Sister

Ellie's been pretty good these past couple days - however she still has a fever and is a little irritable.  We're treating her with an antibiotic to see if it truly was an ear infection.

A little cuddling and story time with Julia got her really calmed down last night.

 

Cold

The past 48 hours have been a "waiting and watching" marathon.  It really started Saturday but then was bad Sunday then worse yesterday with the nurse here.  Ellie was very fussy those days and would not nap more than 5-10 minutes and even those naps were "thrashy".  Getting out to the pool was a distraction Sunday and I thought the heat may have aggravated her so we cranked down the a/c when we got home and hoped it would help but it didn't.

On top of the fussy/unsettledness, she had a very high fever and she was burning up.  But, to make things really interesting, she was doing this "huffing" thing.  We have learned to make up our own words to describe things with Ellie as exact as we can!  She was breathing short, fast breathes and kind of twitching and looking around with very "darty" eyes - something she'd done right after her surgery.  Then we hooked her up to the machines yesterday and saw her poor little heart rate.  Normal for her age (she stays on the high side of this) is usually 120 per minute.  Yesterday she was 190 per minute, pounding non-stop!  I put on the stethescope and it sounded like someone banging on a door in my ears!  So after the nurse did some pain management all day we finally decided to report the symptoms to her team.  They were calm about it and suggested we have her pediatrician observe her first thing this morning then go in for an ultrasound if needed.

Our little family prayed so hard last night for Ellie - that she would heal and recover, hopeful that it was just a cold with some pain (causes elevated heart rate).  Thanks be to God, she had a restful night and woke up in a decent mood.  We did take her in to the pediatrician and by then some of the symptoms had really decreased and her heart rate is now around 150. So we skipped the ultrasound since she has that coming up in 2 weeks anyway.

She's not her happiest self by far but she's hanging in there - getting cheered up by her silly siblings.

Swimming!

God chose a house for us in a neighborhood where a family with another little girl with Down syndrome lives.  They have a pool and every summer they have a party for the support group here in town.  Last year Ellie had just gotten out of the hospital and we weren't even sure how she was doing and I walked down there with the three kids.  We wore clothes because no one could swim at the time and we all waded around in the shallow end like we were lost and out of place.  We were!

This year felt a tad bit better :).

By ya'll!  It was fun!

Sunday

Happy Sunday Holey Ellie friends!

Julia helped me give Ellie a little wipe down today.

 Clean and spiffy!

 Ellie enjoying rolling around in some clean, hot sheets from the dryer!

 The four enjoying some time inside from the heat!

 Xavier got a hold of the camera.  First Ellie was a willing photo subject.

Then she started to have enough. 

That's it - wrap it up brother! 

Our girl has been doing pretty well overall.  Today she happens to be warm and pretty fussy.  Trying to get her to rest as much as possible.  No change on feeding - keeping it pretty simple based on some good advice from her team to really not push too much.  Xavier learned that lesson with the camera.

Feedings

We finally got our hands on the new food to give Ellie.  The first day we gave it to her she still did throw up some but the second day it seemed to be less!  Today will be the real test because the nurse is back and she will chart it and we'll have a real idea of how it went.

Practicing sitting up a bit.

And posing with a hat placed on her head by the children.  Actually she takes it off one nanosecond  from when this picture was taken :). 

Sunday

Sweet girl all dressed up for church.

Not quite sure what she thinks about being held by Julia but she loves her big sister in spite of the look on her face.

Happy Father's Day to our Daddy who will stop at nothing to make his children feel loved.  Even wearing beaded necklaces they made. 

The hair and the half zipped pajamas say it all.  This girl wakes up ready to make a statement.

Simple week

Hello!

We've had a simple week here at our house - praise God!  Some visitors, some chores, some errands.  All great stuff!!

In fact I found myself the other day cleaning out the school corner and deciding to tear each and every sheet of paper off the pads and pads of construction paper we have.  The art of breaking the page from the glue strip without tearing the sheet is too complicated for 75% of our students here at our school and the coping skills required to deal with the catastrophe are severely lacking.  So to do a task like that makes me feel somewhat "balanced".  Having a husband home for the summer will do that to a mom.

Here are our golfers heading out.  Ellie stayed home with me.

Ellie's doing very well.  She's still not eating by mouth and to tell the truth on any given day she still can throw up a couple times.  We're picking up some new food this week for her so pray that goes well.  Our most wonderful nurse is working long shifts so Ellie gets amazing care on those days.  Multiple baths if needed, food given with careful attention, medical issues checked including her feeding tube leaking a little food out of her incision site made for the tube itself in her stomach.  Yeah not what you want.  

But here she is saying her prayers before she falls asleep for a nap. 

Letting the sun rise on us in the playroom. 

Ellie tees up!

For a year now Jacob and Xavier have been playing golf in local tournaments and I've been sad to have had to miss all of them!  Jeff is the "Caddie-Daddy" so he's always there but I've stayed home with Ellie.

So this weekend with family in town I decided Ellie and I would be there! It happened to be a fussy day for her with some fever and crankiness but she hung in there.

Here we are on the golf cart - she liked it when we were moving!  By the way, a sling works great as a seat-belt if you are ever in a golf cart with a baby :).

Family

Greetings!

Ellie and the rest of us have had some visitors lately!  My uncles from Kentucky came down here - it's been four years since we've seen them!  We had a great time and had lots of laughs - kids are usually good for that :).

My dear Grammy, God rest her soul, had a son who needed special care beyond childhood.  He is now looked after by his brother and I know that would please her greatly to know he's well cared for.  Her devotion in caring for her son is one of a gazillion reasons I looked up to her.  How I wish she could have met Ellie but I often hear her in my heart encouraging me.  Here is Uncle Ricky enjoying playing with his great-niece. 

Nurse

We didn't have a nurse today due to some moving around of hours for the summer.  Ellie was warm all day and a bit fussy so we managed that with Tylenol and didn't rock the boat too much with her feeding trials.

I'm hoping tomorrow with the nurse back she'll be feeling better and maybe eat some.

She sure looks happy though doesn't she? :)

Looking for me

Ellie hanging out in her bouncy chair watching me work.

 Checking to make sure I haven't gone anywhere.

Chocolate Chip Cookie

Well, I baked today and I told you I was willing to do whatever it took to get Ellie to eat.

This was a warm, soft, melting cookie that made it almost past her lip.

She eventually did get some in her mouth and then gagged.  But she has a pretty good idea - how nice would it be to walk around with chocolate on your lips all day taking a lick now and then at your leisure?  Very fashionable too. 

Dental, Auditory, Oral and Optical updates

Ellie has had three check-ups already this week - we stacked them all for summer!

First, her eating is still not progressing like we'd like.  It's beyond frustrating so we're at a level of acceptance and surrender.  We go to specialists, they come to us, nurses try to feed her, we try.  She's just not interested in having things in her mouth.  We've even tried lollipops, ice cream cones and warm vegetable soup off a spoon.  I do plan on brushing up on my cooking skills that have been abandoned for an entire year so maybe the smells will help!

Then she had a hearing test as part of one year old screening for kids with DS.  She seemed to do well but with narrow ear canals it's so hard to tell.  But she responded to the beeps and definitely responds to us talking to her!

She had her eyes checked today and that all went well too!  She does not seem to have the major problems they look for such as early onset of cataracts, vision problems or weak tone around the eyes causing droopy eye lids.  Things can develop but for nothing for now!

And the cutest of them all is that she has two teeth!  Little buds on the bottom have popped through so she joined the other three in receiving a Dollar Store Snoopy toothbrush of her own!  She fights it being in her mouth but that's all part of getting toward eating too so it's good for her to have the stimulation.

All else is well here, we bought a baby monitor - we've not really done that since the very early days with Jacob since our house was so small.  But it's come in very handy these past few days since she loves to sleep in her room so much!  I'm just realizing her swing faces the wall, maybe she'd like to face the window as she's falling asleep for naps.  I'll make that change later today as she's asleep at the moment (having just stared at the wall!).

Summer

What?  Is it that time of the year that Daddy stays home a lot?

Oh yayyyyyy!