Bella’s Week

Monday and Tuesday we were down town for appointments.  She got her flu shot and it made her grumpy and yucky for three days.  Poor thing.  Glad to see her back to normal.  Bella’s anterior fontanel is still not closed yet and she’s almost three.  Her doctor and I have talked about it a million times. Well, her forehead is starting to get a cute little ridge – just right there in the middle above her nose to her hairline.  So I have affectionately referred to her as my baby Klingon a couple of times!  With this cute little development, we have a CT scheduled for next week and then a consult with the neurosurgeon.  Craniosynostosis is suspected.  We’ll see.  We talked about wheezing.  She just doesn’t seem to stop these days.  Her thyroid med had to be upped again, but the fabulous news is that now that we are (almost) three, we only have to go to endocrine clinic every six months, instead of every three!  Yeah!  So nothing big at either appointment – yeah for uneventful visits!

How she loves to lay in her Nap Nanny with that one leg draped over the side– and her beloved water bottle.  Although not very green, she sure loves to hold them!

“Sissy is reading to me, MOM!” (can’t you just see it in her look?)

Bella in the bath

“Signing Time”

Bella’s Week

Sit to stand

“OT made me sit in this new high chair – I don’t like it.  I want my old high chair back!”  (That is my interpretation of that look!)               Reading, though, that makes me happy!

Surrounded by toys                                 Swinging!!!  We had no nurse and Jason and I went outside to check on the garden.  Bella let me know by throwing her body toward the swing set that she wanted desperately to swing.  It’s been so long since she has been outside.  She loved it!

Sitting with sister

Her knee braces came in!!  She is checking them out before the patella guard is put in – and then standing.  I have such high hopes for those braces!

A couple of videos:

She is so determined:

Bella’s Week

We have had terrible wildfires here.  The air quality has not been good.  I have been so worried about Bell, but really, she has done much better than I had hoped.  Some oxygen.  Not as much off the vent time, but overall, I have been impressed.  Yeah Bella!

Bella in her walker.  She arches her back and propels forward – oh well, whatever works!

Now that she is in her big girl room, she is closer to the noise and bustle.  For Labor Day Daddy put up some doors – more privacy, less noise during sleeping time.

Hanging out with sister                       and reading a book (see the video below)

No nurse Thursday or Friday.  So she had to go to Bec’s ankle appointment and to drop off Joy at school.  She was adorable and flirting, of course!    Even on the vent for bath time some days.  Oh well.

Waiting for Joy to come home from school

Hanging out with Grandma – showing her the “put in” skills with Grandma’s watch and two cups.       Hanging out in the kitchen during Aunt Mandy’s birthday party.

Her attempts at standing.  Really, if you watch it close, she’s trying to figure out how to sit down and get her PT to read her this book.  Silly girl!

Bella’s Week

Reading…

Tea Time….we are working on pretend play

Therapy, therapy, and more therapy

Coloring

GJ Changes can wait till Signing Time is over – at least that is what Bella thought. The medical staff and her Mama disagreed and she let us know in no uncertain terms just how rude she thought we all were!

I can’t believe it but we are starting the paperwork/testing phase of getting ready for school. (She will be homebound, but it’s the same process) I have filled out forms. They just aren’t made for kids like Bella. Half of the questions I had to leave blank. When you spend the first 9 months of your life in an ICU setting, things are different. We have our first meeting next week. I am so afraid of how she will look on paper. I tell myself that it doesn’t matter, but it does still effect me. We are also going through this process with Joy, her older sister, and while expected, reading an objective report on her abilities and weaknesses is hard. The person is not there. It’s so cold. I’m afraid of Bella’s report. It’ll be fine, but my heart will be tender.

And if that wasn’t enough, we are having nursing problems. People have lives. But when their personal lives effect their work to the point that it effects their professional judgment, we have a problem. I had to let a nurse go – and that is very hard for me to do. I have a guilt ridden personality, so these things are hard for me.

We are now on our second nursing agency and this week the agency made me mad, and so now I am questioning in home nursing altogether. I am trying to be calm and let things blow over, but I don’t know. When you have in home nursing, you lose part of your freedom. Bella had a temp of 97 and a runny nose. The nurse called the agency and the agency called me to tell me to call the doctor. (They did that as a courtesy because they know I like to be involved and do the calling.) Excuse me? I call the doctor when I think it’s necessary. I know that nursing agencies have a limited scope of practice. They have limitations on what they can and cannot do. But seriously? 97 is not a temp and a little runny nose? I don’t think so. The Plan of Care is broad enough to cover that. I was furious. If she is sick, yes I will be the first to call the doctor. I don’t take well to being told what to do. Especially like that. There is an implication that I don’t know what I am doing and I need to get out of the way of the professionals. Sigh……Maybe I’m being overly sensitive. The little girls are being tested. Joy was labeled Mentally Retarded this week. There is a lot going on. But I have spent the weekend pondering if our family could survive without strangers in it 24/7. I don’t know. The freedom would be nice. But then I think about my friend Lacey. (she has no nursing) I’m trying to take a step back and realize that I am in an emotional place at the moment. We’ll see what happens.