Abby

Abby hasn't done very well on her new formula. This week, I spoke with the nutritionist about my concerns. She has had belly pain, swelling, not sleeping, and the ever present nausea. I could also tell she's losing weight. They asked me to bring her in to figure it out.

Yesterday she was in neuro for her EMG, which basically showed she has neuropathy in her legs. I wouldn't have expected her to have normal nerve impulses because of her CP, but the Dr. thought is it was abnormal, even for a neurologically impaired child. Her muscle response to the low nerve signals was better than they thought it would be. All of that means....nothing. They don't know why it's abnormal and there's nothing to do about it.

Thankfully, neurologically, she doesn't seem to have anything else to be concerned about.

The belly isn't quite so good. When we got to the GI Doctor we realized that Abby has lost 6 pounds in the nearly 4 weeks we've been on the new formula. SO not good. I knew she was thinner, but I had no idea she'd lost that much.

We went for blood work, x-rays, and changed the formula immediately. He also ordered intermittent suction the pressure and air in her stomach. We are doing med changes and looking into the medicine the neurologist suggested. The GI Dr. said he used that medicine for years and never had a problem. He said it worked great, so we are seeing what we need to do to get it under compassionate care.

She hasn't been sleeping well either. Actually hardly at all. We are going to try a sleep medicine that also helps with motility. The GI doc is emailing Neuro, just to be sure there are no contraindications. It's very important that she not burn calories by staying awake all night.

**since starting this post last night, she has been much more comfortable on the new formula. She still didn't sleep well, but I am very thankful we made some immediate changes.

- Posted using BlogPress from my iPad

~40~

It's finally here. I'm forty. I'm not sure where I thought I'd be at 40, but I'm sure it's not here. Not here. Every day, the same here.

I'm trying to not feel a little depressed about being half way through my life having so few answers. So, I'll focus on what I know now that surprises me about myself.

~ I love sushi! It's so yummy. I hated fish well into my 20s, so the fact that I'll happily eat it raw now astounds me. I'm so glad I figured that out.




My birthday dinner :)

~ I'm much stronger than I thought I could be. Growing up, I wanted one thing--normal. I wanted to blend in. Nothing flashy or extraordinary, I wanted what I thought everyone else had. We definitely do not blend in, and our life is so intense. God has supplied what I did/do not have. Miraculously, every day I am able to get out of bed and do what needs to be done.

~ I am so much weaker than I thought I would be. I wish I could say each day was met with grace and courage. That's who I want to be. Most days I don't want to do this. Most days I'm tired and wish I could know my girls without disabilities. Most days I wish I could accept what is without so much wishing.

~ I have an amazing support system. Family and friends have carried the girls and I through it all. Knowing they are with us makes each day a little easier.

~ I can almost always run at least a mile. I like that.

~ marriage is a good thing. I was barely 20 when I met my husband- absolutely unprepared for life at all, much less the life we have. We've worked hard at it and hung in there together. I never want to think of life without him <3

~ I stop for turtles. It bothers me to see them slowly cross a road. If at all possible, I stop and move them to the other side.

~ I always root for the underdog. Always.

~ I don't like to talk to anyone in the morning before I've had coffee. I need time to wake up. :/. That's being nice, I'm a little mean before my coffee.

~ I grew up with my mom who brought us to a very charismatic church each week. It scared me to death (sorry mom!). I never thought I'd go to church at all, much less write about relationship with God. I thought churches we're scary, crazy places. Having spent a lot of time in church now, I wasn't entire wrong. It is scary to go into a new place, but if they're crazy, I guess I fit right in. My church brought so much support and laughter to my life. My faith brings peace and comfort that I couldn't have understood. Even through my fears of religion, my love for Jesus, and His for me have been my lifeline.

~ I love writing this blog-- and appreciate each of you for taking this journey with me.

40! Maybe it will be fabulous?

--Abby update soon!

- Posted using BlogPress from my iPad

Hard choices

When Emily and Abby left the hospital for the first time they were 2 months old and fairly healthy babies. I remember thinking how blessed I felt that they didn't have more health problems from being so premature. I thought (naively) that we were home free.

I was shocked the first time I heard of an older child with CP getting a trach because of complications. Her mom told me it's never really over. It's really not. There are always new challenges.

Abby saw the neurologist yesterday, who of course, thinks Abby's problem is GI. GI thinks her problem is Neuro. Go figure. The bottom line is that something has to help her. She is in a terrible limbo. She's not better, she's not worse. We are going to do some autonomic nervous system tests next week. He's looking for other syndrome's that could be contributing to her illness.

Part of me wanted to say no thanks, we've done all we're doing. But I can't say that. I know I won't do anything else invasive on her, but she could have some things going on that can be helped with medicine. He also suggested trying a med for her that has been pulled from the market for having the possibility of serious heart complications. He thinks the benefits of the drug for problems like Abby's would outweigh the risks.

He felt very strongly about quality of life over quantity. Nothing says that Abby would experience the heart problems, but we would have to go in to it knowing that if it made her more comfortable there could be significant trade off.

So do we risk her life to not have to see this face everyday?





That's not an easy call. We definitely have to pray about our next steps with her. The easy answer should be "no way do we try a medicine that caused sudden death in 10% of users". She isn't an easy answer kind of girl and the doctor and I feel like she's miserable enough to consider it. Her life is also at risk with the central line and the non working belly, so that makes this a question of comfort.

To end on a positive note, I went to a church I liked last Sunday. I'm not sure where Emily and Abby would fit, but we'll see. It was good for my soul to enjoy worship/sermon so much.


- Posted using BlogPress from my iPad

New formula

I wanted to be able to say that the clouds parted and the sun shined down on Abby the second we started her new formula, but I can't.  It was unrealistic to even want that.  Kids like mine don't transition to new things well and Abby is no exception. 

The first night I started it, I immediately had to slow it down to 40.  She seemed to have stomach pain and was up all night.  The next day she had some belly swelling and then an episode where she got really pale and started sweating profusely.  Today has been tough too, but a little better than yesterday. 

She had her GI appointment this morning.  Incredibly, she's gained 1 1/2 pounds.  That's great news for her and the first time she hasn't lost weight in 6 months!  Thank you God!!  She did have a cellulitis at her g-tube site that needs to be treated with an antibiotic.  It's red, puffy and bleeding some.  I've also noticed a little blood in her belly when we vent the tube this week.  They think it's all related to the site infection. 

We got lot's of blood work and a belly film too.  Hopefully it all looks good. 

Overall, we're going to keep trying with the new formula, stick with the same IV fluids this time,and  increase her Zofran to 4 times a day scheduled instead of as needed.  We are also going to try a different venting technique to try to help with the air in her tummy. 

Please pray with us that this blenderized formula is something she's able to tolerate and that she'll finally feel a little better!  :)

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!!