Mar 31, 2011

He makes me laugh

Daily, Manny does something that makes me crack up.  Makes me laugh.  Amazes me. 

Annie? Is that you?  Anyone else feel like breaking into "Tomorrow, Tomorrow..."?  Or maybe it's Ronald McDonald

Yesterday he was singing his ABC's.  OK, not exactly all of them but he was trying.  He got maybe 1/4 of them as he was singing along to his alphabet bus. 

Earlier in the day he had cars on his wheelchair.  I asked him to count them and he (with my help on his hand) pointed to one at a time.  He counted them.  5 of them.  It sounds like "On, oo, eee, or, iiiiiii"  But we know it's 1,2,3,4,5 because he says it the same way every time. Without fail.  We were at the blood lab (for Jacob) and all the people around were cheering for him.  (He has that kind of effect on people.) 

He is learning 5-10 new words daily it seems.  And I'm not talking about just repeating a word (I don't count those), I'm talking about the ability to recall it on his own and use it correctly.  Like I was looking at a magazine (one he's never seen) at the doctor's office and pointing at pictures.  I would say, "What is that?" and point and he would say what it is.  I was in SHOCK at how much he knew. 

Some samples:  "edent" (elephant), "duck", "bird", "car", "truck", "choochoo", "moooo" (ok, it was a horse but close), "waa-waa" (baby), "night night" (baby was sleeping), "dog", "cat", "rrrrrrrah" (tiger), "ball", "beach", "num-num" (food), "Book", "eyes", "Honk-honk" (nose)

That's just a few he named from the magazine. 

I'm very impressed at his ability to combine words into quite complicated sentences.  Like, "Hi Daddy, how you?" He speaks in phrases about as often as he says single or double word sentences. 

He's 21 months, remember?
He only heard Spanish for the first 9 months of his life.
He has major developmental delays ("global").

And of course he is starting to act like an almost 2 year old.  (i.e. he is trying to assert is independence).  So a favorite thing to say is "No way".  And of course he still likes to say, "All done?" and "Almost?" His persistance is truly amazing! 

Medically?  Things are pretty stable. We've been out of the hospital for 1 month tomorrow. Jtube is staying in place.  He's started doing some more retching and saying owie again but nothing can point our fingers to.  The Physical Therapist and Primary want him seen by a Orthopedist for the hips and spine.  They'd like to start doing some weight bearing exercises but can't do it until he gets some support for those.  Also, we're making progress on the muscle biopsy and I have an appointment with the surgeon next week to do the preop and schedule it. 

So ... all in all, things are looking up! God is good.  He's an amazing miracle-worker ... and I get to witness that first hand daily.  That's why every now and then I let you all in on the miracle of Manny. 

My view ... how would you like THAT staring up at you from your lap? (sigh)

Mar 27, 2011

All in a year's work

I know the phrase is usually "All in a day's work" but I thought I'd show what a year can do. 

The first pic anyone saw of Manny

March 26, 2010 a sweet, precious, perfect little boy was placed in our arms.  At the time, we didn't know if he was going to get to stay forever or not.  I remember feeling overwhelmed with emotions ... more than with any of the placements of the other 5 kids.  The emotions were quite mixed too.  But excited was the most frequent one.

If you've been following along for a while, you've read the miracles that have occurred over the past year.  But here are a few of the highlights.

At 9 months, he couldn't move anything but his eyes.  Now he is sitting independently, moving most of his body, talking. 

One year ago, heade home with us

Winning smile

Hospital visit when we got his diagnosis/prognosis

Happy boy!
first time sitting in a grocery cart
first birthday

Cellulitis and septic

adoption day
serial casting

Yet another hospital visit
Thank You, Lord for the miracle of having a year with Manny.  YOU get all the credit. 

Mar 22, 2011

What's your legacy?

I Do have other children besides Manny.  Most of you know that, some might not.  Well this blog is about some of them. 

Jacob, our oldest, is 12.  We adopted him when he was 19 months old (so basically Manny's age).  And he came to us with several special needs.  He had been drug addicted at birth and that was complicated by being in a less than ideal foster home.  And of course, there were very low expectations for him by those in the foster system.  He came to our home and started to blossom.  I could tell you stories that make you bawl about those early days. 

Eventually "love" had conquered basically all it could.  And what was left was a little boy who was high functioning autistic/asperger's, some hydrocephalus (though he is non-shunted) and very few other medical conditions. 

Until last Summer. 

He'd been sleeping more than normal and tired more than normal.  Didn't think much of it as he is growing very fast and what almost teenage boy doesn't do that?

12 year old check up in July.  Proteinuria very, very high.  Normal is under 30.  His was over 3000.  By the time the docs had run all the tests to rule in/rule out everything, his number was over 4000.  And his creatinine levels were 2.4 (3 is dialysis).  FSGS was confirmed upon biopsy.  And due to his age, gender and race, his prognosis is not good. The 5 year survival rate is very, very low. 

But this diagnosis came only 6 weeks after Manny's "terminal" diagnosis.  So we were already fighting for the life of one kid, why not two?  Clearly God has plans for both of these little guys.  God is the healer for all people. 

Due to his extreme fatigue (and other factors) we decided to keep Jacob home this year and home school him.  That has been the right decision for sure.  Yes, I can do a lot better on his math (subject he hates) but you should see the reading list he's finished.  I can't keep this kid in books ... and he has a "photographic" memory so it's all in there too.  (Non fiction is his thing.  I dare you to challenge him on a fact in a book he's read.) 

I work for Dale Carnegie Training as a Master Trainer (meaning I help coach new instructors and mentor them).  We teach a program called Generation Next which is our youth program, ages 12-18.  I'd given Jacob the book How to Win Friends and Influence People (written by Dale Carnegie) and he loved it.  He is very interested in learning how to make friends.  We are always working on his social skills and he is aware he is "awkward" in those social interactions.  I was going to evaluate, not teach this class, so we figured this would be the perfect opportunity to put him in this class. 

He went for 8 weeks and won some awards along the way.  He was by far the youngest in the class but it didn't stop him.  For Graduation, all the families come and celebrate their achievements.  So all 8 of us were there.  When it was time for the other kids to receive praise from their family, only one person would come up typically.  But we all went up (even Manny in his wheelchair).  Dan said something, I said something.  Then Kaley (11) said, "You're a good big brother." and the crowd said, "aaaawwww".  I asked if anyone else had anything and they said no. 

But as we turned to walk to our seats, Zoe (5) was still standing there.  She had something to say.  For those who don't know, Zoe has cleft lip and palate (repaired) and an associated syndrome Hemifacial Microsomia.  Articulation is difficult for her.  We understand her, but this makes her shy around strangers.  So I was shocked she wanted to talk to this crowd of 50 people or so.  She said, "Jacob, you are so smart. You know like everything in the whole world." or something like that.  And I was in tears.

At the graduation, the classmembers vote on some awards.  One is the "Human Relations Champion" and Jacob won!  He got the Golden Book Cube and an Ipod Shuffle.  He was over the moon!! 

Recently, Jacob asked me what happens if he dies from his kidney disease.  (He's in the room when the doctors talk.  He can read.) And while we don't think this will be the way this plays out ... our faith is that God can and will heal Jacob completely... we know that sometimes God Says "No" (I wrote a blog about that recently).  And so we speak the truth to Jacob. 

I tell him how I believe in a loving, merciful Healer God.  I tell Him that He loves Jacob completely.  And that kidneys are nothing for God to heal.  He made the original ones, there's no reason He can fix these or give him new ones.  I tell him stories of healings/miracles we've seen.  I read scriptures of miracles in the Bible.  etc etc etc. 

And he still asks again, "What if I die?"  So we talk about that.  With complete truth.  I tell him that only God knows the number of our days.  That HE is in charge of when we die.  And that truth brings me peace.  I know that Jacob loves God.  I know that Jacob is in the palm of God's hands ... either way ... live or die.  I tell him that we pray Jacob will be with us another 100 years.  But ... when God says it's time to go, it will be fine.  And we talk about that for a while. 

He walks away.  Hours later, Jacob comes back and says he wants to write a book.  He wants to write down his legacy.  He says he has ideas he wants to share with the world.  What it's like to be autistic and what it's like to have kidney disease. 

I can't wait to read it.  I have a feeling it will be an interesting read. 

What about you?  What's your legacy? 

Mar 18, 2011

Manny Withdrawls?

For the record, no I am not Pro or Against the Celtics.  I am, however, grateful for such a cute outfit and a sleeping baby!

Got to wondering how many of you might be having Manny withdrawls ... so I thought I'd better catch up on the latest. 

Nothing much has been happening.  That's the great, awesome, amazing news.  He's stable.  That's HUGE. 

Since coming home from the hospital on March 1, he's been mostly fine.  He is starting to show some early signs of something "off" with the jtube.  But nothing emergent yet.  And nothing that can be done at this point either. 

Like one thing is  ... he is starting to cry a lot more again at night.  He says, "owie" and "ouch" but can't point to or indicate where.  By process of elimination, we figure it has to be tummy related.  In addition, he's started with that "wet" cough again.  That usually proceeds milk being in the wrong place.  BUT ... no actual milk in the wrong place that we have found yet. 

Also, if the jtube does migrate out of place, we have our game plan so this won't be a nightmare like last time! 

I know I mentioned about him seeing the Pediatric Metabolic Geneticist and how she wanted the muscle biopsy done.  So on Monday we saw our regular Neurologist.  He was again blown away by Manny.  He is Hispanic and was talking to him in only Spanish.  All cutsie words and calling him "Manuelito" and other endearing terms.  Soooo sweet.  He says he'll talk to the other Neurologist (who specializes in Muscular Dystrophy) and they will determine about the muscle biopsy.  (Still haven't heard from them.) 

Today the kids had the day off school.  It was 85 so we decided to hit the beach.  Dan was working so it was the 6 kids and me off to play in the sand and sun and water.  Here are some pictures for your enjoyment of Manny's first time playing in the water and sand.  He LOVED the water.  The sand, not so much.  He'll get used to it ... we live in Florida and he'll have to. 

Mar 16, 2011

The first time I held him

I had high hopes.  But reality doesn't always match. 

I intended to write out the events that led us to Manny .... and all that happened one year ago.  First saw him March 11.  By March 26 he lived with us.  And I was going to write about what transpired during those 15 days. 

But as many times as I've sat to write it, I just can't do it.  Last year we couldn't tell about what was going on because he was in the foster system and they have specific rules about what can/not be shared.  So we were very careful.  And now that I have the freedom to tell the story, I just can't bring myself to do it.


I realized just how private this journey was.  Intense.  Miraculous.  Full of ups and downs.  In depth soul searching. 

We weren't heroes for adopting him as some see us. 
We weren't the poster family for faith.
We weren't the "we can handle all that comes our way" kind of people.

We are flawed human beings.
We had doubts.
We still question if we can handle all that comes our way. 

Maybe someday I'll be able to share the story of his journey into our lives.  I'd love to have it captured somewhere.  I'd love people to see all that God did to move our hearts towards him. 

And here's a peek about one year ago today.  I held him for the first time.  I'd been praying, just the day before that there would be a way for me to do that but I knew it would not be possible since that's not the way the foster system works usually.  But for the other kids, we held them.  I'd held some very cute kids but knew they weren't "mine".  And I knew the ones that were.  I prayed for the luxury of doing that with him. 

I told no one of this prayer request, not even Dan.  And wouldn't you know it?  The opportunity was offered to me.  Megan (the social worker) asked if coming and holding him would help us decide.  I cried knowing how God had worked that out. 

I got in the car, the whole time wondering what the heck I was doing.  I prayed the whole way there.  I met Megan for the first time.  (Such a Godly, loving woman!)  And I went into his hospital room.  He'd contracted a virus while there and so we all had to put on gloves, gowns, etc just to walk into the room.  He was asleep when I got there and didn't want to disturb him.  But I also knew that this would be my only chance to hold him.  I only had a little while before I had to get back and get the kids from school. 

I picked him up.  And it was extremely, EXTREMELY hard to hold him.  Have you ever held a bag of ice that melted?  Think about a 16 pound bag of water like that.  His arms, legs and head all went in different directions.  I remember his head was wet with sweat.  He had a slight fever.  And there was an odd smell on him.  And of course all the wires everywhere. 

I sat in a rocking chair.  All the people left me alone so I could just "be" with him.  And we sat and rocked.  He slept.  And I KNEW he could be mine.  My heart knew it.  But I also had the logic part kicking in saying how hard this would be to take a baby with such HUGE "unknowns". 

Even while sleeping I could feel how sweet and calm and kind his spirit was.  I prayed for him, for his perfect family.  I prayed for his healing. 

Eventually he woke up and we talked a bit.  I'd never seen a baby this hypotonic ("floppy").  Megan came in and we chatted in the darkened room.  We shared.  We cried.  I told her we would have to pray about it. 

I remember leaving that room wondering if I'd ever see him again.  The thought of taking him as overwhelming.  The thought of not taking him was devastating. 

I drove home and cried the whole way.  I drafted an email in my head of what I'd tell Megan.  I still have the exact email but the gist was this: 

I have doubts.  His "real" mother shouldn't have doubts.  Therefore I must not be his real mother.  I wanted to step to the side and allow her to come forward.  I didn't want to be an OK family for him when the perfect family might be out there for him.  I didn't want to stand in the way between him and his real mother. 

And yes, the irony hit me, even while drafting it in my head.  That's how King Solomon in the Bible knew who the "real" mother was ... the one willing to let the baby go to let him have life. 

When I got home and put that email together, I bawled my eyes out.  I felt like I was letting him down.  It was horrible.  I let him slip through my fingers.  But I knew that if the right family came forward, it would be worth it. 

...  So as you can see .... the journey after Manny came home has been full of ups and downs.  But the road TO him was too!  And I can't believe how much emotion is still there, still so raw, a year later. 

And in this year, I've learned a lot.  I shudder to think how many times I said, "No" to adopting Manny.  And how many times God gently pushed with "Yes".  I am so thankful He did.  One of the biggest blessings of my life is sitting next to me playing with Legos as I type this.  He's singing. 

And now he's asking me to blow bubbles.  Blogging will have to wait, I have a play date with a miracle. 

Mar 10, 2011

A Pet Peeve - praise and prayer

You might be wondering why I write this blog ... or maybe not.  But way back at the beginning, I struggled with how much to share.  Afterall, I have family and friends who live all over the world.  I wanted to be able to tell the story ... once ... and not have to repeat over and over.  BUT I also didn't want to overshare or share things about the kids that wasn't mine to share.

So truthfully, I struggled with how much to say.

I noticed that when I would put a prayer request, the prayer was answered almost immediately.  So I began to share more and more.  Still not sure it's the 'right' thing to do, but it worked for me.

I also didn't want to do like one woman I know who put every single detail of her life on it.  It was painful to read so I stopped reading.  Or the woman who put every gruesome detail of her daughter's struggle to live down to her last breath and the tortures she endured during those last days/hours.  (That lady had a HUGE following!)  Or the woman who shares details of her kids' struggles that are so personal that I fear when those kids are grown, they will be embarrassed to know what is out there about them.

I am not doing it for fame or anything, just an outlet for sharing what is going on and asking for prayers.  And also to update when there are miracles we know about.

While writing this there are ways to track how many people are coming by.  And I've looked at it a few times.  Interestingly, when it's "bad" news, I have tons of visitors.  When it's good news, no one reads.  When it's sensational, people are all over it.

I think it's human nature.

So with that background ... here's my pet peeve.

Some people ONLY put out the bad news.  They never claim the good stuff.

There was a lady whose loved one was in the hospital and begged for prayers over and over.  And then next thing I know, I was asking for an update and the lady had been home for a week.  NOT A PEEP.

Something changed in the circumstances and yet nothing was said.

I personally believe that we should ask for PRAISE even more than we ask for PRAYERS.  (Not a church doctrine or anything, just a personal belief.)

Like yesterday I was asking God to help me find this piece of paper.  He did.  I spent MORE time praising Him for finding it than I did asking Him to help me find it.

I think some people don't because like in that case,  it might not have been God who helped me find the paper.  Maybe I found it all on my own.  But my thought is this ... what if He DID help me find it and I didn't praise Him or thank Him for it??  How ungrateful.

Or the close parking spot I got.  Or getting released from the hospital.  Or any number of requests.

I am certainly not saying I am a good example of this.  In fact, I need to spend WAY more time leaning on the side of praise and thankfulness than I already do.

My point?  If you ask God for something ... did you thank Him for it?  If you did this publicly, did you let the prayer warriors know it's time to shift from prayer to praise and thanksgiving?  

Or are you like most people ... that when we get what we want, we move on to the next thing we must have?

Therefore, this blog will continue to be about updates of the family.  There will always be prayer requests on here.  But I will also make a concerted effort to put more Good News on here.  Uplifting things.  Things to Praise about.

What about you?  You willing to make the shift?

Mar 3, 2011

One Year Ago Today

Earliest picture we have of him ... one year ago today
One year ago today, a baby was taken to the Firestation.  His birthmother had heard about the "Safe Haven" program where you can take a baby to a safe spot and leave them there with no troubles.  What she didn't know was, this only applies to the first 3 days in Florida and this baby was 8 months old. 

"R" was young and had no real support system here in the States.  He was getting sick often and this time, he was ill with pneumonia.  I cannot begin to imagine what was going through her heart and mind.  What things must have driven her to this point. 

This baby was well loved.  That was clear.  He was alert and engaged, clearly attached.  He also had signs that he was not held much, treated almost like he would be "broken" if held. 

So R and the baby rode in an ambulance to Arnold Palmer hospital in Orlando.  They spent the first night together.  The next day, the attorney and social worker and translator did all the paperwork to make sure the baby was legally freed for adoption. 

Can you imagine what R was feeling?  I cannot. 

They got all the info they could from this very, very young lady.  And then off she went. 

And this baby was in the hospital alone.  For the next almost month, this "abandoned" baby endured horrible tests, surgeries and illnesses ... all without a mother. 

We have very little of what his first 8 months were like after his birth.  Not one picture.  No signs of doctor appointments.  Nothing.  It's a complete void.

Over the next month I will tell various stories to fill everyone in on Manny's early days.  Last year as it was happening, I couldn't share because of privacy issues.  But I want to tell his story  ... from the beginning.  It's a beautiful story that is still being written and I'm thankful for every one of you along for the ride. 

Now ... on to today's Genetics appointment.  Dr. Sanchez is actually a Metabolic Geneticist.  Long story short, we were not there long.  She already had the long history, the results of all the tests, etc.  and already had a plan of action.  She just needed me to fill in a few details. 

The real news?  She doesn't think he has Leukodystrophy at all.  She (and I) actually think it might be a Congenital Myopathy.  I've identified 2 that sound like him and his symptoms.  She wants a muscle biopsy done.  (I've been asking for that for months now... seems everything hangs on that.)  She has some ideas about what it might be and wants VERY specific tests done on the muscle. 

She was in a bit of shock that everyone had gotten stuck on the Leukodystrophy diagnosis and not considered other possibilities ... even in light of his clinical presentation being very different than the prognosis. 

Tomorrow I will be calling the Neuro to see when that can get scheduled. 

Oh, and he's lost almost 3 pounds in the past 2 months.  From 26 to 23.  That's significant.  But not surprising due to his tummy problems.  And so far, no troubles with his jtube feeds.  But he is still having c-diff symptoms.  (And sadly, so do I.  And yes, I got my driver's license today ... pretty uneventful thankfully.)

Mar 2, 2011

Happy birthday or Groundhog's Day?

Oh my what a day.  I feel like writing the entire blog in Dr. Seuss style in honor of our shared birthday.  BUT ... it would just be all too much to do that.  But the adventure is one he would love to capture. 

First, we slept great!  Amazing.  The only time we woke up was when our cat came home and cried right outside our open window.  (Who knows when he got out!) 

Then off to the DMV.  I originally set my appointment back for February 9th but that was the day that we ended up in the hospital so I changed the appointment.  BUT by the end, I ended up having to change it 3 times. And the last day was today or I am illegal and there's an extra fee.

I get there at 10:05 for a 10:15 appointment and the line is out the door.  Just as I opened the door, a little girl threw up on her mother's foot.  She asked if I had wipes which I did.  As we were doing that, a guy, squeezed past Manny and went right in and I said, "Hey, what are you doing?"  And he kept on going.  He went into the line for appointments.  (The long line was walk-ins.)  I said, "I have an appointment too."  And he never said anything.  I let it go.  I figured it's not worth the fight. 

So I push Manny in his wheelchair up behind this guy. 

Eventually his number was called.  Then mine.  As I got to the window, I noticed he was given his new license and out the door. 

Then my turn.  We were JUST about done when the computer crashed.  Statewide shutdown.  Long story short, just over an hour later, they got a message that it might not come back on line all day.  So we left.  But before we did, I got a note that I can come back tomorrow as if I have an appointment.  And they gave me a note that says I don't have to pay the late fee since it wasn't my fault.  They also gave me a note that says to a police officer the story in case I get stopped tomorrow with an expired license.  They say that most police will actually give a grace period of a few days but still. 

So I decided to go to the Mall.  A place I NEVER go.  I got lunch at Panda Express.  And the off to Bath and Body works.  I decided a long time ago that I would buy myself a special treat for my birthday.  Coconut Lime Verbena soap.  While in the store, the check out lady and I had a nice conversation.  Seems she is a survivor and she told me her whole life story basically.  I got to be an encourager for her. 

Left, not thinking much of it.  Then later it hit me that I was over charged.  I HATE conflict, even something like this.  So I wrestled with the whole thing.  Worth the money? Ugh. 

Then off to Macy's.  I don't know if I have ever been in there but friends gave me a gift certificate.  Long story short, I will have to go back when I have more time to shop as I didn't find something yet.  So good excuse to have another day again some time. 

And then I decided to go back to the store for the refund.  I have noticed lots and lots and lots of opportunities lately where I could have/should have stood up for myself and often did not.  I keep making the choice NOT to make a scene and I keep facing this challenge so I decided I might try a new approach.  (Like over the past week, the baby didn't get the fluids he needed, my chair got taken, the guy butted in front of me in line, etc. etc.) 

She was sooo sweet and apologetic about it.  It was just a mistake where one item rang up twice.  Refund.  And a 20% coupon for next time, etc.  Things are looking up. 

Picked up the kids.  And back to the DMV to see if they were up and running yet so I'm not illegal tomorrow.  But no.

Home for homework and chores. 

And I decided I wanted to go out to dinner tonight.  Ate outside.  Perfect night.  Couldn't have been more beautiful. 

Bedtime.  The end. 

Tomorrow?  Back to the DMV.  Is this GroundHog's Day??  Hey wait, that's Feb 2, not March 2. 

Mar 1, 2011

I'm going home I've done my time

Thanks Aunt Dawn for the precious baby Rabbit.  He loves him.  He rubs his ears.  The voice that says the little prayer is simply adorable.  Wish I would have done a video of their first introduction.  His jaw hit the ground he was so amazed by the little voice. They were watching TV together in this picture.  He's sleeping now all cuddled up with him.  I know it was a gift from the heart!

We had another night of pretty decent sleep from 11pm-3am.  Then again from 6am-8:30.  But he's happy today!  He seems to be almost back to himself.

I HAVE noticed that since being on full feeds (since 6am and it's 9:30am now) that his heart rate is going back up.  So clearly they're linked.  Remember how I was concerned a few days ago about it going way down (down to the "normal" range for other kids his age).  Apparently, the relatively higher heart rate is due to feeds.  Interesting.

Also, we are venting his gtube into a diaper all night and it was full of what I guess is bile (due to it's color) and stomach acids.  I have no clue if this is a problem or not.   Or if it's a helpful symptom.

On the good news, he's had no more diarrhea since 11am sunday.  On the bad news, he's had no stool at all.  But more good news is that won't keep us here. 

So unless his labs from this morning are bad or something goes wrong in the next few hours, we should be able to go home tonight. 

Some diarrhea and a couple of retching episodes later ... but not enough to keep us here!! 

Dr. Cartaya came by to check on us.  We of course aren't on his service this time so he just came by as a friend.  He hugged us.  I double checked, "Even if they say you aren't available..."  and before I could finish he said, "Insist on it!"

While I loved this other team we're with...  They're amazing.  They're lovely, sweet, soft spoken ladies who are just so warm.  Great people to be friends with!  They're all too much like me.  I need someone who will stick up for us.  Who will fight for us.  Who will defend us.  Who will go to bat for us.  Who will tell us the straight up truth even if it's hard to hear.  That's Cartaya.  (Like he sent us to surgery last hospital stay when he knew Manny was fine but the xray was 'questionable'.  This team would have just waited, he fought for us to get out sooner.)

3:20 they said we can go home.  Just waiting for the papers.

Eventually got out of there.  You should have seen the baby's reaction to when I took off his hospital clothes and put on his regular clothes.  He "knew"!

He was THRILLED to see Daddy and the kids!  They heard his reaction all the way down the hallway.

Stopped by the pharmacy on the way home.  Then by Mom's who had cooked us dinner.  (Yum).

Home.  Homework.  Bedtime.

I find this part very challenging where the hospital world merges with my "real" world.  I come home to undone projects, housework, etc.  All the things that have been undone because I've been gone for a week.  Plus all the new meds routine, the new feeding routine, he's still sick, etc.  I feel like there needs to be 3 more of me.

And we hit the ground RUNNING tomorrow.  Driver's license renewal (happy birthday to me or I'm illegal).  Walmart, many doctor appointments.  Scheduling new ones.  aaaaugh.  Just thinking of it makes me want to just crawl into bed.  But I dare not.  I'm filthy from the hospital and I want to be clean first.

And just in case you think we're all set and don't need any prayers ... the baby has started to show a few of the early signs of the tube migrating again.  Praying it's just coincidence but I have a feeling it's not.  That thing needs to STAY PUT.  Or we're right back in the hospital.

Love to all,
Beth and the gang