Yesterday was Abi's appointment. Dave & I were both so anxious to meet Dr. E & to get his opinion on things. The appointment went well. We spent 2 full hours with the Dr. & he was able to answer questions that we have needed answers to. He was able to help us understand the medications better & give his insight on what he thinks will work best for Abi. As for her seizures, she is having seizures, but she is not having them daily like her Infantile Spasms. She is still having Infantile Spasms. Abi had a spasm while we were there & he had no doubt that that is what it was. He said that all the medications she is on (besides the Vigabatrin) is doing her no good. They are for seizures, not spasms. If it hasn't taken away the spasm by now, then it is not going to take it away later. He really is pushing to get her off of all of them. We will keep her on just one seizure medicine, since she does have a seizure every now and again. He said that there are only 2 kinds of treatments that help get rid of the spasms, & that is either a Steroid or Hormone treatment. The ACTH injection was brought up. You may remember, this was our worst nightmare at the beginning. We were set on NEVER giving this treatment to Abi. The side effects were horrible & the chance of the spasms coming back after the treatment was more common than not. This treatment was out of the question. But, Dr. E. helped us be more mindful of the ACTH & told us he likes to do a high dose & short term. Instead of a high dose & long term. He said you won't see all the side effects that you would if she were to be on the steroid for long term. The only thing we'll see is the irritability. But that should only last a week, cause the 2nd week she will start coming off of the treatment. If this treatment works, Abi could be spasm free. If not, then she will eventually grow out of them by age 3 or 4, but most likely will grow into having adult seizures.
Dr. E also wants Abi to have another MRI. Her first & only MRI she had was not the best of quality. And the dictation on it was not as clear as it should be. We learned that there is more going on in Abi's brain than just her missing her Corpus Callosum.
This probably doesn't mean anything to any of you. Or in any case, is boring. That's okay. I've said before, this blog is for my records. My journal. I need to write these things down, so I can someday go back & hopefully see the changes & progress we have made.
I just hope that Dr. E. doesn't think Dr. L is an idiot. He does not have the experience that Dr. E has. Dr. L told us to bring home as much information as we can so that he can be aware of this condition & better help his patients. Dr. E is going to write Dr. L a letter of the important things we talked about & hopefully help him understand the Infantile Spasms better & also Aicardi Syndrome. I don't want anyone to think that we think Dr. L is not helping us. He is! He is an amazing Neurologist & we couldn't have asked for better. He is so willing to help us out in any way that he can, & when we told him we were going to Texas for a second opinion, he was just as excited as we were.
We are so grateful for this opportunity. We are extremely grateful for doctors & medicine, & technology. I can't imagine us living in any other time than now. We truly are blessed with so much! I am grateful to all those out there that have a daughter with Aicardi Syndrome. And to those I have come to know through emails, blogs, & websites. It has been a blessing to communicate with families who are in the same situation we are. But I am also grateful for all the families who have a child with special needs. Abi has taught us so much! She is such a joy in our home (along with Lyvie)! She has taught us to have more compassion than ever can be imagined. Along with patience, love, & a desire to do better each day. She is an angel. We love our girls more than anything in this world. I cannot even begin to imagine not having them in my life. I am grateful for the knowledge that I have of eternal families. 2 songs that touch my heart every time they are sang are: I Am a Child of God & Families Can Be Together Forever. Those songs are true. They are a testimony to me. I love my family so much! I love the Gospel! It's been a very emotional time for us, but we are grateful to have this chance & to reflect on life itself & why we are here. Remember how important life is. Life is a privilege. We should make the most of it & not take advantage of any second that goes by. Thank you to everyone who has prayed for us & especially for our Abi. We feel the prayers. We love you all!
