Henry had his first appointment at Shriners yesterday.  I have mixed feelings about what we found out — although we weren’t given a definitive answer (not that we were expecting one.)  Actually, we had even more questions raised!  We heard many professional opinions and thankfully were pointed in the right direction to continue discovering what is causing his handicap.  We were given a lot of information.  I am obviously going to be paraphrasing in my own words in this post.  My apologies to anyone in the medical profession that might be reading this — I’m sure I don’t have all the terms right!  I’m just sharing from my understanding of what we were told yesterday.

It was a long afternoon.  We ended up being there over three hours.  We saw quite a few different doctors and specialists and they all agreed that it appears there is something besides Cerebral Palsy affecting his arm.  The x-rays came back clean — no dislocation or fractures, but the Ortho Specialist said that we need to see a Pediatric Neurologist to follow up on their concerns that Henry did indeed sustain a Brachial Plexus Injury at birth.  Those of you that have been following our story from the beginning know that we initially thought Henry’s affected left arm was the result of a BPI.  But then, after his doctor’s appointment in Liberia, we were told that the left arm weakness was simply a result of CP.  Peter and I have both suspected that there was something else going on with his arm since we brought him home.  It is really bad.  He has absolutely no use of it.  It hangs from his shoulder like a dead weight and appears to be completely unresponsive.  If indeed he has Cerebral Palsy, it is a very mild case and the extremity of his arm isn’t consistent with the mildness of the CP.

(*Here’s a quick explanation of what a Brachial Plexus Injury is for those that are wondering.  I took the definition from this page of the UBPN website) “The term Brachial Plexus Injury (BPI) refers to an injury to the complex set of nerves that control the muscles of the fingers, hand, arm, and shoulder.   Injuries to the Brachial Plexus can result in full to partial paralysis of one or both arms with a temporary or, when the nerve cannot completely heal, a life time injury. While compromising muscle function and the ability to grasp, extend, and reach with the affected limb, the injury can also affect physical appearance.”

The Orthopedic Specialist told us he has doubts about whether Henry even has CP based on the lack of presenting symptoms.  He said he would almost guarantee that Henry’s arm is the result of a Brachial Plexus Injury (his opinion based on what he sees visually) but that Henry doesn’t appear to have strong symptoms of Hemiplegia (which is the type of CP it would be.)  He was particularly surprised by how intelligent Henry is for his age and said that it is unusual for there to be such an obvious lack of cognitive/developmental delays in a child his age with Hemiplegia.  The other doctors we saw also had questions about whether he is affected by Cerebral Palsy, although one of them did a thorough exaimination and noted increased tone in his left leg and foot (consistent with Left Hemiplegia.)  I understand that a diagnosis is simply an diagnosis.  It doesn’t really mean anything other than letters on paper.  His symptoms aren’t going to change just because we finally narrow it down.  The main reason we want to pursue discovering the root cause is so that we can treat it as effectively as possible with therapy and/or surgery.

Unfortunately (and this is where the mixed feelings come in)… a Brachial Plexus Injury is not actually best case scenario.  Far from it.  If it is a BPI, the nerve damage is most likely severe and permanent.  This means that he will never be able to regain use of his arm/hand.  Therapy will help him learn to use the arm passively (i.e. propping things with it… holding paper down when he writes, etc) but he will never be able to regain any active use because the nerves that control the muscles are irreparably damaged.  Had we been able to bring him home sooner, we may have been able to get him into surgery to try and repair the nerve damage, but he is right at the end of the 12-18 month window of time that surgery is a viable option.  I suppose there is a slight chance that the Neurologist will want to see him right away and will decide that he is still barely within the time-frame of potential success.  Perhaps?

We did have  a very good meeting with the Occupational Therapist at Shriners.  She was so helpful and very concerned about getting his hand straightened out so it will grow as naturally as possible.  I am going to be taking him back to her tomorrow morning so she can create a splint for his hand and so she can show me some more stretching exercises.   She did say after observing him for a while that she would be surprised if he ends up being diagnosed with CP.  She said it seems to her (and she has seen a lot of kids with both conditions) that Henry’s case is classic BPI and that some of his other delays could be caused by how small he is and the birth trauma.  

Golly, there were a lot of different opinions yesterday — I should create an on-line poll to get yours! 

So where do we go from now?  We are going to start PT and OT and wait for his appointment with the Pediatric Neurologist to determine how extensive the nerve damage is in his shoulder/arm and to get a final word on whether he has a brain injury causing CP.  Peter and I suspect that it is both.  We’re pretty sure he does have mild Cerebral Palsy… but we could be wrong.  After all, we are definitely not doctors.  (Even though Peter has a DK complex.  Do you know what a DK is?  I’m sure if any of you are married to a DK you know what I mean!  🙂 )  

It kind of feels like we have come full circle back to square one.  This is exactly where we were last May.  But you know, I am okay with whatever the official diagnosis ends up being, even though I will be sad for his sake if the nerve damage is permanent.  In the end, it doesn’t change anything.  He is still our Henry — no matter which of the abbreviations ends up being written on his medical forms.  He is our son… just like I realized last spring right before we accepted his referral.  And we will do all we can to help him reach his highest potential and overcome his obstacles.

I have to add (before I end this long-winded post!) just how impressed I was with Shriners.  They exist solely to help children who desperately need it.  And they do it with such warmth and care.. and efficiency!!  They are a well-oiled machine!  We were whisked from one department to the next by incredibly friendly and helpful staff.   There was hardly any down time and everyone seemed to know right away who we were and why we were there.   All of the doctors and nurses and radiology staff and receptionists were exceptionally kind.  I told Peter when we walked through the door that I felt like we were entering a Special Place… a Never-Never Land…  There were many, many hurting children throughout the hospital, but there were also ministering angels and kind doctors and wonderful volunteers giving of their time to bring smiles and encouragement to little ones who have struggles that most people won’t ever have to face.  They are truly ministering love and hope to the “least of these” in a special way. 

I’ll certainly keep you up-dated when we hear back from the Neurologist!

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