Warning: This is a longer post than most!
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:
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.
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.
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!