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!