Monday, March 24, 2014

Home Sweet Home

We're home!  All of us are together at last!  Eli came home on Friday the 21 of March and our final family member came home today....Albert!  He had been staying at my mom's house since all this started.  I got him this afternoon and now the five of us are together again.  The boys were excited to have Albert home again too.  As I'm typing, Albert's curled up beside me.  I haven't snuggled my dog since Dec 29 so I'm really glad he's here! 

We had a nice gathering with some family Friday night.  When Eli and I pulled into the driveway we saw "Welcome Home" signs and balloons.  The balloons were blue and tied to the stop sign in our yard, our mailbox, our outdoor light fixtures, and other areas.  Yesterday it occurred to me that anyone driving by our house who doesn't know our situation would think we just had a baby! 

Eli and Zachary are both settling in just fine.  The first night at home, they were snuggling on the couch and Eli fell asleep while laying on Z.  It was precious.  Eli has had some rediscovering to do here.  He's asked a few times where different doors lead and he often asks where we are.  I think he just likes hearing me say "home."  We haven't had real therapy since we left Evansville but we've been trying to work with him as he's playing and incorporate stretches, transitions, etc with his play.  We have an appointment Tuesday for an evaluation with therapists who will come to the house for his therapy sessions. 

As wonderful as it is to be home, it comes with some added pressure.  In the hospital Eli was receiving five hours a day of therapy.  Even if he's approved for daily therapy, it won't come close to that.  We just have to be vigilant about doing our part with him.  We've said all along that Zachary is the best therapy tool we have.  Eli loves to play with Zachary and do what he's doing.  We have to be so careful to make sure we don't use Z as a babysitter for his brother and just let him play as a six year old with his three year old brother.  Eli is walking better however one of us always needs to be within arms' reach of him.  He does well but can easily lose his balance or get his feet caught in something. 

Another thing we spend a lot of time doing since Eli's return home is encouraging him to eat.  Prior to his fourth heart surgery and strokes, he was eating about 75% orally and about 25% was delivered through his feeding tube.  After the strokes we slowly worked at getting back to his baseline.  We were close to it before we left Indy, but in Evansville his appetite decreased.  He's also not drinking much (he was doing that in Indy, Evansville and now at home).  On a normal day he'll drink 5-9 ounces of liquid.  Because of that he's also getting regular water flushes through his tube so he doesn't dehydrate.  We encourage him to eat and drink but he still needs a lot of nourishment through his feeding tube (thank God he has that!).  In a typical 24 hour period he gets three 3oz water flushes, two boxes of Boost which total 720 calories (one midday and one overnight), and another 8oz water flush after his nighttime Boost.  We're hoping being home and getting more comfortable here will lead to more intake on his part so we can decrease some of those supplemental feedings and flushes. 

I'm sure there's so much more I want to write about and tell you, but as usual it's very late and I'm tired!  Thank you to everyone who signed up to bring us a meal in the next few weeks.  We are so appreciative of that and all the other help we've gotten.  Prayer is the most powerful thing and Eli is obviously benefitting from it!  It's amazing to me that Eli's surgery and subsequent strokes were on January 21 and his arrival home was exactly two months later on March 21.  We are so humbled and thankful. 

Tuesday, March 18, 2014

Short but Sweet

Just a very quick note to explain the lack of updates.  Yes, we've been very busy while Eli's in therapy (which is going very well), but that's not the only reason.  The hard drive on our laptop is fried.  We do have a tablet that I use to check out Facebook, keep up on important emails, and these short updates, but that's about it.  I can't stand typing on that little keypad and it hurts my eyes to look at it very long! 

Hopefully once we're home I'll get some better updates out.  Or at least some pictures loaded!  Eli has been working very hard and is continuing to make progress at St. Mary's Rehab unit.  The next care conference is Wednesday and if everything falls into place we will get to come home Friday.  I still shake when typing that!  I can't believe we're so close to getting the four of us back together!  I promise to update after we have more information confirming Eli's discharge date. 

Thanks for all the support, cards, gifts, donations, shirt and bracelet orders, and especially prayers.  You've all been a huge part of getting us through this.  Bless you all!

Saturday, March 8, 2014

Short Update

We made it to Evansville and are settling in well.  Eli is transitioning better than I expected.  The time change has made things a little difficult, but we are adjusting.  Eli will have a full schedule of therapies here.  His schedule is set up very similar to the one at PMCH because that worked well for him.  The nurses, doctors, therapists, and other staff have been very kind and accommodating.  Eli will have full therapy days Monday through Saturday and morning sessions only on Sunday. He's a hardworking toddler!

A quick but heartfelt thank you for all the birthday wishes and kind words. It was a busy day for all of  us.

A better, more detailed update will have to come later.  It's very late and I am very tired!  Prayers for Eli to continue to adjust well over the next few days and do well in his therapies are appreciated.  Thank you all!!!