It’s about time I write to you. How long has it been now? Mostly time flies by, so it doesn’t really seem like months have come and gone. You will be five months old this month. Where has all the time gone? It doesn’t seem real, but before I know it we will be ringing in a new year full of even more uncertainties, and even more possibilities. It’s been a tough year so far, but when is life not tough, for anyone? I suppose the difficulties of life are measured by how we handle what we are given, and I have a lot to learn in that instance. I have much to learn when it comes perspective, and viewing my life as a glass half full. I’ve been feeling really helpless these last couple of months. There’s just a lot that comes with growing up. Much more than what they teach you in text books and class rooms. They don’t tell you a whole lot about the major bills, the difficulties in qualifying for financing when you are in a rut, the survival techniques of being a stay-at-home mother with two tiny children, the I.N.S.A.N.E. surprises life drops on you in mere moments and the R.I.D.I.C.U.L.O.U.S. amount of money it costs to keep your head above water, financially, physically and mentally! No, they don’t really go over that. I need to stop whining, and you know why? Because whatever the heck is going on right now, rain or sun, I have my kids and I have an absolutely BEAUTIFUL family. Gray clouds can’t rain on my parade. I have way too much to be thankful for.
Now where do I begin? I don’t really remember where I left off. I have been dog sitting A LOT lately. It’s actually really funny. I have never really been much of a dog person (don’t judge me). I have never really been much of a pet person. I guess in circumstances where I had my own space, my own pets and less stress to enjoy them more, it would be different. Maybe we will be a house full of dogs as you and Carson get older?! (Lord help me!) Things could change! I have really enjoyed pet-sitting, though. It started off with a friend offering me to stay at her home for a weekend, and while I was helping her so she didn’t have to find somewhere to take her irresistibly cute fur-ball, she was really doing me the favor by letting me get away for a few days on my own with you two. I really needed the peace and quiet. I love.love.love your Mommaw and Poppaw and Uncle Cole. And I don’t have any “but’s” to add to that since we all get along great and it’s been a blessing in disguise that they’ve let us stay with them, BUT they know just like I do that it’s good to get away every now and then to just be alone. I thought it was going to be the best weekend yet!! And it really was a good weekend, up until Saturday afternoon when I rushed you to the hospital. It always seems like each time you get sick or something happens, it is on the weekend or right after every clinic has closed. It’s a good thing I went ahead and took you there though, because little did I know that you would be admitted with RSV. When I got the news you were being admitted, I figured we’d be leaving the next day for sure. RSV?! Psh, no big deal.
Wellllll… you were there for two weeks. You ended up throwing up a lot the first two nights, aspirated a lot of it and ended up catching pneumonia. You scared the crap out of me because you kept getting worse and worse. You started off on a low level oxygen cannula, and worked your way up to being transferred to the PICU in precaution that you may have needed to be intubated on a ventilator. I have really never been so scared, not even when you were in the NICU. Just watching you grow sicker and the thought of them shoving a tube down your throat to get you to breathe made me feel sick on my stomach.
When you started feeling better I knew right away, because I hadn’t seen you smile in over a week. That was when your nurses became crazed and in love when they came in to assess you. It took every one of them a while to leave the room because you would start blabbering to get their attention as they were leaving, and you’d start smiling and gazing in to their eyes with your big brown ones. They all loved you! Who doesn’t?!
We finally got you home. You’ve been a hand full ever since! Wide eyed and awake all the time. You sleep really well, but when you’re up, YOU ARE UP! You make it known! I also think you are starting to teethe, and maybe your tummy hurts a little because you are beginning to adjust to a new course with your feeds.
A few days after you were discharged, we met with your doctor of the Kids Eat program. She is also the doctor who is over your swallow studies and she designs the plan for you as far as eating and how to get you to where you need to be. They tried a few paci dips with some breast milk and rice cereal, and did an assessment of your swallowing just by watching and listening to your reactions. Seemed like you were swallowing some, but also holding a lot of the milk in your throat; hesitant to let your muscles do their job because you haven’t perfected your coordination of those muscles yet. She felt the importance of allowing your stomach some time to adjust to feeling empty, so that those muscles could also get some much needed exercise, so now you’re on a new course! You used to be on continuous feeds, 24 hours 7 days a week. Now we leave you off your feeds for 9 hours a day, working you up to being off 12 hours a day, with larger feeds in shorter amounts of time.
Your stomach is still so small, but you are getting there. I am so hopeful that by your birthday, you will have a huge stomach just waiting to be fed lots of Thanksgiving baby food (maybe by mouth?). We can hope, right?! I’m ready to ship this feeding pump equipment back to the suppliers, but not till you are good and ready, and that could take lots of time. We are so lucky because the biggest and most important thing out of all this is that you are a thriving little boy who has a lot more life to take on. You’ve already done so well that you are just going to make it seem like a breeze while the rest of us sit back and whine about our spring time allergies and the weather.
We’ve had a couple of times where people have come to the house to get us set up with home therapy. This Friday, we have someone coming to evaluate you and set us up with exercises for helping you develop your swallowing, and also to help with your hearing impairment. I am really excited to get more involved because even though the hospital sent us home with therapy exercises, it just doesn’t seem like you are responding like I’d hoped. Can’t wait to have activities that we can do together to not only use as bonding time, but to know that it’s designed to move us forward. You’ve had so many appointments, with so many different people, for so many different things. It hasn’t been easy keeping track of it all, and it hasn’t been easy to remember to write things down, to ask the right questions, and to even organize everything the way I’d like. But spring time is here, the sun is starting to shine, and we are going to buckle down and get in to high gear. All of us are. I guess I was just feeling so much like your swallow study was going to be the go ahead to start feeding you by mouth. And to see where you are, even though it was better than the last one, was a little discouraging. We have time to improve though, and you will!
So yes, you had your swallow study not too long ago, and it showed aspiration in to your lungs. But it was a better study than the one in December. MUCH better. We will have another one done in about four months.
You go in on the 17th for surgery to have P.E. tubes placed in your ears, they are going to assess your vocal chord paralysis and also check the bronchial cleft cysts you have on your neck. After your surgery, they are going to repeat your hearing screening for the 4th time and then hopefully send us home with your hearing aid after it’s adjusted. Your father picked out the color for your hearing aid mold. Duke blue! Who would have guessed that!?
Wow. I could go on and on but who in their right mind is going to read all of this? Are you still reading it, Silas? I wonder what you’ll be thinking years down the road when I let you read your letters. You are pretty special. But your brother is JUST as special as you. He is so in love with you. I’ve never seen his eyes light up like they do when you start smiling and jabbering to him. I was so worried and anxious about how he’d handle you being in the picture, but he has surprised us all with how much he cares about you. Every single day he will come sit down next to me as I hold you and say, “Mommy, Carsie hold ’em?” and he will stretch his arms out (as awkardly as he does with his elbows bent inward) and he will gaze at me with such patience, waiting for me to place you in his arms. I love the way he runs to you when you are crying, and lays right next to you, rubbing your head and saying, “Ohhh, it’s ok ‘Si-zee’ it’s OK!” He pats your chest when you are coughing, and does the craziest things that make you laugh until you have hiccups. I love the two of you so much it sometimes hurts because I imagine life without you and how sad I’d be. I am so lucky to have you, yet I know that no day is ever promised, so I try to remember to find patience and enjoy every moment with you.
Well, I’ve said enough for now. I’m sure I’ll write to you again soon, and maybe it won’t be so long and unorganized. I love you, silly boy.