Emily and Abby update

The last month has been very difficult for sweet Abby.  The poor girl has been terribly nauseated.  I'm not sure if it's worse than before because I can't see the forest for the trees, but it's pretty bad. 

Each day I wake up and know I have to feed her.  Each day I wish I didn't.  It's terrible to not want to feed my child.  Everything in a mother from the minute a child is born says "feed them"!  Dreading it is unnatural.  But every time I hook up her tube she is sick. 

When I was pregnant with the twins I was horribly nauseated the first 4 months.  All day, everyday.  It was absolutely miserable.  The memory of those months surface daily as I watch her suffer with it. 

Last week, I realized how long she'd been on the same formula with no progress whatsoever.  So I called the nutritionist and asked what we could do/try.  She thought we should try a new blended formula.  It's actually made from real food instead of modified ingredients.  We're not sure if Abby can process a formula like that, but we have to try something else.

It's taking forever to get the new formula, which is frustrating because I almost never get all of her feeds in her.  I've been working with changing the times around too.  That's not going as well as I'd like, but again, just trying something new. 

She got a new wheelchair last week too. I was so excited about it and it is really nice, but as is so often true it has some issues.  The biggest one is the foot rests are not right.  I thought they would do until the new ones came in, but she has a nasty new pressure sore on her foot.  I am so upset about it.  Her feet are a mess.  It's a constant struggle to keep them protected.  I see a Dr.'s appointment in the near future about it. 

New wheels

Abby started home-bound services through the public schools here.  She really loves her teacher, but again, struggles with feeling bad. 

Emily is doing alright.  We are doubling her seizure meds to try to get on top of her various types of seizures.  That will put her at the max dose for her weight with this drug, so if she's still seizing, we'll know it's time to change drugs or add another to the mix.  We have to go up slowing over six weeks, and are a little more than half way there.  She's definitely having less seizures, but she feels like she's in a fog.  She's having  a few other issues that I'm not sure are related to upping the seizure meds, so we'll see.  :/

Emily and Nola

We have a lot of new things going on. One really awesome, incredible, miraculous thing is that the girls each got CAP-c  grants (community assistance program for children).  It is for children with disabilities.  It supports them in the community to lower their chances of being institutionalized.  We had that program under a different name (med-waiver) in Florida and had helpers for the girls.  When we moved here we were told it could take 5 years for the girls to get it, but we got THE call that there were spots for them. 

I have been really busy doing the tons of paperwork we need for the program.  I am so thankful to be doing it and so far have found NC so much easier to deal with than Florida.  I tried to choose an agency to manage Abby's care that went through a hospice agency.  It's called kidspath and isn't exactly hospice, but it handles kids who have life threatening medical conditions.  Abby qualifies, but they can only take a limited number of kids and they're full.  I was disappointed because I could use some help that most people can't give me. 

I always feel confused about her because she has so many significant needs, but I'm trusting that whoever we get will be able to help me with both of them.  It'll be easier having them both in the same program, so we'll give it a try. 

Also, on a less kid related issue--my computer screen cracked and I can barely see what I'm typing.  My wonderful husband is getting me an Ipad for my birthday!  Love him <3  Can't wait to update more when I can see! 

Hannah and Sarah today--just for fun!!