Starting OT

Colin has officially began Occupational Therapy!  We had our first session on Thursday - and it went GREAT!  He loved it, really seemed to love his therapist, and he did a great job.  Before she got started she said to me, "He'll probably really get mad while he's doing this!"  Nope, he didn't care!  He loved it  and he had a fun time!
Sometimes it seemed a bit like baby bootcamp - especially when she pulled out the yoga ball.  Sometimes it was just playtime for him.  We want to give him a lot of opportunities to experience new textures, new feelings, new emotions.  I really respected how she spent a lot of time just interacting with him so he would be comfortable with her. 

She started the hour with a massage!  Wouldn't we all love a massage!!  He started giving her the biggest smiles - I think it was really relaxing to him.

After his massage it was some "tummy time!"  His FAVORITE (NOT!).  She timed him to see how long he would keep his head up.  He did a minute.  Pretty impressive for him!

Time to play on the yoga ball!

Next week she'll be back for more!  Looking forward to seeing Colin growing and developing with her.

Lessons learned

We made it out of the hospital - on day 13, we BUSTED out of that joint!!  So glad to be back home and be finished with that craziness!  We came home on Sunday - which was actually a day earlier then expected.  On Friday they told us we weren't going home until Monday.  I learned a lot during those 13 days. 

*Hospital foods gets really old, really quick!  Luckily, since I'm a breastfeeding mom, my meals were free!  I just had to pick up the phone and call room service!  So, we just had to worry about Steve's food each day.

*YOU are your child's biggest advocate!  If you're concerned, have any questions, unhappy - it's YOUR right to speak up!  No one knows your child better then you do, so if something doesn't appear to be right - then SPEAK UP!!

*There were so many different doctors/nurses that would constantly come in to check on Colin.  One dr would say something, and another dr would come in 45 minutes later and say something completely different.  Many times I had to say, "But so-and-so said this!"  I often seemed to be the greatest line of communication between the various doctors and nurses!

*Hospital towels suck - they are not soft AT ALL!!

*Sleep?  Forget about it!  Especially when they are coming in at all hours to check vitals, give medication, etc. 

*I could read the monitors and tell if Colin was really desating, or he was just moving around too much! 

*As much as I didn't believe it, Colin would smile again!!  At one of my lowest points, I was convinced I would never have my sweet, smiley, lovable Colin back!  I know, it's irrational.  But he's back!  As smiley as ever!!

*Those nurses work their tail-ends off!

*Take plenty of lotion to the hospital!!! My skin was so dry, it hurt.  It felt like it was going to fall off.  I couldn't imagine how much lotion I would go through.  Let's not talk about handwashing!  RAW hands!  We had to wash/purell everytime we would come in the room/out of the room. 

*There's NO PLACE LIKE HOME!
*Did you know the RSV virus can live on surfaces for 72 hours??  WOW!

*One of the hardest lessons I learned was about Colin's extra chromosome.  It was part of the reason why it took him so dang long to bounce back from RSV/pneumonia.  It was heartbreaking to watch.  And for one of the first times since he's been born, I found myself ANGRY that he has that 3rd 21st chromosome.  I felt like I was punched in the gut, and it really took the wind out of me.  Since the day that Colin was born, I have thanked God that we were blessed with such a healthy baby!!  Children with T21 can have so many additional health issues - Colin was born with none.  I was living in this fantasy world that all was just going to be ok.  Till we landed in the hospital.  For 13 days.  And it was the first time that I really saw him struggle - where many kids might be able to fight stronger.  It was such an eye opener to me that things like RSV/pneumonia will be harder for Colin to fight, and that makes me sad.  Would I change that extra special gene??  NOPE!  It makes Colin who he is!

Day 11

......Still here.  AUGH!  That's all I can say.  It's Friday night, and that means that spring break is over, and I should have to return to school on Monday.  Spring Break?  Really?  I didn't get one of those.  I had been looking forward to the week of spending time with my kids and doing some fun things with Natalie.  Instead, Natalie spent the week being shuffled between grandma/grandpas, her dad's and her house.  At least she's a good sport about it and she kinda went with the flow!

Colin continues to improve each day.  A feeding tube was put in Wednesday - Colin just wouldn't eat!  Once he got a few good feedings, he really started to perk up.  I started to see signs of my sweet baby yesterday afternoon!  And for the first time, I saw two Colin smiles!  It brought tears to my eyes - I was so worried he would never smile again.  Yes, I know that was totally irrational, but I've been stuck in a hospital room for the last 11 days so I'm allowed to be slightly irrational!

Today he started to take a few ounces by mouth at each feeding, and then whatever he doesn't eat goes into his feeding tube.   Yesterday we shut his oxygen off for awhile.  He was sitting at .1 litres - hardly anything, but he really just needed that tiny bit of "juice."  He was off from about 4pm until around 8:30.  Then he started to struggle breathing again so I turned it back up.  Today he's been on oxygen the whole day, but they moved his breathing treatments to every 6 hours to see how he would handle that.  He did great!  No problems!  Tomorrow we'll take him off the oxygen again and see how he does!

On Tuesday, the senior resident promised me that we would be home by Cubs Opening Day (which is today!).  Well, that didn't happen.  As the doctor told me this morning, "I didn't say which year!"  So not fair.  As it turns out, we'll be here through the weekend.  He said that we would all feel comfortable making sure that Colin won't have any troubles when we get home.  As much as I hate to agree, I do agree.  I do want to go home, but I know I would just be hovering over Colin making sure that he's breathing ok.

So, until then, we will continue to work on the oxygen and getting him stronger!  We've seen smiles here and there today, and it's wonderful!  The sparkle is back in Colin's eyes and he's been awake much more then he has over the last two weeks.  I feel that we're getting close to being back home.

When is my spring break????  :-)


And of course, I have to put a few recent pictures of my getting-to-be-healthy again boy!

Natalie came and spent the day with us at the hospital on Wednesday.  We had a really good day!  Colin was still sleeping a lot so Natalie and I played a lot of games.  Lots of cards, a few rounds of "trouble" and had a good mommy/daughter day - even if it was in the hospital.  You could tell that Colin was really excited to see his sissy!!

Thursday she was here again to entertain him!

A little sparkle back to Colin's eye today!

Natalie was able to get some smiles from Colin.  He was watching EVERY move she made today!!

.......Really hoping to be home on Monday!!!