A Different Boat

Amidst the struggles of seizures, there have been some really positive developments I'm excited to share with you all.   This fall Wes has started attending the preschool program at Anchor Center. We've been going to the infant and toddler programs since Wes was 10 weeks old but the preschool program is a big change. I now drop him off in his classroom with the 4 other students for 2 hours a day, 2 days a week. It's a step of independence for him and letting go of control for me. Until this point, I've been actively involved in all of his therapy and education, but now I leave him in class and trust that they will do what's best for him and will help him grow and develop. And you know what, he loves it. He is truly thriving in preschool. He is using his gait trainer (kinda like a walker) to move himself down a really long hallway between classrooms, he is socially engaging with his peers, he is eating a ton of purées during snack time, and he is aware of the rou...

As Wes gets older, my posts seem to be getting further and further apart. I guess that's a sign that this life feels relatively normal to us. I'm not struck by the need to share the latest updates because it all just feels like our regular life these days. I do want to give some updates though because I love that you all love and care for him and want to know what's new.   Bad news is Wesley is still having seizures. He's not having severe ones, as seizures go, but it is still heartbreaking to watch him disappear for a couple minutes. Sudden drops in barometric pressure seem to be a major trigger for him which does not bode well for Spring and Fall in Colorado. We live with the fear that he will start seizing and we will be unable to get him to stop. In the past year, we've watched as several of Wesley's classmates have been rushed to emergency rooms for severe seizures and attended the funeral for another classmate whose seizures were uncontrollable. We are ...

Disclaimer: I sincerely hope this doesn't come across as offensive towards anyone with a cognitive disability.  That is not at all my intent.  I truly believe the most important thing is for a person to be able to feel and give love, everything else is bonus. Since Wes was only a few months old and the extent of his brain injury became more and more apparent, there has been a lingering question about cognition.  No one wants to audibly raise the question and yet we all wonder in silence "how much does he understand?".  We constantly look for clues that despite his motor, sensory, communication, medical, hearing, and vision difficulties, his cognition is intact, he understands the world.  I try not to be naive in thinking he would be disabled in every area but his cognition but still I have that hope.  It is one thing to live your life in a wheelchair (which we are still hopeful won't be the case for Wes) but another entirely to have no or limited abilit...

Waverly Kathryn Bowser Born on June 23rd at 10:02am 7 lbs 12.9 ounces 20 inches We had an elective c-section and everything went wonderfully.  She came out screaming and pink, Colby got to cut her cord, and we were able to hold her right away.  It was genuinely a wonderful experience and my recovery has gone quite smoothly so far.  She has a little bit of jaundice but is otherwise doing great.  Now we get to embrace the challenges and wonders of having two children. 

During one of my very early OB appointments, the midwife handed me a paper outlining the risks and benefits of a VBAC (vaginal birth after c-section) compared to a repeat c-section.  The paper was very clear that they promote VBAC and generally consider it the safer option for mom and baby (even though the medical community strongly advocated otherwise not even 30 years ago).  So, taking their medical advice, we have been planning a natural birth this entire pregnancy.  Through most of this pregnancy, I have been able to keep my fear in check and have held strong through appointment after appointment taking in the good news that our little Strawberry is doing wonderfully.  I've had moments of anxiety and definitely times where I'm fearful of our future, but generally I've been able to hold my chin up and push on. Then I hit 38 weeks... Wesley was born at 38 weeks and 1 day.   All the sudden I was hit with the reality that this little baby whose been growing i...

I can't believe it's been almost 3 months since my last post... Sorry for the lack of updates! One of the best things we've done since I last posted was Adam's Camp.  Thank you SO SO SO much to everyone who donated money to help with expenses for Wesley.  We couldn't have afforded to send him to this camp without you.  It was an amazing week for Wes full of intense days of therapy.  Each day he had an hour each of physical therapy, speech therapy, and occupational therapy with snack time and music time mixed in.  I was really worried he wasn't going to tolerate the long, intense days well but he did amazing.  Then at the end of each day, we went home and the therapists collaborated on new strategies and goals for Wesley to try the following day. Rather than try and describe it all myself, I want to share with you the "report" they sent us home with at the end of the week.

Over the past week, I have been pondering the past. I generally am not a past dweller. I don't have a good appreciation for history and I have a horrible memory. These characteristics tend to keep me in the present and worrying too much about the distant future rather than reliving the past. However, this week I'm there. Remembering. And in that place, the tragedies, heartache, suffering of many friends and family members all come back with new sadness. The faces of parents, spouses, friends, and children grieving at funerals come back vividly. And beyond the pain that I've observed first hand, the reality of individuals suffering on a global level hits home more deeply. Maybe it's as I get older, or maybe it's having become one of "those people" who everyone feels bad for, sympathizes with, and hopes to never have to walk in those shoes, but I can no longer see suffering from a removed place. Those wives whose husbands were in the World Trade Center are...

Or rather the last month has been: seizures, increase med dose, wait a week, repeat. I'm not sure why I set one week as the arbitrary amount of time Wes needed to go without having a seizure for me to feel some relief. It seemed that if we could make it a week, we could count on the medicine working and our lives going back to the way they were before. One week. So after the initial weekend of seizures, we went from 1 ml of his seizure med to 2 mls. We made it 6 days. Then we went to 3 mls and made it 8 days. Then we went to 4 mls and made it 7 days. Then four more seizures today. So now what? Now we head down the road of combining multiple medications hoping the side effects are tolerable. This seems like the unconquerable road. It seems like a place to just plop down and despair. But there is always a bigger picture and there is always some much needed perspective. There are many many children who have more seizures, more severe seizures, and more frequent seizures. Even in the...

Well Wesley's EEG and neurology appointments went well. His EEG looks the same as it always has which this time seems like a good thing. It's still abnormal, but we're going to call this his normal. That means they didn't see any reason to worry about hard to see seizures. So I can relax a little bit. I now feel like we have a plan for moving forward, I know which neurologist we're going to see from here on out, I have a written action plan for myself and anyone else who watches him, and I am less terrified that he will have another big seizure. With his improved eating, he's gained several pounds. After struggling to follow the curve while staying "below the first percentile" for so long, it is a huge blessing that he is now above the 10th percentile for weight! That also means he rapidly outgrew his dose on his seizure med likely causing the seizures last weekend. So I'll definitely be on watch for that in the future. For now, I'm still hear...

I have no creative title or eloquent way to describe this past weekend. Wesley has always been at risk for having seizures. The damage to his brain from birth is so extensive, his brain doesn't have normal electrical activity. We've done 4 EEGs now of varying lengths which have all shown abnormal electrical activity but have not confirmed seizures. So he's been on and off seizure meds his whole life weighing the benefits of protecting against the possibility of seizures and the significant side effects of heavy duty neurological medications. For the last nine months we've had him on a very low dose of Onfi, a relatively new seizure med with fewer side effects than most. As we've had new appointments and started new therapies, when they ask if he has seizures, we all shrug our shoulders and say maybe. He had never had clear obvious seizures, but occasionally his arm would shake or twist weird or he would zone out for a few seconds making us always wary and never qu...

Deciding to have a second child seems to be a difficult decision for everyone. I hear one after another of my friends who have one child question if they really want another. Their reasoning generally seems reasonable, "I have my hands full already," "I feel fulfilled loving just this one child," "Childcare is really expensive," etc. etc. But then I see person after person announcing second pregnancies or sending out family pictures with their 2, 3, 4 children. In reality, I know very few people who are an only child. So what happens to make the decision to expand your family? There are so many emotional struggles in making such a choice. For us, the choice was both exciting and utterly terrifying, but ultimately I knew I didn't want Wes to be an only child. The standard ambivalence felt by most parents is compounded when you have a special needs child. After you already unexpectedly ended up in Holland (see previous post ), you don't really wan...

We have turned a corner when it comes to Wes eating thanks to a stomach bug (and of course months and months of feeding therapy). In early December, Wes, Colby, and myself all got the lovely vomitting all day (tmi, I know) stomach bug that was going around. After a week and a half of recovering and getting Wes back to normal g-tube feedings, we tried feeding him purées again. Something clicked for him in that time off and he decided not only that food tastes good, but that he is ferociously hungry. He's like an entirely different kid when it comes to eating. He was taking 5-10 small tastes of purees off a specialized spoon, at a very slow pace, without any variety in flavors, and with a lot of persistance to get him to open his mouth. Now he is taking 3-6 ounces of whatever flavor puree we offer him each feeding with a normal spoon and at a normal pace. He's opening his mouth to signal he wants another bite, he's leaning towards the spoon, and he gets mad if you don...