I know I have been a total slacker in updating this blog, but that's actually a good thing because it means I'm not sitting at home or in a hospital bored with extra time on my hands. I will post an extensive update on Connor sometime in the next week or so.
Until then, Connor has only one more day to make sure he gets on Santa's nice list (he's quite the ladies man and doesn't realize it's not nice to have so many girlfriends, ha!). The three of us are going to enjoy taking it easy at home today and are looking forward to enjoying the company of family tomorrow.
We hope everyone has a very Merry Christmas and stays safe and healthy! That's our goal at least!
Today was a pretty big day in the Walton household.
First of all, I officially went back to work (which means Matt and I will slowly quickly return to being zombies).
We've had a crazy few weeks with his eyes. If you are super interested, I've detailed it here (mainly for me so I'll remember it all). If you could care less and just wanna see some pictures and watch a cute video, scroll past the boring medical stuff.
Early on in life, Connor had eye pressure issues (glaucoma). The past few times his eyes had been checked (while he was sedated for a procedure), his pressures were normal. I honestly forgot about going to the ophthalmologist to get checked. So this summer, one of our 8 doctors appointments was ophthalmology.
They wanted to check his pressures and Connor was pretty cooperative. They used a machine like this one.
From what it looks like to me (a mom who hates eye related things), it squirts a liquid into the eye and gives a pressure reading. Normal range is 10-20. His eyes were hovering around 80. 4 times the normal limit.
If left untreated, it would ultimately lead to blindness. While we are not really sure if Connor is even seeing now, we still obviously weren't willing to risk that. So we started 2 eye drops a day and went back 2 days later. The doctor was really concerned and if the drops didn't work, it would mean surgery. Just hearing the word surgery made both of our hearts drop. We had just had a huge surgery that took 7 attempts just to get done!
Luckily, the pressure levels dropped. His left eye was still pretty high (around 45), so we added an additional drop to the left eye (a total of 3 different drops a day).
We've been back a third time and the pressures were 17 in the right eye and 24 in the left eye. Since MUSC is a teaching college, there were some students in there and our doctor was kind of quizzing them on what else could be checked or done. So they decided to check his corneal thickness. Basically, if his cornea is thicker than normal, that would skew his pressures a bit (certainly not 4 times the normal limit, but some).
So of course, because the poor fella can't seem to have one normal part of his body, his corneas were thick. That adjusted his pressures down to 11 and 18, both within the normal range.
So...lesson learned. We will never go this long without having his eyes checked.
Now, that brings me to today's post. At our first of these visits this summer, I inquired about glasses. If you're familiar at all with Connor you know that he has a host of things going on neurologically. In addition to microcephaly, his stroke occured in the part of the brain that controls vision so he has a good bit going against him. Structurally, he should be able to see out of his right eye...it's more of a quiestion if he can process what he's seeing.
So, he gave me a prescription for glasses and they came in today! Check this stud out!
We're not 100% sure if they're helping or not, but I just love this video I was able to capture!
Now before you get any ideas, no, we are not moving to Holland, ha!
I saw this poem a couple of years ago, probably during Connor's first year of life. This past week it has popped up on my Facebook news feed several times, so I thought I would share it with y'all. I think it's pretty fitting to our family. In fact, I read it aloud to Matt last week and definitely started to get emotional (I hope he didn't catch it...I tried to be descreet ;)
WELCOME TO HOLLAND
by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Honestly, rereading parts of that just now made me tear up.
Some people know they're going to be in Holland before their child is ever born. We didn't. I'm not sure if I would want to know.
It's true, the pain is there. Though you may not see it on our faces, it's there, buried beneath the surface. Sometimes much closer and occasionally it will bubble over.
It's tough to have your 2.5 year old called a baby by others.
It's tough to see other parents lament that "babies don't keep" or "I wish he/she could stay this little forever" or "never grow up." I know those parents don't mean that...but it's still hard to see.
Most parents in Italy probably took their kid to a park, or a movie, or other fun place the past few weekends. Here in our Holland? The ER.
(An old picture prior to his teeth being pulled)
Even though there is a bit of pain in not being in Italy, Holland can be pretty awesome. This is what we choose to focus on as a family.
Holland has this sweet snuggle bug!
In our Holland, we have the most amazing kid. Each day I don't think he can possibly be more amazing...yet he is. He gets cuter by the day, I swear!
We are continuously amazed at Connor. He is trying SO hard to scoot and can do it just a little. One day soon he's going to get the hang of it. He's blowing bubbles and "talking" a lot, though we may not always understand it ;) He hasn't let his surgeries in June get him down. If you remember...he was trying to roll over the night of surgery!!
So, that's our Holland. It's not Italy, but we've got the cutest kid ever in Holland, so I think we'll take it ;)
There's really not a whole lot to update which is good!
Connor has been recovering nicely. Today we have started to wean him off his morphine and he's now getting some oxycontin and Tylenol to manage his pain.
Matt and I took a class this morning about g-tube care and what we can expect. We have been working on being as hands on as possible with the tube. So far we've done two feeds and meds all by ourselves. We also just finished giving him his first sponge bath and cleaning the site.
Connor is now up to his goal feeds which is 150 mL (or 5 ounces) 6 times a day for a total of 30 ounces each day.
Here are some pictures of his progress! Word is we may be going home tomorrow...exciting stuff! :)
Fact.
Started off with very slow amounts of Pedialyte!
Can you tell I'm eating right now?!
It was REALLY tough for him to not be on his tummy!
Something in my mouth feels different...
Such a sweet little toothless grin!
I got my stitches out today!
Ha, look at that hand!
We also moved rooms to a bigger room (hallelujah!). And because I have way too much time on my hands...
Hopefully the next few days will be a little uneventful, but here's an update on our day.
Connor got an okay night's sleep last night considering there was a kid screaming all night next to us (Matt and I got a little over 2 hours sleep each...yikes!)
Can you tell how tired we are here?!
Despite not being able to eat this morning, Connor was a great patient! All of the pent up stress and emotions were definitely prevalent, especially once we moved to the OR Holding room. I was really struggling to keep it together. Especially seeing this sweet face:
We were told the earliest they would be done would be noon since they were taking him back at 8:00. We got an update around 9:00 that they got started around 8:30 and then around 10:15 we got a call from the surgeon. Since Matt was talking on the phone, my mind was racing...Why is the surgeon calling us? Is something wrong? Did they find something bad out? Turns out...he was DONE with his part. He was asking if we wanted cardiology to get in and do an echocardiogram on him since he finished so quickly. Luckily, cardio was able to do it.
After a while, we checked the surgery board and noticed Connor's number went from the OR to the Recovery Room. I was so relieved it felt like a huge weight had lifted, but it took FOREVER to finally get the call to go back and that uneasy feeling kept creeping in. Finally, we were able to go see our sweet, sweet boy.
Connor had just gotten some morphine, but a dose of Daddy was also necessary!
After about 30 minutes in the Recovery Room they brought us back to where we stayed last night (no PICU...yay!).
Connor has spent most of the day resting,
Medicine time! This isn't even including the 2 meds he already got in his IV. We actually used his g-tube for the first time with these meds! And when I say we, I mean the nurse with us watching and asking her a bazillion questions ;)
I was even able to get his first smile! It was pretty faint, but it was there! This evening, Connor has shocked us with his spunkiness. He is dying to roll over onto his belly, but can't until at least tomorrow.
Here are some videos from this afternoon/evening. The second one is not the best because I'm moving around so much, but it's hard to keep him from rolling, making sure his drainage basin thingy doesn't tip over, etc.
We again cannot thank everyone enough for your kind thoughts and prayers. Keep 'em coming because the next few days may be a challenge!
So tomorrow is a long awaited, BIG day for us. It entails the "s" word. That's right...surgery.
So in anticipation of the 7th attempt, Connor has spent the past week quarantined at home. He did have a few visitors, like his lovely therapists, which he greatly appreciated. Connor loves his daycare friends and has missed them a lot. Mommy just hasn't been cutting it!
So, here are some videos of our sweet guy with his therapists.
Ms. Stacy (his speech therapist) came by and worked on lots of really good things. I actually videoed so I would know what to work on with Connor. We were really proud of Connor at the end of the video if you couldn't tell!
I love this video because Connor gets SUCH a good grip on the light bulb/ball. While Connor's grip is really strong, he really struggles to grab on to things so this was really exciting!
See above!
So, not videos but he worked so hard for Mrs. Denise his physical therapist!
These are pretty old, but I think pretty funny. Mrs. Heather, his occupational therapist, gave us these techniques to do because baths have been rough around here lately!
So with Daddy, Connor's brush therapy goes pretty smoothly. He's a good boy and super sweet!
And with Mommy, someone is a huge wiggle worm! He's so nutty!
And now, just some fun videos of Connor playing.
So feel free to bookmark this link if you ever need a pick me up. I know after the fussy boy I've had off and on this past week, these videos are awesome!
Connor turned 2 back in February, but we just had his party. We were trying to wait until after his surgery, but this little booger has, as you know, successfully avoided surgery 5 times now.
Here are some (read: overload) pictures:
I think I was a little more excited about this gift than he was at the time, ha!
Okay, so that title might be a little deceiving...
We were very
excited to hear from Connor’s physical therapist (PT) a few weeks ago that she
wanted to put him in the EasyStand at daycare.
This would allow him to stand up (with assistance obviously) and allow
him to not be on the floor all the time.
So, we set off to find Connor some sneaks (sneakers for those of you not
in the know).
His adventure in
standing up kept getting delayed due to sickness and other fun things, but
Friday we finally were able to do it!
Matt and I were both there because we didn't want to miss his first
time! Check out the videos and pics!
