Wednesday, October 8, 2014

The latest!

I apologize for the delay in getting another post published! Finding a single quiet moment to sit and type seems to be near impossible nowadays. Between being a parent of two (how did you all do it?!) with one of them being special needs requiring numerous appointments every week, sometimes I feel like I can't get my head to stop spinning!

Zacchaio was discharged last Saturday evening from UCSF's PICU with his admission amounting to a 6-day stay. His previous admission in July for identical reasons lasted well over a week, so our decision to take him in early most definitely served him well.

Here is where we stand today...

- We still don't think we're seeing any seizures. Hallelujah!!

An inside look. Goodbye rotten brain!
Left: Zacchaio's brain prior to surgery.
Right: Zacchaio's brain after surgery. The white is empty spaced filled with cerebrospinal fluid.
Note: MRI images are reversed. He had most of his right hemisphere removed.

- A couple of posts ago I mentioned that we were seeing Zacchaio's ophthalmologist for his lazy eye. On the morning of his appointment, we were playing in usual fashion while I incorporated eye tracking exercises. I couldn't believe what I saw... his lag had completely disappeared and it hasn't shown itself since! He's amazing at problem-solving.

- Zacchaio is developing tremendously! ABM therapy is doing wonders for him. He is so alert, engaged, and attentive. I can't get him to stop moving during diaper changes; his excitement for rolling over and discovering what awaits him on his play mat cannot be restrained! When we're in the car he leans forward and out of his chair, laughing as he looks out the window to the left. To his right he consistently searches for Alkaio in hopes of some kooky 4-year old entertainment. He continues to explore what his voice is capable of and is making new sounds every day. At the moment he is showing a preference for the bear cub growl. Ultimately the timing is perfect, as Cal volleyball season has started and we're hoping to attend a game soon. Go bears!

His visual field deficit is now barely noticeable. He does startle from time to time if you come toward him from his left periphery, but he is otherwise tracking 180 degrees, he turns his head both directions to sound, and he most definitely recognizes his name. He loves to gnaw on his teething biscuits, he thinks squeaker toys are hysterical, he intermittently bears complete weight on his legs, and we're seeing just the beginnings of creeping when he's on his belly. He is not yet caught up to his adjusted age of 7-months, as he is not sitting up unassisted or rolling from front to back, but he is catching up quickly and I have faith that one day he'll find himself ahead of the curve! His brain is unbelievable and his new neurologist out of Stanford attested to the fact. She says he should be the poster child for brain resection surgery! She couldn't believe how incredible he looked!
We continue to have four sessions of ABM therapy per week in San Rafael, and my gratitude is unending for your generous donations. Thank you again for eliminating the financial barriers that would otherwise limit our access to such tremendous healing! His therapists marvel at what he has overcome and the way in which he continues to overcome.
- In my last post I wrote of our newest incidental finding related to Zacchaio's right humerus bone. Following further review of his ultrasound they realized that whatever they were looking at was extraosseous, or outside of the bone. This "something" (likely a tumor per the physicians) has been putting pressure on his bone long enough to have caused it to erode half of its width. On Friday Zacchaio will have an MRI of his arm as well as a full-body bone scan while under anesthesia. The MRI should give us a good idea of what exactly this large mass is, and the body scan will show "hot" and "cold" spots which signify overactive and underactive bone activity/metabolism. We'll have a follow-up with an orthopedic surgeon five days after the scan so it's likely I won't post an update until after that meeting when a short and/or long-term plan has been established. I'm taking a deep breath heading into Friday and will continue to pray that whatever they find will be manageable.
Erosion of Zacchaio's right humerus
- A plastic surgery surprise. After rescheduling plastic surgery multiple times due to acute illness and uncontrolled seizures, we finally had a surgery date of December 5th. The problem with having a date so far in the future is 1) Zacchaio's health is incredibly unpredictable and there is no telling whether or not he will be healthy enough to keep it, and 2) we are nearing his one year birthday (January 9th) which means his scalp will inevitably be much less mobile and malleable, decreasing the chance of complete removal of his scalp nevus. The wonderful news is that an October 24th surgery date became available and we were given first claim to it! The bad news is that this happens to be the same day as Aidan's brother's wedding. Unless anything changes, Aidan and Alkaio will attend Evan and Beth's wedding in Arizona while Zacchaio and I send our love from afar.
The plan remains the same with plastic surgery. Remove as much of his scalp nevus as possible (without leaving the incision too taut), remove the large cutis aplasia (area where skin didn't form completely) and large lipoma (fatty tumor) toward the back of his head, and remove all the smaller cutis aplasias on the right side of his head.
- Although Zacchaio had a clinical baptism in Cleveland prior to brain surgery, we had the opportunity to complete his baptism in our own church last week with two phenomenal Godparents. Fr. Nebo and Presbytera Stephanie have not only taken our son under their spiritual wing, but have blessed our lives in more ways than they know by joining our family. As much as I would have loved to open the baptism for all to attend, there was no telling whether or not Zacchaio would be healthy at any particular date or time so this was incredibly last-minute. God willing, we hope to celebrate his 1-year birthday in your spirited presence, surrounded by your unbridled love and support!
As a family we are taking off next weekend for UCLA Children's for a second opinion from a neurologist who specializes in infantile spasms. During downtime we hope to find an opportunity to introduce Zacchaio to the ocean and beautiful sand of Venice Beach for the first time!
September 2014
Trying to keep up with big brother!

1 comment:

  1. It's great to get your update and I am so happy for the progress that is being made. With the love and support that you and your family seem to have, this child is guaranteed the most possible. I send you all my biggest love and well-wishes and also wish the best of everything to Evan and Beth. Lovelovelove, Vicki O'Grady