Update on Minnie, I am sure you all have been wondering and I have been so neglectful, I am so sorry. We have had tons of doctor’s appointments this summer, we have an awesome medical team here in Texas!  God was really great in providing specialist that can provided the care that she needs.  We have a good pediatrician… I guess?  We hardly see her it is so different then The Famous Dr. Jones!  Here we see the specialist  for everything.

To get on with it, Minnie has been eating great, vomiting a little, so your prayers have worked. She is staying at a stable weight, and height.  They have decided that the next back surgery she has will be her last. She has very little skin left on her back to cut open, it is fragile and thin, the surgeon’s think that her spine has began to fuse naturally where it is now. They feel like they would not get much of a correction if they did an expansion surgery now anyway.  She will still be followed every six months and if her back begins to curve or she reaches puberty they will do a procedure called a Spinal Osteotomy.  This I am told will be the biggest surgery of her life.  That is the update on her back and tummy.

Both her lungs have decreased to 50 percent capacity.  It used to be only one lung that was at 50 percent. She is going back on her bi-pap tonight she is on some meds for asthma but the doctor feels like the real problem is the restrictive lung disease.  He explained it really well to me today, it made so much sense that babies lungs start developing at 5 weeks gestation! Crazy to imagine that at 5 weeks little babies and yes he called it a baby not a cell or a blob, start developing there lungs and the budding and branching of the “tree” as the baby continue to develop the branches with the pocket of it’s lungs spread out. But with Minnie hers were unable to because of her cancer. and now because of scar tissue and the restriction of her spine.  Makes more sense now. Anyway we can keep praying for her lungs they will be something she will always have to deal with. We are trying to teach her slowly how to speak and advocate for herself as she is getting older.

The newest development with her is something that is causing her pain it is for some reason really sad for me it really just rips me up and I am not sure why. We found out that she has no roots on both her baby and adult molars. . I am taking her to a genetic counselor on Friday to see if maybe she can link the things that she has wrong with her together. But still we can find out what is wrong but it will not fix it.  That is the cut and dry update! I will be sending out some pictures when Josh gets home to show me how!!!!

Bye for now!