Mae's medicine was reduced this week as the CHIRP team and her doctors at U of M are trying to slowly wean her off of her nightly infusions. She is continuing to gain weight and grow even with the reduction in her medicine. (She currently weighs 10.150 kg, which is a little more than 22 lbs.) This is fantastic news as it is showing that her body is handling the transition well. This is a slow process, but, it is nice to see the improvements and steady growth that is happening. Her blood work looked good this week, another encouraging sign. We will continue to have weekly blood draws and as her infusions are being reduced, we are increasing oral medications to keep her blood levels regulated.
Monday was a big day for our family as Mae got tubes in both of her ears and she had her annual brain MRI. This was a long procedure as she had a 'full' brain MRI, which took nearly 60 minutes. Both her tubes and the MRI were done under the same sedation so as to only have to give her anesthesia once- The nurses, doctors, staff, etc... at U of M are wonderful and explained everything in detail to Ryan and I. We are very fortunate to be under their care. Upon the completion of the procedure, we were told by Dr. Green, her ENT, that her ears looked good- no signs of infection or scarring- good indications for the health of her ears. We have not received any word of the MRI results but we are scheduled to meet with Dr. Garton, her neurologist, on November 28th.
Although Mae's procedure was successful, the day was long (and tiring) for everyone- especially Mae. In addition to the above, her line had been flushing 'hard' or 'sluggishly' so we saw an infusion nurse while we were at U of M. The nurse administered TPA (an anti clotting drug) into her line and it had to dwell for an extended period of time- The goal is that the drug broke up any/all blood clots or medicine clots that have accumulated in her central line. Prayers that Mae's line continues to be functional for the duration of its need are appreciated. We are hopeful that Mae can get her line taken out by the end of the year. What a blessing that would be!
UCLA contacted us yesterday and informed us that Mae's (and our) bloodwork has been completed/processed by Baylor University (that is who sequences the DNA in conjunction with the Undiagnosed Diseases Network) and that her medical case is set to be reviewed by the team/panel of doctors on November 15th. We will hear from UCLA after the review meeting with a formal plan for her clinical visit at UCLA with Dr. Martin.
There are so many emotions for our family right now as we reflect upon how much progress has been made in the last year. Everything is special to us- The fact we could all be together for trick or treating last night, the fact that Mae is at home and not in a hospital, the fact that we can sleep under the same roof, etc... All of these are 'small' things that many take for granted but we are so thankful. As always, we appreciate continued prayers for healing for Mae and prayers of perseverance for Mae's medical team. We are truly blessed.
"I will give thanks to you, for I am fearfully and wonderfully made. Your works are wonderful. My soul knows that very well." Psalm 139:14
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