Tuesday, January 10, 2012

Results are in (MRI & EEG)

Today we went to neuro.  Logan was up first.  I am pleased to say if he had epilepsy in Bulgaria, he no longer does.  He does not show signs of it now so we will begin the process to ween him off these meds.  It is a slow process and must be tapered.  Have the schedule for it and will begin tomorrow. This is thrilling news to say the least.  Ironically, he does not want to be off the meds.  Surprised me but I think it is more out of habit and who knows what they told him may happen if he doesn't take them.  We are to watch out for any signs of seizures and of subtle seizures as the doc called them.  Logan will go back in a few months and then hopefully after that be fully released from neuro...wahoo!!!

Now, Summer's report was not as glowing.  Some of you I'm sure are unaware but one of Summer's dx's in Bulgaria was agenesis of the corpus callosum.  A rare birth defect where the corpus callosum is missing.  This is the part that connects the two hemispheres of the brain so that they can "talk" to each other.  Well, it is indeed missing.  Completely.  This explains SO, SO much.  So much.  Her little brain takes awhile to process info.  Quite awhile.  I know most parents would be in utter shock w/ a dx such as missing part of your brain.  We however, are used to things like this and took it as just something on paper.  It does indeed though explain the potty training issue fully.  He said the frontal lobe can't communicate.  Ironically, a lot of what is a part of this disorder is the SAME as FAS issues.  Neuro said she'll have quite a few processing issues.  We know that already.  Speech issues too possibly.  Know that too as she is still doing quite a bit of baby speak.  My others adopted at this age & this time had quite a lot of English by this time.  Summer can not figure out how to open doors.  Whether she's left or right handed.  Neuro said that is b/c the hemispheres are not talking to each other. Summer will be delayed in many areas.  The extent of her mental challenges will take a few years to figure out.  Just how far she'll go.  However, our goal is the same w/ every child we bring home...to reach their fullest potential possible no matter the dx. 

Summer will have an OT and PT eval later this month.  They had an opening tomorrow but I'll be honest, I'm beat.  And, I can't go w/ the rest of them as it will be a few hours long.  this will tell us where her gross and fine motor skills are.  Speech obviously is out till she gets more English.  Double edged sword there as she will not be able to learn & process this as quickly. I'm guessing next year before an eval is possible but we are "hooked" up w/ speech so not a problem. 

I was very shocked at the dx to be honest.  Well, shocked and not shocked.  Not shocked as I saw some probable issues that may be related to this dx.  Shocked b/c I've had so many medicals before that are all wrong on my kids.  Makes me wonder what in the world happened at her birth for them to order an MRI the very next day.  That's not typical for any kid, any country.  This is a rare disorder that is a birth defect.  It can be associated w/ other syndromes.  Neuro said this will not explain her bruises not healing  & easy to bruise.  Her bloodwork (standard bloodwork) came back normal as did the thyroid.  Neuro said it may be worth looking further into issues w/ that.  Gave us no direction on where to start w/ that though.  So, I'll ask the ped.  I know for a fact she probably has parasites and need to do the testing.  I'll get that this week.  All my kids get tested.  All have tested positive for H-pylori.  New kids haven't been tested yet.  My other kids were treated for it.  I never got them retested but they do not seem to have any issues w/ it any more.  Doc thinks they're fine too.  Now, just need to do the new 3 kiddos.  Those who've done this before know it is NOT a fun process.  We'll also probably check Summer for Celiac's as well.  Some signs there too.  Someone on here suggested that and makes sense. 

Each new child typically brings about new dx's.  We learn as we go.  After ten kids, not too much is an OMG kind of moment.  It's more like, fine this is what it is let's go from here.  Majority of my kids have multiple dx's.  I have a feeling Summer will add to her list in the future.  That is perfectly fine w/ us.  Summer is still our baby girl.  Still lights up a room w/ that smile.  And frankly, she is no different a child than she was yesterday.  Nothing's changed her.  Yes, a dx came in.  It doesn't change who she is.  Though it does indeed explain why many things w/ her are the way they are.  Why she'll just cry out of nowhere.  Her brain is frustrated and she can't express it.  All I know is my daughter learned to say chocolate and KNOWS what it means.  And that my friends is just fine w/ me.  That's my girl.  Summer will do just fine here.  She adds such a spark of joy.  She is our little spitfire.  She has taught us a lot already.  Following right in Nik's footsteps.  He has taught us all so much over the years.  It will be no different for Summer.  I'll keep you posted on things.  But, I won't blame things on her dx.  Just as I haven't for my other kids.  It is not an excuse for their behaviors.  Yes, it explains them for sure.  But, just as my FASers know, this makes Summer no different than anyone in this house.  She will learn albeit her own pace.  She will learn.  That is fact.  She will reach her fullest potential and given every opportunity every other child is given in life here.  We love our baby girl to pieces.  Potty training will have to wait and that is okay.  Before, it seemed more urgent.  Now, not so much.  It is what it is.  She will learn in due time.  She has her entire life ahead of her.  And just as her name suggests, it is very bright.

2 comments:

  1. Last year I had a foster child who had only a partial corpus callosum and he was a joy and delight! Was quite delayed, but had multiple other diagnoses, including Fanconi's Anemia. He couldn't walk or talk yet at 2 when he passed away of leukemia, but he was the happiest child I have ever had and had no problem letting anyone know what he wanted or didn't want.
    Micheala

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  2. I just wanted to thank you and your husband for your love and patience. I am myself from Russia and I am very grateful for your acts of kindness. I know these kids are very very lucky to be where they are and to have such a wonderful family!

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