Sunday, January 31, 2010
Friday, January 29, 2010
An older picture – but I had to include it! Since Sammi is home all day, she and Bella have a special bond.
Sitting on the rocker with Joy
A huge first – A bath in the sink! I love to give my babies baths in the sink. I put on her HME and was really careful :) She can’t sit up without support. This morning she was requiring maximum support, but with my hands high and sitting on a towel, we accomplished it. Look at that face – Mom, what is this?
Another first – shoes!
The lady that fit her for AFOs said that she needed shoes. She’s never worn shoes before. She’s so cute and looks so grown up!
Wednesday, January 27, 2010
Bella was fitted for a stander and AFOs! The AFOs should be here in a few weeks, the stander in a few months.
We went to Endocrine on Monday and she stopped the thyroid med! Wahoo! In the 10 months since we were at death’s doorstep, Bella’s thyroid has decided to start functioning again. Way to go thyroid! She was having an immune response and it’s over.
She is getting stronger. She was in that stander for half an hour today – 30 minutes! Her endurance is getting longer and longer in PT. Her vomiting is decreasing. And she is so happy!
I am so proud of her and all that she has gone through and conquered. Way to go my little love!
Sunday, January 24, 2010
Because of our religious beliefs, we try to keep the Sabbath day holy. We don’t shop (although I will run for meds) or go out to eat. We go to church, do church things, and are together as a family. Consequently, we all get to spend more time together and with Bella.
How many Turpins can we cram into Bella’s room? :)
This is Lizzy pretending to be Bella – sitting in the Bumbo and using an HME – oxygen attached. :)
I love Sundays!
Monday, January 18, 2010
I didn’t do her hair – obviously. Someone else dressed her on Sunday. :) She has a ton of hair! Water is required to make it behave. It’s so fun to play with. :)
We are still processing all of the info from our appointments this past week. One conclusion we have come to is that Bella likes her ventilator and that’s all there is to it. It’s easier to breathe. It’s easier on her heart. It’s easier. Why wouldn’t she like it? So it’s not going away anytime soon. OK. What does that mean to our family? It means we accept and move on. We are starting to make some plans. Like how to not be housebound. What to include on a traveling checking list. We aren’t ambitious. We are talking about starting with a trip to a neighborhood park, maybe after everyone is better and all the yucky winter viruses go away. We’ll go from there. But first we’ll make sure and do her hair. :)
Saturday, January 16, 2010
One year ago today, read here, we meet our sweet Bella for the first time. One year later here we are, home with our sweetheart.
We love you Arabella!
Here she is telling me everything….. (and I thought the trach would silence her forever…)
This is what Jason told me last night as we discussed the latest from the doctors about our Bell. It’s true. Unless she is in serious pain, she is always smiling. She has such a bright and sunny disposition. I have much to learn from this small sweetheart.
She has recovered from her viral thing. She has some new viral thing – runny nose, sneezing, coughing (sounds like a cold to me). We spent two days down at the hospital (outpatient – yeah!). We saw her pulmonologist and her cardiologist. She had her GJ replaced with a new one. She had labs – seriously wish we had a portacath. She had an ECHO and x-rays.
Long and short of it, her heart is doing OK. It is not the culprit. Her valves are only mildly leaking. Her misshapen valve is working adequately. Her pressure are OK. Her right side isn’t too big. Her lungs are horrible. So her cardiologist is calling her pulmonologist. Hopefully they can come up with something – anything. Her cardiologist is increasing her heart med. If nothing else it helps her lungs. She is doing worse now than in the fall with her O2 needs and her HME trials. Why? Is it the weather? Sigh.
But enough of my rambling….look at the cute girl who happens to like her ventilator, nurses, EMTs, and paramedics.
Saturday, January 9, 2010
Before we got sick, we were able to use the kick board once. She loved it!
Checking out the feel of this funny texture with her feet!!
Kicking and playing with a toy with her feet. She pushed on the board! It is working. Yeah Bella!
Friday, January 8, 2010
I posted the last video because I knew it wouldn’t last. We have RSV. We are currently on 4 L of O2 and praying. She is vomiting like crazy so she is on Pedialyte. Tylenol and Xopenex are helping. We are so hoping to ride this out at home……..