Lately: On Specialists and Therapies

The other day, a neuromotor researcher asked me to send her a list of all the therapies we are doing as well as the specialists we regularly see.  With all the traveling we did and changes Solly went through in the last year, this seemingly simple request was not so simple! After our year of change, in my mind, we really pared down the number of therapies Solly did each week, but our schedule is still pretty full. The biggest difference is that we have more therapies that are fun for Sol and fewer that require him to sit still in a chair.

After racking my brain, here is the list that I sent her:

Continue reading

What A Ham

After Solly was born, we had a month-long stay at the Georgetown University Hospital’s NICU. There, the neonatologist had told us that in order to be discharged, we had to get Sol’s seizures under control and come up with solutions for his oxygen levels and feeding. Seizures were the easiest thing to get under control, followed by removal of all oxygen support. While we were confident that Sol would come home without any feeding support, some of his doctors were less-than-optimistic. I remember expressing some feeding concerns to one of his rounding doctors, a Fellow who was spending some time at Georgetown, and her exact words to me were: “I don’t think he’ll ever eat by mouth. He may be able to have some pleasure feedings by mouth, but he’ll probably go home with a g-tube.”

Less-than-optimistic, right? It was definitely not the kind of thing we wanted to hear.

Luckily, Solly is stubborn (just like his Mama and Dada!) and proved that doctor wrong, leaving the NICU a little over a week later without any feeding support.

However, since leaving the NICU, feeding has continued to be a struggle for us. Sol’s strokes affected his ability to coordinate muscles, including facial muscles, as well as dampened some of his sensory abilities. At three years old, he is still taking the majority of his calories in by bottle and eating some finger foods, but primarily favoring purées that he can eat by spoon or feed to himself with his fingers. We’ve been in weekly feeding therapy since he was one year old to address his muscular challenges as well as a few behavior issues. Progress has been slow, but entirely worth it, especially after we switched to a new, very experienced feeding therapist, Linda, at High Hopes in Franklin, TN.

Continue reading

Word of the Day: Apraxia

Definition: Apraxia is a motor disorder caused by damage to the brain (specifically the posterior parietal cortex), in which the individual has difficulty with the motor planning to perform tasks or movements when asked. (Source)

I remember the first time I heard the word “Apraxia” mentioned as it applies to Solly. It was back in D.C. and Marie, our vision therapist, was holding a teeny tiny baby Solly. She placed him on her left side, trying to get him to move his eyes to look at her. It was difficult. When Solly was born, his eyes were stuck staring to the left side, and for the longest time, I worried this would always be the case. As she continued speaking to him, he started to dart his eyes over to the right side to check her out. It was progress. “It’s almost as if he has visual apraxia,” she said, meaning that he could see, he knew he needed to look to the right to see her, but his ocular muscles weren’t understanding what his brain was telling them to do.

Over the weeks that followed this particular appointment, we continued to work with Solly and his visual control began to improve. Today, if you were to meet Solly, you might see his eyes dance around as he focuses on you, but for the most part, he has good control over his eye movement. We know he sees (his Nana might tell you that he doesn’t miss anything!) and other than some possible peripheral visual field loss, the only thing he struggles with visually is this control over his eye muscles. In my book, since his control has gotten much, much better since those initial days, it’s not that big of a deal. He compensates quite well and it’s just something we’ll continue to watch and find ways to support as he grows up.

While the idea of difficulty with motor planning was often mentioned, especially with our new physical therapist, the term “apraxia” didn’t come up again until we were in Florida for our intensive therapy. While there, the physical therapist working with us watched Solly and suggested we have an evaluation with one of the speech therapists at Lampert’s who has years and years of experience with kids just like Sol.

She was amazing. If I could have packed her up and brought her back to Nashville with us, I would have.

She took tons of notes about Sol’s medical history, watched him eat, and asked him to move his mouth and tongue in certain ways. She explained that he has some apraxia, making it difficult for him to manipulate food in his mouth and move his mouth and hard and soft palettes to make different noises – or, to talk. She gave us a handful of exercises and stretches for Sol’s cheeks, lips, and tongue that will help bring awareness to each part of his mouth to help improve feeding and speaking. After just a couple of days, Sol was eating new textures, comfortably and easily. He’s also gained some weight since we met with her!

Difficulty with motor control affects almost everything Solly does – walk, talk, and grab for and look at objects. But that doesn’t mean that he can’t do them. We just need to teach him how and be patient with him as he figures out how to do what his brain is telling his muscles.

Years ago, I would have freaked out when I heard apraxia as a possible diagnosis. (Yes, it’s still a “possible” diagnosis as it’s not officially on his medical records, yet.) I probably would have jumped in bed, pulled the covers over my head, and cried non-stop. Now, I look at it as a blessing. It helps me understand how he’s processing – and not processing – what we’re teaching him, it tells me what types of people we need on his medical team, and it also reassures me that progress IS possible.

IMG_0518

Peekaboo! 

Augmentative and Alternative Communication

Even though one of Sol’s strokes completely wiped out his speech center, speech is one thing that I never worried about as much as I did gross and fine motor skill development. He’s always been behind in speech, especially expressive speech, but it’s one area where we continue to see gains, even if it’s just a new sound. Before Sol’s first birthday, I met with a neuro-developmental researcher who was studying speech development after stroke and much of her research found that if one area of the brain was damaged, its mirror would take over the skills typically assigned to that section of the brain. Because the right side of Solly’s brain had much more healthy brain tissue than the left, she assured me that the right side would likely rewire to house his speech.

To date, Solly has few consistent words other than “hi” “bye bye” and “dada”. He continues to experiment with new sounds, showing new control over his tongue, particularly after our recent hyperbaric oxygen therapy. Yet, because he has difficulty with motor control and has a hard time with sign language, we find it hard to know what he wants. His inability to communicate with us pushed us to want to find other means of communication, so when our developmental pediatrician suggested an Augmentative and Alternative Communication (AAC) device evaluation, we jumped at the opportunity.

img_4267

Playing on the iPad. Easiest evalation ever!

Last Friday morning, Solly and I got up bright and early for an 8am evaluation at the Vanderbilt Bill Wilkerson Center. We met with a very sweet speech therapist who sat down and asked about Solly’s schedule, how he is communicating, what he likes to do the most, and what his gross and fine motor skills look like. She also asked about the speech therapy that we’d done in the past year and learned about our foray into AAC, which has consisted of a Big Mac button, a Twin Talks device, and communication via simple pictures. We also talked about the simple signs that Solly knows (“all done” and “more”) and the words he uses consistently.

 

img_4264

The GoTalk 4+

Then, for the next hour, the speech therapist played with Solly. They played music games on an iPad, worked with simple low tech communication devices, and high tech communication devices that looked very similar to an iPad. Afterwards, she explained to me that she was looking at how he used his hands to make selections on the devices, how he organized his motor skills to make those selections, and how he made selections when the device was placed on his left side versus his right side. Based on her findings, she suggested we start with a low tech communication device similar to the GoTalk 4+ or GoTalk 9+, thinking these would be a good way to start communicating with Solly until he’s ready for a more high tech device or until he’s able to speak on his own.

Next week, we start with a new speech therapist at High Hopes in Franklin. After we meet with her and set Solly’s goals, we’ll buy or borrow a low tech device and get started communicating (better) with our kiddo. We’re excited to see where this goes!

Catching Up

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!