Randomness...

It's been a busy week.  Tripp hasn't been the greatest he's ever been- just still junky with a constant runny nose and on and off low-grade temps.  We went to Dr. Defusco (pediatrician) on Wednesday.  He is really due his 15 mo. shots, but instead she did some wound cultures on some of his draining sores and we talked about nutrition- thank God.  So she pretty much said that he is "failure to thrive."  Which means he's not growing like he should be.  Which I knew- but still isn't easy to hear. 

 My frustration is- why hasn't anyone been more concerned about this until now??  It's not really Dr. Defusco's job, you know.  I've been trying to find a decent nutritionist for months now... and no one is interested in taking the time (yes, I admit- it takes A LOT of time).  But that's their job, right?  Well up until now I've been giving him the Pediasure because the dietician SWORE he was getting all the nutrition he needed with it.  Well, yeah sure... a NORMAL child might be getting all the nutrition he needs, but once again- Tripp is NOT NORMAL.  

Why haven't I had the chance to deal with it and do this myself before now??  Well, because I've pretty much been focused on keeping him alive- you know... trach issues, fever, wounds, corneal abrasions, contact changes, eye surgery, preventing infection... stuff like that.  So, sure the easy way was to trust the dietician and shove 5 meals of 120 calorie-vanilla MALT down his feeding tube.  Well, I'm done with that.  I took it upon myself to start blending his food.  Dr. Defusco totally agreed with this.  We sat down and realized that he was only getting about 720 calories a day and not nearly enough protein.  First of all, he uses most of his calories to breathe and TRY to heal... and the little bit of protein he's getting is surely not enough to grow and heal (not saying his sores would even heal with more protein, but at least they would have a chance).  It's going to take me a while to get this together and to be comfortable with it- but what I realized is that I can't hurt him in any way by doing this-  if anything he will be getting more calories than before.  

So I called Patrice, Jonah's mom.  She has been blending Jonah's meals for a while now and has beautifully organized spreadsheets that she sent to me.  I think it's cruel that we can't live closer to each other to be able to help each other out... but thanks again, Patrice. I don't know what I would have done without your organization skills :)  

So far, it's been going okay.  I'm still experimenting and trying different things... but I'll get the hang of it soon.  Right now, I am using a Magic Bullet to blend, but soon plan on purchasing a super duper Vitamix!!  That way I can blend just about anything.  Right now I'm doing a random mix of things like avacado, baby meats, steamed vegetables, yogurts, fruit, protein powder, aloe vera juice, barley green, flaxseed oil... anything nutritious, high-calorie, and high protein.  He doesn't have NEAR the belly-aches he was having before.  Now we will just have to see if he starts gaining a little more weight.  He was right at 20 lbs. on Wednesday and has been about the same weight for a few months.  I'm also able to get more calories in him in a day (still the 5 feedings, though... because he can't tolerate high volumes), so I am able to run just water in his feeding tube at night.  That's another thing... I was shoving so much Pediasure in him, by that the time I was finished feeding him, he was too full to flush with a bunch of water.  But he definitely needs a great amount of water because he's losing so much fluid through his wounds. 

Anyway, so that's where we are on the feeding stand point.  I should be getting the results of his wound cultures in by Monday.  I'm pretty sure there will be something there and that we are going to try and have to get through a whole round of antibiotics.  Especially since he's been running a little fever.  I think we just need to at least try and see if he can get through one round and see if that helps him at all.  If I can keep the probiotics in him... and this new diet, maybe we can fight the diarrhea to a point where it's somewhat tolerable.  

I've been in pretty much a "closet funk" lately, I think.  I just feel like the older he gets, the more he realizes that he's different.  Call me crazy if you want... but I think he knows that he "looks different" and that he can't talk and we can... and that he has to be wrapped up and we aren't.  It's tough.  And it's just getting harder to see other babies and to be around other children.  Not for my selfish reasons, but just because I hate that he has to endure all of this- all the pain, the sitting inside and not being able to enjoy things that normal kids can.  When I rock him... which is A LOT-  I just stare at him, not even being able to imagine how much pain he is really in.  I know he looks like the happiest little baby from his pictures and videos (and don't get me wrong- he's happy most of the time).. but that doesn't mean he's not in constant pain.  When I look at his little finger tips, and his toes... or the sores in his mouth and around his feeding tube (I could go on for days with the spots that hurt him)- it HURTS me so much.  And yes I'm strong, yes I can deal with it, yes I will survive-  but sometimes I really feel like I'm headed to a mental institution.  It weighs on you when you watch your child suffer every single day and you can't do a thing about it.  Yes, I have a lot of patience... but there are times when I literally want to punch my fist into the wall and say a million really bad words.  It's just something you can't even fathom unless you live it every single day.  Okay... I'll shut up.  

On a brighter note, I'm pretty sure my beautiful sister- Tripp's nanny- is coming down for a visit in September (maybe if I write this, she will feel really guilty and HAVE to come).  I am sooooooo excited.  She's only been gone since June, but I feel like it's been 2 years since I've seen her (we have an extremely close family)... She's in Minot, ND.  Yes... that is about 28 hours from here.  Not just a hop, skip, and a jump away.  So please, Nanny, if you're reading this.  Book a ticket, already :) Thanks, Uncle Mike... we miss you too, by the way. 

Oh yeah... and when we went to the pediatrician, she "re-scared" me about all of the things that start going around when the school year starts.  Sooo... if you are sick, if there's a 10% chance you could be sick, or if there's a 10% chance that you've been around someone that could be sick.... we love you, but please... kindly don't come see Tripp.   This is NOT something I like doing... but we need to be very cautious all the time and especially during school time- that he does not catch anything.  From chicken pox to just a cold.  Either could kill him-  yes that's harsh.... and yes it's the truth.  SO if you do come see Tripp- please make sure you're germ-free as can be- and don't forget to wash your hands :)  We are trying to teach him to "sign" this... so I don't have to keep reminding people :)

Well, that's it for now... sorry no pictures.  I'll try and do a "picture" post within the next few days.  

OH, and I got my book Bella's Blessings in today.  I've already read 3 chapters.  DID YOU BUY YOURS YET??  See the below post!!!

Love,