Lately: Hippotherapy and Full Weeks

Y’all, it has been a week of crazy busy-ness. We have 11 Solly-related appointments this week alone and there’s really no slowing down until we go to Virginia Tech next month for intensive therapy. To say I’m exhausted is an understatement. Maybe the word “overwhelmed” more appropriately captures my state of mind right now.

But, enough about me. Here’s a quick update on Solly:

Last week, our beloved Nanny Jen captured some great photos of Solly at his hippotherapy appointment at Full Circle Therapy:

Have I mentioned how much Solly loves hippotherapy? This therapy has been amazing, not only because it works so many muscle groups at once and has made Solly incredibly strong, helping him to move forward in independent sitting and taking steps in his gait trainer, but also because it is a fun therapy for him. He acts like it’s play time and not therapy. Every time we hit the driveway for his hippotherapy appointment, he starts shaking and laughing with pure excitement. He cannot wait to sit up on his horse. I have loved horses for as long as I can remember, but having a child with special needs has introduced me to a whole new level of love for these animals. Continue reading

Meant To Be

The second we moved to Nashville, it was clear that we were meant to be here. After almost a full year of medical struggles where it felt like we were always working to get on one doctor’s calendar or fighting the guidance of another, once we got to Nashville, everything sort of just started to fall into place. Even our trip to the DMV was a breeze!

We largely timed our moved around the availability of Sol’s new neurologist, who, after receiving a referral from our DC neurologist, was able to fit us into her schedule on October 1st. We packed up our home in DC on September 29th and travelled (me and the pups by car, Mike and Solly by plane) to Nashville on the 30th.

At our neuro appointment, we were referred to a physiatrist (in short, a movement doctor who will follow Solly for all of his childhood). This particular physiatrist typically has a 3 month waiting period to get on her schedule, but the day after our neuro appointment, I received a call from the physiatrist’s office saying they had a cancellation for the following week and would I like that appointment? Yes, please! The physiatrist then referred us for evaluations by physical, occupational, and speech therapies, as well as an appointment with another hard-to-book neuro ophthalmologist. We saw the neuro ophthalmologist only days later, thanks to another cancellation, and even though a friend warned that it’d likely be several months before we would be seen by the therapy department, we had all of our evals and were on a regular therapy schedule within two weeks of arriving in Nashville. We couldn’t have asked for a smoother transition!

Here’s a quick update on where we are on the medical side of things:

Neurology

Sol’s neurologist is an amazing woman. Our first appointment with her was so unlike our previous neurology appointments where everything seemed like a guessing game. (In our last neuro appointment in DC, the doctor said she was “nervous” about ever taking Sol off anti-seizure meds, even though he’s been seizure-free since the NICU. I’ve gotta say, hearing a doctor say she was nervous without any game plan didn’t give me a lot of confidence!) Our neuro reviewed Sol’s MRI and while she agreed that his damage is widespread and that we’ve got a lot of catching up to do, she wanted to move forward with an EEG to see if he was having any sort of seizure activity. She explained that though he has quite a bit of damage from his strokes, that doesn’t make him any more susceptible to seizures than any other stroke survivor. About 30% of pediatric stroke survivors will develop epilepsy, so there will always be a chance of recurrent seizures.

We went into Vanderbilt Children’s in early November for his repeat EEG. It stirred up so many horrible memories of our time in the NICU, where it seemed that he was always hooked up for an EEG which typically meant that we couldn’t hold him. Awful stuff. This time around, Sol was, at first, irritable when the tech affixed the sensors, but we were able to get his mind off of it with songs and toys. The EEG involved seeing how his brain responded to a series of blinking lights, how it was at rest, and how it reacted to falling asleep and waking up. Solly was a trooper and we were done with the EEG in about 45 minutes. Easy peasy! The best part was receiving a phone call from his neurologist 3 days later, saying he should zero seizure activity and his EEG looked great. His left side showed delayed responses, which, given the majority of his damage is there, makes sense and isn’t surprising. Our plan is to start weaning him off of Keppra (his current anti-seizure med) in the Spring was cold/flu season is over. Our next follow up with Solly’s neurologist is in January.

Physiatrist
I was excited to meet our physiatrist. This is the one doctor I always wished we had in DC, but no one ever connected us with one. Basically, our physiatrist oversees all therapy and makes sure Sol gets exactly what he needs to support his development. Our first appointment with her consisted of a general evaluation of what he’s doing and how he’s moving, and what other doctors we needed to see now that we are in Nashville. Now that his physiatrist got us synced up with all therapists, the ophthalmologist, and a nutritionist, we are seeing her once again next week for an update. It’s obvious that this doctor has loads of experience and I really look forward to seeing her on a regular basis.

Neuro Ophthalmologist 
Sol’s new neuro ophthalmologist took a look at Sol’s dilated eyes and told us what we already knew: the structure of his eyes is perfect, it’s possible he has a visual field cut (think: partial vision loss on one side), and he may also have strabismus. What’s nice is that he wants to wait and see how Sol’s vision develops before coming up with a solid plan of attack, so we don’t need to see him again for another year or two. I do, however, still have some concerns about how his vision is slowing down his gross motor development, so I may push to see another vision specialist sooner than that.

Nutritionist
The last of Sol’s specialists that will be following Solly is a nutritionist. You may recall that we’ve had quite a bit of trouble with Sol’s feeding over the last 6 – 8 months and this has (had!) been one of my biggest points of anxiety. Luckily, we’ve been having some major success with a feeding therapist (more on that soon), and as we’ve gotten better with eating, she and our physiatrist wanted Sol to see a nutritionist who could help us beef up Sol’s caloric intake. Our nutritionist is a super sweet lady. She walked me through Sol’s growth charts and said what we need to do is get him to gain some weight so his weight and height percentiles are more proportionate. (He’s about 25% for height and 2% or less for weight.) First of all, she took Sol off of Alimentum, thinking that he may not be eating as well because “it tastes like gasoline”, and put him on a high calorie version of Pediasure. Then, knowing that I’m a very goal oriented person, she gave me a target number of ounces he needs to consume every day as well as a daily calorie goal to fatten him up and make up for the weight he didn’t gain over the summer. Fortunately, after a couple of weeks, Sol has really taken to the Pediasure and has put on about 3 pounds since we’ve moved here. We check back in with her in February and I’m hopeful that Sol will continue to add the pounds so that appointment will be positive.

Solly has also been super busy at multiple weekly therapy appointments, but I’ll give a therapy update in our next post.

Thank you for keeping up with Sol’s adventures. We are so grateful for you!

The Way, Way Back

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!

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One, Two, Three, Four

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.

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Sol loves his Bebe!

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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.

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Bella gives lots of tummy time encouragement

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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.

Status Check

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