What's in a name?

Guess who can say his name?

That's right!  Manny.

For the longest time I was Mama and He was Mamma.  You ask him his name and he would point to himself and say Mamma.

This week, he finally learned to say Man-Knee!  Like a pro.  I'm trying to capture it on video but of course he sees the little red light (even out of the corner of his eye) and shuts up.  Instead, he says "Cheese" and holds still!  LOL

He has done this for a while too and don't think I've mentioned it.  You ask him how old he is and he holds up one finger.   But he says "Two".  I think he's confused because you say "One" and then he holds up his finger and says "Two" (the next number).  But either way it's cuteness.

Another cool/funny thing that happened this week was in regards to his serial cast.  They had an orthopedist come in on Monday and do 2 molds per foot.  (He did NOT enjoy that as the procedure is just like the casting procedure which he hates.)  Why 2 per foot?  1 mold is for the day braces.  1 mold is for the  night braces.

Then they proceeded with the casting for the week. These are all supposed to last one week before they're cut off but he's only been lasting about 3-4 days before his feet slip back.  Once the feet are out of position, it puts too much pressure on one spot and his feet get horribly swollen and even have skin rub off.  So we have been doing the put the casts on Monday.  Take off Thursday.  Nothing on until Monday.  Reverse the days for the next week.

We would mark where his toes were and if they slipped more than 1 inch backwards, we would have to cut them off.  Usually the slipping process would take 2-3 days.

They decided they would try a new technique to help him not slip out of them so quickly, hoping they would last until Wednesday.  They would cut them off the day before his surgery (not foot related) and that is the day his night braces would be ready.

Great plan.

Except Manny clearly got a different memo!

Thursday morning casts on.  Thursday morning I checked his toes and couldn't even find them.  We're talking a good 3 inches already. That's the fastest they had slipped.  So I called the casting team and decided I had to get in immediately.  They would just cut them off and not recast.

I got dressed for the day and went to pick up Manny.  I heard this THUD.  Sure enough ... his right cast has just fallen OFF!  I tugged (lightly) on his other cast but it was on pretty firmly.  I wasn't going to hurt him by pulling it off.

A few minutes later, I heard THUD.  Sure enough ... the other cast had fallen off!  I consider this a HUGE gift.  First of all, this saved me about 2 hours ... drive there, cut cast off, drive back.  PLUS it was the merciful way to come off.

He was laughing REALLY hard.  I have no clue if he understood the whole thing, I think he was just happy to have those things OFF!

Finally, he's been having a rough, rough night for the past 5 nights in a row.  He can't stop crying.  He tries but he's just miserable.  During the day he controls his attitude nicely but at night, it just gets the best of him.  I'm exhausted.  Dan's exhausted.  Baby is exhausted.

This morning he woke up with a HORRIBLE diaper rash.  His pee must have burnt his skin (this is new) and it was .... (TMI alert ... if you would like to skip, go to next paragraph).  ... oozing blood.  Eventually today, it was actually leaking blood.

I can't imagine the pain that must be.  We've slathered him in all I know to put on him.  Changing his diaper OFTEN.

I told several people about it and asked for prayers and wouldn't you know ... the symptoms aren't gone yet but I have by sweet, happy baby back.  We're hoping for a good night sleep tonight.

During all this, he has been doing a LOT of "retching".  I think it's like the flu and since he can't throw up (due to the fundoplication), he can only retch.  It takes his breath away and he literally cannot breathe.  We have an emergency kit nearby to help relieve him of the problem.  The past 48 hours, I've had to do it so many times I can't count.  (Usually less than 1 per month.)

We were even sitting at a fancy dinner Friday night and he did it.  I did the procedure without even thinking about it.  Then later, realized just how "odd" this must look if an outside person was watching.  People would actually even feel sorry for us, for him.  And that's sooo not what I want them to see.  Yes, we have unique and different things in our daily routine than most families.  But I wouldn't change it for the world.  Don't get me wrong, I would love for him to be healed completely ... but I don't sit around and mope, praying for a different life in the meantime.

I love my life.

Two views

There are two ways to view Manny. 

9 months old, the day he came to live with us

View one: If a person is seeing/meeting Manny for the first time, they see a beautiful little boy.  Gorgeous, captivating eyes.  Winning smile.  Sweet spirit and easy going disposition.  They hear him talk and are enchanted.  Then they look down and see his arms not working, his legs not moving.  And they instantly view him as a "disabled" child.  Often they feel sorry for him. 

Even Medical professionals.  They view him from the perspective of "deficits".  Can't walk, can't crawl, can't ..... 

I'm always tempted to say, "But you should see how far he's come!"  But all they can see is how far he has to go. 

This view frustrates me to no end. 

View two:  People that have been following along the whole way of Manny's journey see an amazing kid.  He could move his eyes, now he can move almost every body part.  Doctors weren't sure he was even "there" and now he carries on conversations practically.  Coherent thoughts for sure. 

For example, today he got shots on his legs.  A few minutes later, he pointed to his bandaid and said, "On".  "Doctor on."  Uh ... dumbfounded, I was like, "Yes!  The doctor put this bandaid on."  OK so I know it's not like we're discussing Shakespeare here ... but he IS only 17 months.  He never heard English until 8 months ago.  He was written off as basically brain dead.  And now he is putting together a 2 word sentence that I'm sure he's never heard before. 

I am impressed. 

In fact, that's the word the Neurologist used today about Manny.  "Impressive."  See, THIS is the doctor who delivered the news of "Leukodystrophy, end stage".  This is the doc who wasn't sure he was "there".  This is the doc who has removed the diagnosis.  He calls him, "My baby".  He shakes his head in disbelief of the progress.  Today I showed him that Manny can sit unassisted.  He just about lost it! 

This doc sees Manny through the lens of how far Manny has come. 

And I guess I should offer a third view ... how far will Manny go?  We dare hope for the entire miracle. 

Million Prayers

We were honored to share Manny's testimony on a new TV series, Million Prayers.  The youtube version is out and ready for viewing. 

http://www.youtube.com/watch?v=Q2khD8cLFtU

At the end, they asked if we might want to direct them to our church website so we did.  Destinyshouse.com for those who might not know it.  We decided we would do that. 

From here, we can add the updates on Manny.  And we would love to hear about the people who are praying for him as well. 

Feel free to post and share this link as you see fit.  We're not looking for our 15 minutes of fame.  We ARE hoping that lots of people see Manny's story.  We are praying God is glorified above all.  We hope that every person who raises up Manny in prayer will be touched by Almighty God.  We trust that God will also heal them as they pray.  We want their faith to be lifted up as they see God's touch on Manny's life. 

We also hope to bring awareness to special needs adoption.  (Even considering doing a semi regular show.)  We hope to speak on the subject of everyone having access to church (right now, about 90% of families with kids with special needs do not attend church due to access issues).  We hope to show that life with special needs children is amazing!  (I wrote about that in an earlier post about how live over the line is good.)  http://destinyshousechurch.blogspot.com/2010/10/other-side-of-line.html

So for lots of reasons, we would love for lots of people to see this and be touched.  We want God to be famous! 

Manny's story is being written.  Daily I see updates.  Daily I see miracles.  He can do things he couldn't do the day before.  This journey has just begun.  So strap on your seat belt ... and join us for the ride of a lifetime! 

There's More

The music plays, Manny is happy.  He dances, sings, giggles, moves his arms. 

The music stops, he cries.  He isn't pitching a fit, it's like he is truly sad. 

It's a little bit funny. 

One week we had our Mentor come and play worship and praise music on his guitar at church and Manny was getting into it.  Song would end and he would bawl.  Everyone laughed.  The guitarist eventually learned to go straight from one song to the next without any pause.  Problem solved. 

He does this when you sing too. 

He mostly does it when there's a grand finale.  He cries before it's even over.  He knows it's coming. 

And one day, I got a flash of why he does this.  Like a quick vision and realized it wasn't about the music endind.  I said to him, "There's more."  And he slowed down his crying. 

And I went on.  "When you take your last breath, hopefully a long time from now, there's more.  This life is only a short song and then we take our last breath and it ends.  But there's more.  It doesn't end."

He stopped crying and as clearly as I've ever heard anything he said, "I know." 

By now both of our eyes were full of tears.

Today, Manny did it again.  The song ended and I said to him, "There's more" and immediately burst into tears.  I wept for all the people who live their lives not knowing.  Who die not knowing.  Those who take their last breaths not sure if this is it or not.  I cannot imagine. 

And I just want to scoop every single one of them up, wipe their tears and tell them, "This life is just one short song.  There's more!  MUCH more." 

Sometimes the plans change

So the plan was that Manny would have his feet in a cast to get them "straight".  Every Thursday we were to go to the hospital and have it done.  Last week was week one.

Today was to be day 2.  We got them cut off and the plan was to put the next casts on.  But ... sometimes plans change. 

His feet were both so horribly swollen, they couldn't do it.  The skin looked pretty good (better than I expected in fact).  His toes looked fine.  It was the rest of the foot that was HUGE.  Poor baby.  So we left without adding the new casts until the swelling goes down.  Scheduled for Monday to recast. 

The great news is that it's working nicely.  I don't exactly know what the numbers mean and all that but the therapists were thrilled with how well he is doing. 

Like week 1:  Left -20,  Right -32
Today:           Left- 10,  Right -12

________________

On a completely new subject of plans changing.  Today I worked and Dan and the kids picked me up.  The interstate was a parking lot so rather than driving home to do homework and eat leftovers, we stopped by the International Plaza mall and ate some dinner and played at the playground. 










Kaley took the baby all over the place.  And then it happened.  Something I wondered if I would EVER see. 

Manny sat. 

By himself. 

For about 3 minutes.

Do you have any clue how HUGE that is????  

This was without his TLSO brace ... we didn't know we were making this stop.  Dan thought he'd be in the car seat the whole time so it was left at home. 

He wasn't propped.  He wasn't leaning.  He was just sitting there. 

It's significant in so many ways, ways I can't begin to explain.  But for example, "sits independently" is actually a benchmark criteria for differentiating between some of the more severe disabilities and the less severe ones. 

Tears of pride came to my eyes.  All the kids were cheering for him.  They all knew this was big!  And they knew it was the first time. 

I'm so thrilled we were all there together to celebrate such a huge event. 

Sometimes plan changes aren't so bad afterall. 

Thank you Lord for yet another of the daily miracles You keep giving Manny.

I miss them already

Manny has club feet.  I doubt I've mentioned it.  It's pretty low on the priority list.  But now that he has such mobility we weren't sure he would ever have ... we needed to address it. 

Right now, he would not be able to put any pressure on his feet.  No exersaucer, no jumpie, etc.  Eventually we would love for him to stand on those feet and even (dare we hope) to walk.  That's our ultimate hope. 

To do that, we need his feet going in the right direction.  Serial Casting is the best option.  (If we wait, it might be surgery.  But if we do it now, it's fairly benign.) 

Last night, I started getting a bit sentimental.  Strange. 

This morning I woke up downright sad.

I am going to miss those little feet. 

They're cute.  They're special.  They're unique. 

And we're changing him. 

As if to say that he is not "perfect".  That he is "less" than he could be.  And that strikes me really hard.  It sends me to strange thoughts and questions. 

I know that he will be better off if he can stand and walk.  I truly get that. 

But I think he's great ... just the way he is.  I'm his Mama. 

I've heard families go through similar when they decide to repair a cleft lip or remove an extra digit, etc.  They know they are doing the "right" thing but they are going to miss it too. 

I know this must sound awfully ridiculous to someone who hasn't faced it.  But this really was a hard thing emotionally for me today. 

And it got worse to see how much trauma it caused him.  (I didn't even get pictures of the "during" because he was crying so hard.)  His two least favorite things in the world are - people messing with his feet and laying on his tummy.  To do the serial casting, he had to do both.  For about an hour. 

He screamed, he cried, he begged.  For an hour, he never gave up the fight.  He didn't resist the therapists doing the procedure.  Barney didn't help.  Elmo didn't help.  Mama didn't help.  Nothing would make him stop crying.  My heart broke all the more. 

And just to think ... we get to do this at least 5 more times (once a week). 

I was a solid rock.  Telling him it would be over soon.  Telling him he was fine. 

But inside, my heart was breaking along with it. 

I'm his Mama and I'm supposed to protect him from pain.  Today I failed at one of my main jobs. 

And his little feet? 

I miss them already. 

Giving thanks ... for lots of things

Dan, the kids and I headed to Atlanta for Thanksgiving.  The kids were amazing in the car.  Noone got sick the whole time we were gone.  Uneventful except for fun and fellowship.  There were 9 adults and 10 kids in a cozy house.  And yet we all got along (mostly). 

I'm thankful for so many things that I cannot begin to recount them.  I have to do them daily or I'd never be able to keep up ... even then, I'm sure I miss a lot. 

We've been very busy with Doctor appointments since we got back.  Monday we saw the Muscular Dystrophy Doctor.  He was just as confused about Manny's condition as everyone else.  He sent 1 1/2 hours with me asking lots of questions, pouring over my records.  The good news is that he knows specialists at Boston and DC children's hospitals who know a lot about these "out of the ordinary" diagnoses.  So we're thrilled that someone else is "on the case". 

Tuesday Jacob had more tests done.  We're awaiting the results.  We're most interested because he is showing more symptoms.  Tonight I wrote his Pediatric Nephrologist to see what the next steps are.  Still needing many prayers.  ... (Update:  As I was finishing up writing this blog entry, his Doctor called back.  She looked through all his lab values and he is holding his own, not sure why he would be feeling worse.  We're going to adjust medications and go from there.  Yippee!  Huge relief.) 

Today, Manny saw the Urologist.  He has some "issues" due to his condition.  So today we found out he is going to be needing some surgeries and they will be combined.  We're waiting for a clearance from the Neurologist.  It will probably be scheduled for late December.  There are risks but less than NOT doing the surgeries.  This will be about a 2-3 week recovery. 

But even still, I'm his Mama and I can't bear to see him suffer.  And yet, I'm about to do just that to him.  So it's with a heavy heart that I make this decision.  

My children have truly taught me what life means.  What life is about.  What truly matters.