Jones' Family Update
#11 11-07-2019 
After reading what my google-fu found - wow! Can she take the medication sapropterin (Kuvan)? almost sounds like she'll need to become a vegan. Which, if she can master that [diet], means she won't have weight problems dogging her her whole life (according to my vegan friends anyway.) Hubs and I lived on a cow-farm when we were in seminary - it was easy for us to avoid beef during that time; but we couldn't ever make it to full vegetarian mode. We tried. Didn't happen. Sir Paul has long been a hero of mine - he's vegetarian (not vegan) - and he has lived a very healthy life (well, once he got away from a few 'substances' in the 1970-80's!)
Good luck, Bay! You can do it!!!
Do any of you have the time (and space) to take care of a garden? That's the least expensive way to get fresh produce. But, it takes a lot of time and hard work/dedication to grow enough to feed a large family like you've got goin' on there! ...yes, I'm super-jealous of all your kiddos... I wanted three. Got one instead. *sigh*
Is there a co-op around that you can join in on?
Please find time to put your feet up! And, I hope the new baby will be happy and healthy - and come out quick and easy! Celebrate

#12 11-07-2019 
A happy update: My cradle, yes, as in the cradle I had as a baby, is here and waiting for Quinn. Grandpa Truex made it for me. It's a nice, solid, strong wood cradle. Bailey slept in it once or twice at Dad's when she was a baby. Now Quinn will sleep in it all the time till she's too big/mobile for it. ALSO, MY COOKIE JAR!!!! I didn't know it was coming. My Dad had to downsize, so some things are heading to our house (like the giant court cupboard and Grandma's rocker, but that's a different trip). Dad specifically asked about the big pieces, to make sure we could fit them, but said he might throw in some other stuff if he came across stuff. The cookie jar has always technically been mine. Grandma painted it for me when I was born. I've been waiting for years to get it. Didn't know it was coming. The second Uncle Dave said, "...and the cookie jar is in this box..." I yelled "MY TREE HOUSE?!?!?!" (It's a Gnome house in a tree stump) I can't tell you how ridiculously excited I am to have the cookie jar. The girls also now have some "new" movies. Kid/family movies that Dad had for my (17 yrs younger) sister when she was little. And an air conditioner! Aunt Mim said they brought the cradle and air conditioner this trip since they were the most needed Wink I'll grab a pic of the cradle and the cookie jar later. They also brought some Bay's new diet friendly groceries. Uncle Dave is low carb because he's diabetic, so they knew of some things they use/like and got stuff for her/us to try. Plus fresh veggies and chicken and stuff.

#13 11-07-2019 
YAY!!! ...for happy updates Heart

#14 11-07-2019 
I don't think I could manage a garden. I can't even keep house plants alive... And I really don't have the energy. With my anxiety and depression, I know it would not be a successful venture.

Oh, she ought to come out easy enough Wink Already know it will be a c-section, the other two were as well. And I'll be completely under, because the numbing doesn't work for me. Had to be out for the other two as well. C-section has it's advantages, but a longer recovery period (and harder for breastfeeding, I wasn't able to with Bailey or Elise. Tried with both, will try again). And our bed is cheap and sags horribly in the middle so the couch it will be for me for a while after Quinn's born. No way I could get in and out of our bed post c-section.

There's a 25% chance Quinn could have PKU too. Both parents have to pass the gene on, so there was a 25% with Elise too. Good news is, if Quinn has it, we know what to do, and she would have the mild form too, because the genes Brandon and I carry aren't for Classic, just the mild form.
(This post was last modified: 11-07-2019 05:55 PM by justJones.)

#15 11-07-2019 
Prayers, hugs, warm fuzzies, and happy thoughts - all projected up your way! Love you!!! Heart

#16 16-07-2019 
Congratulations Joni! I'm very much looking forward to 'meeting' little Miss Quinn in a few weeks time. Try the family with some red lentil and chick pea dishes - cheap protein rich foods. I can provide some recipes if needed.

#17 23-07-2019 
Bailey had an appointment yesterday at Children's to discuss the EEG results in depth and what we do next, but had to reschedule because we don't have the gas to get to Columbus. They had an opening tomorrow which we took but I might have to reschedule again if I can't figure out how to get gas. Next available opening isn't till Aug 5th, but we'll do what we have to. She had another seizure early Friday morning (about 1:30 AM). So it definitely wasn't a one time thing. I've been incredibly stressed about the whole situation. Bad things happening to my kids (or even just the imaginary thought of) is my biggest anxiety trigger. And with Cameron Boyce ( 20 y/o actor) having died from a seizure in his sleep amidst all of this it's NOT helping at all Sad So continued prayers, well wishes, whatever are appreciated!

#18 24-07-2019 
Prayers, thoughts, {{{hugs}}} and warm fuzzies sent to you!!!
Your family is top priority on our family prayer list; and I've added all ya'll to our church prayer chain too.

#19 25-07-2019 
Praying for you all, Joni, especially Bay because it must be very frightening for her Heart

#20 26-07-2019 
Yesterday's appointment went well. They're trying her on Keppra. They said the EEG indicated that she's probably having mini absent seizures from time to time during the day and we just aren't noticing, because they usually only last for seconds. If it were just those, it would have been a different med, but since she's had 2 "big" ones, they are trying Keppra, because it's for both and has the least possible side effects. They assured her that she can still do all the things she would want to do, except unharnessed high climbing Wink They were very helpful and the CNP we saw answered pretty much every question we could have had before we had the chance to ask it. We also met with a woman from the Epilepsy Alliance of Ohio who gave us all sorts of resources and numbers/links for further questions/info if needed.


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