Saturday, April 27, 2013

Family time!


We took Leah to the California Science Center to see the Blue Planet in IMAX, and the Ecosystems exhibit! The big screens help her see better with her glasses and it gives her a lot of interesting visual stimulation.
We did have a little scare where she desated to 59% in the car, on the way back, but it was actually due to her coughing really hard, which is a good thing. Typically, she would just desat form the secretions plugging her airway, but this time she was coughing it all up, and because she forces it out so hard, it's difficult to fill her lungs back up, unless we bag her, so she did turn a little blue.
But I was able to bag her and suction the secretions out and she recovered just fine, but still a little scared of course.
She also peed in her diaper today, all on her own without being cathed! I was actually just about to cath her and when I opened her diaper to clean her, she was already peeing and she peed a lot, almost 9.3 oz of urine, so that was really great. I hate to have to cath her all the time.
We did yoga last night and she did some poses to stretch out her quads sand and she was so relaxed afterwards, and I gave her a baby massage with some new natural body butter we got at the farmer's market the other day, it's sort of aromatherapy as well.
This morning she took a warm bath with a bath bomb that my friend Daniela gave me for her from Lush, smelled so amazing, it has rose petals in it. Leah loved it, she was so peaceful and relaxed sleeping in the tub.
She is also having her yoga teacher come over tomorrow morning, thanks Dan Ward Yoga!
I'll update again on the blog with more pics tomorrow
peace and hugs
Frani

Tuesday, April 23, 2013

PICTURES!

Here we are on Saturday morning when we brought her into our bed

Bath time!

Leah gets a baby facial

At Roxbury Park

Me and my baby girls

Hello Miss Leah!












Monday, April 22, 2013

Update! Happy Earth day!

Hey everyone,
Happy Earth Day!
It's been a while, but here we go...
Leah has been doing ok. We think she still might have some sort of respiratory infection left over from the last one, a couple weeks ago. She had to go back to the hospital to receive some heavy antibiotics through IV, but she's been home for about 2 weeks. We are probably going to send some trach secretions to test for an infection, along with a urine sample too, just in case.
As some of you may know from the facebook page, we've also been hosting our friend Phil (who we met through Leah's FB page and we've known for a little over a year) at our place, since he recently moved to La for work and needed a place to stay while we found an apartment. He was a great guest, helping us out by cleaning around the apartment, and walking Leah's new puppy, Roxy.
The weekend went great! We started off the morning by bringing Leah in to our room, with her travel vent, suction machine and oxygen tank and snuggled with her in our big bed. It was great to be comfy in my bed and hold her in my arms and nap, since we had gotten up at 7 am, we were a little sleepy. After our nurse Richard came over at 3 pm, we went shopping. We had some Target gift cards for Leah's birthday that we had to use to buy her some new clothes, so we got her some summer dresses, since most of her current dresses are too small and are used more as tops. We also got her an adorable sun hat, to protect her face and sensitive skin from the bright LA sun.

On Sunday we woke up early again and she got her very first yoga session! I take a yoga class at the gym at work, and we have a great instructor called Daniel Ward. I really like his class, since it's for all levels and he's very down to earth and just a very positive attitude. I asked him at my Wednesday class what he suggested doing with Leah, since she is in bed a lot and her PT is not really doing much for her. I wanted him to give me some advise on some stretches but he went so far as to give me his email address and offer to come to our home and do a session with her. We set a date for Sunday and he came over that morning and worked with her. It was great to see her respond as much as she could, and I think she really enjoyed it, since she relaxed a lot. He made a lot of interesting points just about how much she can sense and feel, and how yoga can really help her make connections in her body. There are parts of the body that become atrophied if they are not used so, helping her make those connections and try to use them will help her a lot.
He even offered to come over every week and do sessions with her, and he is donating his time, which I was just blown by, since I did not expect that at all. But of course, he's an awesome human being who just wants to share his knowledge and help people, so thank you Dan!! He has 4 little girls, so he knows what it's like to be a parent, and they all follow Leah's page now, so thank you guys for joining the cause! :D

After yoga, we did a little experiment, that I had wanted to do for a while. We put her on her travel vent and brought her into the bath tub, and I got in the tub with her! I hadn't had a bath like that with her since she was a month old, so it was exciting. and boy, did she LOVE floating in the water! I held her head and shoulders so her trach wouldn't get wet, and the rest of her body floated int he warm bathtub. She fell asleep so fast! I was moving her legs around and just let her sway side to side in the water as she floated. It was something very beautful and we are going to be doing that with her every other day before I go to work instead of her usual sponge bath in bed. I did it again this morning and she loved it, of course. Who wouldn't love to soak in warm water and get bathed and a baby facial? Lol, it made me happy to help her feel more comfy.

Later in the day on Sunday, we took her to Roxbury Park, which is close by to us. It was a big caravan, with Leah, Zev, Phil, Roxy, Grandma and I. It was a beautiful day yesterday so I'm glad we went. Roxy got to meet some other dogs(she's still so scared of them) and Leah was laying under a tree, with her glasses on, looking at the leaves sway int he wind. It was a great time, just fun to go out as a family. Even though we had all this stuff, it felt totally normal, which is really what we want for her. To just have a normal life, as normal as it can be, with what Leah has.

We got some stuff in the mail, and we wanted to share it with you all, as well as thank those who sent us letters. We are posting a video right after this post, so you can check that out here:
https://www.youtube.com/watch?v=JQrjDl6CxSY&feature=youtu.be

 Pics from the weekend will be posting soon (I am uploading them all now, so I'll edit this when they are ready)

That's it for now! I'll try to post again sooner than in 2 months, lol
;)

Peace!
Frani

PS: It's earth day today, but we should all think about keeping the earth clean every day. Even if you just do 1 small thing to help, it makes a difference! Recycle, use canvas bags, use metal water bottles instead of plastic, go solar power, but most of all, learn as much as you can about what our planet and how we affect it and share it with others
Here's my share for the day...it's a funny one, sort of..
http://www.upworthy.com/the-one-where-the-weather-lady-starts-telling-the-truth-a-little-too-much-truth-to-be-honest-9