A Different Boat

We went back to the craniofacial clinic to follow up on Wesley's head shape and fused sutures. They still think he doesn't need surgery and don't think we need to follow up with them again unless something changes dramatically. I'm more at peace with this now but I still worry that we're counting on his brain damage not getting miraculously better for him to not need surgery. But I'm trusting that there will be other signs that tell us if things are getting worse and although it is ideal to do surgery before 1 year, there'd are plenty of kids that have had it done much later and have done fine. So we aren't going to subject Wes to major surgery unless things change dramatically and we are positive that surgery is necessary. They did, however, recommend that we put Wes in a cranial band helmet to improve the shape of the back of his head. We're not sure if it will improve the ridge on his forehead or not, but it should help round out the back of his ...

Two nights ago I watched The Night Of Too Many Stars, a fundraiser put on by Comedy Central to raise money for autism education. The most touching moment of the entire show was an autistic girl playing the piano and singing with Katy Perry. The whole time I was watching this little girl, I was struck by how her autism was a strength in this situation. Most other kids her age (or even myself for that matter) would never have the courage to sit on stage with a major super star and perform her song. Being autistic allowed this girl to avoid the traps of social pressure and the fears of social perception. Without second guessing her talent, she got on stage and let the world see her passion for music. As a society we are so concerned with teaching kids to avoid peer pressure, while heavily relying on peer pressure for advertising (but that's a whole different issue). Yet autistic kids who have such a difficult time reading social cues and following our fabricated rules for conduct...

One of the absolute best pieces of advice I've gotten came from a friend whose son is also "disabled." She told me to look no more than 6 months into Wesley's future. The natural inclination is to try and predict what he'll be like as a preschooler, kindergarten, teenager, or adult. The problem is, it's one big guessing game. There is no way to accurately predict what Wes will and won't be able to do in his lifetime. There are simply too many variables and too many unknowns. Who knows what other miracles God may work, what medical advancements may come along, or what tremendous improvement will come through Wesley's hard work and stubbornness. Yet every time I see a "disabled" teenager I try to predict if Wes will be better or worse off than him. Such exercises bring my anxiety level to extremes and let in that sneaky devil, fear. I would love to say I just live in the moment and don't worry about what the future holds but that is simpl...

It's starting to feel like Wes has all odds stacked against him when it comes to learning to communicate. Putting aside his unknown level of cognitive impairment, it seems like a miracle is necessary for Wes to ever be able to communicate at more than a 6 month old level. Right now it feels like an acomplishment when we are able to comunicate in simple ways like smile = good or cry = bad. I'm trying to be grateful for what we have because I recognize that other families would love that much communication. However, this primitive level of understanding each other will not feel like enough 6 months from now, a year from now, etc. I'm hopeful that Wesley will learn to talk and read and write but it seems like he has a tremendous number of obstacles in his way. It's just not "fair" that he will have to work so hard. Wes has a hearing impairment so he should learn sign language, but he also has both a vision impairment, making it harder to teach him signs, and d...

I believe that although people may have a natural tendency towards optimism or pessimism (or realism as most pessimists like to call it), you still make conscious choices towards one or the other. When things start to look grim, the optimist tries to find the bright side where as the pessimist imagines the most horrible outcome possible. Optimists cling to hope while pessimists cling to fear. It's all a mind game. After having a totally normal pregnancy turn traumatic at the last minute, I've lost my ability to be an optimist. Once your fears have become reality, the part inside you that convinces you that "the odds of that happening are ridiculously low" or "that won't happen to us" vanishes because you've already been that one in a million. Since the unlikely has already happened once, you no longer believe that it won't happen again with another child or with another situation with this child. Every car ride, doctors appointment, bad day,...

Well Wesley is now 8 months old and still has no teeth. I've been thinking he's teething for months now but none have poked through yet. Every time he drools a lot, is cranky, or is really pacifier dependent, I find myself telling people, "He's starting to teeth." Then months go by and no teeth appear. I even bought him a teething necklace (controversial as it may be) that is supposed to release a natural anti-inflammatory to ease teething pain. I know it's no big deal and all kids teeth at different times. I have a friend whose baby got a tooth a 3 months and another whose baby didn't get her first tooth until 11 months. The average time for the first tooth to appear is supposed to be 4-7 months.  As much as I know it doesn't matter, Wesley's lack of teeth is just nagging at me.  Getting teeth is not dependent on mental or physical capacity, it's purely biological.  I know it's highly unlikely for Wes to crawl, walk, or talk within the ...

In stark contrast with Disney World, I have decided the saddest place  on Earth is Children's Hospital. This may be a bit of an exaggeration when we take into perspective places in third world countries with starving children so perhaps I should revise my statement to be Children's Hospital is the saddest place in America. The hallways, waiting rooms, cafeteria, and parking lots are all filled with parents who look worried, exhausted, and beaten up and children whose lives will be a battle.   When we first started coming I felt incredibly overwhelmed looking around at the other families. I had a feeling of shock that I had ended up here with those people everyone looks at with pity. The longer we've been coming here, I feel less in shock and more a part of a sad comradery. Without speaking a single word to each other, we all share a bond of common experience.  I hope one day to be the person who wouldn't have changed a thing about the life they've been given and ...

Someone recommended in a comment that I should read "Welcome to Holland" and it so perfectly describes what my life has become. WELCOME TO HOLLAND     by  Emily Perl Kingsley.  c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you s...

While Colby is waiting to restart the final phase of his training, he gets nightly phone privileges. It's great to get to talk to him again, although I think it will make the next 3 weeks a lot harder. I will blame my lack of blog posts on the fact that I am able to share about my day with Colby each night so I have less time and need to write blog entries. I fear that when he's back for good I may stop blogging all together. I really don't want that to happen so I will try to continue blogging for the same reasons I started blogging in the first place. So here's the latest with us. After calling the neurosurgeon's office 3 times in one day, I finally got Wesley's CT scan report. It shows partial bicornonal craniosynostosis. Because he has a decreased brain volume and the sutures are only partially fused, the surgeons don't want to do anything right now. The plan is to see him again in October and probably do another CT scan at that point to see if there ...

Well once again todays appointment wasn't nearly as bad as I feared it to be. Unfortunately, it was entirely uninformative. The surgeons looked at him and asked more questions (which were already answered in his medical record). They commented that he doesn't "look" like a kid with craniosynostosis because his head is not buldging as it grows around fused sutures. I asked if that could be because his brain isn't growing rather than his sutures aren't acutually fused and they agreed that I might be right. The neurosurgeon said when he looked at the x-rays before the appointment he didn't see any fused sutures but then they read the radiologists report which said he has bicoronal suture fusion. So... they ordered a CT scan to see in more detail what is going on since they don't agree on what the x-ray shows or doesn't show. I was so anxious for this appointment today. I was truly fighting off anxiety attacks the last two days because I was so a...

I'm getting way ahead of myself in researching, but I find it I incredibly hard to just sit here uninformed, waiting. Wesley's appointment with the cranio facial clinic (a neurosurgeon and plastic surgeon) is on Wednesday, which feels so far away. So in the meantime, I joined a facebook support group for craniosynostosis and have been googling like crazy. I say I'm getting ahead of myself because I really don't know any specifics about Wesley's case, just that the neurologist saw some premature fusing (which she was increadibly vague about), we should be seen in the cranio facial clinic, and he may need surgery. In my infinite wisdom and advanced medical knowledge (yeah right) I've contorted all of this to meaning he will need surgery and a helmet and we better do it ASAP before anything really bad happens.  I just google-imaged "cranial vault remodeling surgery" (which is what Wes will likely have to have). I really wanted to know what exactly ...

Craniosynostosis : " a birth defect in which one or more of the joints between the bones of your infant's skull close prematurely, before your infant's brain is fully formed." I have been worried about this since Wes was about 3 months old and his head started becoming misshapen.  For that matter, when he first started developing a ridge across his forehead, we went and saw his pediatrician just to have it checked out.  At that time, they could still feel his fontanel so they weren't concerned about premature fusion.  Since then, I've been asking about it at every appointment with his pediatrician and with his neurologist.  I normally just accept what the doctors say (since they are experts after all) and move on but for whatever reason I just couldn't let this one go.  Then for a while Wesley's head started looking better.  The ridge was getting less obvious but his head was getting more oblong.  Since most of the brain damage was in the ...

That one song line has been playing in my head all afternoon and it seems so appropriate for how the past week has gone. On Tuesday we had another appointment with Wesley's neurologist and rehab doctor (in the stroke clinic). They confirmed that Wes has CP and talked a little bit more about his MRI.   After examining him, the doctors noted that his legs have gotten a lot stiffer since they saw him two months ago.  The rehab doctor discussed possible medications we could give Wes to help loosen up his legs but unfortunately those medications are general muscle relaxers so they would decrease his entire body's muscle tone.  Right now Wes is hypotonic (low tone) in his torso and neck and hypertonic (high tone) in his legs and hands so a muscle relaxer would make it easier for him to stretch his legs out but harder for him to hold his head up.  After the appointment I did some research on my own and I think I'll ask about starting Botox treatments.  Just like whe...

I assume that when someone loses a child, at that point they realize that they will be grieving. Even after having a miscarriage, I knew I had to grieve the loss of the child we would never have.  However, when your child survives but has lifelong disabilities, you don't even realize that you need to and will grieve. Denial Anger Bargaining Depression Acceptance Denial:  I have a hard time discerning between denial and hope.  Throughout everything there have been times when I felt like Wesley was going to be just fine.  Looking back, I was somewhat naive while we were in the hospital in that it took a long time for me to realize the doctors weren't sure Wes was going to survive the first few days.  I also didn't really accept the extent of his brain damage (and sometimes still don't).  When they said he might have a hearing loss and needed to be tested again, I didn't believe them.  I honestly believed at one point that Wes would nee...

On Thursday Wes had his appointment with the geneticists. They clarified that he has a small deletion in his 9th chromosome. The location of the deletion causes a disorder called NKH but it is auto recessive so Wes would have to have 2 bad copies of the genes to be symptomatic (rather than just a carrier).  They know he has one bad copy but have to do more testing to see if he has a second bad copy.  They are pretty confident that he is just a carrier because the symptoms don't really match his history.  Although from what I've read the symptoms sometimes don't start until late infancy or early childhood. But u nless we hear otherwise, I have to believe that they are right because NKH is a bad diagnosis with little to no treatments available.     They also discussed during Wesley's appointment that Colby or I could have a chromosomal mismatc h  which could have caused Wesley's genetic abnormality and his difficulties at birth along with my previous ...

So here is the current list of specialists for Wesley: Special Care Pediatrician Dietitian Gastroenterologist General Surgeon Neurologist Hematologist ENT Audiologist Geneticist Physical Therapist Speech Therapist And now I have my very own specialists too: Endocrinologist Hematologist And if we decide to have another baby, a perinatalogist  So here's the latest on the medical front. Out of all the tests my doctor did, 3 things were abnormal.  First, I have hyperthyroidism which indicates that I probably inherited Graves disease . Not a huge deal but it means I will probably have to take thyroid medication for the rest of my life and regularly see an endocrinologist. Also it makes future pregnancies more risky and require extra monitoring.  Second, my d-dimmer value was slightly elevated so that combined with a potential clotting disorder and high heart rate I had to go get checked to make sure I didn't have a blood clot in my legs or lungs. Th...

Last week I had a glimpse into what my life would be like if I went back to work. Monday through Thurday mornings I ran a dive camp for the Evergreen Rec Center. So each morning I got up with Wesley, gave him his medications and played with him for a few minutes before I left him with Colby's mom and grandma (who came out for the week to watch Wes for me). Then I went and taught 8-12 year olds how to dive (which quickly reminded me why I chose to be a high school teacher instead of elementary). So for a net profit of $80, I spent 4 mornings away from my son. I'm sure it was good for me to let go a little bit and do something not as a mother, but ultimately it doesn't seem like it was worth it. Wesley was very well taken care of any they even very graciously cleaned my house while I was gone, but every morning I just wanted to stay home with my baby boy. I am blessed to be able to stay home most of the time currently and next school year. I don't know what will happen ...

Well after his neurologist reviewed his new MRI, Wesley now has a diagnosis of Cerebral Palsy.  The good news is they didn't see anything they weren't expecting on the MRI but it did show that the damaged parts of his brain have died and fluid has taken their place.  After the neurologist explained everything to me, I asked if she thought CP would be in Wesley's future.  She responded that they don't normally diagnose CP until a child is 2-5 years old, but she would feel comfortable going ahead and giving Wesley that diagnosis so he can get "as many services as possible."  Apparently the way our system works, many services are not available until there is a name for whatever is wrong with a child. So CP is our diagnosis (I know technically it's only Wesley's diagnosis but I feel like it affects our whole family so we can all claim it). I think I had prepared myself for the inevitability of this so it doesn't hit as hard as I thought it might.  W...

I started reading the Bible to Wesley a few months ago. We got to the story of Abraham taking Issac up on the mountain to sacrifice him .  Whenever I had read that story in the past, I always thought that what Abraham did would have been really hard but that I could do it if God asked me to.  Well, sitting there holding my baby boy whom I had aleady almost lost, I felt so protective of him and realized that my faith is not nearly as strong as Abraham's. To be truly honest with myself, if God asked me today to sacrifice Wesley, I think I would completely ignore Him. It's one thing if God asks you to sacrifice of yourself for Him but it's a totally different game if you're asked to sacrifice of your child. At first I found myself feeling angry that God would ask Abraham to do such a thing. It frankly seems like a cruel thing to ask of any parent.  Or even the story of Job seems cruel for God to allow him to suffer like that. But there is more to every story than jus...

Quick medical update: Wesley's neurologist was out today so her nurse left her a message to call me with MRI results on Monday,  so more waiting. In March the hearing clinic drew labs on Wesley for some genetic tests.  I talked to the genticist this week and she said she still doesn't have any results but will contact me as soon as she does (which she thought should be soon).  They also drew labs for some more genetic tests for Wesley yesterday with his MRI but it will probably be a few months before we hear back about those. I had a doctor's appointment today to draw blood looking for clotting disorders that could have led to my previous miscarriage and all the problems with Wesley.   Honestly, I hope the tests reveal some answers rather than more dead ends.  I feel like I shouldn't hope that I have some disorder but I would rather have something I can manage rather than facing future pregnancies terrified that it could happen again.  When they checke...

We woke up bright and early this morning to get to the hospital by 7:30 for Wesley's MRI appointment.  Because he's so little, they had to sedate him with general anesthesia to be able to get good MRI pictures.  They took him back at 8:30 and were done around 9:30.  They didn't let me go back with him so mom and I had to sit in the waiting room.  They said he did well and he woke up from the anesthesia quickly.  When we met him in the recovery room he was so sad (but cute).  He was crying but didn't even want to open his eyes.  It was as if he was trying to tell us that he felt funny and didn't like it.  Waking up from anesthesia is a weird enough feeling when you know what happened but I can't imagine how confusing and strange it must feel to a little baby.  We were able to leave shortly after that and were home by 11.  They put a sticker on his back that he had to wear on the ride home saying that he received anesthesia today so if we...

Ok, maybe the blog title is over dramatic especially considering some of the very scary days we had while Wesley was still in the hospital, but this was up there. This morning was the last regular day of Anchor Center therapy before they start their summer program (which is less often and less formal) in two weeks.  They had a year end video and popsicles for all the kids to try.  I was really looking forward to this and was excited to see what Wesley would think about a popsicle.  Well the last couple weeks he has been increasingly cranky and hasn't been able to do as much in therapy as he used to because he gets upset and inconsolably cries.  Today was probably the worst he has done yet.  In the 1 1/2 hours we were there, he laid next to a lightbox for about 5 minutes and swung outside for not even 5 minutes.  The rest of the time was spent crying and fussing (didn't even get a chance to try the popsicle).  It's so incredibly frustrating when we d...