Another Puzzle to Add to the Puzzle of X (and has it really been over a year since I posted)

It has been over a year since I last posted. That is unbelievable.  We've been so busy with life that posting obviously hasn't been a priority.  A lot has changed since the last post.

I was looking back, and in one of the last posts I mentioned X was getting 5-6 bolus feedings a day.  Well, we are down to 2 bolus feedings a day.  That is an incredible achievement for X!! And a whole lot of freedom!!!

The rate of X's bolus feed is maxed out on his feeding pump and he is able to tolerate 350ml over 35 minutes.  He was no where near that a year ago.  The two feedings means he is free to enjoy life without wearing a backpack with a feeding pump and feeding bag full of formula the majority of the day.  It also means I do not need to carry around a cooler bag, bottle warmer, backpack, feeding pump, bag filled with formula and try to plan around all these other feedings while giving him as normal and active life as a child his age should have. It means X is not interrupted while playing to get "hooked up" to his feeding pump. He has one feeding right away in the morning and one feeding before bed. That's.  IT.  It has taken me a while to get used to this new, liberating schedule. I used to have timers set everywhere so I wouldn't forget to give him his feedings because they needed to be given 2 hours after the previous feeding ended so we could get them all in during the day and still give him some time to feel hungry so he could eat orally. That was one crazy balancing act that I hope never to go back to.  We first attempted the 2 feeding schedule August 5, 2014.  It went well the 1st week.  It did not go well the 2nd week.  He wasn't eating or getting enough nutrition or calories so there were melt downs aplenty and lots of tears (his and mine) and low energy.  We went back to the 3 feeding schedule for a week and attempted the 2 feeding schedule 8/28 and so far, so good.  He has actually gained weight is growing.  in fact, he is sticking to the 25th percentile for growth and 50th percentile for weight so all is good.  His GI doc is very, very happy with how well X is doing.

X himself was so excited to go down to 2 feedings, he was telling everyone (and he doesn't talk about his feeding stuff much to others).

This doesn't mean that eating is easy for X. It takes a lot of encouraging (a lot) and often bribing to get him to eat at a meal.  He still doesn't feel hungry very often. Even after playing all day outside and tearing around.  He is beginning to push through that and he will attempt to eat something at mealtimes.  Usually if he just gets started or sits at the table long enough he will eat a decent meal.  But it is hard because he does not feel hungry.  His oral aversions and gagging are completely gone though. GONE!  No more gagging or making faces like he is going to puke when he looks at food. If something does not look good to him, he will at least attempt a small bite before making a decision about it (a HUGE shout out to his speech therapist and OT who used the SOS feeding program).

When X becomes ill (even a small head cold) he does continue to deal with vomiting and nausea and no appetite. I believe his motility slows down for whatever reason.  And he will drop 2-3 pounds in 1-2 days.  That part is still frustrating, but hopefully with time and maturation that will also resolve itself. But we have had a lot of success and victories with his feeding over this past year!

Two new issues have cropped up this past year as well.
We have been working with a professional because X has PTSD from all of the procedures (many of them terrifying and horribly painful while not under sedation) and experiences (I regret the NG tube with all my heart) he has gone through since August 2010.  (remember when they told us he would only need the NG tube for 3 months and that would be it?)
X has responded well to the help and he is working hard.  Because he was so young when all of this started, his nervous system has become hardwired to his "fight or flight" system.  His system chooses "fight" 99.9% of the time.  Before therapy, X was raging 15-20 times daily over minor irritations and frustrations as well as being accidentally bumped or surprised or a routine that was disturbed.  Our home was loud, tense, anxious and we were all walking on eggshells.  If he would get hurt he would not come to me or anyone for comfort, but would rage and yell and resist help (when he obviously needed help with a big scrape) and would take care of it himself.  Our home was not a peaceful home.  For me, it was mentally, physically, and spiritually exhausting.  And it was heart breaking to see this little boy so full of rage who resisted any comfort and was out of control.  It was also frustrating because I felt to helpless and because my nervous system was being taxed from all of the raging.  I pretty much disappeared and isolated myself because of the exhaustion and bone weariness I felt.  Now, X has some tools to use and he does use them.  He comes to me for comfort when he gets hurt (his reactions often seem over-the-top to others, but we are thrilled he is seeking comfort instead of raging) and he is able to calm himself and ask for help when he needs help calming down. It doesn't mean our home is perfectly peaceful. It isn't.  But we are in a much better place than we were in before therapy.  I wrestled with sharing this piece of X's life, but therapy has helped so, so much that if there is anyone else out there who happens to come across this that is in the same situation, I want them to know there is help!

Today we had a follow up with an endocrinologist.  X has been growing fine, so  I was going to ask if we still needed to see this doc. The doc said, "He is doing so well I don't think you need to be seen by us anymore". Hallelujah!!

Then he looked at X's hand x-ray for bone age. (Here is another puzzle) X is almost 3 years ahead of schedule for bone age (not bone length, just age) (Normal variation is 1 year behind to 1 year ahead).  What does that mean?  Well, it means he could be heading into early puberty. (he isn't even 7 yet)  This is the way I understood things (which may not be correct).  Because X had stopped growing and struggled so much with weight gain as a baby and was so ill with his allergies--it stressed his system (particularly his adrenals).  Because of all the trauma and stress of procedures and all he had been through and stress hormones activated--it stressed his system (adrenals again).  This fired up the adrenals with stress hormones and his body was trying to catch up with growth because he had stopped growing.  The adrenals are connected to turning on the hormones of puberty.  At the age of 6, boys are already getting a minuscule amount of male hormones starting, but X may be getting more or getting ready to start a lot of them (I think).  The doc ordered some blood work (we will do in our home clinic).  He said he would be very surprised to see anything in the blood work suggesting early puberty, but needs to check it out.  He also said we need to keep coming to see him (boo).  He also said X's bone age being so far ahead is very unusual (of course).  I asked if this could explain some moodiness we have been seeing and he said it could definitely be contributing.  So, now we need to distinguish between PTSD and possible moodiness related to hormones.   I don't know what this means for X. I didn't ask a lot because 1) I was taken off guard, 2)X was in the room, 3)I didn't know what to ask.  I think, maybe it could mean that he would get all these hormones too soon and then they would shut off too soon and he would stop growing too soon??? But don't quote me on that.  So basically I could have 2 boys going through puberty at the same time who are 5 years apart.

To be honest, I was (and am) heart broken, discouraged and frustrated by this news.  To hear that the stress of X's life events (even though he is still little) have possibly interfered with the normal development of his hormones and could alter the way he matures and grows breaks my heart.  into pieces.  It's discouraging and frustrating because it seems like whenever we get to a place of stability and we are moving forward and seeing the light at the end of the tunnel, some other weird thing pops up that doesn't make sense to the professionals and involves more blood draws and tests which are stressful for X.

As discouraging as this part of the day was, I do have so many things to be thankful for.  My mom spent the night so she could get up before 5am to be on the road with us at 5:30am to keep me company on the 3 hour drive to the dr appt. She was also there to laugh with as I was loosing my mind driving home.  That was huge.  The weather was perfect.  N was able to spend the night at his friend's house so he didn't have to get up so early and come with us.  While stopped for a train, I noticed I was next to a willow tree that was blowing in the wind--one of my favorite things to watch.  X did not need to get the blood drawn today (that is another biggie). X is being followed by professionals. I felt God was making His presence known more today and it was comforting. I do wrestle with Him but I do know He is there and He is taking care of everything (not necessarily how I would) and I still have peace and joy (which somedays I find amazing and somedays I don't feel it as much).  My heart is heavy tonight as I look at my son and wonder what the future holds for him, but at the same time I have some peace resting in Him.

On a side note, the residents at the clinic today asked X what his favorite subject was. He replied, "playing video games".  Proud homeschooling moment there.

If you made it to the end of this post you should receive some sort of reward, because this is one crazy long post.