I Spy

April 1, 2015May 29, 20154 Comments

I spy with my little eye someone who loves to smile!

And speaking of eyes, we finally have a firm grasp on what’s going on with Sol’s eyes. Over the past few months, I felt like we were getting hunches and ideas from specialists, but no concrete diagnosis. Two weeks ago, I decided to listen to my intuition and took Sol to see a pediatric neuro-ophthalmologist (how’s that for a mouthful?) to see what’s what.

Boy, am I glad I did.

This appointment took us to Children’s National for a second time, and like our appointment there with the cardiologist, I was so happy and at ease with this doctor’s attitude and outlook for Solly. As soon as he walked into the room, he said, “Before I begin, I want you to know that there are many parents who’ve sat in that chair, with a diagnosis like your son’s. I probably will see at least one other parent like you today. Stroke in children is very common.” Many doctors look at Sol like he has three heads, so this comment set the tone for a really great appointment.

The doctor then examined Sol’s vision, having him look at and follow a white card with black shapes on it, as well as a series of lights. He got right up to Sol’s face (who giggled when the doctor spoke to him), and picked him up, spinning him around in a chair to watch how his eyes moved. He looked into Sol’s eyes to check out his optic nerves. Then, because I didn’t have a copy of Sol’s MRIs, he read through the radiologists’ notes.

As a result, his findings were:

– Sol can see. There’s no doubt about it.

– Based on his medical history (his “rocky perinatal period”) and the fact that his vision is continually improving, he diagnosed him with delayed visual maturation (DVM). From what I’ve read about DVM, it presents very much like Cortical Vision Impairment, but self-improves within the first year.

– He has an obvious left-sided preference, but can move his eyes to the right. The left-sided preference is likely due to one of the areas in his brain that was impacted by the stroke. It’s possible that he could have visual field deficits – in other words, a loss of the peripheral vision on the right side.

– His eyes will likely move towards midline and the right side on their own. We will continue to work on this skill in vision therapy.

In the weeks following this appointment, we are continuing to see improvements in Sol’s vision. He is looking at us, his therapists, the dogs, and toys, and watching movement very consistently. The biggest development came today during our Physical Therapy appointment: Sol turned his head, looked at a toy that his therapist was presenting to him, and he reached out for it with his left hand. Multiple times.

It sounds like the littlest thing, but this was a huge first for Solly – particularly huge considering nearly 6 months ago, a fellow in the NICU told us that Sol could be blind as a result of his stroke. Our little man is continuing to show strength, will, and stubbornness, and we couldn’t be happier!

Hello, giraffe

I think I will eat you!

Happiness Is … A Happy Baby!

March 16, 2015March 16, 20151 Comment

Spoiler alert: this post is about pure happiness. It’s a bit of a bragging post, really.

The thing is, I have the happiest baby I have ever met.

I’m not sure what I did to deserve this. Over the past week, I have seen more smiles and heard more giggles out of my kid than I would have ever dreamed we’d get. As soon as he wakes up in the morning, we go to his crib and say, “Good morning, Solly. Did you sleep well?” Big smiles. A kiss on the cheek? Big smile. A taste of the toes? Big smile. Sometimes all it takes to get a grin is getting in his line of sight.

And then there are the giggles. Oh the giggles. They are addictive. All it takes is some tickles on the tummy or multiple smooches on the cheeks, and Solly explodes into laughter. The best way to get a giggle? Naked time. Boy, does Solly like to strip down to a diaper. It is the best. thing. ever.

Miss Laura pointed out his high level of happiness to me in our PT session today. She said, “See? Any time you start to feel down about anything, just look at how happy he is.” And you know what? She was right. I had the best day today just reveling in Solly’s happiness. (It didn’t hurt that he made some big strides in therapy, too. More on that in another post!)

The Solly smile

Sitting in the high chair

The turtle. I eat it!

All grins

Chugga Chugga

March 12, 2015Leave a comment

When I started running cross country in middle school, I remember learning to race uphill. My sister told me to envision a train going up each hill, and your arms were powering the engine with each swing – chugga, chugga, chugga, chugga.

This past month has felt very much like those hills, and every time I start to get tired, I think of that train and visualize pumping my arms to get up the hill.

I always like to end on a positive note, so I’ll start with the not-as-positives – those stinkin’ hills. With Sol’s 5 month birthday this week, we are starting to see some developmental delays. Nothing too surprising here – we knew the delays were just around the bend. Most of the delays are the result of his vision impairment: he still isn’t tracking consistently, doesn’t show a lot of visual engagement, is not reaching out for toys consistently, and the like. We are working with a vision therapist who is of the “wait and see” mindset, that Sol is still very young and his vision is still being wired. You may recall that we had a vision specialist come and determine that Sol likely has CVI. Our therapist isn’t convinced this is the case and thinks it could be related to motor control issues, which makes sense since his right side is the weaker side and he has trouble seeing out of the right side. I’ve also read about delayed visual maturation, which supposedly presents itself like CVI, but clears up by the end of the first year. While it’s not at the pace we’d like, Sol’s vision is slowly and continuously improving, so any of the diagnoses may apply. To help further diagnose his vision impairment, I am scheduling an appointment with a neuro-ophthamologist – for another opinion and hopefully some answers.

Sol’s growth has also slowed down. His head circumference is growing at a snail’s pace and he has not gained any weight in the last month. With the head growth, this isn’t much of a surprise considering the damage the stroke did to his brain, but we will continue to monitor the growth over the coming months. The latter may be due to a cold (his first cold!) that he picked up while traveling this month. As a result, he hasn’t been as interested in eating. We are heading to the pediatrician tomorrow to talk about colds, weight gain, and head sizes.

Ok, now the positive stuff. Sol is getting so strong! In the last week or so, he’s started controlling his head so well that we don’t need to support it as much when holding him. He now has enough strength in his trunk to stand a supported seated position for short periods of time. In tummy time, he’s pushing up on both arms (the left more so than the right) and is starting to relax and open his right hand more regularly. He continues to have good movement in all four limbs.

On the medical front, we had a follow up with hematology where he had his blood drawn, and they found his protein C and S levels to be stable. This means that we don’t need to worry about a blood clotting disorder. We will head back there in May for another round of testing to make sure that hasn’t changed. We also had a Neurology follow up, and because Sol has not had any seizures since last October, we can start letting him outgrow his seizure medication and completely wean him off of it by the time he’s one.

Most importantly, Sol is a very a smiley baby who loves to coo, laugh, and jibber jabber. We love watching him grow and make all sorts of new connections every day. Hopefully, these connections will continue and our journey will have a few less hills in it!

Puppies always make Sol feel better

Practicing looking & reaching

Hanging out at Uncle Ashley’s

Smiles forever!

The Way, Way Back

March 7, 2015March 7, 20152 Comments

I had another rough day on Thursday. After our OT suggested we start doing play dates with other babies, I started worrying about seeing “typically” developing babies and then comparing Sol to them. I know, I should never compare my baby to another, but it is so hard not to. Especially when we know that he’s going to be delayed in some areas.

After I spent a few minutes tearing up and feeling rather down, Mike sat down next to me and pulled up videos of Sol from his first month home from the NICU. He was so teeny then! In the videos, he was barely able to hold his head up in tummy time and was certainly nowhere near being able to move it in a controlled way. He couldn’t put any weight in his arms, and his eyes didn’t budge from the left side. Now, just a few months later, he’s put on a number of pounds (we’re up to 14 pounds now!), can hang out in tummy time all day long, and is starting to push up in his arms (including a little on his right, weaker arm). He’s even sitting up in a supported position and he is trying his darnedest to look all over the place. That smart hubby of mine was simply showing me that no matter what any other baby Solly’s age can do, Sol has made huge strides in his recovery and will continue to do so on his own schedule.

To celebrate how far we’ve come, I thought I’d share a few of my favorite photos of Sol’s “newborn” photo session, which were taken about a month after Sol came home. (All photos were taken by Red Turtle Photography, a fabulous family photographer located here in DC.) I’ll provide a more in depth update this week when Sol turns 5 months old!

One, Two, Three, Four

February 21, 2015February 21, 20151 Comment

This post is slightly overdue, but I’ve spent so much time just enjoying Sol that I haven’t had as much time to sit and write. I can’t believe our little muffin turned four months old this past week! He spent it in the best way – being loved on by his grandparents, Bebe and Gramps, and his Auntie Jenn.

Sol loves his Bebe!

Snoozin’ with Gramps

Unfortunately, turning 4 months old means vaccinations, so Sol had to go to visit the pediatrician. The good news is that he is continuing to gain weight and grow, even jumping percentiles in height. Mike was out of town for work, so I dragged Sol’s Bebe along with me for moral support while Sol got his shots. I didn’t need it – Sol barely let out a cry when he got two shots in his legs and he was a happy camper most of the day.

Over in therapyland, we still have many of the same goals, but we are making great progress and are adding to them. In PT, we are working on strengthening Sol’s core muscles to help with his low tone and also balance out his very strong back muscles. We’ve been doing lots of tummy time, rolling, and exercises on a medicine ball for his core muscles. He’s doing a great job of engaging his core, particularly since he’s now always bringing his hands – and toys – to his mouth. These muscles will also help him gain even more control over his head, which he is starting to hold up on his own for short periods of time. We’ve just begun working on a supported seated position, which will continue to improve as Sol gets stronger.

Bella gives lots of tummy time encouragement

Lights!

In OT, we’re very focused on Sol’s right hand since it is his weaker side and he naturally holds it in a fist more often than his right. To help relax his hand, we’ve started using a Mckie Splint, which encourages him to hold out his thumb, relaxing the entire hand. Once his hand is open, we encourage him to use it to hold toys, reach, grab, and stretch.

Next week, we’ll be adding Vision Therapy to the mix, twice a month. I’m happy to report that Sol’s eyes are consistently moving to midline and to the right, and he’s starting to watch faces, toys, and other movement – a really positive step!

While I’m so excited by Sol’s progress in PT and OT and with his vision over the past month, I’m feeling even more accomplished because I have learned how to sit back and enjoy my baby. Previously, I was amped up by all the therapy we need to do and focused on milestones and where Sol was – and wasn’t – that I realized I was forgetting to enjoy my time with him. This is so unfortunate because he is one stinkin’ cute baby. Now, I am taking more time just to sit and chat (ok, more like “coo”) with him, which helps me realize what an amazing and handsome little guy he is. Life is good.

Sol the Man

A blog about life after Pediatric Stroke