Really sorry to hear it, although from your previous posts i wasn’t especially hopeful anyway. Seems like they were confirming what you all already knew.
Wishing you and your family all the best for the tough times ahead.
I’m so sorry, Bear, I know you must have hoped against hope that the diagnosis would be different. I wish you and Owl’s mom strength to live through these times and cherish all the good moments.
Feeling exhausted more than anything else right now.
Do you mind if I offer you a Bear-hug? 
Seriously, my thoughts and prayers are with you, and your family!
So sorry to hear it, Bearflag. I know it’s not a surprise, but still. Hard day.
Don’t forget to take care of yourself and Mrs. Bearflag while you’re taking care of your owlet.
Huge hugs to the entire Bearflag family, and special little ones to the owlet. Also a few purrs from my cat.
<sigh> Not unexpected but bad news nonetheless. Hugs to you and your family.
So sorry bearflag.
Fuck. Yeah, no surprise but it’s got to be a punch in the gut having it completely certain… there’s always that hope it’ll be something less awful.
HUGS to you and Mama Bear and Owlet.
I just want to say that I’m really sorry for what you and your family have to go through, and I’m so amazed at how strong you all are. I know you don’t really have much choice … but I’m still amazed. I hope tomorrow brings some happy moments.
I’m sorry, Bearflag.
StG
I’ve been reading this and I just haven’t had a clue what to say. I’m so sorry for everything your family is suffering through, Bearflag70, and I hope things turn out much better than the doctors are saying they might.
Bearflag, I’ve typed and deleted too many times trying to find the right words. There aren’t any.
(((((Bearflag, Mrs. Bearflag and your beautiful baby girl))))))
Say what you will about the US health care system, but my wife is planning on going back to work asap, part time, to maintain the health care coverage for our little owl.
Her school district does not permit sick or vacation day transfers. :mad:
I may have to end my self-employment to try to get affordable health care just in case my wife needs to stop working in the event our girl’s health takes a hit. I have no idea if SMA would be excluded as a pre-existing condition if I went and got a regular job.
We figure it is better for Mrs. Bearflag to work now, while the little owl is relatively strong and healthy. If she takes time off work now, she will be burning through all available leave benefits immediately, but that will leave her with potentially no available leave benefits later down the line when our owl’s strength drops. Better to save the leave benefits for a time when they are most needed.
However, Mrs. Bearflag does not feel she can work full time now under the circumstances, which I completely understand. So there will still be an income shortage to think about.
We go back to the neuro in early September. We will meet a pulmonary, gastro, and maybe some other specialists. We hope to get a pulse oximeter and establish baseline stats.
We also need to get an infant car bed instead of an infant car seat, which can cause breathing difficulties.
I am so terribly sorry. There are no words. What you all will have to endure while grasping all the simple joys you can is unimaginable and I wish there was something we could do to take all the bad away so you could just enjoy the time left without fear or doubt of the future, the way it should be. I hope the consultations in September yield useful practical plans of action to make the best of your time together.
We’ve got broad shoulders here Bearflag. Tell us your worries and tell us your needs. We will help in any way we can.
Considering employment for family healthcare is a good idea but please check out medicaid too. It varies a bit state by state but they’ve done a good job picking up overages on my cousin’s handicapped baby’s health costs.
We are going to look into Medicaid and also Kaiser co-pay waivers.
We are also getting great little tips through FSMA, like the car bed and water therapy. She gets a water bath every day now.
Another great tip involves feeding an SMA baby. We have been using normal powdered baby formula with a slow speed nipple because she tends to choke a bit on medium speed nipples.
However, we know she will develop swallowing difficulties and will eventually start aspirating her food. So we have thickened up the baby formula by using less water which makes it easier for her to steer the food into the esophagus.
However, sucking a thick formula through a slow nipple can cause her to get fatigued when eating. To offset, we now use a medium speed nipple instead. We call this combo the THICK-MEDIUM.
This has worked wonders in terms of feeding. What took her about 20 minutes to eat before now takes about 10 now, although that speed will eventually slow.
An SMA symptom and a side effect of a thicker formula is constipation. So, every now and then, we need to feed her straight water. There is a higher risk that she will aspirate water because it’s thinner. However, it is much safer to aspirate water than formula.
The learning curve is steep. It covers everything from practical tips to genetics to emotional outreach to health care coverage to medical care to personal finance.
Anyway, please look at the caringbridge site soon. Our photographer is a college girls’ volleyball player, and she made a team poster to support our little girl. I must say the poster is freaking breathtaking!
I just found this thread. I’m so sorry BearFlag.
Mods, can we get a sticky attached to this thread please?
'Scuse me. Something in my eye.
We have some new photos up on caringbridge photo section if you’re interested.
I love her eyes! At first glance, she is very like her Mum but then on looking a bit longer, she’s got a lot of you in her. I love the three heads one - so cute!