Randoms

I never know how to start. What do I say? On the rare occasions I leave the house, my head is filled with what I'd like to write. Words and ideas jump around my little brain, then I get home and, nothing. I would love to have time to gather my thoughts and write. Home is not the place for that. ;)

~ The kids finish school in 5 weeks. I'm trying hard not to panic. Summer with Emily and Abby can be tough. We all know that they are not always easy-breezy. I keep hoping they'll out grow all that fussing, but since they are 14, that might not happen.

~ We have been waiting for the program that will get us some help with the girls. It's a long process. Unfortunately, I don't think it will be in place before summer. To say I'm concerned about this is an understatement. I'm trusting that we will have what we need, whatever that is.

~ My new iPad is fun, but not what I thought it would be. I thought I could use it like a lap-top. So far, that isn't the case. I don't like the blog app, and it doesn't work the same online as it does on a PC. I need a laptop. I can't tell Jeff yet, since I just bought this pricey guy. Soon, I'll have to work on that.

~ Easter morning at church with my mom. Cute kiddo's, right?




~ Abby's still struggling with the belly. There are always problems, some worse than others. The new formula is good in every way except one. The potty. My poor girl can not go on this stuff. I don't know why. The doctor doesn't know why. We've given her so much stuff to make her go, her intestines are irritated from it and bleeding a little. I am trying to work on it because I don't want to give up on the formula.

~ I want to find a web designer. It's time to do this blog right.

~ I sent doggy DNA to determine our new puppy's breed. I can't wait to see what she is. I wouldn't be surprised to find Tasmanian Devil/ Honey Badger mix. The girl is a handful. Hopefully, understanding her breed will help us better understand her personality traits.




~ Emily's seizures have been much better controlled by the med increases. She has side effects from the higher dose though. She wakes up often with very blue fingers even though she's not cold. The pediatrician said as long as her mouth wasn't blue too, it's ok. She also has many days that she's not hungry at all. She gets flushed on her face, neck, and arms after her dose at least once a week. We see Neuro this month to review and decide if we are still on the right path.

~ Abby has slept better this week. We gave her sleep medicine 2 days. The first, she stayed up all night crying. The second, she slept all night, but was very sleepy the next day. I haven't given it since because she's slept ok. Thank. You. God.

~ Hannah comes home May 11th. I can't wait.

~ Emily is funny.
http://m.youtube.com/watch?v=A6tjvQigBDI
That's it.

~ The GI Dr. ordered this monstrosity for Abby. They just delivered it. It's a suction machine. I will just tell you, that is NOT what I had in mind when he suggested it. Yuck.




~ We are going to a new church. Yesterday, a greeter took Emily, Sarah, and me upstairs to check in to the middle school class. When she came back down, she ran right in to Abby. She didn't know we had two. That poor woman almost had a heart attack. Seriously, chest grabbed and had to sit down. After her heart rate returned to normal we all thought it was hysterical. It was.

~ May will be a busy month. We have lots of Dr.s appointments and I have more to schedule. Hopefully no surprises.

~ The drain hose of my washing just came out and flooded my laundry room. That ends my blog time. :/

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Optimistic

Our last week has been busy, but not bad. Abby is doing better on her new formula, and although she's had a few problems, better is a blessing. She had to go to Dr. today because of some bleeding from her g-tube site and the colon. It wasn't a lot, but enough to bring her in.

As the Dr. examined her, he thought he felt a mass in her abdomen. Paired with the blood, she was sent to x-ray, lab, and have an ultrasound and CT scan ordered.

That doesn't sound good, I know, but a strange thing happened. Everyone in the office was concerned. Except me. I know she doesn't have a mass. I know there is nothing to worry about. I felt peaceful. I was a little concerned about a blockage in her intestine, but not anything else.

As I sat waiting for yet another x-ray, I started to think of Abby going back to school in the fall. I began to make plans in my head. Then she almost flipped herself off the table and I had to pay attention. ;)

I don't know why I believed for the first time today that just maybe she'll be alright. Actually it wasn't a great day, but she was okay through it. Maybe there's a limit to emotional turmoil and I just couldn't muster anxiety for another day. I also know she's fine. We'll do the scans and they'll tell me she's fine.

He did add 2 meds to deal with the current concerns. When I got home, her wonderful Dr. called to tell me her labs could have been better, but they definitely could have been (and have been) worse. Her belly x-ray didn't show a mass (no surprise), but he still wants the other tests.

All in all, not bad. I'm optimistic, and hopeful that she will finally move past all of this. The Broviac is more than 6 months old and looks better than the day it went in. I want it out before it doesn't. I'm not going to worry about that. I'm just going to try to focus on her going back to school and finally having some time to catch up.

Not being worried or anxious today changed nothing other than me. Abby's blood work and scans are what they are. All the worry in the world wouldn't change that. She will go to school when she's ready, so fretting about when that will be is useless. Getting worked up over complications has obviously been pointless this year, so why? Why do we so often go there?

For me, it's an impotent attempt at control. I want to fix it, so I worry about it. It's all I can do. That's what I tell myself, but it's absolutely not what I should do.
I should:

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Phillipians 4:6-7 (nkjv)

I think today, I finally understood that verse.



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Resilient

Sarah got sick this week. She had a nasty virus. It all began with her throwing up all over her bedroom. She tried to make it to the bathroom, instead she walked as she threw up. I realize that is graphic, but it is what it is.

I've got to say that out of all the things I have to do as a mother, cleaning up puke is at the top of my list of things I'd be perfectly happy to NEVER do again. Yuck. Lysol and I have been good friends this week.

She ran a high fever that didn't break easily. I've been through so much that a little bug in a healthy child shouldn't bother me, but it freaked me out! Of course, first, I think of Emily and Abby getting sick. Hopefully they won't. Then, I realized I was completely at a loss with Sarah.

I didn't know what to do for her. I know where to start with my complex kids. What I didn't know was what to do without a g-tube to slowly drip Pedialyte in? I can't exactly run extra IV fluids until the fever passes. I couldn't sneak in the middle of the night and give Motrin through the tube.

I am so used to such sick, fragile kids that can't run high fevers without me thinking of seizures, central lines, or hospital stays. I forget how very resilient typical children are. Sarah can make it through a night with a fever just fine. She wakes up, drinks a Gatorade, runs a fever all day while laughing and playing with her puppy. She's fine. It's easy.

The initial panic I felt was completely based on Emily and Abby. Nothing is ever simple with them. Even when they are fine, it's only because we are working hard.

This week was a good reminder for me. I need to remember that everything isn't always hard. Some things are normal in our lives. I am so thankful for Sarah. Time and time again God has used that girl of mine to help we take a breath and center myself a bit. I sure do love that sweet child and feel incredibly grateful for her resilience.


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Be nice

My long silence lately has stemmed from the old adage "If you don't have anything nice to say, don't say anything at all".

The girls have been so difficult/ challenging/ overwhelming lately, that I thought it best to keep my mouth shut. The kids were on spring break, so I took a break with them. One thing's absolutely certain- I need help for the summer. I've been on my own since August and it's just too much. They are not the kind of kids who wait patiently for anything.

They are running me down, but we all went to church this weekend together. It was the first time since we moved that we brought the girls. It felt so good to be back in church as a family. The sermon reminded me that I always have something nice to say and there is always something to be grateful for.

I am grateful for what we have and our family. It's just so hard to stay focused on that when Abby is all consuming or screaming children fill my time. I know I say 'screaming', but this is what I mean:

http://www.youtube.com/watch?feature=player_detailpage&v=Yvb6BHHr5OM

I wasn't just videoing my screaming child, she was calm and I was going to make a little clip for Jeff, but it became a 45 second glimpse of my (and their) very hard week. I went back and forth between Emily and Abby all week long. It's sad and upsetting. I want so much to enjoy them and I have many sweet moments that I treasure. We just have so many challenges.

Anyway, back to the nice talk.   I have lots of pictures and nice moments I'm going to post.  We also had some funny and not so funny moments.  I guess for better or worse, this is our life and I'm going to write about it :) 

Andrea

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