Category: Sol’s Progress

Status Check

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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?
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Mr. Serious
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Snuggling with MomIMG_1695

The Weekly Roundup: Luck, Leaps & Bounds

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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!2015/01/img_1648.jpg

Exhausted. It’s been a busy week!2015/01/img_1633.jpg

Update on the Eyes

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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!

Sunshine and Milestones

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This post is a fun one!

Over the holidays, Mike, Sol, and I took a plane down south to meet my family and enjoyed 10 days of sunshine and 80 degree weather. We flew into Puerto Rico and spent a couple of days there before flying to the British Virgin Islands for a weeklong cruise on a catamaran. We had an amazing time: Sol got to meet all of his cousins, get rocked to sleep on a boat, and hang out in just his diaper, all day long. He got loved on almost 24 hours a day. It was so nice to get away from all of our doctor’s and therapy appointments for a week. I felt like, for the first time, we could really just enjoy spending time with our son.

What was most exciting for us were all the “firsts” for Sol – not just lifetime firsts, but some pretty big milestones, too!

Lifetime firsts:

  • First time on an airplane. (He really is a champion traveler!)
  • First time on a boat.

Major milestones:

  • First smile (!!)
  • Found and started looking at his left hand
  • Found and started sucking on both hands, including thumbs
  • Started cooing and talking
  • Starting to hold toys, with both hands
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Family photo, with Sol looking for his fist

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First smile

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Sol & Daddy, loving the ocean breeze

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The cool kids (Sol & his Papa)

Eyes On The Prize

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On the outside, Sol looks like a regular, albeit small, 3 month old. Despite what his MRI might suggest, he can move all arms and legs, fingers and toes, and can do so fairly symmetrically. The doctors have noticed that his reflexes on the right side are slightly stronger, but he otherwise has good strength all around.

One indicator that something is amiss is when you look at his eyes. They almost always are gazing to the left. I had a couple of rough days in December when I’d convinced myself that he could not see. No, that wouldn’t be the worst thing in the world (heck, the fact that Sol has progressed so far in his first 3 months is a huge blessing!), but the thought of trying to raise a child who would never get to see what his Mama and Daddy looked like or watch a sunrise or head to the movies to see the latest release was a heartbreaking thought. Again, Sol’s therapists and my family have pulled through, reminding me of all the times he moved his eyes when I spoke or squinted when we turned on a light. He can see, it’s just a matter of rewiring his brain so that his eyes are midline and can track in response to touch and sound.

While we’ve been focusing on getting Sol’s eyes to track during his PT and OT appointments, we’ve got some appointments on the horizon that will really focus on improving his eyes. The first is today, a followup with Pediatric Ophthalmology. We’ll be seeing the same Ophthalmologist who did Sol’s vision screen in the NICU. He will focus more on the structure of Sol’s eyes and will let us know if something with Sol’s ocular muscles is causing his gaze to shift to the left. Then, next Tuesday, we will be meeting with a Vision Therapist who will do an evaluation to see if we need to start meeting with her on a regular basis (bringing our count of therapists up to 4!) or if there are some activities our current therapists can begin incorporating into our sessions. Her prescription will help Sol’s eyes coordinate better, so that when he hears or feels something, he will know to look in that direction.

Gazing up and to the left:

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