My heart is broken for you. I find your strength awe-inspiring.
Getty is stunningly beautiful.
I am so sorry I haven’t been on in a while. Your daughter is absolutely gorgeous. I’m so sorry for what you are all going through. I’m not sure how to help from so far away, but if there’s anything you need, just ask.
Thank you so much for the videos! I love watching Getty with the pacifier . . . her facial expressions are so cute! And I love how aggressively she tackles Mr. Paci . . . she’s got a lot of spirit. Go Getty!
I am so glad that you guys are able to treasure moments like these with her, and so grateful that you can share them with all of us.
Getty is beautiful. What wonderful eyes.
the picture with the headband flower thing is my favourite. you can see her personality shining through.
Her giggle is too much!!! What a treasure she is.
How are Kate and you doing, Bearflag?
Very cute little angel. 
I love the video with the balloons. Love her eyes. She’s studying so hard, learning so fast.
She’s beautiful.
Just pulling this up, really.
I read Sunday’s update on CaringBridge so I have some idea of your feelings about all the tasks that must be juggled. Be sure to keep some time for you and Kate, your little owlet is a happy baby at the moment and it’s important that you both manage to feel happy too, not just put on a happy face. Babies can sense their parents’ moods.
Wonder how Chessic Sense is doing with the t-shirt project, btw.
I sense that SMA just got a major advocate and educator who will be a huge addition to families dealing with this disease.
Your daughter is gorgeous!
Don’t forget to give what you can folks. The Little Owl needs us.
Thanks everyone for your support and kindness! I am trying to recover at work for what has been essentially two weeks of unscheduled personal time off. Since I work for myself, I have to pick up all the slack myself.
We couldn’t get the Kaiser co-pays waived. That means every time we see a different doctor (neuro, gastro, genetics, nutritionist, pediatrician, etc.) there’s a co-pay. We’re going to see multiple doctors on Sept. 7, so there’s $100 or so right there.
The credit card companies were only marginally helpful in postponing this month’s payments. The mortgage company was not helpful at all.
Found out today … New vet bill. The dog is suddenly acting all weird, is highly timid, shaking, and is afraid of the couch. Getting blood, stool, and urine testing done.
Both cars need annual registration. Found out today … mine needs a smog check.
Found out today… Mrs. Bearlag’s car needs new tires, like now.
I’m not posting this as an implicit request for funds. I’m posting it in frustration. Life is twisting the knife.
Anything else can go wrong? Bring it on. Fuck it. Sheesh!
Geemanie. HUGS Hang in there Man!
Thanks. The mortgage company was a joke. I explained we had a horrible family medical emergency, I work for myself, my cash flow is uncertain right now, and we need some relief on the payment.
They generously offered to schedule, by phone today, an automatic checking account deduction for the end of the month so I wouldn’t have to worry about sending in a check.
Gee thanks, assholes. :mad:
How Generous of them. Bastards.
Oh, tentative diagnosis on the pooch is food allergy.
Contact Representative Doris Matsui
Sacramento, CA Office
Robert T. Matsui United States Courthouse
501 I Street, Suite 12-600
Sacramento, CA 95814
p: 916.498.5600
You would be amazed the things your Representatives in Congress can get done for you in the district.
The only thing I have to offer you is my time, as I’m not working now, myself. But if you can think of any way to take advantage of that, let me know, and I’ll do whatever I can.
Bearflag70, I just want you to know I’ve been following your story here since your first post, and I’ve shed many a tear for your little owl, and for the two of you. I’m so sorry you find yourself in this situation, and it must be even harder because despite her difficulties with her arms and legs and lifting her head, she still seems healthy and happy. That must make it all seem a bit unreal, somehow, just knowing what MAY happen and having to wait and watch. I suppose it may be easier, in a way, than finding out after she gets sick, and not have the time to enjoy her good health. But still…I’m so sorry.
Bearflag70 I too wanted to let you know that you & Getty are in the thoughts of of another anonymous person on the internet. She is sooo adorable.
I have worked in a nursing home & there are thickened water products produced for people that cannot manage thin textures. You may want to look into them. Also you can just get a can of thickener that you can just mix into any regular thin liquid. (maybe even the regular strength formula) Not sure what it is made of (corn starch maybe) or if it is a dietary concern to a little one, but is is something to look into as it is used for very frail elderly people requiring a thickened texture. Even though water is not as harmful when inhaled it is better if Getty used her strength in other more pleasant ways.
Sending lots of internet hugs & tickles to your sweet little pea and lots of strength & love to you and Mrs. Bear and a settled tummy to the pooch.
Just checking this thread to see how you’ve been doing. I’m sorry everythings coming at you at once. Stupid mortgage company!
I’m just another anonymous person from 3000 miles away that cares and thinks about you daily. Your story has touched me deeply.
If only I had a magic wand, I’d give it to you. .
Oh, I’m so sorry, Bearflag! I haven’t been on much lately and just found this thread today. Count me in as another crafty Doper who would happily contribute to a silent auction or Etsy page.
I also second the recommendation to contact your local State Rep. They have a lot of pull and can be remarkably helpful.