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!

Mama Guilt, Be Gone!

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Mama-and-Solly

Flashback to one year ago

All Moms struggle with guilt. Whether its choosing to go back to work a few weeks after her baby is born or wondering if she’s feeding her kids the right foods or any number of other situations, it’s a common feeling among all mothers. In my particular situation, I spent the first 10 months of Sol’s life feeling guilty that something I did (or didn’t do) caused Sol’s stroke. Again, this is a common source of guilt among Moms of stroke babies, and in 99% of the cases, the stroke was the result of a random mutation or a clot that no one saw coming. But, I always wondered if maybe I stopped running a little earlier or if I had passed up that occasional Starbucks Chai Latte, Sol’s situation would have been different.

Thankfully, right before we left DC, my feelings of guilt were put to rest.

After 10 months of choosing not to look at Sol’s MRI out of pure fear for what it looked like, I decided I would feel better knowing what it looked like. I asked Dr. Newport, the director of Georgetown University’s Center for Neuroplasticity, a woman who I greatly admire and trust, to view his MRIs and walk me through them.

Those 10 months of not knowing what those images looked like may have worked in my favor: based on what the NICU doctors had told us, I imagined the absolute worst – a sliver of healthy brain tissue and not much else. Not so much. I assure you, his MRI is still scary to look at. I learned that he had at least three strokes, one in the left MCA (ischemic) and one in left and right ACA (hemorrhagic), and these strokes were massive, completely destroying brain cells in these areas. The MRI also showed a spot in the right MCA, which could have been a fourth stroke or the result of blood in his brain after the brain injury.

Sounds like a lot, right? It is… BUT what’s promising is that, through the areas of research that Dr. Newport and her team are commanding, doctors are finding that if one area of an infant’s brain is injured, other areas on the other side of the brain can take over. For example, since the left MCA was impacted (this houses the speech centers, for example), the right MCA can take over those duties. Because both the right and left ACAs, the areas that control executive functioning (think attention and organization skills) were affected, we are unsure how his brain will rewire to compensate for these areas. In fact, we’re unsure how his brain will rewire altogether. Because the left side of his brain bore the brunt of the damage, we DO know that his right side will always be weaker. Other than that, how well he continues to recover is left up to God, good luck, therapy, and Sol’s will and determination. He could very well be wheelchair-bound or never gain use of his right hand, but watching him work hard on standing in therapy and seeing him concentrate to bring his right hand to a toy tells me that he will make strides in all areas.

And, going back to that talk of guilt, Dr. Newport said that, based on his MRIs, it was obvious that nothing I did during pregnancy and nothing that the doctors did during delivery caused Sol’s stroke. It was most definitely a clot or multiple clots that broke off from the placenta during delivery – nothing more, nothing less.

While this news doesn’t make Solly’s situation any better, it does put my mind at ease and allows me to focus more on creating the best environment for his recovery – and that WILL help him improve.

Life Down South

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It’s been a busy two months. Crazy busy full of doctor’s appointments, follow ups with specialists, therapy evaluations, regular therapy appointments, and new prescriptions. Oh, and did I mention that we also sold a house, bought a house, and moved a baby, two adults, two puppies and a horse to the South? And celebrated Sol’s first birthday?!  Yep. Crazy busy!

As busy as its been, though, our move to the South has taught us to slow down, stop multitasking our lives, and focus on the important stuff. I’ve decided to put my career on hold and make Solly my sole priority. I’m now able to give all appointments and Sol-moments my full attention rather than try to fit in a call here and a meeting there. It was – and continues to be – a struggle at first as I felt like I’ve lost a major part of my identity, but I’m starting to find myself more relaxed and, most importantly, more appreciative of all the time I get to spend with Sol.

Life hasn’t been easy these last couple of months. There’s been good days and there’s been bad days. The roller coaster of emotion continues. However, we’ve gotten connected to some amazing doctors at Vanderbilt, we’re working with some pretty great therapists, and we’ve gotten some answers and guidance that we previously hadn’t had. I’ll give a full update on the medical and therapy front soon, but for now, here are some pictures of Sol enjoying life down south.

Mid-day snack in Brentwood
Introducing Sol to Noshville
Smash cake!
Sol loves his swing
Snack with Bentley
Tummy time

Thank you for following our journey and for your continued thoughts and prayers. We appreciate 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!