CF Scare

For the last month and a half, we have living with the scare that little man has cystic fibrosis effecting his pancreas.  Did you even know there was such a thing? I sure didn't!

It has been pretty scary.  CF means a life of illness, pain, and an early terrible death.  I haven't slept (not that little man would let me anyway), and have been sick with worry.

I was pretty ticked off to find out, when I called to schedule his testing, that the craptastic GI we saw before this new one, tested him for it, but didn't tell anyone, or put it in any notes.  A YEAR AGO! They found it in the notes from the lab.  I am upset that he didn't tell us that he already tested for it, or that he didn't have it.  I am greatly relieved that he does not have it.  The GI thinks he still has a pancreatic disease still, just one that is less terrible than CF. 

More to come on that...

In the mean time, no church til Spring, no Nursery for another year, he'll be on special formula only, for AT LEAST 6 more months (2nd birthday), but probably until he is 4, and he is now on 10, yes, 10 meds daily.  My poor little man!

Coconut Milk

I've talked a bit about Little Bear's allergies.  In my last post I talked about how his formula has soy in it (I found that only 1 baby formula doesn't have soy in it, and we tried it, and failed), so I decided to try coconut milk, then with the expense of it, decided to give it a try and make my own.

Well, it was interesting, that's for sure. What should have taken me about 30 mins or so (according to one blog), took me no less than 2 hours.  Little man screamed and cried at my feet the entire time.  My sweet Munchie Moo, well, she tried to "help".  Bless her little 3 year old heart.  Let's just say, it wasn't much help. :)

Anyway, I chose to use a fresh coconut, and drain and peel it myself, since I figured it would not only be more cost effective, but also fresher=better for him.

*Side note, I just had to clean up a huge glass of milk from my couch, Little Bear, decided he was going to pour it all over. Yep, that just happened*

So, where was I? In the time it took me to drain, split (that was a good frustration relieving part btw), and peel the coconut, my hands were raw, I had a huge cut on my finger ps, I could have flown to NYC.  I decided to add some extra coconut oil to the mixture, along with all the coconut water I drained from the coconut, and 2 cups of boiling hot water (hot water draws out more of the oil and sugar from the flesh).  It is a yummy milk, but I only got 1 quart, and it took me 2 hours. I would need at least twice that in one day, and it's just not a feasable option.  But, at least I tried it, and know now.  Dried coconut isn't much of an option for me, because of the cost.  I did learn a really great recipe for coconut butter.  Yummy! I'll share it when I make it again!

It turns out, that all my work was for nothing really, except a learning experience...  He just wasn't getting all the calories, nutrients, and enough fat from coconut milk alone.  I had to put him back on formula, until we can figure out the root of all the problems.  The GI wants me to try 3 new formulas (that still have soy), that are completely hydrolized and broken down, and hopefully they will be better than what he's on.  They are twice the price, but it will be worth it if they work.  So far, I've tried 2 of the 3, and haven't seen a difference. :(

Pancreas

This week had been overwhelming. Today has been overwhelming.  I have been taking Little Bear the chiropractor since last week.  I have heard really great things about babies with severe GERD and chiropractors, so I decided it was time to try it out.  I have seen a chiropractor for many years for severe migraines, and actually saw this same chiropractor when I was pregnant with Little  Bear to help with my pain from labor, and bed rest.  We'll see what happens.

He also had his follow up appointment with his GI last week. Apparently he also has severe food intolerance, yes, you read that right, food.  All food.  She also said his pancreas isn't working properly, and isn't producing either enough, or any enzymes to digest and process his food, and most importantly protein.  So, she put him on an eighth medicine. Yep, 8. So now he is on a live enzyme  made from bovine pancreas.  Gross I know.  I shudder every time I open the capsule, and put it in his applesauce. Oh, get this, the Children's Hospital Pharmacy (the only place in the state that can get most of his meds), will overnight me his medicine if they don't have it in the pharmacy.  So, Saturday, FedEx came and dropped it off.  The driver told me that it was the only package sent out that day, and said it cost $150 to deliver it 45 miles to my house.  Isn't that madness?!?!?!? I hope the insurance covers that sucker ;)

His formula ingredients changed and now have soy in them.  No wonder he is still having so many issues right? So I took him off his formula and put him on coconut milk.  He's been on it for 3 days now.  Not sure if it's making a difference or not.  It's been a hard, hard week.  His eczema has been terrible, and yesterday he got into some cereal with soy in it, and had a really bad reaction. 

My next goal is to learn how to make my own coconut milk.  It's supposed to be much more cost effective, and better for you than the processed stuff.  If it works out well, I'll post how it turned out :)

My little Munchie Moo has been having a hard time lately.  She can't leave my side, and has been very whiney, and throwing temper tantrums.  I have been trying to spend more one on one time with her and let her know how special she is to me.  She is currently sleeping on my legs, on the couch while I type.  I love her.  I just wish I didn't feel like I was failing her, failing everyone.  I hope she knows how much I love her. I hope she knows how much I need her, and how special she is to me.  The GI told her that she is the reason I am still sane.  She was so proud of herself for being such a big girl.  I love her.  

Mother Killer

Mother Killer.... I nearly died when Little Bears new GI, wrote that in HUGE capital letters on his chart, and explained to me what it meant.

Apparently, when a baby cries for more than 8 hours a day, they classify them as Mother Killers.  She explained to me that 80% of moms with babies who have been having these troubles, and crying so much for so long do one of two things; either they attempt to kill themselves, or they suffer a psychotic break. As he was screaming uncontrollably, and could not be consoled, she asked me how I was still sane.  I then explained to her, that there is a very loose definition of sane. 

I love my Little Bear.  It breaks my heart that he is so constantly miserable, to the point of being inconsolable.  I wish and pray every moment that there is something that can be done for him.  I have fought, and keep fighting to get him into the best doctors in the state.  I only wish something more can be done. 

The GI ordered a bunch of tests, and in the process we found out he has 1 kidney that isn't working properly, and 1 renal artery that is mostly blocked.  Now he has yet another specialist he has to see, and a host of tests that go along with it.  I have spent more time than I ever wished holding him down while he gets poked with needles, and strapped to tables, and screams in MRI machines for hours. 

Will this ever end?

Remember how I mentioned he never sleeps? Seriously, he NEVER sleeps.  Which means I don't either.  I have gotten a solid 2 hours every day the past month.  I have never in my entire life been so exhausted.  I have never felt more like I am going to lose my mind.  More and more each day, I understand why they are called Mother Killers. 

The misery, screaming, and less sleep have been worse the past couple months.  Terrible. I have been playing phone tag with the GI's office.  The soonest appointment they have is mid-December.  Guess that's what you get for seeing the best pediatric GI in the western states.

I know in time he will get better.  I am grateful for the patience I have been given to deal with all of this, and I am even more grateful for being able to survive this with so little sleep.  Reminds me much of the grace and knowledge of our Heavenly Father.