Tuesday, July 31, 2012

Promises, promises

While I realize I make promise after promise to be a better blogger, I simply am not.  So, no more promises, I promise!

Honestly though, I have started and not finished in excess of a dozen blogs.  All started when I was in a bad place, emotionally.  I never intended for this blog to be a teary eyed, poor pitiful me rant.  This journey has been tough, I won't lie.  But, being on this side of what I pray is the worst of it, I feel terrible that I subjected you all to my sadness.  But I thank you all for your steadfast commitment to supporting me and encouraging me through it all.  I know that I would never have been able to be where I am without each and every one of you. 

Since it has been nearly six months since you last heard from me, I'll try the best I can to summarize what has been going on in our "Crazy Carcione" home.

Wyatt has had one hospital over night stay since we last spoke.  After going to the ER twice, spending the night in the PICCU, going to our ENT's office and a month of calling our ENT repeatedly, Wyatt was scoped at which time they found that our little goat had swallowed a foreign object (the tip from on of his medical supplies that was suppose to be thrown away) lodged in his throat.  They said that had he not had a trach, he would have chocked to death.  Nice.  Thank God it did no harm.  I won't bore you with the details, just suffice it to say that a mother's intuition is never wrong!

Our Peanut is now a crawler and a stander.  Yes, we are mobile!  It's a scary thing, really.  Knowing that you can no longer protect them in a perfect bubble.  Pillows no longer stop topples.  And our boy is on the move!  It's as though he is making up for all of that immobile time.  He is constantly moving.  Even when he lays down to sleep, he keeps moving.  It's crazy.  Our therapists in PT and OT had him fitted for AFO's (braces for his ankle/feet) to help in standing and walking.  While he isn't overly concerned with walking yet, the AFO's are certainly doing their job.  Every day I am amazed at how much stronger he is getting all over, in general.  They really give him the support he needs in order to have the confidence to stand. 

So I know that all parents think their children are smart, my I know mine is a genius (as I had to concentrate on how to spell the word).  He is simply mind blowing.  I mentioned the AFO's above, but they only work when they are on his feet.  Wyatt has mastered the Velcro and can successfully remove them, himself.  He puts them on himself, but can't get them on his whole foot, just yet.  He is obsessed with zippers.  Have I mentioned his fine motor skills?  They are creepy!  He holds the tiniest of things.  I mean, what child at 20 months old can do the things he does?  He knows most of his body parts, by name when asked to point to them.  While he is still non-verbal, he can scream.  Boy can he scream!  He can put large knobbed puzzles together.  He knows the shapes and colors and where they go.  I seriously can go on and on.  It's crazy how smart this child is.  I have no idea where it comes from!

We went to the doctor last week and Wyatt is measuring in the 17th percentile for height and the 50th for weight.  He hasn't gained any weight in the last 6 months, which is good.  The heavier he is, the harder it is for him to be able to move.  The low muscle tone is getting tons better, but he is able to get around better being a bit smaller.  The doctor isn't worried about his height  because he has been consistently growing and a steady rate.  All in all, the doctors are pleased with his growth.

My mom and I attended the 10th Moebius Syndrome Conference in Philadelphia.  It was amazing, of course.  I literally need to devote an entire blog just to what I took away from the conference and all I learned.  I feel so blessed to be a part of such an amazing organization.  Just knowing that things Wyatt does that I had been concerned with are common in the Moebius community.  But the most amazing part was taking away all of the relationships with other Moebius moms.  There is nothing like getting a bunch of mothers together, not only to talk about their children, but sharing information.  It is like nothing I can explain.  Just knowing that you are not alone.  I can't even being to describe it. 

I have gone back to work, part time.  It was a very difficult decision for me to make.  That fine line between being Wyatt's mom and being Amanda.  I live to be Wyatt's mom.  It is in every fiber of my being.  I was made, and born to be his mom.  I know that with everything in me.  However, during the last 20 months of being Wyatt's mom, I lost Amanda.  I lost who I was, not only to the people around me, but to me.  I woke up every morning focused on Wyatt.  Of course, I am his mother.  But, during the struggles we have faced with his needs, I totally lost who was because in the end, I am nothing without Wyatt.  Now, going back to work is not going to fix that, but it has certainly helped.  I feel like an active citizen again.  I now shower every day, and not just because I can smell myself.  I get to talk to people, and not just ones that are in my home for my son.  I feel productive.  I don't feel so dark and sad.  And while it is only 2 to 4 days a week, it's enough to work for now.  Don't get me wrong, I always wanted to be a stay at home mom.  But, circumstances presented themselves differently that I imagined.  I imagined being a SAHM and doing things mothers do.  Basically, being able to care for my child, the way most mothers do.  Taking him to the grocery with me, going to the park.  Simple things you do with your children.  However, in our world, I have been largely unable to do that.  There are nurses in my home 23/7 (don't ask) who are there only to tend to my child, much the way a mother does.  They bathe him, they feed him, they watch his every move.  And while I am there, and tend to do much of this myself, I felt as though they were there to do all of this, and better than I could.  While I know this isn't always correct, imagine someone in your home, all day, all night, taking care of your child, when you don't want them there.  Now, I know that they have been placed there to tend to his medical needs and that I am still his mother.  But, that isn't always the case.  I am not even going to get into the problems I have had and continue to have with nurses, but suffice it to say that it's terrible.  What I am trying to say is that, work has been a good thing for me.  And while I don't know how long it will last (I am only there on a temporary basis), I know that it is the right decision for me, at this moment.

Wyatt is obsessed with Roscoe.  I'm not sure when the change occurred.  He always watched Roscoe, grinning when he would lick his foot, but all in all, could care less that he was there.  However, now that Wyatt is crawling, Roscoe is like a moving target.  Poor guy.  Example:  A few weeks ago Roscoe was lying in the hallway between the bathroom and the nursery.  Apparently Wyatt locked his cites on the poor dog on this particular occasion.  Wyatt began crawling toward  Roscoe.  Sweet Roscoe, not wanting to be bothered during his afternoon nap, simply got up, and moved into the nursery.  Crisis averted.  Or so he thought.  Wyatt then hooked a right and followed him.  Of course, I got up from the floor, where Wyatt and I had been playing, to follow the action.  When I got to the door, Roscoe was literally pinned to the wall as Wyatt made his final decent upon him.  I swooped Wyatt up to take him back into the other room as Roscoe blinked in relief.  But seriously, Wyatt's love for Roscoe is undying.  He loves to pat him on the head and give him hugs.  I am so thankful that Roscoe is so patient with him.

Well, I think I will put an end to this update.  I know there there are six months of things that I have missed, and for that I am sorry.  I am going to try and make an effort to be better, but I promised not to make promises, so I promise I won't!

Love and happiness!