trying

I'm really trying to be back, but I don't exactly know where back is.  I feel like I'm looking for a way back to something that feels familiar, but it's just not there.  I'm doing alright here in NC.  My days are as carefully controlled as I can make them.  We all walk around on eggshells because we know Abby is still so sick and we're just not sure what she needs.

We took her to the GI specialist here on Friday.  I was so thankful to get her in so quickly and it seems like it'll be good for her.  They have a motility clinic with doctors that specialize in GI dysfunction.  I hope when we go to clinic next month we'll get more answers.  The doctor we saw on Friday wanted to put her in the hospital, but I managed to talk her out of it, at least through the weekend.  We got IV fluids delivered to the house, so I thought we could last a while longer. 

We are just struggling through feedings and horrible nausea most days.  I wish it was possible for her to not eat at all.  I just dread hooking up her feeds everyday.  I know she needs it, but like I've been saying for months, I wish she didn't.  I want her off of IV fluids.  The broviac is like a ticking time bomb.  This one is much more difficult to maintain.  It was red around the site last week, but we got some bactroban on it and it seems better. 

We still ended up in the ER with her on Sunday anyway (because what else would we do?).  She hit her hand on a display desk at Walmart on Saturday and it bruised so badly, I thought it was broken.  Thankfully it wasn't, but it looks awful.  Her low platelets and maybe the heparin she's on for the line are making her bleed a little more than normal, so it looks much worse than the injury is.

Emily has started school and is doing well.  So far, I am much more impressed with the schools here than in Florida.  They seemed excited to get her in and working and they had no problem putting her in the gen ed.  She's been really happy.  She's gaining weight and overall doing great.  We started feeding her by mouth again and bolus feeding through the G-tube (not the J she got for the SMA syndrome).  Tonight her G-tube clogged and I could not get it moving.  I tried everything but it just wouldn't work.  Since we were feeding through the G-tube anyway, I decided to pull the g-j tube and put in a regular old g-tube.  I was nervous about it because of the length of the tube, but it was fine.  I'm glad it's out and we're back to normal with her. 

Sarah is adjusting to middle school fairly well.  It's a transition for her, but she's starting to catch on.  She's not loving all the homework and I'm not either, but we're handling it. 

Hannah is extremely happy and doing great at Pfeiffer.  I hope she's studying and doing well, but we'll see ;)

Overall, I just want off this train.  I am so tired of going through so much.  I'm leaving Abby this weekend for the first time since last October.  I'm going to our annual women's retreat at our church.  I really need this time, but leaving is hard.  Abby is precarious at best.  I don't really feel safe leaving her, but I need to go.  I need to spend some quiet time with the Lord and hear what He is trying to speak to my heart. 

Our journey in the last year has been unbelievable.  I've got to somehow come to grips with where we are now and try to live in this moment.  Sometimes when Abby is having a really hard day, I pick up that long 13 year old girl and hold her in my lap in the recliner.  We rock and talk and I look at her long, sweet fingers and kiss her face.  Being able to climb up into her mommas lap and be held takes just a little of her hurt away for minute. 

I really believe that our faith should be able to provide that same sense of security and relieving of burdens that Abby gets from me.  I should be able to climb up into the Father's lap and find peace.  I should be able to snuggle into His word and find comfort.  I haven't found that lately and I feel more lost.  I'm praying this weekend will be that time for me.  A time to renew and refill.

Please pray that Abby would hang on through the weekend out of the hospital and fever free.  Pray she would have a great time with her dad and grandma and that they would be strengthened as they care for her.  It's not an easy job.  :)