Less answers…. More waiting…

First of all, I was blown away at the love and support and comments. I know that I haven’t been doing a very good job of keeping people updated and I appreciate it more than you know seeing how many people still love and care and pray for us.

Yesterday began with meeting a geneticist that specializes in mitochondrial disease. About 75% of the words he said I had no idea what they meant. He was very kind and very knowledgeable and very much smarter than me ;). I’m so thankful we were able to get an appointment with him and because I didn’t understand most of it it’s hard for me to be able to convey it to you. What I will say is that we now have the right bloodwork sent to the right labs to finally try to get an answer if this is what is going on or not. If you would like to read a little more about Mito click here If you would like to know more about what specific one we think she has click here

Laila then had an upper GI done. They inject contrast into her Gtube, directly into her stomach, then watch it under X-ray to see how long it takes to digest. They see how long it sits in the stomach and how long until we see it go all the way through her small intestine and then come out of her ostomy. Her small intestine is working very slowly as we suspected but is still working at this point. Now though, her stomach isn’t doing it’s part. Two hours later there was still a lot of contrast still sitting in her stomach. So, the answer to this is to have a GJ tube placed. Laila had this when we met her but we were able to get her away from it for several years, now we’re back there again :( Basically the GJ tube bypasses her stomach and puts the formula straight into her small intestine. Since that is where you absorb your nutrients it should, in theory, not cause any problems but make a solution for her stomach. But with her small intestine not working great it makes me very nervous to pump food straight in there constantly. I’m afraid it won’t be able to keep up and will cause a blockage. For that reason I’m making them admit her for observation once it is placed so that we can watch that small intestine closely. They are supposed to call today to schedule all of that.

She then had the echo done but we were not scheduled to see a cardiologist. They said our pediatrician would get the results and let us know. This was just for a preventative baseline so I’m not too worried about it.

As for me, I’m exhausted. Mentally, physically, emotionally. I’m fighting feelings of defeat today. In the six years we have had Laila I have fought so hard for her. We saw her walk, we saw her potty trained, we saw her eat, we saw her free from tubes…. And all of that is gone now. I know God has and had a plan for all of that but today it’s so hard to have seen it and have it slip away.

Today is just one day and today my feelings are sad, defeated and heavy.

Hoping for a better day tomorrow.

And here’s what her belly looks like on the inside with contrast if you’re interested ;)