Fall used to be my favorite time of year. My birthday, the leaves changing colors, football, a crisp to the air, pumpkins, and the fun fall activites. Since Piper was born fall has become a season we dread because the memories are so painful. Piper had her first seizure on October 15, 2011. It's a date we will never forget as hard as we try to. We spent Piper's first Thanksgiving in the hospital. Her first Christmas was filled with hundreds of terrible seizures. These are the times most young families are making precious memories and enjoying first moments with their child.
October is here once again and with it brings bad news and difficult decisions. Decisions that no young parent (or anyone for that matter) should have to make for their child. We should be enjoying this time of year with both of our children but we are forced to put all of our energy (which isn't much) into figuring our what to do next. Our spirits are low and we are both physically, mentally and emotionally exhausted.
Since we moved to Colorado all of our efforts have been focused on cannabis oil, seizure control, advocating and educating. It has by far been more than a blessing. This plant has helped so much with seizure control, alertness and awareness. Unfortunately with all of our focus on seizure control, many of the other terrible things that can occur with Aicardi syndrome have been put on the back burner. We prayed and hoped we wouldn't have to deal with these issues but now they are here and we have to figure out our plan of action.
Sabril is the only pharmaceutical that has ever helped Piper's seizures. It comes with a cost, the risk of vision loss. When we first started this medication, seizures were so bad that we decided that seizure control trumped vision loss. We didn't have a choice. She has been on this medication for almost 3 years with no signs of damage to her eyes...until now. She is seen by an Ophthalmologist every 3 months for this very reason, to look for changes in her vision. We got the news yesterday at her appointment that there are changes in her peripheral pigmentation which means the medicine has started affecting her vision. We have always known this could happen but just prayed it wouldn't happen to her. We are faced with some difficult decisions that will affect her life forever. We will have to try and get her off this drug so the damage to her eyes does not continue. The scary part is we could see some serious increases in seizures. If this is the case we may have to continue the medicine and accept vision loss. I cannot tell you how hard it was to give her this medicine this morning, it was truly sickening. I am giving my child something that is causing irreversible damage and there is nothing I can do about it now.
We spoke with Piper's neurologist today and he agreed with us that it is time to try a wean to see if it is really even helping her anymore. It will be a month long process and we will start today. PLEASE PRAY seizures don't get worse. This is the best control we have ever had so we are very worried and nervous to make any changes. It will be difficult to transition since I just started school and Justin has been traveling so much. Hopefully she will tolerate the wean and things will be fine.
Earlier in the summer we suspected Piper was developing scoliosis which is typical with children who have low muscle tone. We took her to an Orthopedic doctor who confirmed our suspicions. He took xrays of her spine and hips. She has a slight curve (15 degrees) and her hips have not formed correctly. He did not act very concerned and told us to come back in 6 months. He also refferred us to a rehab therapist to help follow these issues and make sure we are connected. We met with her on Monday and she blindsided me by telling me Piper will need spinal and hip surgery in the next few years. The doctor had mentioned none of this so I was really suprised. I am very aware of the spinal issues as most of our Aicardi friends have gone through this or are currently going through this situation. I expected that it would be a lot later in her life before we talked about surgery. They mentioned that it will probably be need in two years and to go ahead and start meeting with the surgeon. They said bracing only prolongs the surgery and once she as scoliosis she will defientley need surgery.
She also told me Piper will most likely need hip surgery in a year to correct the ball and socket issues so she will not be in unbearable pain. I asked if she needed this since she does not walk and shows no signs of being able to in the future. The doctor said she will most likely just be in tons of pain if we don't. I have already talked to the other Aicardi parents and the ones who opted for surgery said they regret it because the pain from the surgery and recovery was worse than the pain from the issue. So it looks like we have a lot to think about.
On top all of this crazy news, Piper has just not been herself. For the past 2 months she has screaming spells that can last all day. There are many days where she will just scream or cry for hours and there is nothing we can do to console her. We have tried everything. We have done tests, taken her to every doctor to make sure she is not in pain but we just cannot figure out the reason why she has these outbursts. A friend of ours who has a daughter with Aicardi has been going through the exact same situation so we brainstorm what could be causing this behavior. We don't know if it is pain, boredom, behavioral issues or just frustration with not being able to communicate. It is exhausting for all of us. Evan has started mimicking her behavior so when she screams he does too. He sees how much attention she gets when she screams and wants that attention too. He is a very smart kid but we don't want him to be unhappy just to get our attention.
We have some tough decisons to make but just like everything else we will figure it out with a lot of hard work and problem solving. I am going to end this post with things I am thankful for even though some days they are over shadowed by the negative.
-We have a beautiful, smart, HEALTHY little boy who is an amazing blessing. He is almost standing on his own and will be walking before we know it.
-We raised enough money (thanks to many of you) to have a service dog trained for Piper. Toby couldn't be cuter!
-I just started school on the weekends to get my CNA certification. In Colorado, family members with CNA (nursing assistant) training can provide care for the affected person and get paid to do so. I will be able to earn some money and help with our financial responsibilities and that not only will help with bills but allows me to feel like I am carrying some of the financial weight.
-My part time business with Rodan and Fields is doing really well and I have finally been able to provide some income and help with expenses. I haven't gotten a pay check since I was teaching in 2010 and it feels really great to be able to help out with bills. It's so much fun too and allows me to connect with people and help them love their skin.
Thanks for the support, love and prayers.