Tuesday, January 17, 2012

Thursday, January 12, 2012


First, thank you all for your thoughts, prayers, and encouragements concerning William and this trip ! Many of you know how apprehensive I was and how much planning it took to make it happen. So thank you so much for your support !!
Wayne, William, and I arrived home last night after our three day trip to Children's Hospital of Philadelphia. Honestly, I am having a difficult time writing any kind of reflection on the trip. Our main goal in meeting with a top Neurologist at CHOP was to get a second opinion on how to achieve seizure control. We also had Genetics at Strong send all William's records. It was a full day for William at CHOP. He had an EEG to monitor brain activity and seizures followed by a four hour appointment with Dr. Bergqvist! Overall the visit was definitely worthwhile and productive but also emotionally exhausting. The doctor was visibly surprised by the lack of white matter in the MRI of William's brain. (It was her first time viewing his MRI with us) She admitted that it was rare but she had seen an MRI just like his recently. Unfortunately the child had just passed away. This was incredibly hard to hear and didn't start the appointment off on the best note. I refrained from asking how old the child had been as Dr. B proceeded to tell us that children with William's condition usually do not live a long life and asked if we had a palliative care team set up. This was NOT a complete shock to us but still very difficult to hear from another neurologist. She explained that given William's lack of almost all white matter in the brain it is unlikely that he will progress past an infant like stage. My understanding is that the white matter in the brain transmits signals to the the rest of the body on how to move, see, etc. The doctor also feels that seizure control is not likely to be completely achieved yet gave us several ideas for new medications/ combinations to try. She encouraged us to consider the Ketogenic diet again with better reflux management and a g-tube. We expressed that so far William loves to eat and still has the ability to; so we are not ready to proceed with a g-tube . If/ when he does require a g-tube to feed we may revisit the Keto diet with her assistance. She also recommended a repeat MRI as he is now older and that we continue to pursue genetic testing. In the upcoming months she offered to share his MRI and records with both Genetics and Radiology at CHOP to get more opinions on causes for the malformation and future treatments. She may also send his information to Dr. Dobyns in Chicago; who I believe specializes in lissencephaly and other brain conditions. Meanwhile we will have another appointment with Dr. Mink (Strong Neurology) to discuss the meds she recommended and talk about a repeat MRI. I am very grateful that she is willing to help us gather more information/opinions and try to figure out what the best choices should be for our sweet William. At home we will continue to challenge him to achieve new things- regardless. It is very difficult for me to make choices about quality of life for my Will Man. Some things are obvious; he is part of a loving family that cherishes him as he is. He loves all kinds of music and being with Ella. He smiles when he hears other children and loves a bright sunny warm day. Yet there are difficult decisions. Is it better quality of life for him to be seizing multiple times daily or to be over medicated and sleepy? To be able to enjoy food by mouth while he is able or should a diet to control seizures be the first priority? It is hard to know what the best choice is... and what worked best for Will a year ago is failing now. It good to know that we have excellent doctors working with us; top minds from different Hospitals working to give William the best life possible.

As an end note: we all got some nasty cold germ that seemed to appear last night. The whole family is sick on the couch.... so I hope this post is put together somewhat well and makes sense!! :-)

Friday, January 6, 2012

My New Mantra

Ella has taken to crying in the morning and William has taken to being floppy/resistant. Not sure if this is normal "back to school after Christmas break" behavior but nevertheless it has caused some serious white knuckled driving. Their "twin take down momma" moments have given me a new Mantra... actually my first. Yep, if you saw me today in my green Honda CRV racing down Winton my lips were sure to be moving. Repeating to myself , " I am doing the best I can"... my new Mantra. The key is to straighten up the spine, sit a little taller, grit your teeth, think happy thoughts (two beautiful children who don't always cry whom I love) and repeat, " I am doing the BEST I can". ;-p
Early Monday Wayne, William, and I leave for Children's Hospital of Philadelphia in pursuit of second opinions on seizure control. The plans have been in the making for months; CHOP has had William's neurological records for a good length of time. This morning I ran around like a mad woman filling the holes in my personal records. An hour later I was alone parked at William's school with a THICK manila envelope containing hospital records, three radiology Cd's, a bag of seizure medications, and a grande Jamaican-me-crazy coffee. (And short three dollars; didn't beat the parking fee in the hospital garage. 0-30 minutes no fee... apparently I am not that fast)... ;-)
After picking up William; speaking with his nurse and teacher I was 20 minutes late picking up Ella! Repeat Mantra...
Once home the kids are happy; bellies full of pb&j and milk and content to play or nap. I pulled out the radiology cd's and dug in. It's a strange thing seeing your baby via CT scans and x-ray images. There he was tiny Will man; just one day old. The images show all his tiny and fragile bones; his tiny legs, arms and baby parts. I found myself upset remembering the day of the twins birth. Although I know William struggled at birth and needed oxygen it still hurts to think how they whisked him away. The birth was long. Ella came first and was lodged in such a way that she took many hours to push out. After William's birth I was hemorrhaging and required oxygen so all my memories are slightly hazy. I remember the general panic in the OR room and how I was jabbed in both legs with needles; something to stop the bleeding. Yet despite all the birth drama what upsets me the most when looking back was not being able to hold my son. I was not able to see William until the next day. Doctors preformed a CT scan and abdominal x-ray before reuniting him with me; poor baby.
Four years later pouring over his tiny bones, brain, and tummy on these x-ray images I am overwhelmed with love for my now not so tiny guy. After studying the MRI scans of his brain I am anything but at peace. Of course I have seen these particular images before but time or frequency does not ease the shock. Where brain tissue should be there is black (how fluid reflects on images). Only a thin ridge of tissue surrounds the fluid filled middle; with slight folds in the frontal lobes and smooth on the back. Why? all I can say is how? and why? I feel tremendous love but not peace. I wonder if I will ever find peace amid the anger and questioning? I do feel grateful though for his life and his tenacity. For his beautiful smiles and strength.
The cd's are now packed with all the other records and ready for travel. I am willing myself to put them from my mind and simply hold my son. My flesh and blood super amazing son that the images can not come close to representing. At four he still loves to snuggle and falls asleep in my lap. He is beautiful and for him I will keep searching for answers; to achieve seizure control and give him the best life possible. To know that my Mantra is a true one.

Happy New Year!! No really... I probably should have started off the new blogging year with something more cheerful. Our family is actually doing well... on good days and after 9 a.m ;-p Picture and more updates to follow soon.