I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Friday, January 22, 2016

Sometimes Things Just Aren't Fair

Since before the holidays something just hasn't been right with Alex. She's been pale, tired, uncomfortable, the palms of her hands have been yellow and she's had lots of odd symptoms but nothing that added up to anything.  She hasn't been able to tolerate her back brace, even going in her stander was a challenge.  I've taken her to the doctor, we've gone for blood draws, checked metabolic panels, all with no answers.  One thing I noticed was that every time she ate you could set your watch to how long it would take for her to start hiccuping - and I don't mean an occasional one here or there, she hiccups for 20 to 30 minutes.  I decided to call and set up an appointment with her GI doctor that I really like.  When I called to make the appointment they told me I couldn't see her doctor until the end of February, but the nurse practitioner had availability.  As much as I wanted to wait for her doctor I felt like things had been going on long enough that I needed to start seeing some of her specialists to rule things out so I opted to just go ahead and meet with the nurse practitioner.  Hate to say that I wasn't overly impressed, but after explaining everything that has been going on she sent Alex for some abdominal x-rays.

Alex has had problems with constipation her whole life.  Probably a little TMI, but she has needed suppositories and enemas to help her "go" since she was three months old and that has never been a fun process for any one of us.  We've been on more laxatives, medications and stool softeners than I care to count.  I've watched her suffer from the side effects of being impacted more times than I care to count.  My daily communication with Aaron and Tammy, her nurse, always include if she has gone or not.  On more occasions than not she's pulling her hair or biting herself because she's so uncomfortable.  We chart how long it has between bowel movements and we give Alex enemas weekly to combat impactions so needless to say I was a little surprised when the x-ray she had showed that she was full of stool.

In case you aren't versed in reading x-rays, the shadows are all stool,  

In this x-ray you can see on the right where it is actually in her rib cage.

We were sent home with a prescription of GoLytely to clean her out, which is what adults drink to prep for a colonoscopy.  We started the process last Friday morning.  We had to run it for 10 hours straight through her feeding tube.  I will NOT go into detail on what that was like.  On Monday we went for a follow-up x-ray and while there was a little progress, it wasn't enough and we were instructed to run the GoLytely again, and again, I won't go into details about it (I will say I owe her nurse Tammy a very special extra thank you for this go round though).  In the interim we went to see another specialist that we saw years ago when Alex first had her feeding tube placed and her Nissen Fundiplication.  We spoke for a bit about what has been going on and I brought the disk of her x-rays with me.  After discussing everything and talking about how many times a week we have to help Alex have a bowel movement a surgeon came in and it was decided that Alex is going to need to go in for another surgery and she needs to have a Cecostomy done.  In short, a cecostomy is a procedure that surgically forms a connection between the interior first part of the large intestine and the outside that is made through an opening in the front of the abdominal wall.  

I can't even begin to describe my emotions about this.  I'm so mad that everything has to be so hard for her.  She can't walk, she can't talk, she can't eat solids - those are things that you attain over time and we've accepted that, we've worked so hard to try and gain those functions, some with some success, some with none and that I'm OK with.  But POOPING is a natural thing you do from the minute you are born, so the fact that she can't do that normally angers me more than anything.  It makes me so sad too.  I don't even know if I'm more mad or sad at this point. She works so hard for everything and almost always with a smile on her face.  To watch her suffer to do something that is supposed to come so naturally just seems so unfair on top of everything else. 

I've been doing a lot of research on Cecostomy's and what to expect.  I'm trying to figure out what new supplies and procedures we'll have to add to our daily routine and come up with a new "normal". Our surgery is being scheduled in the next 2-3 weeks so I have a phone call back in to the specialist we saw now that I have had time to absorb it all and have come up with a list of questions.  I hate the fact that she needs to have another surgery, but I'm praying that this is the resolution she needs to finally find some comfort.

Monday, January 18, 2016

Merry Christmas!

I've been trying to blog for weeks but it has been such a crazy time.  Between the normal busyness, the holidays, current issues Alex is having and her bathroom being in full renovation stages it's been crazier than usual.

I had every intention of sending out  our Christmas card this year and well, that didn't happen.  The only picture I got was Rudy's!

My sweet boy!
Perhaps I should have asked Santa for a new camera this year.  I get an EPIC fail on picture taking this year because my camera started dying a few months ago and it finally bit the bullet on Christmas morning.  I took one picture Christmas Eve before my camera went dead so I have no pictures from the amazing Christmas Eve family dinner my parents hosted in their beautiful new home except for this one of Aaron and Alex.  say it a lot, but I just love the bond between the two of them and I love how Aaron is looking at her in this picture.  

I'm thankful I got some pictures on Christmas morning before it died for good.  I'm just sorry I have no pictures from the incredible feast and presents and family time we had at my sister's house.

My kids didn't even have Christmas pj's this year!  Oh well, it's the memories we made, not the clothes they were wearing, right?!?  We've never asked him to, but in true Zach fashion, he wanted to help Alex open her presents first.

Then it was Daddy's turn to help!

...and finally, it was his turn :) 

I think he was on the nice list this year and made out pretty good! :) 

Right before Christmas Jacob's Chance had it's annual Santa Merry Mall and the kids got to 'go shopping' for Aaron and I - they were paired with buddies so they could shop and wrap presents for us so that we would have surprises under the tree from each of them.  Zach wanted to make sure he got a picture of me opening up the beautiful earrings he got for me.  He was so excited to give them to me and I loved that they got to have that experience and be excited about giving.  

I'd say everyone had a good Christmas! 

From our home to yours, we hope you had a very Merry Christmas and that you have a happy and healthy New Year!

I have so much to catch up on, even though we are more than half way through January, I've set several goals for myself for 2016 and I'm hoping and praying I can institute them and have a little extra time for things like blogging!