Category: Sol’s Progress

Meant To Be

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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.

Falling asleep during the EEG
Happily done with the EEG

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!

It Takes a ‘Ville

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Working on sitting

Working on sitting

It’s been one heckuva month! After feeling like we’d been in plateau-mode for so long with Sol’s milestones, this month, Sol kicked it into high gear and ticked a couple more items off his list.

In the gross motor skill department, he started rolling over his right shoulder. Previously, he’d only been able to roll to the left. This is amazing news since his right side is so much weaker than the left: this means all of our work in PT is paying off and his right side and shoulder muscles are getting much stronger. This also means danger: Sol is no longer immobile! If I put him down for 2 seconds, he rolls to the other side of the room! Speaking of mobility, Sol is also starting to pull himself forward on his belly. We get one or two scoots in a row, primarily to get to toys. This kid wants to move! He’s also getting so much stronger with sitting and can sit for longer periods of time. Our next goal with sitting is to sit taller and teach Sol to catch himself with his hands if he begins to tumble over. Since he is scooting forward using his arms, we are now working in PT to get his legs moving, primarily by teaching him how to pull up from kneeling to standing.

Eating avocado

Eating avocado

Sol has global delays, but one area in particular that began to worry me was language. He started cooing around 3 – 4 months, but months 6, 7, 8, 9, and 10 came and went with absolutely no babbling. Last week, I was talking to our OT about Sol’s eating and told her that I was reluctant to start him on table foods given his tricky history with feeding. Our experience with therapists and nurses repeated itself as she, one, reminded me that he actually didn’t have feeding issues, that any issues with “feeding” were actually related to reflux and constipation. Two, she figured that he was actually putting his hands and other things in his mouth not only because he was teething (we’re up to 6 teeth now!), but also because he was naturally craving something to chew. So she sat Sol down, cut up some watermelon she’d brought for lunch, and gave it to him. It was a hit! Sol is now having blueberries, raspberries, avocado and other small bites with every meal. And the most amazing thing is – with this new venture in feeding, he has also started babbling! He is now saying bwahbwahbwahbhwah and mamamama quite frequently and is constantly jibber jabbing. I’ve said it before, and I’m sure I’ll say it again, these therapists are AMAZING.

Our appointments this past month were generally the usual, with the exception of a hearing test (we passed!) and an aerodigestive clinic. The latter was a 4 hour appointment that focused on Sol’s feeding and is probably better addressed in a separate post altogether. (Let’s just say it was a very long day!) I also sat down with the director of Georgetown’s Center for Brain Plasticity and Recovery to walk through Sol’s MRI for the first time. I learned so much and while Sol’s MRI is a bit terrifying to see, the director reassured me that it she’s seen kids with similar MRIs go on to walk, talk, attend college, and live relatively normal lives. I will also likely walk through this meeting in a separate post, so stay tuned!

Hanging out in the park during an Open House

Hanging out in the park during an Open House

Finally, and most exciting of all, is a huge decision we made this month. As we found over the last year, there’s a lot of value in the old saying “It takes a village to raise a child.” As organized as you can be, it just isn’t possible to be superMom or superDad all the time – you need help! We’ve had incredibly supportive friends in DC who would be there in a heartbeat if we needed them, but it’s hard to ask for help, even when it’s offered often. So, it’s off to family we go – we are moving to Nashville, Tennessee in just two weeks where we’ll live 5 minutes from my sister, 10 minutes from my parents, and 10 minutes from Vanderbilt’s Pediatric Stroke clinic. This move is bittersweet – we’ve loved starting our careers and family in DC and will miss our friends immensely. However, we are very much looking forward to going “home” where we can really focus on keeping ourselves happy and healthy and, most importantly, continue to help Sol recover and get stronger (and not to mention, let his Nana, Papa, Aunt, Uncle, and cousins spoil him rotten!).

Catching Up

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Warning: This is a longer post than most! 

Hanging with Dad in Jasper, AB!

Hanging with Dad in Jasper, AB!

Our little family of three spent the last two weeks trekking around three national parks in Canada. It was such a refreshing break from our one million weekly appointments. Solly loves to travel and particularly likes it when there is turbulence on the airplane. He giggles and laughs while I am white-knuckled and trying to remember to breathe! We enjoyed much cooler temperatures, nearly daily hikes, and got to spend time with close friends and Sol’s Nana and Papa, all who joined us on our vacation.

As I mentioned in my last post, the past couples of months have been really, really tough on me, and this is a big reason why I haven’t updated the blog. After Sol turned 6 months old, he really stopped progressing as quickly as he previously was – or as quickly as I perceived him to be progressing. The most worrisome part was he became exceedingly difficult to feed, some days taking in only a bottle or two. As you might expect, with all the eating he wasn’t doing, he stopped gaining weight and plateaued around 14 pounds. This sort of thing is scary for any Mom, especially for one dealing with a stroke survivor.

We’ve teamed up with a number of new doctors to try and solve the issues and get back on track, and it seems like we are. Sol seems to be eating more consistently and, at our last check up, finally put on some weight. As I write this, Mike is feeding Sol solids while Sol giggles away. With some luck, he’ll continue to pack on some weight and be able to chip away at getting stronger and meeting more milestones. We need him to continue to grow so he can get stronger and so his brain can make more connections. Now, at 10 months old, Sol is developmentally around where a 6 or 7 month old might be.

Here’s the breakdown of where we are:

Medical

The doctors appointments have been oh-so-plenty. On the plus side, at the end of May, we were able to wave goodbye to hematology after Sol’s third round of blood tests came back normal. No clotting disorders and no indication that he could have another stroke – nothing to worry about. The hematologist mentioned that he is heterozygous for Leiden Factor V, which is a clotting disorder if homozygous, but it had nothing to do with his stroke and won’t affect anything for him moving forward.

We gained some new doctors in the past few months, namely a nutritionist, a GI doctor, and an Ears, Nose, and Throat doctor. We began seeing the nutritionist and GI doctor in June after we noticed the eating issues, and have seen them a total of two times so far. In our initial appointment, they drew blood to check for any food allergies and intolerances, and thankfully, those tests came back negative. Thinking that Sol’s eating issues could be related to an upset stomach or severe reflux, which is common in kids with CP, they switched him to a new, hypoallergenic formula and a new, stronger reflux medicine, Prevacid. We are fortifying his formula to give him some calories with hopes that he’ll start adding some rolls of fat to his tummy. The Ears, Nose, and Throat doctor looked at his frenulum, which was a tad shorter than it should be, giving him slight tongue-tie. Even though he could eat as is, the ENT doctor decided to snip his frenulum so his tongue could move freely, just in case that was causing an issue. In the weeks since we last saw all three doctors, Sol has been eating his bottles very consistently, and is starting to eat more solids – a step in the right direction, for sure!

We’ve also had a check up with our ophthalmologist, who noted that Sol has strabismus (lazy eye) in both eyes, making his eyes turn outward slightly. When we saw the neuro ophthalmologist much earlier this year, he predicted that this would happen as Sol’s vision continued to mature. There’s a chance that the double strabismus could self-correct, so we aren’t going to worry about it now and will check in with him in a few months.

There are no other major doctors appointments scheduled until September (woo!), so our focus in the next month is lots and lots of therapy.

Therapy

Workin' those arms

Workin’ those arms

With those one million doctors appointments came a million therapy appointments – and new therapists! We are now seeing PT three times a week, OT once a week, Speech Therapy (ST) twice a month, Vision Therapy twice a month, and Developmental Therapy once a month. In other words, we’ve got a full calendar!

In PT and OT, we are focusing on getting Sol to bear weight in his arms, particularly his right arm, as well as sitting, transitions, and engaging his right hand. Solly is definitely getting stronger! He sat independently for the first time around Father’s Day, but struggles to sit up straight, especially since his arms and trunk are weak. On his tummy, he is kick, kick, kicking his legs so hard, bringing his legs up and underneath him, and alternating leg kicks. I just know that once we strengthen his arms and trunk, he’ll be zooming around and I’ll have trouble keeping up! He’s also starting to squirm and pull his body forward when he’s on his belly. His right side has really woken up over the past couple of weeks. He’s now able to move his shoulder and balance on both elbows, something that was not possible just weeks ago. Our next goals include sitting even more independently and moving in any way with four-point crawling being the end goal.

Sol’s vision continues to improve weekly. He is now looking at objects and reaching for them with his left hand, and he can turn his head and look at you briefly when you speak to him. We’re working towards having him hold his gaze for longer periods of time.

Speech Therapy and Developmental Therapy both are the result of Sol’s eating issues. While Developmental Therapy technically covers all therapies, we are focusing on eating and developing oral muscles in both ST and DT as Sol’s facial and oral muscles are weaker on the right side. He is doing so much better with his eating, now consistently eating 3 – 4 full bottles a day as well as one packet of solid food.

What’s Next

Today, I am meeting with one of the directors of Georgetown’s Center for Neuroplasticity. We’ve spoken with her a couple of times about getting involved and driving awareness of pediatric stroke. Today’s meeting is all about Sol: I’ve shared his MRI images with her and she will walk me through them today so I understand where Sol’s brain damage is and what type of event caused it (something that was never clearly explained while we were in the NICU).

Other than that, we are working the therapy to help Sol get caught up on his milestones – and, of course, having lots of hugs, giggles, and kisses along the way!

Seventh Inning Stretch, Tuck, and Roll!

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I got the best present for my first Mother’s Day. For the first time ever, Sol rolled from his back to his tummy. Granted, the first time he rolled was also while he was in the pool on a raft, but he got it down pat on the ground the next day. He’s now rolling all over the place! Here’s proof that Solly can stretch, tuck, and roll:

Cheering on Mom!

Cheering on Mom!

Sol’s seventh month was full of just a few doctor’s appointments, lots of therapy appointments, and tons of new experiences. First, the fun stuff – new experiences! He went to his first road race to cheer me on, to his first horse show, his first soccer match to cheer on his cousin Eli, and two trips – one to Nashville by plane and the other to Hilton Head by car. As much as we get out of our almost daily therapy appointments, I believe that introducing him to different environments and people are also doing wonders for his recovery. It seems as though each time we take him somewhere, he comes home with a new trick. For example, when we were in Nashville, we noticed that he was kicking his legs much more than usual and at random intervals, and he was in Hilton Head when he rolled the first time. He’s making such great strides.

Playtime in the pool

Playtime in the pool

Now that we are rolling, in PT and OT, we are now focusing on sitting, rolling to the right (he’s moving just to the left now), and kneeling against a cushion while reaching for toys. All of these actions are to get him to the next major milestones of sitting and crawling. My absolute favorite thing about each of my therapy sessions is there is no “if”, there is only “when” – “We are doing this for when Sol will crawl.” Sol’s therapists are doing such an amazing job with him.

Sportin' my new helmet

Sportin’ my new helmet

On the medical front, we’ve had a few appointments this past month. Sol is now wearing a helmet for plagiocephaly, or flat head. Because he could only see out of the left side for so many months, he developed a flat spot on the back right side of his head. His plagiocephaly is only “moderate”, but because the flat spot could lead to other vision and feeding issues, I wanted to correct it. We also had x-rays of his hips after one of his therapists expressed concern about hip dysplasia – meaning that his hip could be prone to dislocation, a problem for when he starts to walk. Luckily, the x-rays showed no sign of hip dysplasia and everything looked great. One of Sol’s legs is turned in slightly, however his pediatrician thinks the turn-in is occurring at the knee and will resolve itself when Sol begins to walk.

Snuggly baby

Snuggly baby

All in all, a great month. We’ve got a few doctors appointments coming up in the next few weeks – hematology, neurology, and NICU follow up – but other than that, we’re just going to keep on chugging and chip away at milestones.

6 months!

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Hey Dad, I'm 6 months old!

Hey Dad, I’m 6 months old!

I had trouble getting started with and completing this post. Today is Sol’s 6 month birthday. Part of me is so excited that he’s been with us now for half a year and continues to improve and recover really well from his stroke. The other part of me hates the monthly milestones because they force me to realize how far behind Sol is from a “typically” developing child. In reality, he’s only a month or so behind, but it’s very hard for me to be ok with the delays, particularly since we don’t know how he will end up recovering. (I’m sorry for the brutal honesty and not-as-positive tone here – it’s just part of this roller coaster ride we call recovery.)

Here’s a quick update on where we are:

Medical

Just a cool dude in a fish hat

Just a cool dude in a fish hat

As you may recall, in addition to our pediatrician, we see a hematologist, a neurologist, an ophthalmologist, and a neonatalogist as a follow up from our NICU stay. We’ve found out from our most recent visit to the hematologist that Sol is not at risk for blot clotting, so another stroke is very unlikely. Whew. Our neurologist has decided that, since Sol has not had any seizures since he was in the NICU, that he can gradually outgrow his anti-seizure medication (Keppra) dose over the next 6 months, with the ultimate goal of being removed from the drug altogether when he’s a year old. She was concerned over his slow head growth and noted that while it’s likely due to extensive brain damage as a result of the stroke, we may want to do xrays of his head just to make sure his sutures have not prematurely closed and are hindering brain growth. I plan on chatting with our pediatrician next week to make sure this is necessary before moving forward. My goal is to help Sol progress as much and as quickly as possible, but I definitely don’t want to put him through any additional testing or procedures unless it absolutely has to happen.

This month we also saw a neuro-ophthalmologist who gave us a great diagnosis on Sol’s vision. Solly keeps looking around more and more each day, and is really improving his hand-eye coordination on the left side.

Therapy 

Our therapy plan is as follows: PT twice a week, OT twice a month, and Vision Therapy twice a month. In PT and OT, we are continuing to focus on getting Sol to use and strengthen his core muscles and right arm so he can learn to sit up and get ready to crawl. He can now hold a

Rattles are delicious

Rattles are delicious

supported seated position quite well, and loves it when we prop him up on an exercise ball and bounce him. In fact, he loves moving so much that one of his therapists says his theme song is “I like to move it, move it.” Sol’s arm and leg muscles are becoming more tight as a result of the stroke, so we stretch him out every day. We are also working on encouraging Sol to keep his right hand open and use it to hold toys and grab his toes. While he isn’t grabbing his feet independently, if we stretch him so his feet dangle in front of his face, he’ll grab them and put them in his mouth. This is huge progress because it means Sol’s tight muscles are getting more limber!

Vision Therapy is slightly less intensive since it’s difficult to instruct Sol how to use his eyes and vision. Instead, our therapist observes him every two weeks and notes how much he’s improving every time, especially focusing on how attentive he is to surrounding toys and faces. We’re starting to see a remarkable improvement in his ability to keep his eyes in midline, and hope this continues to improve over the next few months.

The next major milestones we have in sight are sitting independently, pushing up from his tummy to his hands and knees, and rolling from his back to his tummy.