An Update on Gabe

Our little Gabe has many nicknames around here.  Gabey Baby.  Mugisha.  Mugi.  Mister Moo.  Little Stinker.

And, one that I forget to say much, but long to remember every day:  Miracle Man.

It was probably two months ago when I realized that many of my friends (at least the ones I don't see often) still don't know much about Gabe's "diagnosis", if you will.  And, after receiving questions after posting on Facebook a few days ago about the mixed emotions of our neurology visit, I thought I should probably share a little update about our precious guy.  

I'm not sure what has happened to my blogging time (ha, that was a joke) but I do think it's so important that I share both the joys and the hardships with those who love us, and this still seems like the best place to do that...as scattered as it might be. (For instance, notice that I'm updating pics from the last six months in this one blog post.  Hey, take what you can get!)

Short backstory for those who need it:  When we came home with Gabe over a year ago, he was diagnosed with cerebral palsy (spastic quadriplegic, to be specific) and epilepsy (due to seizures he had while still living in Rwanda).  Both of these diagnoses, we already knew were coming, although we had no idea what that meant for his future (and still don't.)  As you may remember, we took him to the epilepsy monitoring unit for three days in April 2012, and he had no seizures.  We took him off all meds for seizures at that point, and we have still never seen a seizure!  This is a miracle and a praise we offer up to God often!  We do know that these can return at any time, and most likely will, if you look at the statistics medically.  However, we believe God has taken them away, and we are standing on that hope.

Meanwhile, as the seizures became a non-issue for Gabe (I love typing that!), we were able to focus more on the issues he does deal with on a daily basis.  And, this is where it gets tricky.

I don't want to paint a picture that is only rosy and easy and sweet.  Because some days are just plain hard.  Many times we're confused, and begging God for clear direction on what to do next.  And, honestly, there are days where I'm just exhausted.  

But, on the other hand, if I told you all about those things, I'm so afraid that you wouldn't get a clear picture of how absolutely awesome our boy is.  How happy he is.  How loving he is.  How stinkin' SMART he is!  How much FUN we have!  And how God provides for ALL we need to care for him...including energy and strength and excitement for his progress!

So, I'm torn with what to share.  There is a balance beam we walk as parents of a child with special needs.  Every day we walk it.  You defend your child and his strengths, and you beg for advice about his weaknesses.  You take pride in who he is, and you wonder (and sometimes worry) about what he will become.  Some days you teeter, become unsteadied, and almost fall, but regain your balance.  Other days can seem like you're an Olympic gymnast and can flip and flop and still land perfectly because everything is going right.  And, then other days you fall right off because the flip that felt right went all wrong and the day unraveled with no warning.

Gabe is such a precious little guy (who's getting bigger by the day!  Yay!).  He understands so much cognitively and can communicate his wants and needs, what makes him happy and sad, and even what toy he wants to play with.  He follows our conversation and knows what we're asking him or even telling each other in ways I really can't describe. He recognizes people and knows their names.  He recognizes songs and gets so excited to hear his favorites.  But, he's not able to verbally communicate with words.  He can copy some sounds, and definitely tries hard to form words. He says "hi" and waves goodbye.  And, he can shake his head "yes" and "no" (most of the time).

And, for so long, those limitations were pretty normal...because he was still little.  But, now, it's becoming harder, especially for Gabe.  He gets frustrated that he can't say what he wants.  And, as we guess and try to help him communicate it, it can be exhausting for everyone.  But, oh man, there is NOTHING better than guessing RIGHT and seeing Gabe's face light UP!  "Gabe, do you want a banana?  Fussiness.  Do you want a cracker?  Fussiness.  Do you want a yogurt?  EYES BRIGHT, LAUGHTER, and A SMILE AS BIG AS TEXAS.  Bingo.  We got it.  It's the best feeling ever.  For all of us.  :)

His speech therapist is now working with him on communication buttons, which happen to be the cutest things ever.  He has a button for "more", and is now working on completing a song at the right time.  So, we sing "Old McDonald had a farm", and he pushes a button that says "E-I-E-I-O".  He also has buttons to distinguish between two things, and he is learning to push "yes" or "no" buttons.  It's amazing to watch!!

The girls are sooo awesome with him and have a "Gabey voice" they use to say what they think he is saying.  He loves it and laughs so much.  It's usually silly nonsense, but it cracks him up.

Really, the love of his sisters and Rwandan brother is one of the biggest miracles in his life, I believe.

They just pour out love on him constantly.  And, at any moment, on any day, you can find a pile of siblings around him laughing and singing and talking to him.  It never ever ever gets old.  

So, as I said, life with him is SO MUCH FUN, that I don't even know how to communicate it well.  (Which is why I haven't in so long.)  He is the by far the most popular Jacobs around and everyone who knows him, loves him, adores him, and fights over holding him.  It's pretty amazing to see how MUCH he is loved by so many--even strangers who can't help but stop and talk to him!!

Okay, where was I on the CP update?  Physically, Gabe does struggle.  With spastic quadriplegic CP, all four limbs are affected, as well as his trunk.  His trunk and neck control is very weak right now, so he is "loose through the middle".  But, his arms are very tight (imagine having your arm muscles constantly contract...that is what he deals with), which hinders his ability to crawl, reach for things, or hold things for long.  Again, this can lead to frustration for him, and it's heart breaking to me!  But, as we have continued to adjust medication, his arms have responded slightly.  And, he is now experiencing times during the day where he is relaxed.  He is now able to give a high-five, wave to people, and get his paci in and out of his mouth.  {Oh, and he has a dance move that is pretty awesome too.  He busts out any time a song with a strong beat comes on and it has now become our whole family's favorite move.}  Every single accomplishment, no matter how small to others, is a huge celebration at our house!!

His legs are doing pretty well, although we obviously deal with muscle issues there too.  He can tolerate standing in his stander equipment very well, and he also loves to bounce and jump.  He does the correct sequence of walking instinctively, although there will have to be further treatments before he could walk correctly...but it all gives us hope for the future of his mobility.  And, he can kick those legs like cRazY both on land and in water.  :)

The boy LOVES to swim.  It is the only place where his muscles don't dictate what he can do.  So, he is free and relaxed in a warm swimming pool and the happiest guy on earth!!

His personality is so fun, so full of life, and overflowing with love, especially for his family.  That is code for "he'd rather be held every second of the day by those he loves than ever be put down to play". This is also code for "he's spoiled rotten".  :)  

We are trying to work on this, and have him play independently a little more.  But, who are we kidding?  We're still holding him way too much, and not sure how to really change that!  He cries (read:  throws a tantrum) when he's put down, which makes his muscles stiffen, and makes my heart break.  So, we have this awesome little cycle going on that is not healthy, but that we are working on slowly but surely.  The first step is admitting you have a problem...right?  

As I mentioned in the facebook comment, the road we are on with doctors and therapists is always full of mixed emotions.  Do you know how many different theories there are on treating CP??  Even within our team of therapists (physical, occupational, and speech) there are different strategies they think we should follow.  Then, mix in a pediatrician, a neurologist, and all the specialists I read about online for hours, and it leaves this momma as one confused lady.  And, the thing is, I KNOW in my head that no one knows Gabe better than Mark and me and we can and should trust our instincts.  I also KNOW in my head that our God is greater and stronger and bigger than any doctor or theory or treatment.  And, that any day, at any moment, God can choose to breathe over our boy, and He can make him fully well.  He hasn't chosen to do that yet, but I trust Him to guide us to each step of healing along this road.

So, that's where I would say we are right now.  We're at a crossroads of treatment.  There are some more time-intense treatments available to Gabe now that he is older and stronger, and we need God's wisdom and direction as we seek to do what is best for him.  We need wisdom to know when to trust the neurologist, when to trust the therapist, and when to just trust our own parental instincts.  We trust God to continue to provide the financial resources we need to provide these treatments for Gabe.  And, we trust God to provide the strength for all of us to manage what is required for these therapies.  We trust God to show us clearly when and how to add another caretaker for him during the week, when to add more equipment to help us care for him appropriately, and when to reach out to others who are on this same road for advice and help.

So far, He has been more faithful than we can ever tell in a blog post.  He has knit our family in such a beautiful way, and I can't begin to describe the depth of love that flows between us because Gabe is our son.  

No, this road is not easy.  No, we don't know what we are doing.  And, no, Gabe has not had drastic physical improvements in the last year.  (I never know how to handle that question of "So, are things getting better?" I guess it depends on what you think "better" means!)

All I know is that we stand strong on the Rock, who is our Redeemer, who says that every life is precious and perfectly designed for sharing His glory on earth.  And, that is what we have experienced day in and day out as Gabe's parents.  Our little stinker is a shining light for the love of God, and nothing on earth can separate us or discourage us or keep us from experiencing that love in our family!  God is good all the time!!