Christmas Playing

Water Table

I filled up her tray with water.  She thought this was great fun!

By the end, she was soaked and happy and my floor was clean. 

Happy Thanksgiving!

Toys

 

Who needs toys when you’ve got old pulse ox probes and a bunch of plastic plates?

 

 

 

 

 

Cardiology Appointment

Tuesday we spent all day down town.  It took three of us to get that ECHO – the nurse to hold her arms, me to hold her legs, and Becca to do the hand motions to all of her little songs.  We were all singing and making funny sounds.  I’m sure the ECHO tech thought we were crazy!  But the cardiologist was delighted – more activity means she’s improving!  She says her heart is not the reason we are still on the vent.  Her mitral valve and tricuspid valves only have mild regurgitation now.  Her heart size is good.  She did increase her heart med by 50%.  It should help with her PH. 

We also got her synergis shot and did tons of labs.  We did a tracheal aspirate to see if we can figure out these brownish secretions.

New GJ–quite by accident

We have been having a few problems with Bell’s GJ.  So during shift change Saturday morning (two nurses plus me) we decided to check her balloon (what keeps the GJ in place).  Well, I deflated the balloon, she jumped (I guess the stoma was sore), and next thing I know milk is pouring out of her stoma.  Oops…when she jumped we pulled the whole thing out.  Oh well.  A call to the doc on call (it’s the weekend, of course) and we spent the rest of the day sitting in the ER waiting for IR to come in and place her new GJ.  We also spent the day trying to keep all doctors and nurses OUT of our room.  Sorry, but she’s fine and I don’t want ANY germs this time of year.  I just didn’t feel like training any residents today.  Once we got home, she crashed.  I didn’t see her fully awake again until this morning.  So now we have a new GJ.  That’s makes three full days we have spent downtown this week.  No wonder we are so tired!

 

Bella Overload

Bella in her stander.  She works so hard for PT, even though it’s gotta kill that knee.  She always crashes afterwards, but I’m so proud of her.  She gives it her all. 

But shoes?  Not her fav – get these off!

And a before picture for Bella’s hair – one reason getting her hair done every morning is so important

Jessi and Bella playing.  Notice the head band makes its way to Bella’s head in the next picture. 

I love this second picture – love the smile – but look at her legs! We learned from PT this week that this is why she can sit up.  She rotates her knees inward and puts her feet out.  She is compensationing big time.  If we put her legs in a round sit, back she goes.

Who needs toys when you’ve got cords?  And look at the legs in this picture – complete 100% splits (her legs are striped in that visually stimulating pic).

Love the light pouring in behind her head.  It reminds me how blessed and protected this little one is.   And then visitors!! Grandma and Grandpa Turpin are here visiting from Iowa for the holidays!!

Adorable Bella

Bella loves the mirror!

Besitos

Besitos – little kisses

This lively performance from the baby that was gray this morning.  We love you Bella! 

ENT Visit

The doctor didn’t feel that Bella’s adenoids or tonsils needed to be removed at this time.  He did want to go in under anesthesia and clean out her ear canals and possibly place tubes, if she needs them.  I’m not sure anyone has actually seen her ear drums because of those teeny, tiny Down syndrome ear canals – not that everyone hasn’t tried.  While she is under, pulmonology is going to do a DL&B or direct laryngoscopy bronchoscopy.  We are still working to schedule that because we have to get two doctors together in the same room at the same time – fun.  The doctor is hoping for some answers to why her lungs require so much assistance.  We’ll see.

GI Visit

Bella’s GI visit went well.  Her feeds were increased (again).  Her lab results showed that she is still very anemic.  We got to talking and started wondering where iron is absorbed.  So she checked google – gotta love that!  And sure enough it’s not where she is getting her iron supplement.  So we changed that.  We are hoping that will help.  More tests were ordered though because this has been a chronic problem. 

But on the wonderful side – she gave her blessing to the swallow study.  AND…if that goes well, we are going to start feeds in her tummy for one hour a day.  Be still, my heart!  I’m actually beginning to think that one day this little girl is going to be up walking around and eating just like the rest of us.  One baby step at a time.  Bella will show us what she can do.

Crazy Girl

A belated birthday present from Grandma.  She brought it by on Monday.  I still need to go spend Grandma Turpin’s money.  Sometimes getting all the gifts over a long extended time is more fun!  She loved the card (paper – yes!!) , was curious about the box, and loves the toy!

 

And next picture – I love it!!  Bella doesn’t/can’t eat regular food – but she LOVES tastes!  So if Joy goes in Bella’s room and she’s eating something, she gives Bella a “taste.”  It’s so sweet and they both love it.  She takes whatever it is, pushes it towards Bella, Bella sticks out her tongue, Joy places it on her tongue and then scraps downward a little (the taste), then takes the food back and eats it.  Everyone is happy!  I think it’s adorable!

 

 

Playing around on Sunday.  She is learning to clap.  It is so cute – the coordination is coming!!

She just can’t seem to stop all of the mucus, all of the congestion.  The daily desats, not being able to get off the vent, the exhaustion, the increased oxygen – no answers.  Poor thing.  I wish all the mucus would go away.  I’m sure she would feel so much better.

Happiest 2nd Birthday, My Love!

How did this day come?  I was so afraid we would never see your first birthday and here we are celebrating your second!  Happiest birthday to my little love!  We love you more than words can say!

Pulmonologist and the rest of her week

I love that the girls are starting to play together – truly a dream come true for me!

Then on Wednesday we had to drive downtown to see the pulmonologist.  My babysitter was otherwise engaged, so we brought Joy along.  They enjoyed watching Strawberry Shortcake for the hour drive.

Her pulm has no idea really what is causing her to still be on the vent.  He had thought that she would be decanulated by this past summer.  But Bella has always written her own book.  He has asked us to go see the ENT.  He wants some tests done.  And he wants another brochoscope.  We’ll see what comes of it.  At this point, I’m never surprised that the doctors don’t have answers.  Bella is unique.  She walks her own path.  Since we were down there, we also had her GJ changed and tried to get blood again.  Poor baby. 

He also told us about the blood test that should be approved in 2011 that will be able to tell if the baby the mother is carrying has Down syndrome.  A simple blood test.  In my mind this will mean more abortions.  I came home and looked at Joy and Bella.  I can’t imagine a world without almond shaped eyes and the innocence and sweet presence of these little ones.  I wish there was a way to educate people about adoption.  I wish a lot of things.

Unfortunately, the weather on Wednesday was yucky.  So for the next couple of days Bella paid for that visit.  Thursday she just stayed blue all day.  Friday she was just really yucky looking and by Saturday she was ready for her birthday!