Mama Guilt, Be Gone!

December 2, 2015February 2, 2016Leave a comment

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

November 29, 2015Leave a comment

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!

Catching Up

August 10, 2015August 11, 2015Leave a comment

Warning: This is a longer post than most!

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

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!

May 21, 2015May 29, 20151 Comment

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!

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

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

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

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.

I Spy

April 1, 2015May 29, 20154 Comments

I spy with my little eye someone who loves to smile!

And speaking of eyes, we finally have a firm grasp on what’s going on with Sol’s eyes. Over the past few months, I felt like we were getting hunches and ideas from specialists, but no concrete diagnosis. Two weeks ago, I decided to listen to my intuition and took Sol to see a pediatric neuro-ophthalmologist (how’s that for a mouthful?) to see what’s what.

Boy, am I glad I did.

This appointment took us to Children’s National for a second time, and like our appointment there with the cardiologist, I was so happy and at ease with this doctor’s attitude and outlook for Solly. As soon as he walked into the room, he said, “Before I begin, I want you to know that there are many parents who’ve sat in that chair, with a diagnosis like your son’s. I probably will see at least one other parent like you today. Stroke in children is very common.” Many doctors look at Sol like he has three heads, so this comment set the tone for a really great appointment.

The doctor then examined Sol’s vision, having him look at and follow a white card with black shapes on it, as well as a series of lights. He got right up to Sol’s face (who giggled when the doctor spoke to him), and picked him up, spinning him around in a chair to watch how his eyes moved. He looked into Sol’s eyes to check out his optic nerves. Then, because I didn’t have a copy of Sol’s MRIs, he read through the radiologists’ notes.

As a result, his findings were:

– Sol can see. There’s no doubt about it.

– Based on his medical history (his “rocky perinatal period”) and the fact that his vision is continually improving, he diagnosed him with delayed visual maturation (DVM). From what I’ve read about DVM, it presents very much like Cortical Vision Impairment, but self-improves within the first year.

– He has an obvious left-sided preference, but can move his eyes to the right. The left-sided preference is likely due to one of the areas in his brain that was impacted by the stroke. It’s possible that he could have visual field deficits – in other words, a loss of the peripheral vision on the right side.

– His eyes will likely move towards midline and the right side on their own. We will continue to work on this skill in vision therapy.

In the weeks following this appointment, we are continuing to see improvements in Sol’s vision. He is looking at us, his therapists, the dogs, and toys, and watching movement very consistently. The biggest development came today during our Physical Therapy appointment: Sol turned his head, looked at a toy that his therapist was presenting to him, and he reached out for it with his left hand. Multiple times.

It sounds like the littlest thing, but this was a huge first for Solly – particularly huge considering nearly 6 months ago, a fellow in the NICU told us that Sol could be blind as a result of his stroke. Our little man is continuing to show strength, will, and stubbornness, and we couldn’t be happier!