No bad news is good news???

Well, today was a first - we went to Atlanta and got pretty much no bad news!  Except, some of the "same" news - but that's old news, not new news!  Are you confused?!!

Ellie had a great drive to Atlanta - slept the whole way!

Then to the best news of the day - she had an x-ray "swallow study" to see if she was still aspirating (swallowing into her lungs) and she is NOT!!!  She "outgrew" the floppy anatomy she had there and all the milk and sweet potatoes we laced with x-ray powder went straight down her esophagus!  It's been just under six months since we've done that one - so we were hoping for an improvement there!  So now she is approved to try to start some oral feeding - like a little bit of solids on a spoon and trying a sippie cup for about 3 minutes a day.  Even if she does well, the other side of things with Ellie is we just can't make her work too hard to do regular things.  Her body already works too hard to breathe and circulate blood and putting her through feeding Olympics is only going to take strength away from her for those other functions.  So, we're going slow with that one.

Ellie liked the 101 Dalmatians on the x-ray apron.  I guess for now this is her Disneyworld. She looks thrilled doesn't she?! :)

 

Then we had our ultrasound - she gently held the hand of the tech.

And finally to the appointment where the nurses and doctors (total of four in the room) ate her up!  She looked great, very calm and comfortable.  All of her vitals were good which is what we were seeing at home.  They gave her a "room-air trial" and instead of 97 or 98 (100 is the highest number) which is what she is at home, she only breathes 88 or 86 when she does not have her oxygen in her nose.  So she still needs that for sure.

 

 

She had her authentic "I love Rome" t-shirt on and was acting very holy indeed.

 

But she is still holey.  And her ultrasound showed she is still sick.  But not worse-sick!  Woo hoo!  They weren't expecting a huge change in three weeks since she's been discharged, so no big surprises there.  They made a tiny decrease in one of the meds so that was nice.  Also, her feeding regime through her machine will change slightly, allowing her to get meals every few hours instead of getting milk all day slowly dripping into her.  And they said we don't have to go back to Atlanta for a check up until after Thanksgiving!  That seems like forever away! 

 

So we walked away with hope for feeding her orally soon, hope she'll continue to get better, and hope that we might have somewhat of a chance to relax and enjoy fall and be in our home long enough to eat some of the Halloween candy we plan to collect in Ellie's bag.

Vols and scarves

Today Ellie was dressed out in her University of Tennessee garb, courtesy of her uncle.

She also donned a scarf hand-made by some gentle women of a special parish in Hoboken, New Jersey.  Sent with love by her great-Aunt and namesake, Aunt Louise.  This scarf came today in a package filled with sweets for Halloween and sweet notes for the kids.  It was hand delivered by our mail carrier who apologized that it was in a plastic bag because another parcel that included pancake syrup leaked all over everything in her truck this morning.  How perfect - it made a sweet package from a sweet aunt even sweeter.

 



 

Sunday

A little picnic lunch outside and a little nap inside is what we're doing today.

Future nurse

This morning Julia helped me give Ellie her steriod through her breathing machine.  Of course what I loved the most was Ellie grabbing her hand.  Sisters bond in all sorts of ways I suppose.

Friday

On Friday around 10:00 a.m. (right in the groove of chores and school) the nurse had a personal emergency and had to leave.  It was not quite enough time before her shift ended to find a replacement so the agency apologized and I was on my own.  So I put on this:
 
and the kids had their very first can of this (not everyone liked it):

and Jeff got home earlier than most husbands and I did this:

New rattle

One morning Ellie was fussing and nothing was really working.  The kids and I were playing Yahtzee so we brought it all to her little space.  As soon we shook the five dice in the little red cup - she quieted!  She loved it!  So we played alot of Yahtzee that morning.

 

Wash your hands

Here is what happens when a mom and three children who have not been out of the house in four days get to go to Walmart.

Who in their right mind would say no to giant containers of personal soap for each of their children?  They each got their own miniature pumpkin too.  Again, who can say no to tiny little pumpkins???

Raise your hand if you're tired

Effective Immediately

Last week for several hours at night I worked on a letter to ask for more hours from the nursing program through insurance.  They were planning to wean us to 15 hours a week starting in the next week or so.  I asked for no weaning to occur from now until Christmas assuming she'd still be fragile leading up to surgery.

Xavier and Julia and I went to the post office Friday and mailed a "certified letter" and it only took them 3 days to review it!  Because of her recent hospitlization they said yes to the request immediately!  They approved 8:00-2:00 5 days a week (almost, two days they leave at 1:00) until Dec. 23rd!  What an early Christmas present!  Even today the nurse will be here till 2:00!

Ellie will be in good hands for the next two months - and ultimately in God's hands!

They liked the soda

Aunt Lisa with her two nephews and two nieces one her special day.  Ellie almost made the shot in the swing but her spokesperson, the Chick-Fil-A cow, made the appearance in her absence.  Grandma's toes had a supporting role as well. 

Tube free

A little picture of what Ellie looks like without tubes on her face!  The nurse and I had time for a photo shoot today while we held the oxygen a little back from her face for a minute. 

She had a great day - MUCH better with the tummy issues :).  She really does seem to be doing well.  Feels like a little break before the next wave which we hope is heart surgery.  Did I just wish for that?  Yes, that's what she needs - so that's her life!

Front porch

Ellie and I had some cleaning therapy today.  I stopped her feeds and took an oxygen tank outside to clear some cobwebs (found the perfect stick!), window cleaning and sweeping.  She was a good supervisor.

Essentials

Jacob took this picture of me this afternoon cradling Ellie to try to get her to stop fussing.  Since we've been home two weeks now she's had some digestive issues and this weekend she really struggled.  So we had tried to avoid giving her some "help" but today Jeff came home with some important items. 

 

 

A soda for my sister's birthday tomorrow (we've started a loose "tradition" of letting the kids have a few sips of a soda at birthday parties - they absolutely love it) - my sister is the one that suggested this one - the ingredients are not too bad!  So far root beer is Jacob's favorite.  Julia said "it's too spicy".

A meal from work for a very frazzled mom to not have to cook.

The last two items is one of those scenarios where something that helps Ellie also has a negative impact on her.  So one thing is to help her grow and the other is to help her go.

Home alone with Dad

Jeff watched all four yesterday for a little bit while I was out with my mom and sister.  It was great to get away.

 

For fun, he decided to attend to Ellie's hair needs as well as her long list of medical needs.

A different kind of birthday

Yesterday a friend had a party for her 6-year-old little girl and the daughter decided instead of presents she wanted "baby Ellie" to have the gifts.  How generous, for such a young age too!

The three and I went to the park for the party and had fun foods, played on the playground with some old friends and recieved many gift cards from families of the girl's kindergarten class at the school.  It's humbling how the school keeps emitting such love and support - not to mention the blessing of employment :).

My favorite was the poster the girl made and had everyone sign.  Her name is Mary Elizabeth and she's quite the artist!  I love the Jesus - she even remembered "INRI".  Really precious.

Sunday

The sun and Ellie waking up.

 

Baby pictures

Well, of the four that we have, one has brown hair.  She happens to have tubes in her nose, but she's still her Momma's girl.

Trophy

The Viking Cross Country team was ever so thoughtful in offering up a recent race for Ellie.  They said they thought of her and put aside their own pain for what she was going through.  They came in 2nd place!!!  And they gave us their trophy!  A forever keepsake!

 

Although, our eldest - dear Jacob - is concerned that the team "should have it back" because it's theirs.  Don't get in the way of that boy and rightful owners of trophies!  He knows how valuable this is and I think that's an extra gift the students didn't even realize they were giving...a lesson in generosity.

Friday

A pretty good week around here - kind of uneventful!  Yay!!  Ellie's bloodwork came back good, she's out of the woods of dehydration so that's one less thing to think about.  She's doing really well - seems very comfortable and happy.

Here she is looking at herself while the other three were enjoying some sun and suckers!

Check up

Ellie had a routine doctor's visit today as a formality from being discharged two weeks ago - so it wasn't like a thorough visit, just looking her over.  They said she looks good so that's music to our ears!  She had blood drawn too - at the hospital.  The days of trying to get blood at the house are over, at least for now. It never did work out and the last time we tried was really hard to watch.  The numbers were all good though so she's balancing her fluids well.

Anyway, moving forward we are waiting for October 16th when we'll go back to Atlanta to see her pulmonologist and cardiologist for an appointment up there.  There she'll have a very important echocardiogram (ultrasound) on her chest to see how her lungs are doing.  She could either need more drugs (pray not please!) or she could begin her journey of being stable enough for heart surgery. Of course we've learned, there's always some path that we weren't expecting that jumps out at us when we think we know all the options!  But we think we'll be talking about one of those two options on our drive home that afternoon.