Manny's surgery

I haven't talked about this surgery much only because it involves some "privacy issues".  Manny needed to have some surgery on his ... uh, little boy parts.  2 different procedures, done by the Urologist.  We put it off as long as we could.  Today was the day. 

As I write this part, he's still in the OR.  I find it best to keep my mind busy or it wandes.  And I discovered I have a VERY over active imagination!

Here are some pictures while we were waiting presurgery. 

Well ... the surgery went better than expected!  Manny came through with flying colors.  The doc was able to do the "easier" version of the surgery.  (Though I am still squeamish to look!) 

After the morphine kicked in, he was a different baby.  It was like a light switch just clicked on and he was back to Manny. 

We got him home and he's been great ever since.  We've been extra careful with him.  He's been watching the girls play Wii and watching movies.  But he's his happy self.  It's almost bedtime now and no troubles. 

We know that God loves this little guy and we are so very thankful for all the prayers.

A most significant day

I'll try my best to share with everyone just how significant today is.  December 26, 2010.

1)  Today Manny is 18 months old.

2)  It is 9 months from the day we first got him.  (March 26)
3)  That day he was 9 months old ... so today he's been with us half of his life.
4)  This is 6 months from the last family picture so today we've taken a new one.

5)  Today I cut his hair.  He has some very long ones ... like 5 inches long on the back on his head that knotted easily.

6)  Today is the day after the docs say he for sure wouldn't be alive.  (That diagnosis was given in May, but reversed in October since he was not regressing but progressing.)
7)  His statistics:  (Disclaimer:  his height is not very "exact" since it's hard to know where to measure him due to his feet.  So we have done this consistently the same way.  Some docs measure to different spots and get a lot different heights but this is from the way we measure.)

at 9 months (when we got him) he was 16 pounds, 25 inches.
12 months he was 19 pounds 27 inches
at 18 months he is 24 pounds 30 1/2 inches

So basically, in 9 months he has grown 8 pounds and 5 1/2 inches!

Just a few months ago, we were putting Manny before the God of Heaven, begging Him to choose LIFE for him; to let us have him.  Somewhere between the end of May and now, God said YES.

Truthfully, there are many, many hard - very hard days in our life.  Manny's condition has challenged our faith to the max.  And yet, none of us would change our decision.

If you were to ask the kids what they're most thankful for ... each of them would tell you that they are thankful Manny lives with us, that Manny is being healed and that Manny is still alive.


My dearest Manny,

You are my heart.  You bring joy in a way that I never knew possible.  You make me realize just how fragile and therefore just how precious life is.  You make me realize just how much faith it takes to live every day, how much we all need to fully rely on God.  You make my life better.

I love you with all my heart,
Mama

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. 

Might step on a few toes

Daily I muse on the various aspects of my life.  One that comes up often is the issue of faith.  With 6 kids, all adopted, all with special needs, 2 with potentially life threatening conditions ... I have plenty of chance to do that.  And as a person known to be a Christian, a woman of faith and a Pastor's wife and daughter, other people often give me their take on "faith". 

Quite frankly, some I just don't agree with.  And I'm well aware that *I* might be the one who has it wrong.  But some people's definition of faith ... uh, creeps me out. 

There is one version I hear a LOT which is most bothersome to me.  And that is the "deny it exists" statements and call it faith.  "Pretend it's not there" and call it faith.  Now of course people don't use those phrases but it's what they mean. 

A conversation might go like this...
Other person: What's going on with Jacob?
Me: He was newly diagnosed with a kidney condition.
OP:  What is it?
Me:  FSGS and it's quite serious.  Unless God intervenes quickly, the doctors feel he will need a transplant in less than a year.
OP:  Well we'll just say it's not there. 
Me:  (insert the sound of crickets here)

I've had MANY MANY conversations pretty close to this.  Wording changes.  Sometimes it's about Manny or Dan's job situation or any other various things we might be dealing with.  But the sentiment is the same every time. 

Now let me clarify.  I believe as Christians that we  have a Heavenly Father who is able and willing to be a Healer.  I have seen Him heal.  I have been a part of many, many miracles.  So to ME, the phrase, "I will pray and believe in Jacob's healing."  THAT makes sense to me.  

I also believe in the verse that says (paraphrased) that we should call things that are not as though they are.  So to me that would be saying, "I believe Jacob is healed." or something similar.  That works for me too.

But to deny something factual and call it faith?  hmmm.  That one challenges me.

I've heard it in various forms ... don't accept the doctor's report is one I hear a lot.  And yes, I don't believe a doctor can say what exactly is going on.  They certainly are guessing a lot of times (educated guesses, but they are guesses).  And I don't believe they are accurate on prognosis with dates of death often.  (God gets to number a person's days!) 

But let's do a hypothetical.  Say I fell and probably broke my arm.  Feels like a break.  Looks like a break.  Acts like a break.  Xray shows a break.  I would probably believe it is broken.  And it would seem stupid for someone to tell me it's not broken (in faith).  Or to not believe the doctor's report (in faith).  Or to just keep on using it like you always would (in faith).  etc etc.

But I've heard those things when it comes to Jacob and Manny.  Like for Jacob ... he has the symptoms.  Blood tests confirm.  Urine tests confirm.  Biopsy confirm.  But I'm told not to accept the reports.  And my brain cannot figure out what these people are saying/meaning.  It truly confuses me! 

So what DO I believe?  I believe that I should (and I do) go to God and tell Him the situation.  I ask Him to heal Jacob of this condition.  Pray for the complete healing.  Pray that Jacob will live a long and healthy and productive life.  (I ask, seek, knock.) 

I guess the bottom line is that I'm challenged by where some people draw the lines between "reality" of what we see and experience around and where that collides with faith and the things of "heaven". 

I can only go to scripture.  Hebrews 11:1 says (again paraphrased from the NIV) that Faith is being sure of what I hope for and certain of what I do not see.   Or the KJV says that Faith is the substance of things hoped for, the evidence of things not seen. 

So I HOPE for a healing for my boys and I keep hoping and believing for it even when I don't see evidence yet.  And THAT is faith. 

At least that's what I believe. 

What do YOU believe?

He's going to be a tv star

About a month ago, we were contacted by a local Christian TV production company.  Mark (our main contact) had talked to Ed (a friend and local pastor).  Mark was looking to feature a situation that needed prayer and Ed thought of Manny. 

Mark, his wife Angela and their two beautiful boys Lucas and Josiah came to our leadership church meeting this past Saturday night.  Josiah is almost 1 and is deaf.  It was so neat watching him run around, getting into everything.  (He's quite a good walker already.)  I couldn't help but see him and then think of Manny and want to press in harder for his complete healing. 

Manny is 5 months older than Josiah but can't do most of the things Josiah could do.  Even just the simple thing of eating.  Josiah ate Cheerios (a completely "normal" 1 year old thing to do).  But Manny?  I plugged him in.  Josiah ran, sat down, stood up, crawled, picked up toys, threw a ball ... you know ... regular 1 year old boy things. 

But true to Manny form, he can get just as much enjoyment from WATCHING people do something fun as doing it himself.  That statement chokes me up.  I can't tell you how significant that is.  (I'll have to write a blog explaining just that sometime and why it's so profound.) 

Anyway ... we all agreed it would be a good idea for us to share Manny's story.  Last night was the time we chose to do it.  3 hours later, we had the 5 minute segment completed. 

They will have to edit it, put music to it, etc.  They say it should be ready in a couple of weeks.  When it's ready, we'll be sure to share the details of how to see it. 

But in thinking about what we wanted to say ... it brought it all back up.  We told the story from the beginning up to where he is now.  And as the camera rolled, it's amazing how the emotions are all still just so fresh, so raw, so real.  I have no clue if that will show up on camera or not ... but I was choking back tears telling his story. 

I was just as choked up by how far he has come!  (Like my last blog entry "You're not going to believe it").  You've come a long way, baby!  Like the picture at the top.  I bought him this new art chair.  Because the top angles just right, he can sit and write or read a book.  He can even flip the pages.  And I'm in Awe of God at being able to say that!  No one ever thought he'd be able to do any of those seemingly normal things. 

And at the end of filming I said something like this:  We have a BIG God.  He has done amazing things in Manny's life.  But he still can't eat, or walk or do the things a 16 month old should be able to do.  We're asking for his complete healing. 

Can't wait to see it.  Hoping his story touches people.  I even pray that people watching his testimony will be healed by watching it.  We're so thankful for the opportunity to share his story. 

Thanks Mark and crew!

You're not going to believe it!

So you know we got Manny 7 months ago and he could move ONLY his eyes?  Well ... one step at a time and here are some things he can do now. 

VERBALLY: 

He says about 50 words.  Such as Mama, Dada, Hi, Bye, uh-oh, cat, meow, yeah, etc. His most common word is "Up" followed by "Go".   

He says several 2 word phrases.  Such as Hi There, Hi (name), Love you, etc.

He signs about 15 words.  Such as milk, play, music, song, etc. 

When asked "Where is the baby?" or "Where is Manny?"  He points to his tummy (with both hands) and says "Manny".  Well ... actually he says, "Nanna"  but it's close. 

When asked "How old are you?"  He raises one finger and says, "One." 

PHYSICALLY:

He can move both arms. He is starting to lift his arms.  Not very high yet but it's movement. 

When he wants to push a button on a toy, he uses one finger to push not just "slap" at it with his whole hand as most babies do at this age.  (Shows fairly high intelligence. My mother is a PhD and has done thousands of IQ tests of babies and children and she estimates him at at least average intelligence if not high average ... which is shocking since they thought he was not even "there" mentally!) 

He is moving his legs.  He cannot put any pressure on them but is starting with mild resistance.  And he can "kick" a ball while in a seated position.  It as to be a tiny beach ball but it's so exciting. 

TODAY: 

Today was the most exciting improvement though!  Yesterday he got a new device called a TLSO.  It reminds me of a turtle shell.  He doesn't mind it at all.  Makes him harder to hold since he is heavier.  But so worth it.  Yesterday he wore it about 30 minutes during Physical Therapy. 

Today I decided to take him out in it.  We put him in a regular high chair ... which he has NEVER NEVER sat in before because he can't do it.  (We've tried.)  But today ... no problem while wearing his TLSO! 

He sat there for about an hour.  And while there, his head never went limp.  His arms seemed a lot stronger.  He seemed a lot more "stable."  He really enjoyed being AT the table with the kids and not in a stroller or in my arms. 

So I thought why not test out what else he could do?  So I put him in a grocery cart.  And I just cannot believe how well he did.  He looked so "normal".  He was sitting.  Arms were on the handle.  Head was looking around at all the stuff.

And then I noticed ... his legs were swinging.  He seemed so stinkin' happy!  It hit me, his legs have never been at this angle before so he's never felt that feeling before.  But he loved it. 

Then tonight, he was sitting on someone's lap and I noticed ... he was still able to swing his legs.  It's like he discovered them and now he can do it easily. 

Our Physical Therapist is NOT going to believe him tomorrow when I take him to PT.  It's been a HUGE leap in skills in 24 hours. 

I know it's hard to describe this in words so I hope you're understanding all the leaps and bounds this kid is making.  It's truly MIRACULOUS!  I know people use that word a lot and don't really mean it ... but in his case, it's the most accurate description of what is going on with him!  Even his Doctors and Therapists are using that word. 

Thank You Lord! 

Happy Birthday Kaley

11-11-99 a tiny little girl was born in a home in Tampa, Florida.  Her birthmother called 911 after the birth.  Paramedics arrived and the baby was taken into foster care under the "Safe Haven" program as the birthmother said she wanted the baby adopted.  She had several medical complications but eventually was released from the hospital. 

2-14-00 we decided to be her parents!  One of the happiest days of my life.  Starting the next day, I visited her every day until our foster/adoption paperwork came through.  

3-23-00 was the first night she slept in our house.  While she was "only" a foster child at the time, I never even realized there was a chance she wouldn't stay with us forever.  (Glad I didn't know that.)  That night she was sleeping next to me and we were just looking at her, staring at her.  We prayed over her that night.  And there were times I would cry tears of happiness as I prayed ... and every single time, without fail, she would let out a small whimper every time.  It was then that I knew we were connected in a unique, special way. 

Today, on 11-11, she turned 11.  Cool birthdate, huh?  We made cake.  Kaley wanted a cat for her birthday but settled for a cake version.  This was entirely made by her.  She mixed it.  She baked it.  She frosted it.  She decorated it.  So creative! 

I got her this new jean jacket and really cool new purse and couldn't believe how grown up she looked! 

What are some special things about Kaley?  She is one of the most responsible people I have ever met in my life.  She has this innate ability to just "know" how things work.  She is incredibly creative.  She thinks outside of the box.  She is becoming a great Mama type person.  I think our hearts beat as one.  I can see so much of myself in her. 

One day when she was little she told me she wished she had been grown in my tummy.  She was angry she wasn't.  She wanted to go back to little and do it over again and that way our skin would be the same, our hair would be the same, she would be 'big' like me.  Eventually she got past that and seems to understand.  But what she hasn't come to see yet is what *I* know ... she was born in my heart.  And THAT is why our hearts beat as one. 

My tiny, precious little girl who is as big as anyone I know.  I Love You Big Girl!

Today not so good, let's try again tomorrow

Cuteness at Wendy's the other day

Manny slept through the night for the first time since we've had him!  Not one peep.  Aahhhh ... Can't tell you how wonderful that felt.  I was actually feeling semi-human today.

Headed to the social security office (I know ... don't be jealous).  Had to get a new number for Manny ... long story short, his number is being used by ... ah, um ... let's just say "someone else".  It's amazingly hard to prove someone is who they say they are.  Even with an adoption paper, guardianship papers, birth certificate (which states me as mother, etc.).  But eventually our good attitude and his charming smile got us out of there.

As I headed out of that office, got a call from the school that Zoe was throwing up.  (Never good ... one gets it, it's usually just a matter of time until the rest think it looks like fun so they try it too.  It started Saturday night with Jacob.)

Meanwhile, Manny woke up with a clogged gtube error message.  I tried to get it worked out before we left but couldn't so I waited until his 11 am feed to do it.  And of course, it was really clogged.  I tried all the tricks.  I googled what to do.  Did everything.  An hour later, he hasn't eaten since 5am and nothing is going in.  He is completely dependent on this thing ... NOTHING can go in any other way.

By noon I call the GI with the news of our emergency.  Let's just say that by 5pm they had still not called back.  SERIOUSLY?  I will be on the hunt for a new GI tomorrow~

What they don't know - is that was going to the ER by 3pm if I didn't get it to work.  I FINALLY got it to work just before then.  He got fed.  All was well.

What else?  I have sinusitis with ear infection and a fever.  Only 101.

Next got the kids from school.  Was supposed to go tonight to have parent teacher conferences but ... just don't feel like it or dragging Zoe out in it.  And it's raining a lot today so we'll just have to skip that.

OK ... so then homework with less than a good attitude (mine, the kids were fine).  Kaley cried.  They gave her this sample test and she couldn't do any of the problems on it.  And I told her that meant they haven't taught her how to do it.  I was upset at THEM, not HER.  Eventually, she quit crying.  She is hitting that age where hormones go haywire and I could blame it on that but truthfully, I think they just expect too much out of her.  She is trying but just doesn't get it yet.  I'm going to have to work on that.

So as we do homework, I hear the cat hurl.  Of course out of our WHOLE HOUSE, he chooses to throw up right on the baby's gtube bag, tubing and extension.  Seriously??  So I cleaned it up, threw all that out.  Thankfully I have extras but only because I have great friends.

Meanwhile, I always do my own hair coloring.  And I wanted a change.  A SLIGHT change.  Bought something called "Light golden blonde".  Let's suffice to say I now am twins with ELMO!  Yikes.  Can't get this color out fast enough.

Finally, as I write this tonight at 7pm, Manny is starting to run a slight fever.  His antibiotics were finished yesterday.  Zoe has a double ear infection (with a horrible cough and a lot of pain).

I'm about to head the gang to bed.  PRAYING we get some sleep tonight.  And praying tomorrow is a heck of a lot better than today!!

Misc happenings around here

Zoe, 5 so much wants to hold Manny all the time but he's very big and very difficult to hold.  But every now and then the stars align and she is able to hold him.  The other day she announced, "I want to be a doctor so I can fix Manny."  My heart just about burst with pride. 

Waiting at the Doctor's office

Kaley, 11 is in 5th grade.  Her school has the "Teriffic Kid" program and her teacher nominated her.  He wrote me an email and said he wished he could nominate her every day.  He wrote the sweetest things on her certificate.  A keeper for sure.  And I know it's smal but if you look in the smack center of the picture, the little one in the pink jacket is Kaley.  All the others are 5th graders too and they TOWER over her. 

Kaley gets "Teriffic Kid" award


Perhaps you've heard me discuss my dislike of Chuck E. Cheese.  Why?  It's soooo loud in there.  But the kids love it - including Manny.  Kaley loves taking him along on the rides and he cries when they stop. And just a bit more about Kaley ... she is sooo amazing with Manny.  He hadn't been sleeping at all during these past 3 weeks with pneumonia.  So this Saturday he was up very early and I was dead.  I took him to her and asked if she would watch him while I slept.  She happily got out of bed and took care of him as I got 2 amazing hours of sleep.   

Chuck E. Cheese

Karate moves

This picture is sweet and sad all at the same time.  Manny HATES being on his tummy.  He cannot lift his head at all, puts pressure on his gtube, etc.  We do it anyway.  But he cries the whole time like he's being tortured.  This day, the Physical Therapist brought this big red ball to see if he would like it better this way.  Uh ... no.  So he was bawling his eyes out during this picture.  And Jacob heard him from the other room, came in and put himself in this position to play with Manny.  Then *I* was bawling practically.  Gotta love those boys. 

Physical Therapy

Today, Kaley's teacher from last year (Mrs. Ryan - whom we love by the way!) gave Manny these new rattles.  2 for his wrists and 2 for his feet.  He was amazed by the rattling he could do.  Dancing.  Giggling.  They were quite the hit.  What a great gift!

Enjoying the new rattles

 So if you're squeemish, you might not want to look closely at this photo.  But Zoe lost 2 of her bottom teeth on Saturday.  These are the first to come out by "natural means".  She is missing several on the top, had a few removed, etc.  But these are her first actual "big girl teeth".  She didn't wince or anything.  I think she is made of iron or something ... she has the highest tolerance of pain of anyone I've ever met. 

Zoe loses 2 teeth at same time

Over the past 3 weeks, Manny doesn't sleep much.  He tries.  But he struggles to stay asleep for more than 5-15 minutes at a time.  It's so very difficult to deal with this for so many nights in a row.  (Guess I'm showing my 41 years.)  I even did medical foster care for about 9 years and had many, many drug addicted babies.  THIS is MUCH, much worse. 

But eventually ... he goes back to sleep and he looks like such a sweet little angel.  It's impossible to get mad or frustrated with him too.  We still are believing for that amazing miracle that he is completely healed and gets to live a full, long, complete life.  But this struggle has taught us to enjoy every single moment.  To treasure every day.  None of us ever know how much time we have with loved ones.  And we should make the moments count. 

Gotta love that sleeping angel

Drink of My Blood

Jesus said, "I tell you the truth, unless you eat the flesh of the Son of Man and drink his blood, you have no life in you" (John 6:53).  

Most of us read that and immediately know this is about "Communion" or "Passover".  But at the time He said it, many people were offended and actually walked away from following Him.

So why bring this up now?  Need a little controversy?  (I know I will be offending some at posting the following.)

Who has watched the Twilight series?  Or other vampire movies?  Seems to be a very popular theme lately.  And I can't help but be struck by the similarities.  Seriously, think about it.

I personally don't know much about vampires.  I haven't read nor watched the series ... I objected based on the subject matter.  So I went to look it up.  Here is just one link regarding "Vampire rules".  (there are many) http://www.eathorror.com/vampirerules.php

Vampires drink blood.  Christians are to drink of Jesus' blood.  

To become a vampire, you are to drink of a vampire's blood.  To have life, Christians are to drink of His blood.  

Vampires won't go out in the light.    God's way sheds light in our heart. 

They often sleep in coffins or a grave.  Christians are to overcome the grave like Jesus.  

They are indistinguishable from other humans by their looks.   Christians too.  

Vampires are seeking immortality.  Christians too.  (We use different terminology though.) 

Vampires have powers over people, to make their minds weak.  Christians are to renew their minds, bring every thought into captivity.  

Vampires are killed by crosses.  Christians are healed by one. 

etc etc 

Like I said, I'm no expert of the world of vampires, nor do I choose to be an expert.  What I AM creeped out by though is the way this beautiful truth of 'drink of My blood' has been perverted and entered mainstream American and even most Christians.  Many think nothing of reading a series like this or watching the shows.  And I'm disturbed by that.  And I'm aware most of you reading HAVE watched this series and have a completely different take.    

I think the perversion is just too close to me.  

So I go back to the original source ... Jesus Christ.  I will personally take of HIS blood, eat of HIS flesh.  And not the counterfeit ones.  Not even in my fiction or my fantasy. 

And while I'm busy offending everyone, last year I posted about why I don't personally do anything associated with Halloween.  (You can go back to October last year if you want to see it.)

Lest you feel sorry for my kids ... we clean up on November 1.  You can believe how cheap the candy is then.

The dust settles

Today I did what I knew how to do.  Put one foot in front of the other.  Repeat. 

After the news from yesterday, I took the night to call family, prayer warriors, to update the blog and to just talk to Dan about the next steps. 

This morning I woke up with a plan.  One step at a time.  That's it.  As simple as that is, it's harder to do sometimes than others.  My brain wants to go to the end of the story .. to find out exactly how and when and where the miracle will take place for Jacob's life.  And instead, I must live in the moment.  And quite frankly, this moment stinks. 

But I have learned to see the beauty in truly living every moment.  Not trying to escape it or dull it or pretend it's not there.  But to truly feel what I'm supposed to.  To truly experience the good, bad and the ugly. 

See ... in THIS moment, I think I have strep. The baby has pneumomia and may need to be hospitalized again.  Zoe had a clean bill of health last week but today has an ear infection again.  Jacob has a new diagnosis.  Luke is miserable with allergies.  Sam is with a grandmother who is moving across the country.  Dan is looking for work. 

But at this exact moment, I also have so many blessings I cannot possibly recount them all.  So I will just name a few. 

In this moment, I'm thankful for ....

food on the table (more than enough)
roof over my head that isn't leaking
car that runs
6 amazing kids
1 amazing hubby
2 amazing parents
many wonderful relatives
countless friends who are supportive
sunshine and warm weather and blue skies
computer access
great health insurance
experienced doctors who care about us

But I'm also thankful for some specific things about Jacob ....

• God foresaw that he should be homeschooled this year so we would have alone time to talk
• That God healed his brain enough that we can now have amazing conversations and he understands most
• That God gave us this son
• That he is not alone in this ordeal
• That he is no longer an orphan going through this alone like is the plight of most African American kids in foster care
• That he is kind, understanding, compassionate, gentle and strong
• That he is able to finally voice some of his concerns/worries.  (Something I wondered if he'd ever be able to do).
• etc

Today Jacob and I spent most of the time the kids were in school just talking.  He had a lot of questions and concerns.  (Mostly about side effects of meds, not the whole overall picture.)  And by the end we had a plan to just focus on one step at a time. 

By the end, the dust had settled and he was visibly emotionally "lighter". 

We can do this.  One step at a time. 

Another one???

Breathe in.  Breathe out.  Repeat. 

Some days you do this automatically. 

Some days you have to remind yourself. 

History:  Jacob turned 12 in July and had a check up which included a urinalysis.  Came back positive for protein.  Test after test came in showing something is not right with his kidneys and all pointed to Nephrotic Syndrome.  Due to his age, race and gender, the most likely version of that is Focal Segmental Glomerulosclerosis or FSGS. 

Biopsy came back today positive for FSGS.  This is the worst case scenario.  Why?  Because this is the one that doesn't respond to treatment.  If you cannot get the protein under control, you will die. Plain and simple. 

His biopsy showed 20% of his kidneys are currently affected with scaring, hardening and/or atrophy.  This is considered "moderate". 

Once your kidneys are having trouble, your liver gets involved and tries to help.  This causes high levels of cholesterol.  (His are over 300, normal for him is under 160.)   And eventually, the heart gets into the act to try to help the kidneys and you can easily have hypertension or other heart related conditions.  (We will see a cardiologist soon.)  You will also likely get very tired easily and could start losing muscle mass because the protein in the body is decreasing.  (His is.) 

So today ... we were told we should try the treatment anyway ... in case he's the one in a million that responds to drug therapy.  For him, that will be massive doses of steroids (which is not without it's own  horrible side effects).  We try this for 8-12 weeks.  Meanwhile, we'll do a urinalysis every 2 weeks and a comprehensive blood test every month to monitor his kidney function. 

If this doesn't work (which the doc suspects it won't), we have some choices.  All of which are bad.  Immunosuppressants are the most likely next choice, depending on genetic markers. 

All in all, without immediate divine intervention, we're looking at a transplant in 1-5 years.  At the rate he's progressing, the doc thinks closer to 1 year.  Transplant failure rate is high for this condition.  Relapse is about 80%.  Longterm survival is not very high. 

So ... here we go again.  Another life threatening condition. 

It's not every day you're told such news. 

I'm not wanting to get my head around this.  I'm wanting this to be a bad dream.  And I want to wake up. 

So how's Jacob in all this?  He's processing.  He is worried ... not about the statistics and data (he doesn't know those) but he can tell this is serious.  He knows.  He is being a trooper on the outside.  But I'm his mama ... and I can see the worry in his eyes.  Maybe even a slight depression. 

But he is still looking to God, his maker and healer.

143 million orphans ... uh, not exactly

I am giving fair warning now that this might not be a popular post.  But I have this pet peeve about accuracy and truth.

First let's start with the fact that I think ALL children deserve a great life.  A family.  Love.

I know that God is the Father of the Fatherless and I truly believe it is up to US how we care for HIS kids.  And I truly believe that we will answer for how we did that.

I believe in Matthew 25 where it calls us to take care of the "least of these" ... orphans would certainly be on that list.

James 1:29 ... taking care of the fatherless and the widow.

etc etc etc.

Clearly I am "on board" with this whole concept.

So what's the problem?

The number 143 million "orphans" (also seen the 147 million number being thrown out recently, not sure where they get that.)

Up until fairly recently I was spouting that number as gospel as well.  I wanted to cite the source in a book I'm writing so I went looking for the source of that number.  And I found it.  Unicef.  I have no clue how they got this number but this is where the 143 million orphans number comes from.  (See link 1 below.)

Again, what's my problem?

ORPHAN .. I thought that meant had no parents.  But according to them, it's if you have lost one or more parents.  (see link 2 below)

uhhhh ... that changes everything.   So there are 143 million kids who have been identified as "at risk" which would be a better term in my opinion for this group.  (Still needy, yes! But need to be adopted? no)

Of those 143 million, approximately 16 million have lost both parents.  (NOW we're talking Orphan ... well sorta).  Because most of those (number not mentioned in the article) ... are living with relatives such as a grandparent or aunt, etc.  Like I said, I have no clue if those numbers are accurate or not.  These are their numbers.

So how many kids are actually in need of rehoming?  How many live in an orphanage?  In foster homes?  versus those who are living with a parent of family?  How many of these 143 million need to be adopted?  A lot.  Many.  Too many.   But certainly not 143 million.

My point?  I feel betrayed.  I feel misled.  I feel like people keep this number circulating, thinking it's how many kids need to be adopted ... and clearly it is not.

Adoption needs to be a huge push.  I think the Christian community needs to step up bigger and adopt more kids.  (My personal philosophy.)  We also need to do more of "At risk kids" care ... like helping those kids right in their own communities with clean water, safe streets, warm clothing, proper nutrition, good education, etc.  Because 143 million kids need HELP, not necessarily a new mom and dad.

Bottom line ... if you happen to be one of those continuing to use the number 143 million orphans needing to be adopted, would you please consider changing it to reflect the accurate picture of what is really going on?  Especially if you are a part of a bigger organization.  Thanks.

LINKS:

http://www.unicef.org/sowc06/press/who.php  the 143 million number

http://www.unicef.org/media/media_45279.html  THEIR definition of "orphan"

Our trip

cutiepie on the airplane



looking at the airplanes



Manny and I got on a plane on Friday bound for Peoria, IL.  I got asked to come back to speak at a Conference.  Angel Arms Ministry hosted a conference for the caretakers.  They have this incredibly simple idea that every family should be able to attend church ... even if the children have special needs.  If you are not a family with a special needs child, the likely you're saying, "What's the big deal, don't all churches do that?"  But if you are a family with special needs kids, you likely know what I do and that is ... 90% of families with SN kids do not attend church because they feel unwelcome there.  (Very soon I want to write a blog about special needs ministries and the need for them in the Body of Christ.)

Anyway ... for this conference, I got to tell Manny's story ... the first time I got to tell that story anywhere.  I made it through this very emotional talk with only a few tears. 

I love doing funny, uplifting talks.  But this was not that.  It was hard, it was real.  I have doubted my decision many times but pray that people heard what they needed to.  I hope they left with "something". 

The trip itself was great.  Manny is a trooper.  He was very congested when we left and I was worried about his ears.  He can't suck a bottle, chew gum, suck a pacifier ... NOTHING to help his ear pressure.  But he was amazing.  And the only time he cried was when he was bored~!  So we took him out to the swing and he was great. 

On the plane ... extra seat

Friday night he was unusually grumpy and feeling a bit warm.  In the middle of the night he woke up screaming ... 104 fever.  And that was WITH Tylenol and Motrin.  His heart rate was well over 200 and his respiratory rate was 50 at one point.  So clearly, respiratory distress.  Yikes.  Scary.



Saturday the church volunteers made sure he was happy while I was busy with my keynote speech and the breakout session. 

And then were on our way back home.  Manny played for the first flight.  Then he slept the whole second flight (2 1/2 hours).  I know it's a miracle because he was so very miserable just before we got on the plane! 



Little Drummer Boy, during a breakout session



Saturday night was one of the worst nights he's ever had.  For hours he woke up every 5 minutes or so.  He has this blood curdling scream that just jolts you out of a dead sleep.  I eventually told Dan I couldn't do it any longer.  I'd done it for 2 nights in a row and needed some help.  He moved to Manny's side of the bed and took over.  So I was able to take about 3 hours of sleep.  I still heard him crying but it wasn't my responsibility so it was easier. 

We're praying tonight is better.