Vive la Résistance!!
Greetings! I hope that you have been staying cozy in this wintery weather snap that we've been having. Ethan and Liam have been enjoying hot chocolates and extra snuggle time on the couch! Emmett and Owen acquired some brand new 6-month long-sleeve sleepers to keep warm in, and by golly, if they haven't outgrown them already! They are busy growing boys.
So, there has not been a lot of changes or news with the babies lately. At least not until a few days ago. So, let's go there right now.
Emmett had two procedures yesterday. Let me go back. Emmett is a very handsy little boy. His favorite hobby is to see how often he can pull the tubes out of his nose without his nurses noticing (and it is several times a day!). Despite the fact that his right hand is paralyzed, and the tubes are basically permanently affixed to his face with all manners of tape, he expertly maneuvers his little fingers into just the right spot and BAM! Tubes are out! (He has a naso-gastric tube that is supposed to be distally located (in his upper bowels), but because he is so handsy, it is rarely where it is supposed to be...and a replogle which suctions excess bile from his stomach). At any rate, when his nurses have to replace said tubes, it makes Emmett screaming-audibly-despite-his-trach-tube turn-purple mad. Not to mention his NG tube is not where it needs to be to allow his little body to absorb the nutrients from the breast-milk he is recieving. So. Since the doctors wanted to do an MRI to assess the corpus callosum (As a reminder - when Emmett had a procedure done several weeks ago, it was suspected that he had agenesis of the corpus callosum (the corpus callosum being nerve fibers that create the main 'super-highway' connecting the left and right hemisphere of the brain that allows the two sides to communicate) though it was unconfirmed and a future MRI was recommended), and because he would be sedated for this procedure, and because he needed to make a trip to radiology to have the NG tube replaced distally (in the upper bowels, just below the stomach) in a manner that would not make him so angry, they decided to do both procedures at once.
The results are as follows:
NG tube placement was unsuccessful. Unfortunately, his anatomy is such that it is near impossible to get the tube to make the sharp turn from stomach to intestines.
MRI results showed that Emmett has complete agenesis of the corpus callosum (ACC) - there is no nerve fibers of the 'super-highway' connecting the left and right hemispheres of his brain. There are, however, other nerve fibers that connect the two sides, but they are not as prominent and strong as the corpus callosum. The neurologist performed a bedside exam on Emmett and was pleased with his development. He informed us that only time will tell how the ACC will effect his growth and development (so there is yet another waiting game in play). In addition, he also informed us that the Horner's syndrome and right hand paralysis (though paresis is probably the more correct term now because he has gained SOME movement back (paralysis - a loss or impairment of voluntary movement in a body part,caused by injury or disease of the nerves, brain, or spinalcord.
paresis - partial or incomplete paralysis)) so what I mean to say is right-hand paresis is 1.) not related to each other and 2.)reparable. The damage to the nerve is not within the Central Nervous System (CNS) nerves. The healing process will be long, but hopefully will be complete. (Waiting game #zillion.)
Dave and I were at peace with the outcome of the MRI regardless of the nature and severity of the agenesis. It does not change anything in our minds. He's still our sweet little miracle. And so is his brother. :)
Onto some really great news now. The wounds...are healed! Praise The Lord!!!! Owen still has the fistula, but there is skin grown up to the edge of the fistula. I'm not sure what the plan is from here for Owen, but for Emmett, he will have a jejunostomy tube placed for distal feeds sometime within the next several weeks. He is not gaining weight, but rather maintaining it. Emmet is at 15 pounds, currently. Owen is receiving feeds via the fistula and is gaining weight like a champ (16 pounds!). There is no rush to place a j-tube for him because he is doing well with the present method.
On the homefront, after doing research, and having discussions with Dave about how anxious it makes me to walk into a messy, dishevelled, unclean home, and after reading all the benefits that comes along with this 'new' and different lifestyle, I have decided to work toward attaining a minimalistic lifestyle. From what I have gathered, there really are a lot of benefits (less stuff = less mess; less mess = less time needed to clean; less time needed to clean = more family time; less stuff = a less materialistic lifestyle; less materialism = more money saved; etc...); however, it takes YEARS to achieve a truly minimalistic lifestyle. It is a process, and it is a way of thinking, and it takes a long time to change old habits. I am very gung-ho, but I am encountering some oppposition. (Those bloody rebels!! (Dave and Ethan...) I am pretty sure Dave just muttered "vive la résistance!") Fortunately for them, I am not FORCING anyone to be as gung-ho as I am, just encouraging them. I will win them over, though. I will. This year, for Christmas, I incorporated a Santa Wish List that I found on pinterest that allows 5 requests: I want, I need, I would wear, I will read, and I would REALLY like. Rather than getting a list with 10 items, it is now 5 items, and only 2 'wants.' This is do-able, and a much needed change considering we now have 4 boys to purchase gifts for at Christmas. :)
All in all, things are good, though Dave and I are feeling strained, exhausted, sometimes discouraged, stressed, anxious more often than not now, and it is a struggle to maintain energy to get out of bed. Fortunately, we have many things to be grateful for, and we recognize those things. And by God's grace, we are still somehow managing. I have found, recently, that I have more patience than I remember ever having with my children. Bless their little hearts. There is still no end in sight, and that is ok. God will pull our family through. And that is alright by me.
Until next time, stay warm. Be blessed.
