end.


I mentioned above the results of Caden's upper G.I. study in Columbus. So what does this mean? Well, according to Dr. Moussa, Caden needs surgery to fix the slipped Nissen and repair the hernia. The big question is what do we do? His G.I. at CHOP agrees the Nissen has slipped but it seems he does not feel we should do anything about it because Caden's symptoms have not gotten worse. Dr. Moussa feels the herniated part of his stomach may be putting pressure on Caden's lungs and heart and although surgery is not eminent, we should not wait too long.

We will be heading to CHOP to meet with the "best" general surgeon there. This is not the one who did the initial Nissen but the one who comes highly recommended. We are no longer settling for "sloppy seconds" and only want our son to see the very best. What we need to decide is whether or not to have surgery and if so, do we redo the Nissen or have it reversed.

Because Caden has a connective tissue disorder (which we did not know about at the time of the Nissen in 2012), surgeries may often fail and hernias can be quite common. Our fear if we redo the Nissen is that it will slip again. Our fear if we reverse the Nissen is that Caden will begin vomitng as much as he did back before the Nissen and if we do nothing, what could the hernia do to his heart. These are all concerns we must discuss with the surgeon.

On top of this, Caden's tonsils have been very swollen and red as of late. Back in the spring of 2013 he had an adenoidectomy but they kept his tonsils in. I am now trying to get him in to see E.N.T. at CHOP to discuss whether or not his tonsils need to come out. He is also going to need another eye muscle surgery in the near future. This could possibly mean another three surgeries in the next couple of months which would put him at fifteen surgeries at four years old.


Caden has a new symptom. He does not respond typically to pain. What this means is that Caden can bump his head and he will often laugh or not respond at all. Where this becomes concerning is that he has begun becoming self abusive. Although we do not think he does it on purpose, he is scratching his face and banging his head. This requires him to have constant supervision. We have to watch that his brother or sister do not accidentally hurt him. We have found him face down in his mattress at night. He does not let us know when something hurts which even new born babies can do to tell others they are in pain. This is often a symptom of dysautonomia and one I am very concerned about.

My children celebrated their fourth birthday in August. I am watching them grow and come into their own. This is a wonderfully, beautiful thing but something that makes me sad. Not so much because my children are getting older but because they are growing apart in the sense that, although they were all born at the same time, the three of them are worlds apart from each other.

Emily is a typical four year old. She is independent, mature and sweet. Now don't get me wrong, she has her moments, but we are very lucky to have such an amazing daughter. Because she is doing so well, I often expect too much from her and am afraid she is going to grow up too fast. I wish I had more time for just the two of us, and although I know she understands, I can see how much she loves (and needs) those "just about her" moments.

Ethan has had a rough summer. He has a lot of anxiety and fears. He is not sleeping at night and wakes up screaming for Mommy. He does not trust that I will be there and I can understand why. I have spent many nights in the hospital with Caden away from him and his sister. He has his own share of "special needs" and  I have not been there enough for him in the past. Ethan is my "two year old" who needs a lot of TLC. Despite this, he has the most amazing sense of humor and can be the sweetest boy.

As for Caden... he is my "baby". I remember when I first learned Caden may have C.P. and I went to the internet to find advice and support. One mother wrote that the one "good" thing about having a child with C.P. is that you get to hold onto your "baby" longer. Caden is my cuddler. He doesn't run from me, hit me, scream at me or demand me to do things. What makes him happiest is being held. Holding Caden is my "happy place". Although I don't get to do it enough, when he is in my arms I feel complete; I feel safe; I feel more love than I ever thought possible. 

It is hard to watch the others grow up while Caden, for the most part, "stands" still. Where the three of them were once on a level playing field, Caden has been left behind to sit on the "bench" watching the other two. Caden is part of everything we do. We take him everywhere. I fight to allow people and places to let him do things. But the world is not built around kids like Caden. All too often, Caden is left to watch the others and because I know there is a very well aware little boy inside his broken body, it breaks my heart.

1 comment:

  1. Hey there! I just found your blog via Love That Max and thought I'd reach out. My situation is much different than your Caden's, but I'm part of B/B/G triplets too...I have CP and my brothers are "typical." It was frustrating having to sit on the sidelines and watch them sometimes, so in that regard, being a triplet with a disability was hard...but at the same time, there's something beautiful about having two siblings the same age to support you!! :)