Monday, February 10, 2014


I know I don't technically owe any apologies, but I want to issue one anyway.  I'm sorry for the lack of updates lately.  You all pray for the special requests we put out, send cards and care packages, support our fundraising efforts, and boost our spirits with your kind comments and thoughtful words.  We are so appreciative of all that and more, and I want to keep all of you aware of the happenings in Eli's journey.  However, we've been very, very busy!  As they say, "No news is good news" and that is true in this case as well!

I think our last real update about Eli's condition came right when we had CT confirmation of his strokes.  A few days after that he was transferred out of the PICU to our home base on the third floor.  That was on Wednesday, Jan 29.  At that point Eli was still not moving the left side much, he was speaking a few words when prompted, and when he wasn't sleeping he was very fussy.  Even though he was running a low fever that morning, he was still transferred.  Docs on the third floor can deal with fevers as easily as the PICU docs!  We don't know for sure, but we think his fevers were an effect of the strokes.  His central nervous system is going through some major adjustments because of the damage that was done and it isn't uncommon for a stroke patient to have temperature fluctuations as a result.  A big reason for the transfer is because he needed a lower stimuli environment.  Hospitals aren't the best places to get rest and that's especially true for an intensive care unit.  In comparison with the PICU, the third floor is quieter and doesn't have as much hustle and bustle.  In fact, Eli had a peaceful two hour nap after the transfer.  We hadn't seen him sleep that comfortably since prior to surgery.

On Thursday (Jan  30) I came to Washington.  I got to spend the night in my home, sleep in my bed, and (most importantly) spend time with Zachary.  I took him to school on Friday then I went to a training session at work.  It was so strange to do "normal" things.  That night Zachary, my mom, and I ate at Mi Pueblo and got a little shopping done.  Bryan was in Indy with Eli and had been there for two weeks.  We had NOTHING at the house and Bryan was coming back home to start work again the next week. Zachary and I went to WalMart and the grocery store.  Saturday morning I had a roast and veggies going in the crock pot.  Z and I got to spend more time together then Bryan came home.  The three of us went to Zachary's first basketball game of the season (he's on the Bulls this year) and then he was in charge of what the three of us did for the night.  Without hesitation he told us we were going to get Taco Bell drive thru, eat on tv trays at the couch while we watched Turbo and Planes.  That's exactly what we did.  Then the three of us snuggled in our bed all night long.  If there was ever a kid who deserved to have some time with both parents, it's Zachary and we didn't waste a minute of it! 

On Sunday I packed up and headed back to Indy.  During the previous week, we had gone through the chain of command here on the third floor.  The visiting restrictions are still in place stating that only parents and grandparents can visit.  We explained our situation and were granted permission for my sister to spend the night with Eli in our absence.  It was soooo hard to be away from the hospital at all, but especially hard when Bryan was home too.  Eli has always had one of us with him and even though we knew we were doing the right thing by being with Zachary, it was hard to be away. 

On Monday, Eli started asking for food.  At first it was a very sad, pathetic "I'm hungry." When that didn't work he thought he had to get more specific with me.  He told me he wanted chocolate.  Then he said he wanted a burger.  With ketchup.  Later I received step by step instructions "Get phone.  Call.  Order mine food.  Want burger.  Want tet-chup on mine burger."  It was a long day.  The doctor on for the night got him on the schedule for a swallow study the next day.  Because of the strokes, we didn't know how strong or coordinated his swallow was.  For the test, he was offered different items (thin liquids, nectar thickened liquids, honey thickened liquids, and solids) that were mixed with barium.  As he drank/ate, xrays were taken of his swallow as the speech therapist and a radiologist watched the results.  I was given different instructions of what to offer and how much based on the previous results.  In the end, Eli did well with the nectar thickened liquids, but did aspirate some when he had thin (regular) liquids.  Overall, I was very pleased with the results.  The next day in speech therapy he was allowed to start having food as part of the session.  They are working with his verbal skills as well as swallowing.

He's been very active in physical and occupational therapies (PT and OT) as well.  When the week started he was having one joint session of PT/OT.  As the week progressed he's gradually come to have two sessions a day (one PT or OT and one joint session) in addition to one or two speech therapy sessions.  That means he can have up to four sessions each day.  As he's working so hard, we've had to adjust schedules to account for napping and work around his feeding schedule.  Since he's taking some food by mouth, we can change around how and when he gets the tube feedings.  Right now he's scheduled for two hour feedings at 10am and 3pm with an overnight drip from 9pm to 7am.  We can adjust the 10 and 3 feedings as needed based on the timing of therapy sessions. 

He has made huge changes since his time in the PICU (and we noticed a lot of improvement there too!).  He's moving the left leg and foot a lot more, his left hand and arm a little more, eating very well (with a lot of supervision), and speaking a lot more words and phrases.  He's turning his head left, right and midline, gaining a lot of strength in his head and neck which is dramatically increasing his head control, and starting to lift his head and shoulders off a pillow when he's reclining.  In therapy, he has stood for 10-15 minutes up to twice a day on a tilting table.  We lay him on a table, secure him with straps across his chest and stomach, and mechanically tilt the table until he's upright.  That way he can practice putting weight on his feet without actually having to support his full body weight.  He's also wiggling around in bed a lot.  Enough movement to warrant moving his regular bed out and replacing it with a crib!

Our room is getting very crowded with our personal items and all the therapy equipment in here.  We have a play mat for the floor, a rounded "log" he can sit on and work on balance, a seat and base we use for feeding and time out of the bed, a wheelchair, a medieval looking contraption that I'll be shown how to properly use so he can stand in that (similar to the tilt table) and I can push him around in the hallways.  I've bought two storage bins with drawers.  A large one in the room holds therapy toys and a smaller one in the bathroom has his feeding supplies (sippy cups, spoons, straws, dish detergent and other washing supplies).  

As far as what Eli eats, I'm allowed to order him anything pureed and we're working on solids.  So far we've tested Goldfish crackers (he loves and demands them at each meal and for snacks...thankful the hospital has a seemingly endless supply of these available!).  Today he had pancakes (or "pan-takes" as he calls them).  He did great with those.  I've been given the okay to let him have those when it's just me present as well.  A patient on the unit offered Eli one of her chicken nuggets one day and he's asked for nuggets for the last two days.  We may get to try some non-pureed meat in the coming week.  All his liquids have to be thickened to nectar consistency.  To do that, we add one pouch of SimplyThick to four ounces of liquid.  He's taking juice and Gatorade really well, but isn't a fan of milk that way. 

If you had told me when I was in Washington last weekend that in the next seven days Eli would progress to eating pancakes and possibly getting to try meat in the next few days I would have laughed in your face!  He is doing so, so well! 

By celebrating all that he has done in the past two weeks, I am not trying to diminish the long road he has ahead.  There's still a lot he needs to work on.  He can't sit up alone, he needs more head control, and many other things.  I'm just choosing to focus on what he can do rather than what he can't.  It's amazing to watch him progress.  If this had happened to most adults, we'd focus on the things we're no longer able to do.  The "benefit" of this happening to a child is that s/he doesn't think that way.  Eli just knows what he wants to do and he'll work toward getting that task accomplished. 

Our goals for the coming week are to get on a set schedule of therapies and of course make more improvements.  The days are long with lots of effort (from both of us) and the evenings fly by.  Usually once Eli is asleep, I'm able to take my shower, wash his bottles, pacis, and teething toys, and grab a snack (it's hard to eat in front of him since we're not on similar diets).  Once that is done, I'm nearly falling over with fatigue.  He's been sleeping pretty well though the night, but we have to make sure he changes his position every two hours so we can prevent bedsores. 

There's so much I want to write about, but it's very late and the Monday morning speech therapy session is quickly approaching.  I want to tell you about the Pizza Hut fundraiser, Zachary's basketball game, Eli's therapy progression, the great story in the Washington Times Herald about Eli, and share some pictures.  None of that is happening tonight.  I'll just say that from the numbers we have from Friday's fundraiser is mind blowing.  We'll post more information about that as it comes available to us.  We're so thankful for all of that support.

Specific Prayer Requests:
- Eli continues to make improvements as time passes
- we get more information about therapies and benefits available to us once we're out of the hospital and back home (it will be a long time, but it will take a while to get things in place also)
- that Eli and I both get the rest we need
- for our family as we miss having the four of us together

Thank you all!

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