It's hard to believe it has been 3 years since Connor graced us with his presence. He has brought a slew of emotions and it is so nice to finally settle into some good, happy times with him.
We had some family over Saturday to celebrate his birthday. Each year I make a video documenting his year (his first birthday was an hour and a half long!). This one is a little over 13 minutes long...it's hard to limit my picture choices!
On Sunday, we let Connor play with some cake and he loved it! I gave him a smidge of icing in his mouth and Matt put some on his nose! It was fun to play around with the texture for him...he loved when he got icing all over his hand!
Yes, I know this is more of a 1st Birthday tradition, but I'm pretty sure Connor would not have been okay with this at 1, ha! We also waited until Sunday because you never know how Connor will react and it's easier to not have a meltdown/freak out with just us than a bunch of people around.
Hope you enjoyed the pictures and videos...he is one awesome kid, that's for sure!
Today was a pretty exciting day in the Walton household! We took Connor to the MUSC Wheelchair Seating Clinic to get fitted for a wheelchair! It will be custom made for him so it will be several months before he will use it, but we're very excited for this endeavor. Check out the pics!
As I went to create this blog post, I took a look at my past posts and had to laugh...there are so many drafts that I've started and then never finished. So let's see how long it takes this post to get published...it's September 27th right now!
I have given lots of updates on Connor in the past if you want to read them to see where we started: 3/9/13 4/26/13 6/10/13 3/10/14 6/11/14
Since it's been well over a year since I've given an in depth update on him, I'll do my best to update everything (even though a lot of it is still the same).
Neurology: Seizures: Connor just had his 8th EEG (all but one were at least 6 hours). We recently weened Connor off Keppra and started a new seizure medicine called Trileptal. He is still on Onfi. The good news is we have seen a decrease in seizure activity and haven't noticed his traditional head jerks in a couple of days. He has a neurology appointment next week so it'll be interesting to see what his neurologist says. We are definitely happy with the change in seizure medication for right now.
Connor's many EEGs (there are only 7 here because one was a short EEG that we didn't take a picture of). It's CRAZY to look back at NICU Connor and to see where we are today!
Microcephaly: Connor obviously still has this...it's not something that will likely ever change, but his head is about 10 cm. larger than when he was born.
Stroke: Looking at Connor's physical movement, you would probably never know that he had a stroke. His stroke was in the left side of his brain (likely in utero). However, he is able to move all of his arms and legs equally (sometimes strokes can cause a lack of movement on one side of the body). However, his seizures are likely still originating from the site of the stroke and the stroke occurred in the region of his brain that controls vision so that's another negative to this.
Opthamology: Connor is still on 3 eye drops a day and his pressures are remaining stable. He returns in January to recheck his pressures. We're still not sure that he sees as he doesn't track objects, but remain optimistic that even if he can't right now, one day he may be able to.
This video is from August
Hearing: Connor's hearing remains great...he LOVES music! He got ear tubes back in June and (knock on wood) hasn't had an ear infection since. We are hopeful the ear tubes will help with Connor's overall health (we spent A LOT of last winter/spring sick!).
Teeth: Connor had 4 teeth pulled back in June due to bad cavities. We certainly miss those pearly whites, but it made more sense to pull them than to try to fill the cavitites.
Last tooth brushing with all of his teeth. He was not happy!
Something in my mouth feels different!
The 4 pulled teeth...they were yucky!
Airway: Also in June, Connor had a bronchoscopy to check his airway (since he had pnemonia twice and was in respiratory distress back in October of last year). Luckily his airway looked great. They were also considering removing his adenoids if they were enlarged, but they were small so an adenoidectomy was not necessary.
This was one of our scariest days yet. Connor had to be intubated due to respiratory distress last October. Luckily, his bronchoscopy in June showed his airway looks good and normal.
Feeding:
Connor is now strictly fed through his feeding tube (a g-tube that connects directly into his stomach). We were getting pressured for a while to get one, and his hospital stay last October finally convinced us to proceed with it (see pictures above...we definitely didn't want that happening again!). Well, it took 7 tries, but we were finally able to have surgery in June. Connor will most likely be fed this way for life. We were very nervous about it, but the transition has been seamless and it is so easy. We can now make sure Connor is getting all of his medicine and getting enough nutrients a day. Since surgery back in June, he has put on 9 pounds!
One of his last pictures with no feeding tube!
Shortly after surgery. The smiley "bandaids" are where the laparoscopic incisions they made are.
Connor can eat any time he wants...while starting the Avondale 5K or even when he sleeps!
We can easily give meds through his feeding tube as well!
We are still attempting solids with him, but his main source of nutrients comes through his feeding tube.
Connor trying avacado for the first time. He didn't hate it!
Reflux: Back in March, Connor was admitted for a pH probe to determine the level of acid reflux he has. Of course, he did in fact have reflux. This meant that when he got his feeding tube, he would need a Nissen fundoplication, which means they essentially wrap the top of his stomach to his esophogus and stitch them together. This helps with reflux, but it also makes it difficult for Connor to throw up (although he has already proven that he still can!).
Pulmonary Hypertension: Last October when Connor was in the PICU for respiratory distress, he had a heart echo done. We were told if they hadn't known that he had a history of pulmonary hypertension, they would have thought it was a regular heart with normal pressures. While Connor was sedated for surgery back in June, he had a repeat echo done and everything looked good. We decided at his cardiology appointment later that month to decrease his medication and see how he does with that. He is now only on medication once a day (as opposed to the 3x a day he started off on). We hope that this has resolved itself and we can cross this medication off our list.
I had a good cardiology appointment, even if my face doesn't show it!
Nephrology: I took Connor to a nephrologist appointment the week of Thanksgiving hoping it would be a specialist we could cross off. Instead, we seemed to dig ourselves deeper. Prior to the appointment, Connor had a renal ultrasound and the doctor noticed that he was retaining a little bit of fluid in his kidneys. She said it could be because that's just the way he is, or it could be a sign of potential UTIs. They had already taken a urine sample and when it looked "dirty," they had to catheterize him to get a sterile sample to test for a UTI. As it turns out, he had a UTI, but had no fever or anything. It was really bizarre because without this appointment, we never would have known.
So Connor got on an antibiotic for the UTI, but would need an additional test to determine if he had reflux from his bladder into his kidneys. So the week of Christmas, they re-cathed him, took x-rays, and filled his bladder with contrast dye (while taking x-rays). Then, once he emptied his bladder, more x-rays were taken. The good news is that Connor had no reflux back into his kidneys! This meant that the UTI he had was more of a freak incident.
No urinary tract reflux...still has acid reflux though!
Toes: Connor's toes are still cute little nubs...that's definitely not going to change. He won't magically grow bones in them to produce definitive toes. His toes are actually what encouraged doctors to think there was something genetic going on.
Genetics: I think I've already addressed this before, but we all sent blood samples off to GeneDX where they did a whole exome sequencing. Only one marker (?) came back that he got from me (go figure), but Matt was not a carrier and the symptoms didn't match Connor (for example: macrocephaly was a symptom of it, but Connor has microcephaly). When Matt called me with the results, I actually cried because I didn't want to hear about life span associated with various syndromes (although his neurologist has indicated a possible life span of 10 years). So right now, we say he has Connor syndrome!
Personality: Connor is a really happy kid when he's feeling good and people aren't messing with him! He has truly come a LONG way from his early days. Connor loves playing rough (wrestling with daddy), music, and playing on his mat.
Sleep: This is a very touchy subject and I'm not going to say a whole lot on this. Let's put it this way: he's sleeping better than he did when he was a newborn, but is still not a typical sleeper. He'll give us several nights of fairly decent sleep and then go back to not sleeping well. We are *thrilled* if he sleeps until 4:00. That's a good night for us. Recently, he's been waking up in the 2:00 hour. Wahh!!!
My name is Connor and I've been known to fall asleep in my big boy chair during a feed because I decided I had to wake up really early and I'm still so tired!
In order for us to survive function, Matt and I have a whole system worked out. For example, tonight, I will go to bed early and Matt will stay up and finish Connor's last feed. Whenever Connor wakes up tomorrow, I will get up with him. Then tomorrow evening, it's the opposite: Matt goes to bed early and I stay up and finish his feed. Needless to say our weekends are spent napping and catching up on sleep.
I think that's about it. The biggest update for us this past year was the g-tube. It has really been a game changer in our house and I'm so glad we finally decided to go for it. Connor has been doing really well since he got in June. We are keeping our fingers crossed to have a better winter/spring than last year!
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 ;)
