Bella’s Week

Monday we spent at TCH.  We got our last synagis shot.  I am so grateful for those.  I worry a little less.  We saw GI and we changed her GJ out for a new one.  She hated the change.  No one touches her button, no one.  It wasn’t a good experience, but it’s done for another three to four months.  GI was a good visit.  We really want to see if we can start working toward getting away from continuous feeds.  So she changed her day time feeds to G rather than J – be still my heart.  If she can tolerate it, we see if we can’t stretch that little tummy out and start working towards bolus.  Again be still my heart.  Since aspirate pneumonia about killed her in 2008.  But she is not the same child she was then.  She is strong and she wants so badly to be free from all of her tubes.  We’ll see.  It would be wonderful!

Whenever she is feeling up to it, this is where she wants to be – outside swinging!

I got Bella two new Signing Time DVDs – she adores Miss Rachel.  Checking them out, “look Mom!”

Sweet girl just doesn’t do well with the pollen.  I had been waiting for it to happen and hoping I was just crazy, but she has been re-introduced to her friend the concentrator.  Sigh.  I’m so grateful for the vent and oxygen.  Where would my sweet girl be without them?

On a good note, she does do better after she’s had a chance to wake up and clear (well some what) her lungs of all of that garbage.  She loves to play in her hair bows lately!  See how she has herself so tangled up in all of those cords?  Her circuit is literally all the way around her.  Sweet, crazy girl!

Field Week

That is what Lizzy said about Bella’s week.  She didn’t just have a field trip; she had a field week!  On Wednesday we went to the dentist – she has some teeth that haven’t erupted which is normal for DS and she has the normal mouth of a kid that is G tube feed – lots of plaque, but no cavities.  He said he will have to sedate her and blast it all off, but he wants to wait a while to do that.  Fine in my book.

My Bella Boo loves to swing.  Loves, loves, loves it!  She will pitch a fit if she isn’t done and you try to take her inside.  Sorry your highness.  I am including a couple of videos below.  She is signing swing now – it’s not the normal “swing” sign, but it’s what her hands can do.  I love it!  I love that she is communicating!  A few months ago her therapist and I were talking about using pictures for her to communicate.  We don’t need to.  She is starting to sign and even make some vocalizations, although I am still anxiously awaiting the coveted “mama!”

The butt scoot is the technical term our PT uses to describe how she gets around.  We don’t use that term at our house, so the girls call it the bottom scoot.  She is so funny.  There isn’t much she can’t get into these days!  Yeah for you Bell.

 

Lizzy told me that she loves Bella so much – she wants to adopt a baby like her when she grows up!  Sounds like a great plan to me Lizzy!  If you can see it, Bella curls her little feet around the girls' bodies to hold on tight when they carry her.

 

 

Bella has had the best week, so we were brave and took her to Brenham.  It was so much fun!  We played at a wonderful park and then went and had Blue Bell Ice Cream.

Even after that big expedition, she had a great night.  So we took her to church!  That was her third time.  If she keeps this up, I might actually start believing the doctors about decanulating next summer. 

You are amazing Bell!  We love you!

So very, very grateful….

We have had several call outs of late, so I have had a lot of hands on time with my baby girl.  A lot of time to be with her and love on her more than normal.  More bathing, more diaper changing, more time.  That’s how I found the first swollen lymph node.  That night, another.  The next day another.  The next day another.  And that’s when I discovered that the internet is not always your friend because it’ll tell you the worst case scenario.  And then my mind filled in all the blanks.  I was panicking.  I was terrified.  I was trying to figure out how we would make it through another prolonged hospital experience.   Monday morning came with another call out.  But I am grateful – because it meant that Jason took off of work to go downtown with me.  Because this was either going to be a reassuring visit or a life altering one.  I was glad he was there.  Our doctor ordered the CBC.  That night I waited and hoped.  The next day my Father-in-law posted on Facebook that it was his one year anniversary since being diagnosed with Leukemia and I sat there reading that with terror griping my heart.  Today I learned that my baby does not have cancer.  Her results are a little off – but they don’t look like cancer.  Today my heart is breathing again.  You don’t live long in the DS world without running into leukemia.  I was afraid it had run into us.  Today it’s not us and I am grateful.  But my heart is still beating a little tenderly and I’m thinking of the families that today got different news.  Today it could have been us.  One day it still could be us.  Today it’s not. 

I wish I could totally shake this fear.  Leukemia scares me.  It’s not fair that these sweet kids have such a higher chance.  The good that has come from all of this is I got to talk to our PCP about cancer and Bella.  I have been so afraid that if she did have it, that oncology would take a look at the vent and everything else and just hand us off to hospice.  I have been afraid they wouldn’t fight.  My doctor reassured me that they would and she would be right by my side fighting for Bell.

So there we are.  Today we are cancer free.  I hope we always are.  It’s been a rough five days.  My prayers and tears go out to all the families that are fighting for the lives of their babies.  May God bless you.

Bella’s Week

Ever feel guilty cause your little one is doing well?

I heard of a little one that died and my heart crumbled. 

I have been praying for and thinking of little Joel.  He is my friend’s son.  He has struggled of late.  I was so afraid for him and his family.  He is back in the hospital.  Be strong little one.

Meanwhile, Bell is doing well.  It is Spring here.  She wants to be outside.  Which is wonderful.  It means she is feeling well.  It also means occasional oxygen.  It means tons of breathing treatments.  It means secretions headed to green.  It means taking out her trach and cleaning it every day because we have plugs.  It means lots of CPT.  It means a trach that smells like old gym shoes.  It means more antibiotics.  But this Spring I am taking her outside.  She loves it!

Feeding – she’s not so interested.  Tasting, yes.  Actually working, actually swallowing, not interested.  In her defense it’s harder when the secretions are increased to work with saliva and food and get it down into the tummy.  Oh well.  It’ll come.  She’d rather play in it anyway. 

Playing with her mirror – her absolute favorite toy!

Two appointments this week.  First for labs.  The lady looked at her and wouldn’t even try.  So we went somewhere else.  But good came of all of that.  The other lady usually does her, so she knows how hard a stick she is.  She wasn’t up for it that day.  We went to the second place and they feel in love with her.  They got her in two tries.  We’ll be going back!

Second appointment – eyes.  Last year they were really bad, this year, the doctor says they are just a little worse than normal and he’s not worried yet about the eye that sometimes crosses.  And we don't have to come back for a year!  Wahoo!  OT meet us there and we did our therapy while we waited.  Bonus!

A trach mask – we actually got to use one!  She was off the vent when she needed her neb treatment so I used the trach mask.  I feel like we have hit another milestone!

My adorable, wet, all nice and clean, baby Bella.  She’s so cuddly right out of the sink!