Balloon Thoughts

I am still overwhelmed by the outpouring of love to Manny via balloons!  We're figuring out a way to collect and share bits of all the celebrations held throughout the world for him.   Stay tuned.

I'm also overwhelmed that people are giving money for his adoption.  Out of 6 adoptions, this is the first time we've asked for money in any way but under the circumstances, we've asked to speed up the adoption and that means we've sped up the timeline of when money is due.  So thanks to those who have chipped in (on line, in person and via check).  Truly blessed.

Regarding the balloon releasing, three of the highlights that came to surface through the experience are:

1) A memory.  When I was 12, we "fostered" a little boy named Mark.  He was 18 months when this happened.  One night while out shopping, he saw what he thought was a balloon and asked for it.  (It was a sign.) Then in the store, it was full of "sale" balloons ... but none for sale.  He again asked for balloons.  We looked everywhere to buy him one but couldn't find one so we told him we'd find one when we could.  We left the store and saw 4 balloons floating way, way far in the distance.  He again shouted, "Balloon!!"  And of course we couldn't get those either!  But now we were on a mission to get that baby a balloon. 

We got loaded into the car, and started onto the freeway (in Los Angeles ... so very, very busy) and RIGHT in front of us ... I know it's hard to believe ... but those balloons floated right down.  Right in front of our car.  Seriously!  The tail wrapped lightly around a sprinkler head.  Dad slowed the car, Mom leaned out the passenger door and was able to reach them from the car.  Brought them into the car. 

We were so freaked out I seriously expected there to be a note that read, "Dear Mark.  Here are your balloons.  God."  This baby played with these balloons for over a week.  They never went down.  He then had to go to his other family.   The next day, the balloons were completely deflated.  

Completely true story. 

I've wondered over the years about those balloons. 

So as we released our balloons yesterday, I wondered where ours would end up.  Maybe OURS would be an answer to a prayer too.  Our God is big like that. 

2)  People we've never met are showing us how much they love us and Manny all across the globe.  I'm amazed at the collection of people God has put in my path.  I think of the movie "It's a Wonderful Life" and the line about being rich because he had friends.  Well, if that's the mark of riches, then I am a Queen.  I have amazing, Godly, giving, generous, funny, talented, gifted friends.

3) During one balloon release, there was a storm approaching.  Just as the balloons were released, they noticed a rainbow in the middle of the storm.  For those who know me, I'm the "metaphor queen" so I found that particularly inspiring!

3)  Several people mentioned having to start over with one or more balloons as one would pop.  (Even one of ours did ... seems to happen when a 7 year old boy puts a plastic knife on it. LOL)  But it made me think ... that's the nature of balloons.  AND life.  In a moment, it's just gone.  And thus a fitting tribute on so many levels.

Thanks for those who have participated.  If you didn't get a chance to but would like to, there's still time.

Love to all,

Happy Birthday Manny (part 1)

His actual birthday is today, June 26. But we're going to have our party (cake, presents, etc.) tomorrow when family could come. So today we did a lot of just hanging out.

We took pictures. We played. We watched the ways people celebrated him with balloons.

We had 2 different sets of friends stop by with balloons. (Thanks Rich and Elsa, Bruce and Snooks.)

Today was a good day. It was a day some said wouldn't happen. I'm so blessed that it did.

Funding Manny's Adoption

I'm finally breaking down and adding a "Chip in" button. We have $3000 left to fund Manny's adoption. His is a domestic adoption and therefore a lot less costly, but there are still costs involved.

We have had lots of people say they wish they could help in "some way". Truth is, right now this is probably the way someone could help out. To have this "bill" out of the way would be a relief for us.

The URL is http://www.chipin.com/mywidgets/id/e232b4eaa8f2bb07


So if you feel led, that's great. Even $5 is very helpful. If you would like to pass this along, that's great too. If you can't donate, no guilt intended.

Thanks everyone!

You really want to know? (a peek inside my head)

Most people ask me, "How are you REALLY doing?"  And I have a myriad of answers.  None of them completely truthful as I hold many competing thoughts in my head at all times.  So proceed with caution as you read this.  It's raw.  It's confusing. 

Every time Manny stops breathing, it feels like a little piece of me dies. 

When he sleeps peacefully, it wakes me up.  Why?  Because I have had this conversation with God - if You are going to take him, would you please take him peacefully in his sleep so he doesn't have to suffer?  And while that is what I want, many times every night I wake up and check to see if he is still with me. 

When he cries, I have to go immediately to him.  With a "regular" baby, I would teach him that he needs to wait sometimes.  But with Manny ... I never want him to have to wait for anything.  (That's not possible with 6 kids, but it's my heart to do it.) 

When one of my other kids needs me, I'm so torn.  I want to immediately help them because I don't want them to every be resentful of him, ever.  And they are great, but I don't want to take advantage of their kindness and understanding.

When Manny wants to play even though it's waaaay late and he should be sleeping (like last night at 10:30), I play.  I find myself not being able to say, "Go to sleep"  because ... what if. 

I find myself growing very tired of telling the same story over and over and over again.  Like today it was to hospice nurses.  And yes, they need to know the whole story.  Yes, they need to know where I am emotionally.  But every time I tell it, I feel I am re-opening a very raw wound. 

I have come to dislike the balancing act I watch people try to do for me (professionals mostly).  If I'm not "sad enough" they think I don't have a grip on reality and they say things to make me face reality.  If I show any emotion they try to "fix" me and put me back together.  I HATE both of those reactions. 

I am tired of people telling me how wonderful I am for doing this.  I don't feel wonderful.  I feel inadequate. 

OK ... enough confessions for now.  Baby is crying and I have more important things to do.   

Project for those who love Manny

Balloons.  Manny LOVES balloons.  Maybe it's because all kids do.  Maybe because they're light and easy to hold.  Or maybe it's because they can float around with no assistance at all. 

Saturday is Manny's first birthday.  And unless God intervenes in a quick, speedy, miraculous way (which is what we're praying for), this could be his only one.  And it's a miracle that he'll make it to that birthday at all. 

I've been asking for ideas for ways people across the country and across the world can participate in Manny's birthday.  And I finally got an idea that I love!  I hope you love it too.  

Balloons.  They're cheap and easy.  (We even got 100 for $1.)  So anyone can participate if they would like to.  We're hoping a lot of you will participate ... and even send the idea to your friends so they can join in as well. 

So here's the project.  Get a balloon (or several) and find a cool way to express yourself with them.  Like you could take one, write a blessing, prayer or scripture on it and release it.  Or just say one as you release it.  You could dress up in balloons.  You could create balloon animals.  Be creative.  Be meaningful.  Whatever you choose.

But the key is ... if you do this, please take a picture or video of it and send it (or the link) to us.  If you say a prayer, blessing or wish for him, please write it and send it to us.   (goredan @ hotmail.com)  

We will put them all in a collection for him.  

Looking forward to seeing what you all come up with!   

 

Our last few hours

By now, most of you have probably heard about our scary episode tonight.  Manny was a little "off" today but not horrible.  About 6:00, he started doing this retching thing.  In the past, it's a few rounds of it and it's over.  During it, it's a bit scary.  And it's hard to describe so I even took a short video of it so I could just show the doctors what I'm talking about.  He sweats profusely.  He falls over exhausted.  Then, usually in about 5-10 minutes, it's all over. 

He did this for about 20 minutes and was having a hard time staying awake - even though it wasn't time for him to sleep.  It was only 6:30 and he had a good nap.  So I went through his bedtime routine to get his meds and treatments done, just in case he went to sleep for the night.

While I was doing that, Dan came home.  That's a pleasant surprise.  He's never home at this time of night.  He got off early to come home to go jogging with the kids. (He runs while the older 4 ride their scooters.)  But JUST as he was walking in, there was a lot of lighting.  So he stayed home.  Then he realized it was his night at the Church prayer center.  He was going to grab a bite and head out. 

But during all this, Manny kept retching.  It was getting worse.  So I got out his pulse ox machine to see how low his oxygen saturation was.  Sure enough, it was low and his heart rate skyrocketing.  So we put him on oxygen.  

He couldn't stop the retching.  He couldn't catch his breath.  Even with Oxygen on, his saturation level was only 87 for a loooong period of time.  And dipping from there. 

There's this moment in the middle where we discussed whether to call 911 and what they could do.  But eventually decided to just skip it.  Why?  Because he's DNR anyway.  Even if he coded, they would do nothing.  Nothing they could do.  So why call?  For 2 hours this lasted.

So we sat there.  Praying. 

I cried. 

Then I realized I didn't want to do this alone so I posted a quick status update on FB via my phone. 

I went and got each child, one at a time, to come pray for Manny.  Then I put them all to bed.  Meanwhile, Dan was holding him and praying for him.  (God soooo orchestrated that he was home tonight and not anywhere else!  I needed him here for sure and God knew that.) 

Nothing changed in the natural, but all of a sudden, he stopped retching/gagging.  His oxygen levels went to 97-98 and stayed put.  (sigh)

That was an hour ago as of the writing of this and he hasn't dipped below 96 since then.  PRAISE GOD! 

Terror.  It's the only word to describe how I was feeling. 

Now as I watch him sleep right beside me ... he looks so peaceful, so perfect. 

And I just want these moments to last forever. 

We're OUTTA Here!

Doc just left and said the labs look decent.  His CRP (an infection indicator) has gone down.  It should be less than .5 and his original one was almost 3.  But now it's around 2 so it's headed in the right direction.

His wound site looks amazing!  So happy with that. 

He tolerated his feeds well all night long so that's great too. 

The rash is continuing to spread all over his body.  I was concerned that it might be a drug allergy.  (If any of you have been following me a long time, you'll remember I have HORRIBLE drug allergy reactions to antibiotics so when his popped up, it came to mind.)  But the Doc who came by in the middle of the night didn't feel it was.  Phew!  She thought it was just part of the staph and cellulitis. 

And his skin is like paper now.  It's so hard to pick him up lest you leave a mark on him. 

They cultured his wound and found it to be a staph.  But during the night last night, it started growing something else as well.  So he has TWO infections.  The antibiotic he's on is clearly working but it's only in an IV form.  So she is having the lab test which oral meds kill BOTH of these infections.  She said that will take several hours.  So we'll likely go home late afternoon. 

Can't believe I'm typing those words! We're going home.  Waaay earlier than anyone expected.  At one point, it was so bad they were using the words "Life threatening".  For whatever reason, I just didn't *feel* like this was going to take him out.  I know all the prayers were going up and I had a peace that he would recover.  (But of course there were also moments of aaaaaaauuuuuggggghhhh!)

So on this Father's Day.  I have 3 Fathers I would like to pay tribute to.  My earthy Father, Ben, AKA "Papa" is a kind, loving, wise, generous man.  I still can go to him for anything and he is there for me. 

My husband and father of our 6 kids, Dan, AKA "Daddy" is a warm, loving, compassionate man.  He has been holding down the fort at home with the other 5 so I could be here with Manny.  He is a wonderful soulmate.

My heavenly Father, AKA "Abba" is a powerful, loving Healer who has granted me with all the blessings of my life - including my kids.  And He has seen fit to let us spend just a little more time with our newest blessing, Manny. 

I am most blessed. 

The gang's all here

It's amazing what a little visit can do for one's spirit.  Dan brought the kids to see Manny and me.  I love the heart of children so pure and so innocent. 

Manny just lit up when they came.  They are a lot of fun, high energy and very entertaining (unlike Mama).  So I think these hospital days are a little bit quiet for him.  They came with toys and movies and things for him to do.  They came asking lots of questions about the owie on his head, the owie on his tummy, the new owies on his face.  They're quite used to all the tubes ... he has almost as many tubes at home every night ... they only have the IV extra from what we usually have. 

Daddy picked him up and when it was time to set him down, he fussed.  So Daddy did what all good daddys do ... he held him some more. 

His feeds - 10 cc per hour for 3 hours.  Went well.  So they did the 30 cc per hour for 3 hours.  Went well.  No leaking!  So they will do his over night "usual" feed tonight.  Hoping there are no complications.   Oh, and he pooped.  I know that's not a typical thing to put in a blog ... but hey ... it was a thing some of you were praying about specifically so you need to know your prayers worked.  His tummy looks a lot less distended. 

His fever is still going up but is low grade still.  I don't think they'll let him go home with a fever. 

And finally, just a few minutes ago, I was looking at his wound to see how it's looking. And low and behold ... it's AMAZING!  It's beyond belief looking good.  I've posted the pictures for comparison.  The first one is what it looked like the moment we arrived at the hospital on Thursday.  The second one was taken about 5:30pm Saturday.  Yippee!  (And of course you all remember the picture in between where it got even worse so no need to post that.)

don't tell anyone ... but there's a slight chance we could go home TOMORROW if this keeps looking good and if he sleeps tonight!

I feel so blessed to be a part of a community of believers. 

Positive news ... I'll take it

He cried and cried.  He couldn't be comforted.  No position helped. No distractions helped. He was in pain.  And sadly, he can't tell us or show us where it hurts. 

For hours we did this.  I rocked him. I bounced him. I sang to him. I put him in the swing.  I turned on the music.  I walked around with him.  I eventually ran out of ideas and energy. 

This is so not like him.  He is the happiest, easiest baby in the world.  He hasn't fussed once over the gtube infection for example.  He still flirts and coos and talks with the nurses.  Until last night. 

Eventually, between the tylenol and the sheer exhaustion, he collapsed about 4am.  By 6am, the lights were on and the GI nurse practioner was probing him and asking me if it looked better.  I drug my tired self out of bed, pryed my eyes open and put on my glasses. 

And to my surprise .. it looked all crusty and scab like.  Definitely better than the peeling, oozing thing that's been happening.  So I guess it was worth being awakened after less than 2 hours of sleep. 

The only thing we can figure about the pain is this is a cycle thing.  His tube leaked and caused an infection.  They stopped the feeds.  So he's hungry.  And he's not pooping.  Gas builds up and makes his tummy distended and that puts pressure on the gtube site and the wound.  So it's a catch 22. 

BUT ... because it's looking better and because there was no absess at the site, they started him on feeds about 10:30 am.  His normal feed is 200 cc per half hour.  They have him on 5 per hour.  So a SLOOOW drip.  Just to see if he's leaking still.  If not, after 3 hours they'll increase and observe again.  If it is leaking, they'll take him to xray to see where the leak is and what can be done. 

They are starting to say if x,y and z all happen, we can go home eventually.  I love the sound of that.  When they start talking that way, it's GOOD news.

As I type, he's feeling peaceful again and drifted off to sleep, comforted by the drip into his tummy.  So that makes Mama all better too. 

You guys are all amazing prayer warriors.  We know you are holding us all up in prayer.

NOT for the faint of heart (pics and description); plus a rant

This blog is coming with a warning label.  It contains pictures that are not suitable if you have a weak stomach and graphic nature of the content.  But for those who would like to know about and see his wound now, here goes. 

You can see in the one picture with my hand just how tiny he is.  And just how big this main owie is. 

The bad news is ... it's spreading still.  The area around the gtube is spreading but he also has new sites of owie.  The other side of his tummy is starting red blotches.  He has 2 strange blistery looking things on his ear. 

The GI was here recently and he said this is cellulitis AND his gtube is leaking AND there is some other kind of staph.  They sent out a culture to see what it is since it's now ooozing and not just red.  The GI also wants to run an ultrasound on this gtube site to see if there are any absesses in or near the area.  He said that if that is clear, he wants to give Manny's tummy one more day of rest and then he can start back on feeds tomorrow.  But if it looks bad, they might have to do surgery. 

As I type this, he is laying comfortably sleeping next to me on the couch.  He looks so pitiful with all these tubes in him - including one in his head.  That's the IV line where his fluids and meds are going in.  He also has the worst stinch coming from the gtube site now.  And his little gown is needing to be changed often due to the skin peeling and the oozing blood. 

And sadly, he has the little shaky vest (that he LOVES normally) twice a day to prevent him from getting pneumonia.  Well, it goes around his tummy ... you guessed it, right across his gtube site.  We normally protect it with a folded diaper or a foam insert.  Well last night, he was crying about half way through and that's not like him.  We stopped it early and when I removed the diaper, it was blood soaked.  OUCH!

The Pastorial Care Volunteer came by a little bit ago. She was inspired by his story and she was a nice lady.  But somehow, I am getting very "tired" of sharing my story like this.  I mean on here, I get to choose what to say, when to say it, think about it for a while, edit it and then send it out.  When people corner me here at the hospital or in real life, I feel obligated to answer their stupid questions.  And they don't realize ... THEY might be asking it for the first time, but it's the 100th time today that I had to answer it.  If it were something minor like why his arm is in a cast ... then whatever.  But these are questions that always end up with me having to say he was diagnosed with a terminal brain disease.  And quite frankly, I don't like saying it.  I don't like thinking about it.  I don't like talking about it.  I don't want to deal with it.

(EDIT:  But these are the docs and nurses who are caring for him and I feel like I have to tell them.  But it makes me wonder ... can't I just put it in the chart?  Do these people write anything down?  Strangers I have learned - for the most part - how not to over share.  But this environment is tricky.)

I would like to sit here in my hospital room without having person after person after person come in and ask for his story.  I had to tell it to the different doctors on Rounds.  The GI.  Each nurse with each shift.  Each PCT at each shift.  Each respiratory at shift change.  The social worker.  etc.  etc.  I'm seriously thinking about writing it down in a nice, succinct way and putting it on the door.  READ IT before you come in.  If it doesn't answer all your questions, then feel free to ask.  But I don't want to explain the whole thing every time.

And the whole emotional thing is just too much so I start to tell the story in rote form.  I'm disassociated from it as if I'm ordering off a menu.  I just rattle off the facts, the details and that's it.  I don't have the energy to slop through the emotions of how we felt when he got diagnosed, or whatever. 

So far, I've been very kind.  I'm just worried that one of these days, some poor unsuspecting person will walk in and ask a simple question and I'm gonna lose it on them!  (Hope not, but it's a posibility.  And if I do, I promise I'll blog about it! LOL) 

OK ... rant over.  Thanks.

Thursday Overnight update

Overnight update:  The most awesome news is ... he had NO breathing issues.  He didn't choke once.  He didn't do ANY retching.  So his oxygen levels stayed high all night.  That is a huge praise report.  (Just ask Dan how awesome that is ... he was up with me for much of it on Wednesday night and the sheer terror that was.) 

His g tube site looks much, much worse.  So if your stomach couldn't handle the picture I posted yesteray, then you would never make one I posted today.  (So I won't post it.)  But suffice to say, it' now missing most of it's skin and is outright oozing blood.  And it's bigger. 

He got IV antibiotics last night - every 6 hours.  But they don't know what it is yet.  They ran a lot of tests and just told me they will need to run some more. 

Meanwhile, he cannot eat until they figure this out so he's been "fasting" for 24 hours.  Yes, he's getting fluids so he's not dehydrated.  BUT, he's hungry.  And he's getting weak quickly.  Hoping they figure this out soon so he can eat again. 

Then he now has a raw spot on his ear - who knows where that is from.  AND he has a patch of skin missing where the tape was holding his canula on last night.  He must have paper skin. 

The last issue (For now) is that he is not producing much urine.  Not sure why.  This is new.  They are concerned. 

Thanks for the prayers.

Post by Dan

Beth was up most of the night as his breathing/oxygen levels would tank dangerously low and the alarm on the machine would go off. I was praying intensely from 3:30 am to 6:00, and then decided to get a little rest, as his breathing seemed to get better.

This morning he suddenly had a dangerous rash/infection (cellulitis) on his tummy around the feeding tube, though none should havbeen there. This worried the doctor. He is now to St. Joe's hospital again for careful observation.

We signed on for this, on purpose, when we took Manny into our home. It is not a huge surprise but it is very painful and trying to go through. We have been pouring love and prayers over him continually along with you and a couple hundred other folks around the country....and by faith have been reminding God of His word for healing and miracles. Eph. 3:20 comes to mind: "Now to him who is able to do immeasurably more than all we ASK or imagine, ACCORDING TO HIS POWER THAT IS AT WORK WITHIN US."

God is always good and always knows what is best. He is always very close & intimate to the situation and not a God who is afar off. God's love and mercy are the greatest things in the universe that we can lean of with our whole being...knowing that He loves us with the same love that He loves His son Jesus the Christ. He loves little Manny with a perfect love. I may not understand or agree with how God directs the situation, but I know by faith that He does everything with perfection and perfect love. He remains our only Hope and true security for eternal life. There is no other.

Please pray for Manny, Beth, myself and the kids. Thank you for holding up our arms during these times. We are still praying for a big miracle. God gets final decision, but we will continue to "bother Him" and "cry out to him" continually as did the widow who kept on bothering the judge for a favorable ruling and justice. (Luke 18:1-8)

Love you guys!!
Dan

I Hope

Today we were given 3 HUGE bags of clothes for the baby.  Kathie thanks!  It's full of beautiful clothes ... so many of them.  (Bad blogger didn't take pics though.) 

They are mostly size 2T.  Right now the baby is wearing 9months and 12 months.  So at this rate, he'll be in them next year. 

But of course as I was sorting and folding and putting them away I had this nagging thought ... would he ever get to wear them?  Would he be around next year to wear them?  If the doctors are right, there's ZERO chance that will happen. 

But of course I know they don't get to measure the length of his days. And it's the only hope I have. 

I'd love to say that I feel fully confident that he'll get to wear them.  But I'm not.  I only have HOPE.

It's amazing how something so simple can bring such deep, profound thoughts.  It's just a bag of clothes, right?  Not to me.  To me it's a bag of hope. 

I HOPE he'll get to wear the Elmo pants and the cute swim trunks and the Gators t-shirt.  I HOPE he'll wear the little coat next winter ... maybe even in Colorado visiting Aunt Shari and Uncle Pat. 

So in the meantime, I put them in a tub marked "Manny, age 2" and put them in a stack in the garage where I keep all the kids' clothes that are big.  And I hope that next Summer I'll be pulling them down to put on him. 

So thanks, Kathie, for the bag of hope.  And thanks to all of you for hoping along with us.

Busch Gardens fun

We live in Tampa so Busch Gardens is right here.  We've always had season passes and for some reason, we've let it slip the past couple of years.  Now that we're on Summer vacation, the kids were begging me to take them. 

So I did. 

Yes.  Me.  Alone.  With 6 kids. 

The trickiest part was the oxygen tank.  This thing is massive.  I bought one of those bags that you slip it in and you can affix it to a stroller or wheelchair.  Great! 

Problem is ... it weighs a lot more than he does so it's not balanced and the thing kept trying to fall over backwards all day.  It was the first time I'd used it so I didn't know until it was too late so we made the best of it.  But I need to rethink this for sure. 

Baby couldn't ride any rides of course but he loved the sights and sounds and just hangin' out. 

It was a great day!

Coughing again

Cough.  Gag.  Sputter. Choke.  Repeat.

Oxygen saturation levels in the low 80's (WITH oxygen on) during these episodes. 

And of course they all happen in the middle of the night.  That's been our past few days.  It's concerning because the doctor said that kids with leukodystrophy can have a slow, steady decline OR they can get one cold and not be able to recover.  So every cough makes my heart skip a beat.

Saturday night was quite rough.  Last night started out the same way so I posted a prayer request on F*cebook and immediately, he stopped choking and coughing and started sleeping.  He slept pretty peacefully from 11:30pm until almost 8:30 am with only a few little stirs and coughs.  Man do I love prayer warriors and a loving Father. 

Today we went to the Doc and were relieved to hear the crud is not developed into pneumonia.  It's all upper congestion only.  Whew!  That's awesome news. 

And honestly, everything that was done at the hospital for him, I can do for him.   They purposely sent me home with all the equipment to be able to do all this at home.  Breathing treatments, shaking vest, suction machine, oxygen, pulse oximeter.  Everything except IV meds and fluids.  The gave me all this to prevent having to go back to the hospital ... where he's more likely to pick up a secondary infection. 

I have to say I'm exhausted though. Sure I got some sleep last night, but I'm exhausted.  It's like I'm afraid to exhale. 

What does that mean?  I have a peace that passes understanding, which means peace beyond what I should have.  I really do.  But it doesn't mean that I feel peace 100% of the time.  I find myself (like when he's sick and choking) holding all the tension in my body.  I don't even realize it for a little while but then realize I have a horrible headache or tension neck ache.  It can be just 5 minutes of this before I feel it physically in my body. 

And the antidote is always the same.  Stop the worry.  Claim peace and a sound mind.  Rebuke fears.  And I'd love to say that works completely every time ... but the truth is ... it doesn't.    Maybe there are people who can sit and watch their kid choke, not able to breathe and feel no fear, only peace.  But I am not there yet. 

So that's why I'm so completely thankful for you.  All of you who are reading this, passing along Manny's prayer request, making comments, offering prayers and support.  YOU are helping hold up my very tired arms. 

I've never looked back and thought, "What have we done?"  I've never once regretted the decision to bring Manny into our home, our family, our lives, our hearts.  Never once have I considered any alternatives for his care.  He is my son.  And whether we get to love him for months or for a lifetime, loving Manny will always be one of the best decisions of our life. 

10 months ago ... (Not about Manny)

... 5 very excited children started school for the first time.  Up until this point we had only homeschooled.  This year, we decided to do something different.  There are a variety of reasons why.

We knew there would be challenges.

Jacob (Tall one on the far right) was supposed to get an IEP.  He was assigned a case manager and a special ed teacher prior to the school year starting.  He needs some modifications to his school work ... and with a few adjustments, he can do everything.  His challenges we knew would come from social adjustments.  And sure enough, we had some difficulties in that area - including some major bullying.  But we got that handled and the rest of the year went smoothly.  I CAN report, however, that as of today, he still has NO IEP.  (groan).  He'll be headed to 6th grade this next year.  He is very proud of the friends he made.

Kaley - in the pink shirt.  Finished 4th grade with the most amazing teacher EVAH!  We knew there would be some challenging academic subjects ... and they were.  But she has "intelligences" that don't show up in academic arenas.  This little girl has some amazing gifts and she is going to be doing great in life - whatever she chooses to do!  She says when she grows up, she wants to do "Nothing ... just like Mama"! LOL  We figured her challenges would be in the area of health.  And while she DID miss quite a few school days due to her special need, we were thrilled at how many days she was actually able to make.  She's headed to 5th grade.

Sam - in the middle, just finished 2nd grade.  He pretty much held his own this year.  He loved going to school.  He easily made friends.  He was popular with students and teachers.  His teacher even made the comment about how Sam could light up his day with his smile.  He was rarely in trouble (even very few warnings) and loved every minute of school.  He's a math whiz.  He's headed to 3rd grade.

Luke - in the blue shirt was our 1st grader.  He has some challenges emotionally and physically but did a lot better than we thought he would do as well.  We knew academically he would do great but it's the other areas that can swallow him up sometimes.  I gave his teacher one of his secret motivations ... CANDY ... and kept her well stocked.  And sure enough, he worked hard for her.  He couldn't read at all at the beginning of the school year and now he is a reader!  Still doesn't like it but can do it.  And he's a math whiz too!  Headed to second grade.

Zoe - far left finished preK and is headed to Kindergarten.  We put her in mostly for speech.  While we can understand everything she says, most people cannot.  We thought it would be beneficial to her to have to work a little harder to be understood.  But ... it didn't work out that way.  Her first school actually REWARDED her for not talking all day!  Seriously.  So she got a new school.  Wished we would have found the second school sooner as they were great with her.  Teachers were kind and gentle and worked with her special need.  She didn't learn much academically during the first school either so she is a bit behind headed into Kindergarten... but we'll catch her up during the summer.

So all in all, we survived the school year.  I would give this experiment a B-

Most Moms I hear are dreading having the kids home for the summer.  I am actually looking forward to it!  And I know Manny is thrilled to have them here.  They play with him in a way that is way more fun than I can do and while they do that, I can get some housework done.  (Who am I kidding?  I use the time to write blogs!)

The other side of the story

Lately there have been a lot of very happy posts chalk full of good news.  I love posting those. 

Yes, he's doing great.  Yes, he's getting all these good doctor reports.  So isn't that enough?  Shouldn't I just live in THAT?  Yes.  And I do.  Most of the time. 

But I would be remiss if I didn't tell some of the "other side" of the story as well. 

While I was in the hospital with Manny, many of my friends posted a status of "Pray for Chrissie, Ben and Manny."  Three weeks later and Manny is the only one still alive.  Chrissie's parents and Ben's parents had to say good bye to their precious little ones.  Chrissie was 4.  Ben was not quite 2.  Manny is almost 1. 

Let's just say that is NOT a good list to be on.

They are Christian families.  They asked for prayer warriors to storm heaven on behalf of their children.  They held high hope and lots of faith that God would intervene and heal their little bodies and let them stay on Earth.  They had no doubt that God CAN and DOES heal. 

And yet He called them both home. 

So I have to admit, I have some doubt.  Oh no.  There's NO doubt that God is the amazing, mighty Healer who is mighty to save.  I have NO doubt that God can and still does healings today.  I also know that sometimes God's healing is done in the ultimate sense.

I have not lost hope.  I have not lost faith.  But I know that God is sovereign. 

There are moments where he can't catch his breath and I wonder if this is "it".  There are times (daily) where he is choking and I'm praying and crying and commanding him to breathe.  I find myself watching him sleep just to see if he is still breathing. 

I'm still a bit protective about Manny's current state (like what he can and cannot do physically).  But when I have showed video of him to a few friends, they were in SHOCK about how little he can actually do physically.  One of my friends said she actually felt guilty after seeing this video.  Why? Because she complains about how much energy her kids have and how they destroy the house by running around.  She said she'd stop complaining about that.  And instead be thankful her girls can move.  (I don't want her to feel guilty, of course.) 

When I see him, I just see Manny.  I see the sparkle in his eyes.  Love hearing his emerging laugh.  Delight in knowing he is happy.  Blown away that I get to be his Mama. 

And I just want to be able to do that for a long, long time. 

Pulmonologist gives the all clear

Manny went to the Pulmonologist today.  We got this team of doctors when we were in the Hospital and we "lucked out" as they are great.  They know what they're doing but they also have good bedside manner. 

This is important as the condition they diagnosed Manny with often involves respiratory distress. They are experienced in seeing and preventing decline as long as possible.

So today, they wanted to see how Manny was on some of the basic allergens.  Trees, grasses, molds, mites, dogs, cats, roaches, milk, eggs, wheat, etc.  And I figured he would fail miserably.     But the shocking news was ... he wasn't allergic to ANYTHING.  This boy apparently has a pretty good immune system!  Praise God. 

Then he listened to his lungs and was happily surprised that he sounds completely clear!  We will have a follow up in 2 months. 

So we are thrilled to be continuing the "good news" reports!!

Baby healthy, Luke has 5th disease

Not much to report thankfully.  Luke and Manny went to the doctor today.  She wants to see Manny every 1-2 weeks just so we can stay on top of monitoring any problems early.  He looks GREAT! 

Luke, on the other hand, has a head to toe rash.  It started as a small (quarter sized) patch on his cheek.  By today, it's all over his face, down both arms, headed down his chest and on both legs.  I love Go*gle because I was able to self-diagnose it via the photos.  Fifth disease.  The good news is that it is very mild and has very few complications ... even to the baby.  Phew!  AND by the time the rash shows up, you are no longer contagious.  We got the fever and itching under control so he will be able to go back to school tomorrow.  (2 1/2 days to go).

Meanwhile, the doc is helping me work on getting equipment for Manny. Like handicap parking sticker (we got one today!! Soooo nice and handy.)  Soon he is going to outgrow his infant car seat and we are going to need to keep him rear facing.  But he has absolutely NO head control so we are going to need some kind of adaptation.  Most car seats have side control available now but nothing to prevent his head from slumping forward.  She's also working on some kind of bedding alternatives so I don't have to wake up and rotate him every 2 hours or so. 

We then went to the wheelchair store.  For now, I'm perfectly happy with him in a stroller not a wheelchair.  But I needed an adaptation to be able to carry his oxygen tank.  That will be a LOT easier than trying to push the stroller while pulling the oxygen tank.

So we're crankin' along.  Thankful that Manny is holding his own these days.  Learning to laugh hard. 

Out of Surgery

Thanks for all the prayers.  This went better than anyone expected ... even the doctors were thrilled! 

We took the other 5 kids over to Grandma's last night at bedtime so she could get them up and over to school this morning.  Dan and I got up at 5 and left at 5:15.  Got to the hospital at 6 and had the procedure a 7:45.  By 10am we were in our kitchen cooking breakfast.  Now that is fast!! 

The anesthesiologist was of course a bit concerned due to his condition and we had some conversations about our wishes if something were to go wrong.  (Which is always a horrible conversation!)  And I told him that Manny is very difficult to find a vein on.  (I learned this the hard way when we were in the hospital last.) 

We went to the waiting room and it was only about 20 minutes before he was in recovery.  Before we knew it I was holding him and he was waking up and getting some pedialite in his new button.  (Very cute). 

The anesthesiologist even came by later and reported how well he did and that I was right about the IV.  He said he NEVER has troubles and he did with Manny.  And I could tell ... he had bandages on both hands and both feet.  Poor baby ... and of course he was awake for all of that!

We are so blessed to have so many wonderful people praying for this special little guy.  He continues to worm his way into many people's hearts.  People can't help but fall in love with him and his gentle, sweet spirit. 

Sorry about the picture quality ... I was distracted and didn't get very many pics.

Surgery tomorrow ... and a haircut

Manny has some minor surgery tomorrow.  He has a gtube (feeding tube) they placed on March 17 (before we got him) and it's time to switch it out to a "button".  The initial tube was inserted via an incision in his abdomen and they will remove it by going down his throat.  Should be a quick and relatively uncomplicated surgery.  They will then insert a new type into the hole where the tube was sticking out. 

This is important to do because if something happened to his current tube, it would be emergency surgery and they have about 4 hours max to get a new one in.  But once this is switched out, we can replace future ones at home.  So it's actually a bit safer. 

These procedures are typically done as an outpatient procedure.  And they expect that he can handle it well too.  He did well with anesthesia before so he should be fine again.  But if they have any doubts (due to his current diagnosis/symptoms/condition), they will keep him overnight.  They THINK we'll get to go home though. 

His procedure is scheduled to start at 7:30 am EST.  So if you're the praying type, throw one up for sweet Manny. 

On a completely different note, Zoe (who just turned 5) decided she wanted her hair cut to go along with her new earrings.  She wanted a very short bob and I couldn't handle that as I want to be able to put it up in a pony tail.  (That girl can sweat!)  So we compromised.  It was such an easy cut that I could have easily done it but she wanted the whole experience. 

So I found this little shop and wouldn't you know it, once we got inside, it was run by Chinese ladies.   They thought she was adorable and she sat like a little statue.  Everyone in the salon got a kick out of her. 

And ever since her haircut, she can't stop playing with her new look.  Just in time for her last day of school tomorrow.  And pictures over the weekend. 

Aren't kids grand?

Q. About Alternative Medicine

I have had the question come up quite often about if we would consider alternative therapy. 

Most of you know me quite well but many do not so I'll share some background.  I am Christian and grew up in a wonderful Christian home.  We were blessed to be in a church that believed in miracles and I eye-witnessed many.  We also grew up believing in eating healthily and doing alternative type treatments.  It's all part of the process. 

With Manny ... we've brought in all the prayer warriors to ask for Divine healing.  We're trying to make sure he gets proper nutrition.  And today, we started working on some "alternative" type treatments.  That would include acidopholus, amino acids, enzymes, etc.  We contacted a Doctor in Michigan who has helped us many times in the past and he's sending it out tomorrow.

So yes, we're exploring every option we know. 

Thanks for all the emails, comments, calls, cards, gifts and prayers!  We are so blessed. 

Not much to say

I haven't written for the past couple of days.  Mostly because we've been out busy living life.  You know, the "regular" stuff.  Going to the park, swimming in the pool, cookout, birthday party.  And it felt so good to just be semi normal for a few days. 

Of course the new "normal" comes with an oygen tank and other wires, equipment, medicines and other such things. 

Manny has been having some good and bad days.  When we were in the hospital, he lost some of his skills.  We weren't sure if it was a sign of decline or just having not been held and worked with as much.  I'm happy to report that he's almost back to the skills he had pre-hospital.  Whew! 

So it seems it was just from the lack of touch and such.  It is already quite difficult to hold him due to the hypotonia.  Then throw in a dozen wires.  And an arm that has a splint from wrist to armpit.  And an arm that is in utter pain from the infiltration.  And you can't hold your baby for a while. 

He also does a lot of retching.  It's one of the scariest things to see.  There is absolutely NOTHING I can do when he starts these but pray.  I get his head in the right position.  I put oxygen on him (for when he's done so it's easier to recover).  But it's the most helpless feeling ever.  We'll be talking to the GI soon to see if he can do anything about it. 

Manny is also crying a lot more than he used to.  For days after the hospital he was crying basically all the time with no real moments of his happy, peaceful self.  But ... the past few days, he's doing more of the happy stuff and a lot less of the crying.  (Even at night!) 

Today he had an evaluation with Early Steps.  The very interesting part is that he passed most of the sections!  Way to go baby!!  We knew he would fail "adaptive" since he is completely NPO (Nothing Per Oral) and that's all about feeding.  But the only other thing he failed was motor skills.  So he qualifies ONLY for Physical Therapy.  (Which is all I wanted for him anyway.)  We'll have a goal for him to be able to sit independently for 5 minutes within the next 6 months.  They will also help show me techniques for range of motion and things to avoid contractures. 

So all in all, he's holding his own in most areas. We're extremely blessed.  I can't believe that I get to be the "luckiest" woman in the world to be chosen to be his Mama.  Every day (even the hard ones) is a gift. 

Hug your children and tell them how much you love them while you have the chance!