Baby Steps

Tuesday, January 24, 2012

No changes yet...

Well, we are not making a lot of progress right now. We went to Emory last week and they adjusted her diet so that her blood sugar doesn't drop throughout the day. They are worried about the possibility of acidosis which one of her meds can make worse. We are weaning her off of this medicine for that reason and also because it has really bad side effects. We have already seen so many side effects and not sure if it's from the two meds or the huge number of spasms she is still having... Probably a combination of all.

We noticed immediately after we started weaning the medicine that she was having extreme withdrawal symptoms. She is very irritable, lethargic and not active at all. She slept 16.5 hours the first day on a lower dose. She has stopped smiling and playing. The diet has such a small amount of carbs that she doesn't have much energy to begin with and when she has seizures it takes all she has. The goal of taking her off this medicine is to see more energy, muscle tone and hopefully she can learn how to hold her head up again. So far she is much more alert but also more aware of her seizures. When she has them she screams during every one. So yes, we are talking about 250+ blood curdling screams a day. Yesterday she had a better day.. Still 250 spasms but she smiled once and its been weeks since she has smiled at me. It's the little things that are so important right now.

Our next step is to have an ERG.
An Electroretinography (ERG) is an eye test in which electrodes are placed on the cornea to measure electrical responses to light in an effort to detect abnormal retinal function. We are deciding if trying another medicine is the next step. Many children with Aicardi have seen drastic reduction in the number of spasms on this medicine. The drug can cause permanent vision loss and is pretty scary to try but we have no other choices right now. Unfortunately, vision loss trumps brain damage from seizures, but they both are pretty much equally crappy to me. To even begin this medicine she has to have a baseline ERG done and have it repeated every three months to make sure her vision isn't affected. Luckily Emory offers this service because it's not a routine procedure. We go on February 3 to have this done.

We have started working with the Tennessee early intervention program because of her developmental delays. We will have an evaluator come out next week to determine what she needs. They will work out a program and someone will come out every week and work with her and show me what to do.

Justin is in Canada for 6 days at his yearly company meeting.He is having a good time so far. It's freezing cold and covered in snow. He will be back on Saturday so pray for a safe trip home!

While he has been gone I have really been able to spend my time loving on this sweet little girl and learning how to adapt to her needs. Since she is so angry most of the time we do a lot of relaxing activities. We have always played music so I'm continuing to do so but I've found out she likes hearing us read to her. I tried reading some kids books but she would cry when they were over so I thought I would try something longer. I pulled out the Harry potter series and read for hours. I kept saying I wanted to read them again, here is my chance! She just looks and listens which makes me happy.

Every day is a challenge. We continue to pray and take it a day at a time.

Tuesday, January 17, 2012

Day 17 of the diet

Piper has been on the diet for 17 days and we have not seen any significant progress. We have been praying that this diet would start working because she is now averaging 200-300 seizures a day. This is affecting her mood, development and personality even more than before. We are truly at a place where we feel hopeless.

This weekend we went out of town for Justin's boss's 40th birthday. We had a good time but it was extremely stressful because piper basically cried and screamed for hours at a time the whole weekend. We had to call the neurologist and he told us to measure her blood sugar. We had to stop at cvs on the way home from sc to buy a monitor and prick her to check her levels. She was borderline low blood sugar but by the time we got home she had low blood sugar. The doctor said all we can do is give her one ounce of pedialite. The problem is pedialite has dextrose which is a big no- no for the diet because it can make her body come out of ketosis which may cause an increase in seizures.We just have to deal with hours of screaming she does most of the day. We are going to Emory tomorrow so they can do more testing.

The past two weeks have been really rough for us. I was approached by someone I don't know who had heard our story. They were trying to be nice by telling me they were proud of me for not having an abortion because most people who find out their child is "retarded" would not keep the baby. Let me just say my response wasn't very nice. For the first time I was bombarded by the inevitable, ignorance. I tried to explain more about the situation but it was pointless. We know Piper is different and will have challenges but I just wasn't ready to hear such hurtful words. Unfortunately, this is only the beginning of hearing rude things that will be said about her throughout her life.

Our pediatrician referred us to a case worker in the early intervention program because of how much she has regressed developmentally. They are coming by on Friday to do an evaluation and form a plan for her. The problem is if the seizures continue she will be unable to learn new things. Right now she is so tired that she only has play time for a few minutes a day.

We spend most of our time at home. I was trying to get out and take her places but she is so unhappy and having so many seizures that the stress is just not worth it. As you can probably tell we are at the end of our rope. The bitterness and anger is setting in and I have tried for 2 months to resist these feelings. Things are just not getting better. Justin and I have trouble getting excited or hopeful about anything. This is such a hard situation and gets harder every day.