A Different Boat

During a time of year filled with difficult memories, today, I choose to see the blessings. A successful surgery with resolved post-op pain. Wonderfully kind people who got Wes an adaptive tricycle for his birthday. Smiles during hippotherapy (even if they aren't captured in a picture). Controlled, forward, sitting for minutes at a time! Siblings playing together. Learning to communicate with us and show us he's learning. Smiles and Laughter

When I was pregnant with Wesley, we did a child birth class at the hospital he was born at.  One of the tasks given to us was completing a puzzle of our wishes for our birth based on various criteria.  Then we had to gradually eleminate pieces, prioritizing our wishes, until just one was left emphasizing that no matter what, this was the most important thing for everyone in the process. A Healthy Baby. I'm not sure how we got to this place as a society of holding health in such high esteem. Health is something we have such little control over. We will all ultimately have failing health that will lead to our death whether that is from acute trauma or long term illness. There is some illusion that if we achieve this level of health we will somehow escaped our inevitable death or at the very least avoid as much pain and suffering before that final moment as possible. We all know on an intillectual level that we are very mortal.  We hear stories of car accidents, canc...

On July 31th Wesley had surgery on his hips.  His left hip, primarily, was slowly dislocating (called a sublexed hip).  Because his muscles pull out of balance with each other on his joints and he doesn't stand or walk as much as typical kid his age would, his femurs were nearly straight on top rather than bent like yours or mine.  This not only makes standing, walking, etc. more difficult, it also can be extremely painful as they don't stay in their socket.  So rather than waiting for it to cause him additional pain and do more damage to his pelvis, we agreed to go ahead with his first major orthopedic surgery.  To correct his sublexed hips, they essentially broke his femurs and screwed them back together at the correct angle so they will stay in socket better.  Thanks to some advocating by his physical therapist, we were able to try Wes in a splint instead of needing a full spica cast (waist to ankle cast with a bar between his knees).  He h...

We just finished an exhausting and awesome week of Adam's Camp.  I can't say thank you enough to all of you who helped us get him to camp!!! Wes definitely had a lot more endurance to get through each day of therapy this year.  The biggest things I'm noticing post camp are: he can sit in the "high side" of a cube chair with little to no added support now, he is using his switch to communicate much more consistently and for higher level communication (ie identifying animals, colors, body parts, etc.), and he seems much more aware of what is happening in the world around him and is responding in appropriate ways.  But don't just take my word for it, here is their report filled with lots of adorable pictures!

In highschool I found a song from Lifehouse called Storm that really spoke to me.  Anytime I had a bad day, I'd listen to this song and pour my heart out to God. .  "How long have I been in this storm? So overwhelmed by the ocean's shapeless form Water's getting harder to tread With these waves crashing over my head If I could just see you Everything would be all right If I'd see you This darkness would turn to light And I will walk on water And you will catch me if I fall And I will get lost into your eyes I know everything will be alright I know everything is alright I know you didn't bring me out here to drown So why am I ten feet under and upside down Barely surviving has become my purpose Because I'm so used to living underneath the surface If I could just see you Everything would be all right If I'd see you This darkness would turn to light And I will walk on water And you will catch me if I fall And I will get lost into y...

Caring for a medically complex child often feels like a game of whack-a-mole. The first two years of Wesley's life were mostly filled with hitting the feeding "mole." We battled with nursing, growth, vomiting, oral sensory issues, etc. as our main focus for two full years. Yes we followed up with many other specialists and had many other issues we dealt with over those years, but the prevailing issue was feeding. Then just as he started growing and stopped vomiting, just as we felt like the feeding mole was finally pushed down, up popped the seizure mole. Our focus shifted to managing seizures instead. We spent the last year pounding on the mole fighting to find the right medication doses, identify triggers, understand emergency procedures, etc. And while we hit that seizure mole, the feeding mole started sneaking back up slowly as Wes stopped tolerating his nighttime feedings and stopped gaining weight. Just as we started getting seizures controlled enough to be able to...

As we strive to help Wesley grow, I still find his feedings to be a huge source of stress.  It seems to be a constant dance of steps forwards and backwards as he improves for short periods but then regresses.  He has gained little to no weight over the past year.  We've made intermittent progress in terms of tolerating textures and even some chewing of soft foods but as his willingness to eat has increased, his weight gain has stalled. Our best theory is eating is so much work for him, he burns a lot of calories in the process.  So, we've switched his overnight feeds to higher caloric density and have tried to push as much as we can during the day without forcing him so much he is uncomfortable and stops eating again.  But despite our best efforts, he's still hovering right at 28 lbs.  So, our newest plan (now that medicaid will finally cover it) is to try a premade, nutritionally complete blend of foods in place of his formula.  After 4 nights on Liq...

Just like any other field, the special needs world has fads/trends that get everyone excited.  About a year ago, the big talk filling my facebook newsfeed was the Upsee .  Essentially, it is a harness used to attach a child who is unable to walk to an adult and provides the child the feeling of walking while the adult walks.  Sounds like a great idea!  Well it is a great idea but one with a $500 price tag (as most all special needs equipment is exorbitantly overpriced).  So although it seemed like something Wes might like, he has fooled us before and hated things we've thought would be big hits.  So, we spent the last year debating whether the chance that he might love it and it might be great for him was worth the $500.  That was until he got on this amazing Medicaid waiver program that covers many of the "extras" not covered by insurance (ie. music therapy, horseback riding therapy, home modifications, etc.).  We discovered that this waiver will...

We received Wesley's MRI and PET scan results last week.  Although we really like his epileptologist, he speaks with a very heavy accent.  After speaking with him, and still feeling confused as to our plan and the results, I was able to get his neurologist we've been seeing since he was 2 months old to decipher for me.  We really love her and are just amazed at how much she cares for Wesley and our whole family.   So here are a few snapshots from his scans (hint, the black areas are fluid where there should be brain matter).  It's disheartening to say the least although it's really nothing we didn't know already.  The PET scan did give us some new information.  The MRI looks at the anatomy of the brain while the PET scan gives some information about the functioning of the brain.  Anatomically, the left side of his brain shows more damage.  Unfortunately, functionally the right side is showing more abnormalities.  My take away... it...

Since becoming a Christian, rainbows gained new meaning for me.  Instead of simply a beautiful part of nature or a marvel of science, they are also a reminder of God's promises to us.  They are a reassurance that our God is not only all-powerful and just, but also kind and full of love.  They are a reminder that amidst the rain, the sun still shines. Since becoming Wesley's mom, tulips now have a similar meaning for me.  Instead of simply being a beautiful flower, they are a reminder that "Holland has tulips."   The now quite famous description of raising a child titled with special needs titled Welcome to Holland describes the situation as if you were planning a trip to Italy and ended up in Holland.  In that situation, you can choose to stay bitter about the unexpected detour and withdraw feeling miserable that you're not where you wanted to be, or you can recognize the beauty in your unexpected situation and realize that although it's not It...

Well I am utterly amazed and humbled by the generosity our friends, family, and total strangers have exhibited towards us and Wesley.  When we first started this push to be able to send Wesley to Adam's Camp, I was doubtful we would be able to raise all of the money but hopeful that we could get close enough to find a way to make it work.  $1200 is no small amount.  Well we have blown away our goal.  At this point, we have raised $1760 for camp plus $3000 for any other needs Wesley has.  This is enough to send him to Adam's Camp, buy a new car seat he can stay rear facing in longer, pay his tuition at Anchor Center for Blind Children next year, buy an epilepsy monitor, and more.  We can't thank you enough for your extreme kindness and generosity.  Every penny leaves us feeling supported and loved on this journey.  Thank you!! Wesley's first school picture (I didn't know it was picture day or I would have dressed him nicer!)

I'm just in utter awe of the generosity of our friends and family (and people we don't even personally know). Over the last month, we have collected $930 towards the $1200 we need to send Wes to camp. I can't believe it's all come together so fast. We are truly truly blessed. I have no doubt we will be able to come up with the last few hundred dollars to pay for camp. Beyond the financial support, which is amazing in and of itself, we feel like so many people are rallying behind Wesley and care immensely about him. It's a great feeling to have so many people love your child. Amidst all this fundraising time, we've had a couple developments in his health. We've seen an increase in seizures again since around October. Because of this, he was refered to the intractable epilepsy clinic to see an epileptologist (neurologist who focuses on epilepsy) instead of our regular neurologist (who is amazing by the way). The epileptologist had us stay at the hospital...

As always, there are many updates I need to and would like to share whenever I have the time and energy but for now know that Wesley is doing well and is growing up fast.  I can't believe how tall he's getting and how much he's paying attention to and finding his own ways to interact with the world around him.   Last year due to the generosity of some amazing people, we were able to send Wesley to a week of intensive therapy at a place called Adam's Camp. They were able to work with him and make some amazing progress on some significant developmental skills (you can read more about his time last year here ) . We are looking forward to sending him back to Adams Camp again this summer to work on some new goals as he's made some wonderful strides this past year. Because of the intensive nature of Adam's Camp and the amount of one-on-one therapy he receives, it is very expensive and unfortunately not covered by insurance. We're looking at $1200 for a week lo...