Yes...we are still here:)

Since Aubrey's hospital stay(two weeks ago) we have:

Sold a home

Bought a home

Went on a short trip to Minnesota (me, ella and aubrey)

Moved from one house to another

Celebrated Thanksgiving with family

Unpacked 1/3 of the boxes

You could say we have been busy...but that might be and understatement this time:)

Finally found the cord for the camera this morning so I downloaded the 533 pictures that have been on the camera for two weeks and am sorting through them.  Lots of updates coming!

Just wanted you to know we are still here...healthy...and catching up on everything...including our blog.

Potty Mouth:(

Today the words "POTTY MOUTH" took on a whole new meaning for Miss Aubrey...

There is no picture...for obvious reasons (I couldn't be bothered to grab it when there was more important things at hand).

Ella went potty (just pee)...left the lid up...forgot to flush...

Found Aubrey soaking wet...head to toe...as she exited the same bathroom...

Enough said...bath time at 2pm...on the double!

Home

A promise kept...we are home.  More later.

A Promise...

He promised (baring anything crazy) he would only keep us ONE MORE NIGHT!

They are still concerned about her fluid intake.  Which at 5oz today is pretty good concidering she is on an iv that is giving her fluids as well.  She is typically an 8-12oz girl most days.

He also wants one more blood draw.  Aubrey's M.O. is to do things very slow and her white blood count was up yesterday afternoon, but not a lot and he just wants to see where that is and make sure that she is still on the rise and progressing and not just fooling us with all this hospital attention.

She is sleeping wonderfully right now and her stats look great...she's been completely off the oxygen all day.  He is going to ween her off the iv as much as he can with out loosing her iv sight...just in case and move all her meds to oral (they have mostly been iv).

He said he would write orders for us to go home in the morning as soon as all the labs were drawn and he saw them...HE PROMISED...and I told Aubrey that she would behave appropriately, or Daddy would be staying tomorrow:)

I know that she has this history and her own way of doing everything, but we caught it early and she is a whole year older and I think that should count for something...but maybe with a good track record this time, he will be less cautious with her next time and have a little more faith in her healing and our ability to do all this stuff at home...OR maybe there won't be a next time and we can prevent it all this winter:)

She was pretty much back to herself today and that means that she didn't want to sit nicely on my lap or in her crib.  She wanted the freedom to run around and play...a great sign.

(I jinxed myself by packing up our stuff this afternoon--but I"m only pulling out my jammies and toothbrush--the rest is staying packed!)

How we are doing...

...since we are here an extra day or more...

OK...I'd say!  We decided that it was time to order some dessert last night and MOMMY got to have some chocolate cake...Aubrey had baked potato...because of all the things on our trays to choose from, THAT is what she wanted to eat!

Her appetite seems to be back...or maybe it is the choices that I am finally giving her.  At this point, I don't care what she eats or drinks as long as she does and we will detox at home!

She was over the moon yesterday when I let her have a hotdog and french fries!

Aubrey finally got to have a sponge bath last night and was at least looking much better than she had been.

Wednesday night, she slept almost 12 except for being woken up to do the vest treatments.  Yesterday she had a 2 hour nap in the morning (9-11) and then was back down for another 2.5 (1:30-4) hour nap in the afternoon.  She was sleeping so deeply in the afternoon that we had to give her oxygen and she wan't even stirring when we did vitals and others were talking in the room.  This is highly unlike her and I was very concerned.  I asked the nurse to call the doctor and order the blood work for last night to maybe see what was going on.  She was ready for bed at 6, but I kept her up a little to skyp with Daddy and sisters, but then she slept 12 straight hours last night.  The Respiratory Therapist skipped the vest to let her sleep and just did CPT by tapping her back and she barely stirred all night, but they did put the oxygen back on her before bed, but just really low.

We are awaiting the doctor now, for official blood work results, but the nurse told me that everything looked ok.  Tamiflu has a cumulative affect of dizziness and drowsiness and so they think THAT is catching up with her and making her so sleepy...but we wait and still hope...but have made plans to continue being here.

This morning they took her off the oxygen again and even let me unhook all but the iv so that she could get down and walk a bit.  She is very wobbly and just kept going over to the door wanting to go out and play...I don't blame her:(  So I let her play by the window and that seemed to be a good compromise.

(For those wondering--she isn't hooked up to oxygen, but I didn't want to have to keep putting the canular on and off, so I just popped it up on her nose for now)

She is napping again now...and peacefully...so we are just waiting to see what the doctor has to say today.

S

Staying here...

... he said no.

She is on pretty high doses of nebulizer treatments and still on the iv fluid (and not drinking anything on her own-likely because she isn't thirsty!).  His fear is that if he backs down to "home care" level and takes her off the fluids to go home, that she will relaps and have to come back. He would rather back down to that level here and monitor her and not take chances given her history of not following the book.

A little upset that he didn't mention the meds yesterday as a home criteria, but in the end, he only has her best interest at heart and he has ordered one last lab in the morning and will set up discharge papers as long as tonight proves uneventful for her

So one more night...we hope.

Overnight and Q & A

Our goal last night was to keep her off oxygen...

When we arrived, she was at 1 liter of oxygen.  Yesterday they had her down to .5 liter.  They decided to turn it off and see how she did...not good.  I recommended that we do it point by point, since she seems to think that she needs the smallest bit of oxygen.  We got her down to .1 last night...which is like NOTHING, in case you were wondering, but we just couldn't get her completely off!  THAT is not enough to keep me here another night and I will express that when the doctor comes.  They took her off completely this morning and she is doing great.

This is mostly for Daddy, but this is her sleeping stats right now...

I'm not packing yet...but hope to be soon!

Q & A

1.  How do you do it? 

               With lots of help!  Woody and I each have our roles and mine is hospitals.  He would rather do ANYTHING other than hang out here...even over night and it would tear me up to be away from her when she is so needy...so it works out.  While our immediate family is far away...we have a wonderful "family" here who step in at a moments notice to help watch kids, which is sometimes our biggest need.

                Faith...We trust God's plan and purpose for all of this.  Another Dad wrote on his son's blog today about something he had read in a book this week and it says exactly how we feel...

(Matt is the lead singer for Sanctus Real and he blogs about his son's heart surgery and hospital stay here.)

“I hear religious minded people say all the time with good intentions. ‘God will never place a burden on you so heavy that  you cannot possibly carry it.’
Really?
My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load. All the while He will walk beside you waiting for you to come to the point where you must depend on Him.
‘My power is made perfect in your weakness,’ He says, as we strain under our burden.
Whatever the burden, it might indeed get worse, but know this-God is faithful. And while we change and get old, He does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting, transforming, and undeserved grace.”

-Greg Lucas

2.  What are they doing for Aubrey?
             She is getting the drug Tamiflu for her flu bug.  She has some virus/cold that is making the breathing harder and so they have had her on oxygen.  They are doing Respiratory Therapy every 3-4 hours.  She is little and things tend to settle in her lungs and she can't get them out.  It is better this year, because she can actually have a "productive" cough and get some of it out herself.  Therapy consists of nebulizer treatments and CPT-cardio-pulminary-therapy.  It is an ever evolving therapy and they try all different things.  This time we have a vest that fills with air and then "shakes" her!  Whatever works I guess.

(pardon the look--it has been a few days since a bath happened and the hair is getting out of control:)

3.  What will you do for the rest of the season/holidays?
             It is 77 in Dallas today-not that we would know since we haven't left our room since Tuesday-but it is hardly winter here and she is already getting sick.  We will go under strict house SANITIZATION.  I have to admit I have been a little lax about the girls coming home from school and playdates and washing up before playing with Aubrey--but that will change and we will be strict about all who come for therapy and visits.  It is important...so it must be done.
            While we don't / can't hold up completely in our house all the time, we will do the best we can to at least keep her away from germs when we go out.  So if you see us and we scoop her up and don't let you hold or touch her...it isn't cause we don't like you...but we are just trying to keep her healthy.

4.  Are you used to the hospital thing?
             You never get used to it...you do get better at it.  I know what we need to have here, to make it easier.  I know how to better advocate for her and to TELL them how to make their lives easier, because we have done this before and I KNOW what has worked in the past.  There will likely be a bag packed in the car all the time now...just in case.  Being prepared and organized is key and makes life easier on the man who has to take my list of demands requests and gather them each night to drop off!

Thank you for all of your prayers and words of encouragement and help.  We appreciate it so much.  Along with the Lord, we couldn't do this without all of you either.

We'll let you know what the doctor says later...

Update

NO PNEMONIA!!! The doctor was just in and said that her x-ray looked fine and they ruled that out and took her off one antibiotic that they had started as a precaution. He left her on another because her white blood count was low. He assumes that as she feels better it will go up...and they will double check it before they discharge her.

She is slowly starting to eat...she had chocolate ice cream for dinner last night, crackers at 4 this morning...and a yogurt for breakfast. So they decreased her fluids and have also backed off the oxygen. She is barely on anything, but we are hoping to have her off it tonight so that we can go home in the morning...it's the only thing keeping us here. As with the past, Aubrey doesn't follow any rules of anyone else, so we are cautiously optomistic.

Another option would be to go home with oxygen and a pulse oxy meter again. We have been there done it before and would rather be home together with all that, than separated just for oxygen use.

A few pictures from yesterday and today...

She fell asleep in the chair at 9:30am yesterday while I was calling the doctor...

Ella was with us all day yesterday and was highly entertaining for all the nurses:)  I did finally get them to rest a bit with some baby signing time video!  (yes, I grabbed a few things before heading out the door yesterday!  My theory was that if I packed a bag for us...we wouldn't need it...but we did and I'm so glad that I had the dvd player and video and jammies)

WHAT DO YOU MEAN WE ARE STAYING HERE!  I DON"T LOOK SICK!

At 4am this morning she was feeling much better and thought that we should ALL be awake and read books and play and talk and eat!

Just checking my stats Mom!  (Isn't it great that she can reach all her monitors and ivs from her bed--but I let her walk around in the crib since she can't really go very far on the floor because of cords--she would REALLY love a walk down the hall)

Aubrey thinks that her changing pad makes for a very good seat to watch cartoons on!

Hospital

Just a quick note to keep everyone in the loop...

Aubrey was having some trouble breathing yesterday morning, so I took her to the pulminologist for a check and wouldn't you know it...she was stating at 82% oxygen...and she has the flu!  He also heard some raspiness in her lungs and thought she might possibly have pnemonia.

So we were admitted to the hospital for some oxygen and to get some x-rays done and get on top of the flu.  We are hoping that the x-rays will be clear and that everything improves and we are home quickly.

We will keep you updated.

Time Change Troubles

The time change, coupled with the fact that she has been sick, have messed up some sleeping habits at the Smith house...really just Aubrey.  I'm sure many are feeling our pain!  I will say that she hasn't gotten UP any earlier in the morning, which is a blessing, but this is what Aubrey does, while she should be sleeping at night and can't because she has taken two naps or a late 4 hour nap or gets a second wind because someone thought that at 2 she should be big enough to partake in Halloween candy eating after dinner!  (You decide:)

Accessories

Some have ask about the cost of Aubrey's accessories...and I'll admit, when I hear about someone else getting something, I'm always curious too:)  So Aubrey is willing to dish on cost today!

Orthotics
Aubrey's Sure Step (I'm not sure if there are different brands--that is just what our doctor does for kiddos) orthotics cost $1600 total, before insurance.  Our insurance at the time covered the entire cost of them, but it would be different for everyone always dependent upon insurance.  Her feet are really small and she was wearing a 0-1 size shoe before them.  Now that she is on her feet, and they are growing a bit, she would wear a 2-3 without orthotics and wears a 3 with them on (which is all the time).

Replacement is debatable.  There are a lot of little adjustments that they can do to her current pair, before we would have to replace them, but we know what to look for as she grows and see her doctor every three months.  I'm hoping that we don't have to replace them too often:)

Hearing aids 
Hearing aids cost about $3500.  Our old insurance covered $1000 every three years (the warranty runs out after 2), and the rest is out of pocket.  This is one of those loophole things that doesn't even work towards your deductible:(  Our new insurance doesn't cover them at all.  So after the warranty runs out, we are out of pocket for the whole thing and it doesn't go towards deductible either.  The warranty that we got was about $200 and covers EVERYTHING...including water damage and if she looses them.  Only thing is that if she actually looses them, we pay a small fee of $75 for new ones.  Not bad all things considered.

Glasses
Since we haven't actually gone to get Aubrey's yet, I don't know the actual cost.  We have pretty good vision insurance right now, so that should help, but I have heard that it is best to spend the extra money to get the completely flexible frames so that we aren't replacing them frequently.  Ballpark I've heard is $600, but I guess all that would be again dependent on your individual insurance.

Her eye exams are done at a pediatric opthimologist, so we only pay our $10 copay for that visit and she gives us the prescription to have it filled at an eye glass store, so I think in the end we will come out ahead, because my eye exam always costs me WAY more than $10.  So if you are in the market for new eye wear for your little one, I would definitely go to a pediatric opthymologist first and take the short cut on the the cost of the eye exam.

So there you have it...all her accessories for the year!  I'm thinking that besides replacements, we should be done shopping for accessories for her now!  It has been a busy and expensive couple months...but so worth it when we can see her up on her feet walking and hear her making new sounds and working so hard towards talking.  I think that the glasses will just provide her with better sight for getting into trouble!  Not sure we will enjoy that so much;)

Wordless Wednesday

Getting Better....The INCREDIBLES

I am happy to report that Kate scooted off to school today with Alice and only has her tiny cough (and a dramatically painful ant bite on her foot) slowing her down.

Aubrey is fever free today, but the snot factory is requiring at least two baths a day to clean off the face and get it all out of her hair!  I think the congestions is preventing sleep now and she just cries when you put her down...so hard to suck your thumb when you can't breath through your nose:(

Ella still spent most of the day in the same state she did yesterday, but kept her fever below 101 all day and was willing to finally take a bath tonight and brush the rats nest out of her hair!  My funny sick girl,  I knew she was feeling a bit better when she asked for lunch...string cheese!  For dinner...milk and pineapple!  What she REALLY wanted was pea soup...but I ran out of carrots to make it and it just didn't seem appropriate for someone who hasn't eaten anything in days!

Aubrey is crying again, so all I got time for is one Halloween picture of our INCREDIBLE FAMILY!
(we had some wig issues here in the beginning, but this was the only group shot that turned out)

Happy Halloween from Mr. Incredible, Elastigirl, Violet, Dash, Jack-Jack, and Edna Mode

(I'll post more about our weekend later:)

Halloween Hangover...

While I would like to say that this all started today...but this has been a reality all weekend.  They did perk up enough to get dressed up and do a little trick or treating, but we are hunkered down this morning with jammies, juice and cartoons.

(and just in case you are wondering, Ella is my "high fever gal" and she does it this HIGH every...
single...time...usually just a virus...nothing we can do...but we will all be heading in to the doctor this afternoon to find out for sure)

Will post some Halloween pictures and updates when I can...