Ah, finally — it’s taken a while to be able to write that title!  Those of you that have been following along since the beginning of our journey to Henry are probably very ready for this post.  Enough of the diagnostic roller coaster! 

It’s been over a week since our meeting with the pediatric neurologist to review Henry’s MRIs.  We’ve just been processing and felt like we needed to take some time to talk and figure out where to go now with the information we were given.  Of course, as I have said many, many times before it’s JUST a diagnosis.  It doesn’t change WHO Henry is, or how much we love him, or how we treat him or think of him.  Our pursuit of a conclusive diagnosis was primarily so we could effectively treat the roots of his symptoms (if possible.)

I realized yesterday that it has been almost a year since we first felt drawn to Henry and began researching possible medical scenarios for his symptoms.  A whole year!  Unbelievable.  The last twelve months have been filled with conflicting diagnostic reports –so it’s a blessing to finally have the official word on what is really going on inside our little boy’s body.  In one way I am relieved to finally KNOW; in another way, I am processing the emotions that come with finally knowing. 

The MRIs that Henry had six weeks ago revealed a lot going on inside his brain and spine; and it’s nothing we had researched or considered.  We aren’t completely settled with part of the diagnosis and plan to get a second opinion from a pediatric neurosurgeon in Seattle; we also aren’t sure how everything will affect him in the future, but for now at least we know what we’re looking at. 

 Okay, so here are the facts in a nutshell (there are other things, but these are the primary findings of the MRIs):

We found out that Henry was born with a rare brain disorder.  He has both pachygyria and polymicrogyria which are neuronal migration disorders.  At some point during Henry’s second trimester of development in utero, his mother suffered some kind of trauma.  This trauma caused the brain cells that were migrating out from the stem of his brain to grow abnormally.  The brain is normally full of creases and folds (gyri) but Henry’s brain (primarily the right side) grew without the normal amount of creases. In some places the gyri are smaller and more plentiful than normal (polymicrogyria) and in other places the gyri are larger and more shallow than normal (pachygyria).  This is obviously simplified greatly, but it gives you the basic idea of what this disorder looks like.

The primary effects of Pachygyria and PMG are developmental delays, motor dysfunction, respiratory problems and seizures.  Obviously the symptoms vary from child to child.  Most children with these disorders are affected in a more obvious way than Henry seems to be.  But on the other hand, most children that have had the MRIs to diagnose these conditions have substantial enough symptoms to warrant a thorough evaluation.  There may be many other children who are affected to the extent that Henry is but have never been diagnosed because of the lack of presenting symptoms.  We would not have discovered this brain disorder if we had not pursued the MRIs because of his left arm being non-functioning (which turned out to be from a different cause all together.)  

Pachygyria and polymicrogyria are obviously permanent — but thankfully not degenerative.  However, we really can’t know now how they may affect Henry down the road.  For now, it appears that Henry has no difficulty with learning or language (he’s actually way beyond his age in his language skills) but he may have a problem in a few years when he starts learning math, or he may run into a block when it’s time to ride a bike… any thing at any time could be difficult for him to learn as a result of the abnormality in his brain — and there is just no way for anyone to predict it now. The weakness in Henry’s left leg and his difficulty balancing are a couple of symptoms — but the neurologist was actually really impressed with Henry over all and said that it’s amazing (based on what he saw in the MRI’s) that Henry has such a lack of the common symptoms associated with this condition.

He did want us to be fully prepared for the possibility of seizures in the future. He said that just because Henry has not had any seizures so far isn’t a sign that he will never have any; they are very common with both disorders and he wanted to be sure that we understood that.  He also wanted us to understand that repetitive seizures can bring about more serious complications in the brain.  He didn’t want to alarm us — but we needed to know, and we appreciated his frankness.  I am trying to balance being aware of the possibility of seizures without being too paranoid, you know??  I don’t want to be the mom that duct-tapes pillows on my son every time he goes outside — I mean, he’s a BOY for Pete’s sake… and we live on a FARM… surrounded by forests full of trees to be climbed and forts to be made.  But, on the other hand, I want to live in the reality that my son has a much greater chance at having an unexpected seizure in the middle of an activity than the average child does. I need to protect him from the possibilities.  I don’t want to hold him back from living life as fully as possible — but I am responsible for his safety.

Okay, enough rambling there…

So that was the first part of the diagnosis.  We also found out that Henry has a couple of arachnoid cysts at the base of his brain, and a pineal gland cyst in the center of his brain.  The medical community is split as to the treatment of arachnoid cysts.  Some doctors feel that they are best left alone unless they are causing symptoms; while others feel that they should be removed to avoid any future issues.  The pineal gland cyst is actually already beyond the “safe” size range, so we are going to have another MRI taken in six months to see if has continued to grow — we will cross that treatment bridge then. 

Henry also has a large cyst in his cervical spine that appears to be compressing the spinal cord.  This seems to be the root cause of his non-functioning arm.  At first we were encouraged by this diagnosis because it seemed to us that by removing the cyst and the pressure on his nerves, there would be a good chance that some function could be restored in his arm. However, the neurologist said that the cyst was most likely there while the nerves were developing, so they never got the chance to develop properly — it acted as a road block preventing the nerves from doing their job from the very beginning.  If this is the case, then surgery wouldn’t do anything to restore the nerve function because they grew abnormally.  It is also a risky area of the body to do any kind of surgery because of the complexity of the nerves. 

Like I said before, we are going to be following up with a different neurosurgeon about second part of the diagnosis.  We’ve spoken with someone from Seattle who is suspicious of another condition causing the series of cysts.  It may be that Henry COULD regain some use of his arm through surgery, and we really feel like we need to get a second opinion about it.  We feel settled about the first part of the diagnosis, but there are still enough questions about the cysts to warrant some follow-up research.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Okay, so those are the medical facts.  I’m just continuing to hold Henry and this diagnosis out to the Lord.  I KNOW that God is big enough to heal Henry and I’m certainly praying for healing –especially of his arm.  But on the other hand I am really aware right now of how finite my perspective is.  So often I think in terms of “good” news or “bad” news (as far as a diagnosis) and what I’m not factoring in is that it is ALL God’s news — whether it is “good” or “bad” in my eyes.  He is completely sovereign and knows the beginning from the end — and the things that seem to be the most difficult in my perspective are sometimes the things that he uses to bring about the greatest changes and the greatest good.  He truly works in mysterious ways.  I wouldn’t choose something like this for my child if I were given the option, but I want to raise Henry with the perspective that he is whole RIGHT NOW.  He is not flawed or imperfect.  He has some physical handicaps that may make things harder for him, but his story — the story of his life from conception to death — is known and has been orchestrated by a loving heavenly father… every single piece of it.  It’s hard for me as a mom to think about the things my son may face, just as it’s hard for me right now to watch him struggle so much with things that come easily for children with two working arms… BUT, I see such sparkle in his eyes and such tenacity in his heart and I pray above all that he will keep that sparkle and that he will stay soft and not get bitter about his handicaps.  I pray that he will always try his hardest and throw his heart into life, accepting the things he can’t do with grace while vigorously pursing the things that he CAN do.  I pray that he will be a glass-half-full type of person. 

It’s actually been harder for me to process this diagnosis than I was prepared for.. and I finally realized it’s because I am his MOM now.  I was fully and completely prepared for this sort of diagnosis a whole year ago, and I stayed “prepared” through all of the initial meetings with doctors and the referrals from one medical specialist to another. But somewhere in the midst of all those appointments and tests, this little boy became my SON in every sense of the word.  When I sat in that room with the neurologist reviewing the MRIs last week, we were talking about MY son.  Aahhhh.  The transformation that happens to our hearts when we become mothers is remarkable.  I have been going through all of the emotions of processing this diagnosis as if I were hearing for the first time that my son has a neurological disorder; I’m hearing it and processing it as a mommy, not as a prospective adopting parent.  It’s so personal now.  I’m glad I finally realized my need to process it as such because then I felt released to grieve for what I needed to — just as I would have if Joanna had been diagnosed with a rare brain disorder at twenty months.   

Before I close this very long post, I just have so say again what an AWESOME kid Henry is!!  I can’t say enough about how grateful I am to have been blessed with the amazing privilege of just knowing him… much less the indescribable joy of raising him!!  I realize more every day how amazing God was to lead us down the twisty road to a little country on the west coast of Africa and to this little peanut of a kid with an unknown medical condition at the time.  He brings such life to our family!! 

Thank you, God, for my beautiful son.

Advertisements