I am so thrilled to be home from a week long adventure to the Children’s Hospital of Orange County. As you read in my last post, we fought hard to get there and it was worth every step! The evaluation and treatment for Jane was well executed with no time wasted, and our hearts connected with some very fine nurses and doctors.
An immediate 5 day EEG told us a lot about Jane’s seizure types, which led to a fantastic drug that has our girl in new spirits. Her demeanor is less cranky and irritable and we watched her go from 10-15 seizures a day when we first arrived, down to only 3 that the EEG picked up. A well deserved break for our little girl. We are so thankful for this discovery and pray that it remains successful and causes no harmful side effects to her blood and liver counts, which we will be checking once a week for the next 6 weeks, and intermittently for the next 6 months. This medication change has been a huge victory!
Jane also provided them with urine, blood and spinal fluid for metabolic and genetic testing, to rule out any inborn or underlying issues that may be contributing to her seizures. Those results will take weeks to return.
The last step of our stay included a very necessary MRI since Jane had not received one since her first week of life. We knew this was a mandatory step but we did not realize this MRI would give us some much needed answers as to what our Jane has been dealing with. Note, I said answers we needed, not exactly answers we wanted.
I should mention that my mom and I intended on being in Orange County tentatively on our own. Rich would only join us if the stay was extended for a lengthy amount of time. But since he’s the best in the whole wide world he surprised us 6 days in and spent the last 3 days of the stay with us. So when our MRI results were presented, he was there.
Our very smart, trustworthy, firecracker of an epileptologist came in with her team and told us some things we knew and some things we didn’t. The MRI, at this point in time, did not look good. Janie’s brain muscles have suffered great atrophy considering all the seizures she’s endured for the last 7 months of her life. Small infantile spasms had developed into full blown tonic seizures (full body stiffening) and it has taken a toll.
What she explained next is difficult to write, but I know it is only ammo for us all to keep fighting for her. We were told the back part of Jane’s brain is significantly damaged. This is the part of her brain that processes vision. Jane’s optic nerves are well in tact but her brain cannot see well what her eyes are looking at. The epileptologist mentioned the words “clinically blind”. Although, since she is only 1 yrs old, we do not know the extent of what she can and cannot see.
We were told that Jane will be cognitively challenged. We were told she will need special education to get her into and through school. We were told complex thought and analytic thinking will be very difficult for her , to what extent we cannot know.
We were also told that this year is critical and if Jane is not sitting up on her own or walking by age 2, it is unlikely she will ever walk.
We were told to add speech and physical therapy on top of her pre-existing occupational, developmental and vision home therapy visits.
We will have a “long term” relationship with our neurologist as they do not expect her seizure activity to ever go away. We will start by one of many follow up appointments in 6 weeks in OC. (Could be worse. Can anybody say “DISNEYLAND”!?)
Those were the things we were told about our daughter yesterday, on our 3 yr wedding anniversary. But please realize that those are facts, and they are not necessarily truths. These were things that were told to us, not things that are written in stone.
Our hearts are very heavy for our little girl. We don’t know what her future looks like but we have great hope. Great hope that God absolutely does miracles and He will absolutely use Jane’s powerful little life for a purpose we may never know until heaven. We have great hope that these are not impossible obstacles but challenges to be beat and conquered. We are disappointed by not destroyed.
Please understand that we will cry, be saddened and grieved, but our vocabulary will always be one of faith and hope. Not because we are faking it, but because we absolutely believe in it, and it is the only way.
Thank you for always praying for Jane. Stand with us as we watch her plow through her challenges victory by victory. And when she is walking, talking, thinking and playing we can all stand back knowing we were the ones that kept hoping for her, and standing in faith for her life.
Moments of Victory:
Jane’s seizure medication is supposed to make her very restless and unable to fall asleep on her own. In the hospital she was given melatonin to help her rest. Its been 2 days now of full naps and sleeping at night without any aid. She is taking a deep nap as we speak :)
For 2015 we have been generously supported by a dear couple enabling me to not work and stay home with Jane. This past week before Rich came to see us, he informed me that due to some changing circumstances I would be able to continue not working after the year is over. God had lifted that burden of finances before we even had to ask.
Isaiah 65:24 While they are still talking about their needs, I will go ahead and answer their prayers!
Jane has only eaten her food in a reclined pink bouncy chair (as seen in most of my pictures of her) for her whole life. Sitting up in a Bumbo or on my lap would illicit lots of drooling and hunching, making it almost impossible for her to eat that way. This morning I sat her in a full blown Ikea high chair and fed her her breakfast with minimal drooling and no tears. I woke Rich up by telling him, “She’s in a high chair babe… and she’s eating”
More to come <3