A Different Boat

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 ...