Long overdue update

Yeah I have been gone awhile. I have spent 6 days a week at the new house working and just haven't felt the energy to post. We should be moving very very soon, the house is really starting to look great.

Lucy had her follow up appointment with the GI today. I will say right off the bat very little was accomplished in terms of solidifying a cause for Lucy's issues and deciding where to go from here. We decided to hold off on the g-tube since Lucy's linear(height) growth has remained on somewhat of a curve. We are going to continue with height and weight checks every 2 weeks in order to establish her NEW curve and then review the situation in 3 months.

At the moment Dr G thinks that Lucy has a "motility" problem- her stomach is just not emptying fast enough and its to a point that its causing a problem. Testing for a motility problem would involve yet another endoscopy and placement of a probe into her stomach, so for now we will hold out in the hopes that Lucy will not continue to deteriorate. If at the end of 3 months Lucy has failed to improve then we will consider testing and then probably place a GJ tube(tube that will pump formula below her stomach).

The big question on every one's mind is, what is causing this motility problem? Lucy's scope didn't reveal enough inflammation to have caused this issue, so Dr G suspects that this is simply the way her stomach functions. He brought up the possibility that Lucy could have a Mitochondrial Disorder. Dr G even considered getting Lucy started on the "mito cocktail" of supplements a child with a mitochondrial disorder would need, but safely assumed she would not be able to tolerate such treatment.

Towards the end of our visit we discussed the issues Lucy has been having with headaches. He was quite concerned about it because the anemia she deals with is not severe enough to cause these headaches. He was suggesting we see the new headache clinic at the hospital and have the neuro specialist there give his take on the possibility of a mito disorder and get the ball rolling towards diagnosis.

I am not exactly sure of how I feel about it all. Mitochondrial disorder can be a scary thing, its something that little is known about and can also be degenerative. Testing is long and arduous. I don't know if I am eager to pursue a diagnosis and all the testing it requires if its not something ALL of our doctors agree upon. So the first thing I am likely to do is speak to our pediatrician about it. Our pediatrician is usually right on target and very practical so I trust her words the most out of all our doctors.

As always, thank you for checking in on Lu. Bare with us during the move, once we are in and settled I promise to post more regularly!