Enzymes Do More Than Just Digest Food!



These are what the "beads" look like in Cade's enzymes.

 

We have known, since Cade was 6 weeks old, that he would have to take pancreatic enzymes with every meal and every snack to help him digest his food.  The mucus has blocked the pancreatic duct from being able to get the natural digestive enzymes to his food.  We have also known that we needed to do a finger sweep of his mouth to make sure that none of the "beads" from the capsule were still in there when.  When Cade was a baby we would open a capsule and dump the beads into a spoonful of applesauce.  We used to get some really weird looks from people when he was a baby.  Here we were feeding him applesauce with a spoon and giving him meds.  When we would put salt in his bottle...... well, you can imagine.

 

He has been doing really well, for the most part, taking his meds whole and swallowing them.  The other day though he was keeping his mouth closed after breakfast and was talking through clenched teeth.  I finally realized what was going on - he had decided to become a chipmunk and store the pill in his cheek.  The outer capsule disintegrated and the beads were breaking down the inside of his mouth!  Because his mouth hurt, obviously, he had a few days where it was almost impossible to get him to eat, let alone take his meds that he HAS to have. 

Through all of the pain in his mouth, his love for cat food never really went away though.  I wonder if he needs to have enzymes when he eats it???     

SAHM

A normal day around here

I saw an article about a SAHM.  WTH?  SAHM took me a while, like LMK, IDK, IDC (Aubrey was the 1st to send me a text and used IDC.  I thought she misspelled IDK.).  SAHM = stay at home mom, ohhhhh.  Yep, that's me now, not what I had ever planned to be.  I couldn't wait to retire, but quitting to being a SAHM is just not the same.  I didn't get to finish my career.  I thought someone who got to stay home with their kids had one of the easiest job in the world.  I was home during the summer with the kids which was no big deal.  We played a lot, went swimming, hung out - being home wasn't my "job."  HA!  Being a stay at home mom is tough.  When you see the "soccer" moms on tv that look perfect and have a full breakfast, lunch and dinner ready for their family - I'm sure they exist somewhere, but definitely NOT here!  I don't have time and my kids would wonder what was wrong with me.

It has taken some (ok A LOT) of getting used to, but when the boys say they like being with mom all day and the older kids like knowing I can bring them lunch or whatever they may have forgotten at home that morning, it makes it worth it.

Well, Cade just pushed the button to END his vest before it was finished (I guess he has other things better to do) so it's back to SAHM for me.

Meds suck

I'm sitting here with Cade while he's doing his after-nap treatments.  It's during the afternoon treatment times that I have the most "down time" if you want to call it that.  Both of the little boys are still not awake from their nap, the big kids are still at school and it seems like this is when I have the most time to think about things.  Today as I was getting everything ready for the 30 minutes - the neb cups, mask, breathing meds, chocolate milk (Cade's with meds in it), enzymes, and a snack - I thought how much his enzymes suck (I really wanted to say they are a pain in the ass, but I won't).  Ya, ya, I know, it's only 1 pill and it keeps him healthy and he would be in really bad shape without it and all that stuff, but............ for Cade it's like the size of a small boulder and in the back of my mind I have to wonder if this is going to be one of those times where it is a struggle to get him to even take it.  There have been times when we watched him put it in his mouth, take a drink and we assumed he swallowed it, only to find it in his chair with him after he has finished eating.  This 1 pill has to be taken every time he eats or drinks something.  The enzyme works for about an hour, which is fine except for times like now when he kids get home from school an hour after he has taken his pill, are eating a snack and Cade wants some too.  We don't want to give him too many enzymes in a day especially since he is on a rather high dose, for his age, anyway.  So the dilemma is, do we give him another pill or wait since we will be eating dinner soon and he will have to have one then?  This is how it kinda is throughout the day - when did he have his last enzyme?  Was it within an hour or was it longer?  Does he need another one?

Yes, I am truly thankful that Cade does have all these meds.  I couldn't (and don't want to) imagine how life would be for him if he didn't have them.  I'm just having one of those moments where I would do anything for him to not have to go through all of this. 

Treatment Time



Having some fun and taking selfies while Cade's doing his treatments.

While we are sitting here doing Cade's vest and breathing treatment, I started wondering just how much time do we spend in a year doing treatments.  We do his treatments in the morning after he wakes up and in the afternoon after he gets up from his nap.  Right now we spend between 15-16 days a year total doing treatments!  I don't mind getting to spend the time with him but I know he would rather be doing just about anything other than sitting there.  The big kids are really good about hanging out with Cade while he's "hooked up".  Some days are easier to get him to want to do his treatments, some days are just a complete struggle.  Cade has figured out how to turn his machine off and has no problem with doing so.  He has his cheering section when he finishes and will call you out if you're not clapping for him!