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!

Most recent

What a week this has been!  Oh, and it's only Wednesday!

On Monday, Wyatt had PT, OT and Speech Therapy at 8am.  During therapy, he seemed to be sleepy and just not feeling well.  The older that Wyatt gets, the more defiant he gets.  Mike blames me, but,  ok, so maybe that is from me.  Anyway, he wasn't very cooperative at all during therapy.  The worst part was that we had an appointment with the Vandy geneticist at 11:30.  

On our way to Vandy, Wyatt slept.  Our drive to Vandy is only 20 minutes, typically.  I knew we were going to be early, so I just took my time.  When we arrived, he was still asleep so I tried to to jostle him to wake him.  Thank goodness he slept until it was time for weight and measurements.  This nap was much needed!  (We also saw his PCP on Tuesday who said we have another double ear infection.)

For those of you who have noticed, we have seen a geneticist in the past.  The one we saw was part of Centennial, the hospital where he was born.  This geneticist, is part of Vandy.  I felt it was better to centralize all of his doctors to Vandy.  It's much easier for his care.  Their computers are all linked and they have access to everything, making it much easier to look up information they may need.  This appointment was made more than 6 months ago, but I was able to get in to see the other quicker, so I kept it.  I know, crazy mother!

Anyway, this visit was very bittersweet.  During the first five minutes of seeing Dr. Phillips, he diagnosed Wyatt with Moebius Syndrome.  Now, if you have followed my blog previously, you know that from the time he was three months old, I have questioned Moebius.  I had researched it for quite a while and felt as though he may have it and I questioned many doctors about the possibility that Wyatt had this syndrome.  We even saw another geneticist who assured us that he did not and that all of the issues I had noticed that were similar to Moebius, were simply low muscle tone.  Within the first five minutes of meeting Dr. Phillips, and with the first six questions he asked me, he had diagnosed Wyatt with Moebius.  

While this diagnosis is disheartening, it is also a sort of relief for me.  It's strange, I know, but I feel like the weight of the world has been taken off of my shoulders.  I am not sure why this is, but I really feel relief.  I have known all along that there was something else going on that was yet to be diagnosed.  I knew my child had Moebius.  I hate that I wasn't listened to.  

Of course I go back to questioning myself.  The geneticist, Dr. Phillips, explained how Moebius Syndrome is "marked" in Wyatt's DNA.  I know that there was nothing that I did, or could have done to prevent it, but I still question things.  Then I ask why us?  I question why Wyatt.  I just want answers.  But, I know that I will never get answers to these questions.

However, with this diagnosis, I also question the future for Wyatt.  Knowing and seeing other children with this syndrome, I ache for Wyatt's future.  He will face so many more mountains than other children.  Even if he had just been diagnosed with Poland Syndrome and lived with that, he would have mountains to climb that most others wouldn't have.  But now that we have an added diagnosis, we have added mountains.  Wyatt will not be able to move his face.  The tiny movements we get now, that I associate with a smile, are all I will get.  Wyatt will be unable to move his eyes laterally (left to right).  "Moebius Syndrome is a rare neurological disorder that affects the 6th and 7th caranial nerve, leaving those with the condition unable to move their faces and unable to move their eyes laterally."  - www.moebiussyndrome.com  With that being said, my son will never be able to show emotion through his face.  He will not be able to frown or smile normally.  He will not be able to look left or right without turning his head to do so.  He will have problems swallowing and eating and may possibly have speech issues.  He could someday have vision, hearing and dental issues.  This is all so much for a mother to digest. 

I have thought about so very much in Wyatt's future since before his birth.  I went from thinking that he would die at birth to being thankful that he was alive and thriving.  To thinking he was dead in my arms, to being thankful that he was crying during an attempt to get an IV.  Then we are faced with knowing that without a surgery to "tact" his aorta to his sternum that he could die, to being thankful that he made it through.  Followed by the fact that my child had to be intubated and not knowing if he would make it, then to another surgery followed by a trach and vent to keep my baby alive.  And just when I thought it was all downhill from here, we are hit with this.  When I once thought about being worried if he wanted to play sports and get hurt, I now worry about protecting him from the cruelty of those around him.  Not just children, but adults.  How do you explain to someone staring at your child that he is unable to smile?  How do you tell someone that he can't blink?  How do you stop people from staring at your child, possibly causing that child to be self conscious?  How do you teach your child to love ones self when society is there telling them that they are not good enough because of the way they were born?  There are people every day that we tell aren't good enough for one reason or another.  The song "Born This Way" by Lady Gaga is running through my mind.  I want my baby to know that he is perfectly perfect, just the way he is.  But, how do I help ease the pain and rejection from others?  I know this personally because of my weight, but I don't want him to know this pain.  If you take nothing else from this blog, please teach your children acceptance.  Please, teach them that just because someone is different from you doesn't mean that they are bad.  It doesn't mean that they are scary or mean or dirty or ugly.  They are just like everyone else, God just made them out of different materials.

With that being said, I have found www.moebiussyndrome.com to be an incredible resource for me.  I have found mothers and fathers who have grown children with Moebius and are will to tell their experiences.  Also on this website, I found that the Foundation has a conference every two years.  In 2010 this conference will be in Philadelphia.  Mike and I are determined to learn absolutely everything we can about this diagnosis so that we can provide an environment for Wyatt that he is able to thrive in.  So, as of right now, our plan is to travel, with Wyatt (granted we are off of the vent) to Philly next year to learn more about his syndrome.  We will also be able to attend seminars from people who have children with Moebius and from adults with Moebius.  We will be able to connect with others and share the information about our children, in hopes of helping each other.  It's a support group that friends and family just can't provide.  It's a group of people who are able to share their journeys in parenthood with children with Moebius.  

Pray for us as we live in this new diagnosis.  It feels as though the wind has been knocked from our sails.  I know that we will sail again, but for now, I grieve.  I don't know what I grieve for.  What have I lost?  My baby is here, and amazing!  He laughs when I blow raspberries on his belly.  He is into everything!  He is so curious it amazes me.  He is so stubborn that I have to laugh!  I can't explain my emotions at this moment.  It's so difficult.  Just pray that I somehow gather the strength to walk though this with power and conviction.  And pray that 40 years from now President Wyatt Paul Carcione does a great job running this country!  Because I know there are great and mighty things ahead from him!