Answers

I'm sorry for my long break.  It's been hard for me to think of what to say.  I feel like you've all heard it all before.  She's still sick, I'm still tired and trying to make sense of it all. 

We did get some answers from Abby's recent testing.  We fed her six hours through her stomach as sensors recorded the contractions of her intestines and belly.  She also had an endoscopy.  That showed that all of the previous ulcers had healed (Thank God!!).  Her NISSEN looked good and although she had some minor irritation in the part of the intestines right where the stomach empties, she looked generally good.  They took several biopsies, but that is a HUGE improvement from last time. 

As far as the other test goes, it could have showed that she had weak contractions of the intestines that didn't push food through effectively or possibly uncoordinated contractions that were equally ineffective.  What she had was very long periods of inactivity (which explained the swelling and pooling of food we see) but when it did work, it was fairly coordinated and likely strong enough.  That led to one very unpleasant answer.  This is neurological. 

We didn't want it to be that.  Her brain is simply not communicating with her belly consistently.  That is why she has long periods of not moving food through.  Then when she does send the signals, it seems to know what to do.  The Doctor said that it's a part  of her autonomic nervous system that controls it, and there is nothing we can do.  We are going to try to come up with a combination of medicines to make her less nauseous.  She also got a new G-J tube before we left.

When she left the hospital, she was so sick and pale.  She wretched and gagged.  We went to Virginia for the weekend to have Christmas with my family (the first time in many years).  I was so excited, but Abby was so sick that it was hard.  I wasn't sure why she was having such a consistently hard time. 

When we got home, I called the Dr. about Abby.  I was having an extremely difficult time getting her feedings in her.  She had formula in her stomach--which shouldn't be there and needed frequent venting and constant nausea medicines.  I still couldn't get her comfortable.  She looked awful.  The agreed to take a look at the tube placement.  We went back to the hospital on Wednesday.  Her J-tubing had looped in her stomach irritating it.  It also  wasn't far enough into the small intestines allowing her food to back up in her stomach.  They were able to reposition the tube.  She felt so much better.  She's still sick, but not even close to what we were dealing with.  That was definitely another answer.  I was so scared that she was just suddenly worse and there was nothing we could do for her.

Emily has had several seizures in the last week.  One as soon as we got to Virginia and sat down to lunch with my family.  She had 3 yesterday.  One of them lasted about 4 minutes with her hands thrashing around and her head turned to the left.  It was the first one I've seen like that.  I think we may need to adjust her medicines. 

Christmas is only 3 days away.  I can't wait.  I'm so excited to relax and do something normal.  I can't even tell you how happy I am to think about sitting with my kids as they slowly open presents.  I used to worry so much about what I would give kids that couldn't do what others do. 

This year, I've had a really hard time picking presents for them.  They are so much older now, and it was hard to buy for them.  And I didn't care. I didn't get cards out, but that's okay too.  What I will do is sit with my kids and watch their little hands tear paper.  I will think about a baby born more than 2000 years ago.  The child that came so that I can be sure that no matter what we face, our hope is in Him. 

Merry, Merry Christmas, my friends.  I pray that each of you holds in your heart only what is important as we celebrate the birth of our Lord. 

Random Stuff

Yay!  Finally, Christmas lights shine throughout our house.  That's a huge accomplishement--trust me!  It's my favorite time of year.  Now we even have the cold to go with the season.  It's much colder than I remembered and bundling kids into coats and wheelchairs isn't exactly easy, but it's sweet none-the-less.  I'm doing everything in my power to just enjoy this time and not worry, but that's not easy either.

My tree... I love blue!

 

~I took Abby for a gastric emptying study Thursday. Sounds fun, right? I've been dreading it for many reasons. First, she hasn't had anything on her belly for months now and this test required using the g-tube. Second, it's long. Four hours long. The first hour Abby had to lay flat under and x-ray machine relatively still. Then, she could get in her chair, and have x-rays every hour for the next 3 hours.

She was a trooper. It wasn't nearly as horrible as I expected. I think it will show what we already know--her belly doesn't work. We put 2 ounces in and it didn't seem to go anywhere fast. I couldn't tell for sure, but it seemed to change very slowly.

~She will be admitted to the hospital overnight December 14th for a specialized test that will show more about the way her intestines contract and food moves through. She will get a new g-j tube then and also have an endoscopy. We are really praying that we are able to understand what's going on with her enough to help her be more comfortable.

~She's been having a lot of belly pain lately.  I'm not sure why.  Her x-ray showed what it always shows.  "Moderately dilated bowel with no apparent obstruction."  It's very difficult to focus on the good things in life when she's so sick. 

Abby, feeling a little better one day :)

~We took the girls to the library today and then to dinner Saturday night.  It's the first time we've taken them out in a while.  We went to Golden Coral--before any of you throw up, it's Emily's favorite place to eat.  She is all about a buffet!  Abby used to love it too.  She kicked and got all excited when we told her we were going, but when we were there, she just seemed sick.  She acted like she wanted to eat, but couldn't even think about tasting food.  I still think it's sad.  I miss her eating with us. 

~The nutritionist we saw gave me information on  a blended diet for post-NISSEN, g-tube fed kids.  It was supposed to reduce nausea (in the study it did an average of 76%).  It's formula based with stage 2 baby foods, infant cereal and I added her pro-biotics.  It has to go in the stomach and not the j-tube, but I decided to try it.  I gave her 15cc (about 2 teaspoons) yesterday.  BIG mistake.  HUGE!  Oh my, that poor girl was sick as a dog.  I tried to pull it back out, but she gagged for almost an hour.  In the end, that 15cc meant she lost about 90cc of fluids.  Right now, that's a big deal for her. 

~I'm tired of talking about sick bellies.  I write it because I want to remember what we went through, and because people ask me about Abby a lot.  Every time I sit down at the computer, I wish there was something else to say, but there isn't.  This is what we do right now. 

~I've been trying to put into words what all of this has done to/taught me spiritually this year.  As I write, I find there are no words.  Every minute of the day is filled with different all consuming emotions.  Sometimes I am angry--just so angry that I have to wonder how long I will have with her.  Sometimes I am so sad and hurt for her, and for our family.  Most of the time I feel quiet--and if you know me, you know how different that is!  There are no adequate words for what I see everyday or the way that feels. 

~In January, they will be 14.  Fourteen years of laughing and loving--heartache and sorrow, fear and uncertainty; woven intricately into one beautifully terrifying fabric.  We are each wrapped in it, even clinging to it.  It's all we know.  

~I am learning to understand this journey of faith.  Trusting what I can not see this year has been process of daily (sometimes moment to moment) conscious decisions to believe.  In my heart of hearts I always do.  I just have to remember that we are not alone, and however the Lord chooses to lead, we will follow. 

Thankful

Thanksgiving week-- like everyone else, I stayed busy getting ready.  I usually LOVE this time of year--I still do, but in a different way.  I was so happy to see my family to spend a few days cooking and eating and just enjoying being together.  But this year has been very hard and nothing feels the same as it did before.  Even when the twins were diagnosed I didn't feel the weight of it each day that I do now. 

Something about walking this road for so long only to experience the year we have has left me feeling a little disconnected.  I miss my routine and our church.  It helped to center me in a way I'm struggling to find now.  We've tried a few churches and decided whomever wrote Goldilocks was probably church shopping at the time.  This one's too small, that one's too big, another one just doesn't feel right, and I'm desperate for just right.  I know it's out there, so we'll keep looking. 

Abby had an appointment with her GI doctor the day before Thanksgiving.  I really needed some help with her because her nausea was so much worse and I didn't know what to do.  We also met with the nutritionist who could not have been more helpful.  Abby lost a little more than 2 pounds in the month since we last saw him.  That was cause for concern.  We decided to try a different formula (again).  This is one I've never heard of.  All of the proteins are completely broken down, so she should only have to absorb it.  It only comes in 1.0 calories (she's on 1.5 now so she needs less volume).  She'll be getting less calories for a while, but the hope is that she'll tolerate it better so we can increase the volume.  We are also upping her IV sugar from a D5 to D10.  It's not much, but it offers a few more calories.  We are close to needing TPN again, and just trying to avoid that. 

Everyone else is doing well.  Hannah was home for a little break, Sarah is good and Emily is healthy.  I am beyond thankful for those things. 

This year, I'm thankful that our family is back together and we are moving along.  There are always things to be thankful for.  It's not the automatic smiley thankful for all that's good in our lives.  It's looking around knowing what could have been, and what might still lie ahead and experiencing gratitude for simply being here; for having all of my girls and my husband with me around the table, even if Abby couldn't eat.  It was gratitude for the 12 years she did eat, and as I write tonight, gratitude because not even once that entire day did I wonder what next year would hold. 

I hope you all had a wonderful Thanksgiving, and I hope you are all truly grateful for the blessings in your lives.

Hanging

I didn't realize how much time had passed since my last post. 

Listening to Emily continue to cough in the next room made me think of writing.  She's better, depending on the day, but continues to have a lot of congestion.  She runs a fever on and off, but generally has a little more energy than she did.  She went to school two days this week. 

Abby is a puzzle.  She seems to be overall a little better, but every time I go down on IV fluids she runs a fever.  It is frustrating.  Some days I get more liquids in her, but the last few days she has been so nauseous I've barely not gotten all of her feedings in.  I've decided not to mess with the fluids anymore until after her next doctors visit.  I need help with it.  I don't know what to do.  I want that line out before she gets sick again, and knowing it's not a matter of it happening, just when, is frustrating. 

I'm looking forward to the new year.  I don't know if it will be any different, but I will not miss 2011.  It has been tough. 

I'm kind-of sick of living in the world of disabilities.  I love living in a world with my girls, just not all the problems they come with.  I keep wondering what normal families do with their time.  If I didn't have to get up with kids several times a night and actually felt rested, what would I do?  If Saturday morning, I rolled over lazily in bed and realized it was after 8am, and I didn't immediately panic and wonder if something was wrong--how would that feel?   What would it be like to meet my husband for lunch because our kids were nearly 14 and we weren't so tied down?  How awesome is it to think of a vacation without first researching about accessibility, wheelchairs, side-rails, access to hospitals, and a million other details?

I know from experience that it doesn't help to ask those questions.  There are no answers and it only makes me sad for my kids and myself.  No one of us should live in the land of what-ifs.  The land of what is has to be my focus.  It's the only thing that helps my girls. 

This is very hard and Jeff and I are both tired.  We have no helpers here because we lost medicaid when we left Florida.  There is a five year wait here for it.  The girls will be adults then, if they make it to that point.  In trusting that God knew what He was doing when we came here, I have to trust that He will either supply the help we need or continue to equip us to care for them ourselves. 

I still love being so close to family and have been thoroughly fascinated with the amazing colors of fall. .  It's great to see them so often.  We are having a house full for Thanksgiving and I can't wait.  I'm just praying the girls are healthy and not in the hospital.  It would be wonderful to leave all of this behind for a few days.  n

Still hanging on is the best I can do :)