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!

6 months!

April 9, 2015April 9, 20153 Comments

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

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

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.

One, Two, Three, Four

February 21, 2015February 21, 20151 Comment

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.

Sol loves his Bebe!

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.

Bella gives lots of tummy time encouragement

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

January 26, 2015January 31, 20151 Comment

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?