Status Check

January 26, 2015January 31, 20151 Comment

I realize that I go on and on about potential developmental issues that Sol may have, but I haven’t given an actual status update recently. We have a few doctor’s appointments in the coming weeks, so I will give updates then, but for now, here’s where we’re at:

Overall: Overall, Solly is doing excellent. He’s sleeping at night – waking up just once in the night for a feeding – and is a very happy baby. He also loves eating and continues to steadily gain weight. From what I understand, other babies who’ve had strokes can have trouble sleeping at night and can be somewhat fussy, so I feel so fortunate that he’s such a smiley man. I should also note that we have no diagnosis yet. Some possible diagnoses that we may get in the near future are Cerebral Palsy, Periventricular Leukomalacia (PVL), and Cortical Vision Impairment (CVI). While all of these sound scary (please, DON’T google them!), in reality, all can be treated with therapy and the earlier we start to intervene, the better chance Sol has at rewiring his brain around them. Good thing we’re starting early!

Cognitive: Of course, we don’t know a whole lot about Sol’s cognitive skills at this point, but he is starting to show some personality. We got his first smiles and coos while in the BVI, and he’s become more and more smiley and talkative ever since. Once he starts talking (coos and goos), he’ll respond to you and start a little conversation. This stage is becoming so fun!

Gross Motor Skills: Again, hard to say since Sol is only 3 months. He is continuing to move all arms and legs, and while in tummy time, moves his legs like he’s ready to crawl. He starting rolling from stomach to back when he was 6 weeks old, and is pretty stinkin’ close to rolling over from his back to his stomach.

Fine Motor Skills: We are starting to see that Sol has a preference for his left side, particularly with his sight and hands. When presenting a toy to him, he’s more likely to grab and hold onto it with his left hand. His right hand will also hold on to toys, but it appears to be slightly weaker. No big deal since we’re seeing movement out of both hands – in fact, our PT at Georgetown says that as long as he’s able to open and close his right hand, she can help make it stronger – though this could indicate a diagnosis of Cerebral Palsy.

Vision: I’ve written about Sol’s vision quite a bit (see here, here, and here). Sol continues to present with a left-sided gaze, though every day, he continues to move his eyes to midline and the right more and more. While he still doesn’t focus on faces or objects very often or for very long, I am encouraged by this progress. We see a Vision Specialist this Friday, and she may be able to tell us if his vision is just delayed or if he has some degree of CVI.

Hearing: No problem, whatsoever, with Solly’s hearing! He hears so well, in fact, that he’s quite a nosy little fella.

Doctors: We’re still seeing a slew of doctors outside of Sol’s pediatrician. We have a hematologist who is running blood tests to make sure Sol doesn’t have a clotting disorder that caused his stroke; a neurologist who is monitoring his seizures (he hasn’t had any since October); a neonatalogist who does a general followup post-NICU; and a pediatric ophthalmologist who is helping us keep an eye on Sol’s eyes.

This week is a busy one for Sol. We have Physical Therapy today, Vision Therapy tomorrow, Physical Therapy on Wednesday, Occupational Therapy on Thursday, and a meeting with the Vision Therapist on Friday. Off we go!

Where’s that smile?

Mr. Serious

Snuggling with Mom

Cheer Up, Buttercup

January 23, 2015January 31, 20153 Comments

Worrying does not take away tomorrow’s troubles,

it takes away today’s peace.

Over the past two weeks, I have become my own worst enemy. When we first received Sol’s diagnosis in the Fall, I envisioned him overcoming his injuries and defying all odds. Lately, I’ve been drowning in “what if’s” and seeing only the worse case scenario. That girl who proudly declared there is no normal is gone. My positive attitude has waivered, and instead of focusing on Sol’s many milestones, I’ve focused only on the unknown. The unknown is a pit of despair.

Here’s what’s running through my head lately:

The pediatric ophthamologist referred us to a specialist because Sol’s left gaze could be caused by CVI. In my mind, that meant he definitely had CVI and would never be able to see normally. (We see the specialist ~~today~~ next Friday and a diagnosis of CVI doesn’t necessary mean that he’ll never be able to see.)
The neonatalogist measured his head circumference and found that his head size is just in the 1 percentile for his age. To my neurotic self, that means he must have microcephaly and his head will never grow. (His neonatalogist is not concerned with his head size. His head is, in fact, growing. Plus, his weight is only in the 10th percentile, so he’s pretty proportionate.)
His foot twitched once while napping on my lap. Clearly, it was a breakthrough seizure.

The scary thing is that we don’t know what’s going to happen, and to make matters worse, there’s this thing called the Internet that allows you to search diagnoses and outcomes to no end. Those Facebook support groups that are helpful when you have a question end up being just as bad as Google because you see one good outcome or one awful outcome, and you assume the same thing will happen to your child. We don’t know if Sol will be able to sit up on his own, walk, see, talk, or go to school. We don’t know if he’ll receive a diagnosis of cerebral palsy, epilepsy, ADHD, or any of the other issues that commonly arise after a stroke. The uncertainty really sucks.

Sometimes it’s hard to keep faith and trust that everything will be ok. The thing that keeps me going in dark times like these is how far Sol has already come in just 3 months, considering his outcome really didn’t look good in the first few days of his life. He also has shown us that he inherited a bit of his parents’ stubbornness, like when he started chugging down bottles after the speech therapist strongly hinted that he would need a feeding tube. My hope is that his strong-willed nature continues to shine, and that when ever a doctor says he can’t do something, he turns around and says to them, “Oh yeah? Well, watch this!”

Some Arizona Sun

January 22, 2015January 22, 20151 Comment

After last week’s crazy string of doctor’s appointments, Sol and I jet-setted off to Arizona for a few days of warm sunshine with Sol’s Nana and Papa. It was just what we needed: 5 days of naps, sunny walks, and playtime. Sol even got to meet more of his extended family – his great Aunts!

As usual, with a warmer climate, Sol’s brain began to make more connections. We saw him start talking (“coo”, “goo”, and “ahh”) more, reach out with his hands, finding himself in a mirror, and starting to roll over from his back to his stomach – he didn’t make it all the way, just to his side, but he’s *this close* to rolling all the way over. Maybe all of these new connections are a sign that we need to relocate somewhere with more sunshine!

Sol & his great Aunt, Georgeanne:

Sol, Aunt Kathie, and his Papa, out for a walk:
Sol, chatting with his Nana and Aunt Kathie:

Sol, mid nap, after rolling from his back to his side:
On the airplane!

The Weekly Roundup: Luck, Leaps & Bounds

January 17, 2015January 19, 2015Leave a comment

Whew, this was one busy week. Sol and I had one appointment every single day, and two on Tuesday. By the time we got to Thursday evening, we were both beat.

Here’s how the week went:
Monday: We had our weekly PT session with Miss Laura. Because Sol was arching his back much more than usual, Laura suggested we chat with Sol’s neonatologist to see if he was having reflux. We got some good stretching in and worked on holding toys with both hands. The latter helps Sol organize himself and it’s our hope that by having him hold a toy in the middle of his body with both hands, his eyes will also begin to shift to midline as well. (We’ve already seen this happen once or twice.)

Tuesday: We had two appointments on Tuesday. Our first appointment was an evaluation with a Vision Therapist, Marie. Marie came to the house and sat and chatted with me and Sol. She watched how Sol interacted with me, had him hold a rattle, and then decided that she would come work with him twice a month. From what I understand, she will have exercises that will help support Sol’s functional vision, something that will develop as he gets older.

Later in the afternoon, we drove up to Sol’s neonatologist for his follow up. We’d last seen her in November, just a couple of weeks after Sol was discharged from the hospital. After his measurements were taken – 11.8 pounds and 24 inches, she watched him in tummy time, saw him put his fists in his mouth, and heard him chatter. She told us that he was growing by leaps and bounds and couldn’t believe how much he’d changed since November. Woo!

Wednesday: Wednesday was another big day for us: our follow up with cardiology. Overshadowed by his stroke and bleeds, Sol was also born with an ASD, a small hole in his heart. They’d also thought they saw a clot forming just below his heart, and wanted to check in on both. I held Sol after they checked his weight (now 12 pounds) and took his vitals, while a tech ran his echocardiogram. Afterwards, I chitchatted with his cardiologist, who I immediately fell in love with. Both of the heart issues (possible clot and ASD) had resolved themselves – yippee! We were officially discharged from Cardiology – no more follow up required. His cardiologist told me how well he was doing and when I expressed my concern over his vision and some of the side effects of the stroke, she stopped me in my tracks and reminded me of my favorite word – neuroplasticity. She also said how lucky we are, that he is miraculous. His brain has and will continue to do amazing things in spite of the injury, and I need to just keep working at it.

Thursday: We ended our week on a light note with Sol’s OT appointment. Lots of stretching and playing with toys was our focus, and our homework included a continuing focus on engaging Sol’s right hand as well as encouraging him to flatten his hands during tummy time. Easy peasy, right?

After our crazy week, Sol and I boarded a plane with his Nana to spend a few days in sunny Tucson. Our plan is to soak up some warm sun rays and enjoy some much needed family time! Next week is our meeting with a vision specialist from UMD who will help us assess Sol’s functional vision and who will help us come up with a plan to continue to focus on and improve his sight.

Naked time is the best!

Exhausted. It’s been a busy week!

Update on the Eyes

January 9, 20156 Comments

We’re in between two very important appointments that focus on Solly’s vision. The first, a check in with our pediatric ophthalmologist, was yesterday afternoon, and that appointment brought us both really good news and then news that was, as the French would say, comme ci comme ça.

The good news – the really good news – is that Sol’s eyes are perfect. Healthy and normal, meaning they can see. And, boy, was he a trooper to go through the eye exam to determine this. Eye drops for dilation and then lights shinning into his eyes for more than a comfortable few seconds.

The news that is more eh than anything else is that we don’t know what’s causing him to gaze to the left. Our ophthalmologist has a hunch that it could be Cortical Visual Impairment or CVI. This refers to an impairment in how the brain processes the image that is sent over from the eyes. An impairment might be field cut vision, meaning that he has trouble seeing things on one side, or he could have a preference for certain objects. Our doctor is referring us to a specialist for an assessment to see if CVI could be the culprit. The positive note here is that with early intervention, vision with CVI can drastically improve. (Hey, neuroplasticity!) The other positive note is that the doctor suggested we get in touch with a vision therapist to begin treatment as early as possible. Good thing we already have that on the calendar for next week!

After our appointment, I posted our scenario in the CHASA Facebook Group (a place for Mom’s of pediatric stroke survivors – an awesome resource for Mamas like me!) to see if any other babies had a similar eye gaze to Sol’s. We’re not alone! I found that some causes of the gaze were linked to CVI while another was linked to small optic nerves and others were without cause and babies simply grew out of it. The bottom-line is that all of those babies’ vision improved drastically in the first year.

The progress that we’ve made so far with Sol’s vision in PT and OT along with some of the milestones he’s reached tells me (and my gut) that he can see to some extent and we’ll need to keep working to get those eyes to the midline. More to come. Onward and upward!

Sol the Man

A blog about life after Pediatric Stroke