Thursday, June 26, 2008

It's late...

It's late and I really shouldn't be posting on my blog at this hour. I am too emotional. Emotions and tiredness do not mix well. I am depressed at the moment. I try to be strong but at this moment I am not. I can't sleep. It's 12:30am and a nurse will be at my house in about 7 1/2 hours to administer Sophie another injection. These shots are wearing on me and even more so on Sophie. The thought of her not being able to go to preschool makes me so sad. She has made so much progress there. But she has much more progress to be made. But she is making progress so I should be happy about that, right? I am happy. I am ecstatic about it. I am just tired of being happy about it...if that makes sense??? It is just that I wish it would all come naturally. That it is not so much work. Everything Sophie does is analyzed 100 times over. Sophie's current therapist count...15 (currently she is only working with 9 different therapist). Sophie's current doctor count...4 pediatric neurologist in 3 different states, 3 orthotist in 2 different states, 2 pediatricians, 1 developmental pediatrician, 1 ENT, 1 ophthalmologist and 1 hematologist.

Then there is the guilt factor. Guilt that I am not working hard enough. Guilt that I am not grateful enough. Guilt that I am sad. How can I be sad when Sophie is considered one of the "lucky" ones?!?! How can I be sad when I am fortunate to get such incredible care for Sophie?!?! Guilt that I am even talking about myself. Guilt that I am even writing this post.

I am grateful. I do realize the "what ifs". That is why I feel guilty for feeling the way I feel.

The only good thing about this post is that Sophie is still sleeping. She made it past the midnight hour. That is when she usually wakes up (somewhere between 12am and 1am). So maybe I can sleep with some peace now...maybe I can stop holding my breath.

Wednesday, June 25, 2008

ACTH - Day 8

We increased the dosage today to .4mL twice a day. The nurse came this morning to draw blood* and give the shot and Jake came this evening to give the shot (thank you...I know how emotionally hard that must have been on did a great job...she didn't point to the boo-boo on her leg afterwards like she sometimes does). Needless to say, Sophie was a little wiped out for school today. I wish I would have planned it better to where her increase in dosage was not on the morning before she went to school.

I want to say thank you to everyone for being so supportive through this process. Jason...thank you for coming over the first few days and assisting Brandon with the shots. My IS friends...thank you for all your support and advice...what would we do without the internet?!?! My mom...thank you for coming over during the day and helping out with the girls especially at a moments notice. My mother-in-law...thank you for always being there especially these last few days while Brandon has been out of town...I can't imagine what this morning would have been like if you were not here.

Seizure update... A bit better. No drastic changes but sometimes the seizures are a bit milder than usual. On Monday night, she slept through the entire night without waking up!!! It has been awhile since she has done that. It was absolutely wonderful. Elsa didn't wake up until 5am and then went right back to sleep. They both woke up around 8am. Thank goodness because this was the first time I have ever spent the night alone with both kids. Last night, she woke up at about midnight and had about 5 mild seizures. So her nights have been getting a lot better.

* The nurse was able to draw blood for lab work via a finger poke. Sophie had to hold this warm pack in her hands for a few minutes to increase blood flow and boy did it work. Her finger wouldn't stop bleeding for a bit. It bleed through the gauze pad and we had to put a second band-aid on her. I'll take this any day over trying to fish for a vein in the arm. There is only one nurse at the lab at the hospital where we usually go that can get it on the first try. So YEAH for the finger poke! And BOO for the fact we recognize the nurses who draw blood.

More words...

I left "more" and "wall" off the list. She also said "go" in therapy today. Oh, and she also says "ball" spontaneously. I knew I was forgetting something.

Tuesday, June 24, 2008


Sophie is talking!!! In the mist of everything going on, I haven't had time to post about all the great things that have been happening around here lately. The words aren't that clear and there are probably only a handful of us that would understand her BUT she is trying. Trying very hard. Here's a list (somewhat in order of when she started saying them) and I am sure I am probably missing a few...

wawa (water)

I can't even explain how excited I am that she is talking. I use to wonder if she would ever talk. Then the sign language started and then I knew she would was just a matter of when. Now she is talking. Mostly the words are prompted (meaning "Sophie can you say...") but she has said two words spontaneously...mama and rock. Mama she said spontaneously when I picked her up from preschool a few weeks ago and now she says it spontaneously quite often. Rock she has said spontaneously only one time and that was when she walked by and saw one laying in her basket. It is a start. A great start!!!

Saturday, June 21, 2008

ACTH - Day 3

The nurse gave Sophie her first shot which went okay...just a little blood and a lot of tears but she calmed down within a few minutes. Brandon gave Sophie her second shot which didn't go so well...a lot of blood and a lot of tears and she kept pointing to that spot on her leg all night long. Then Brandon gave Sophie her third shot last night...the best yet with no blood and a few tears and she calmed down quickly. So hopefully this will continue to get easier with time. Last night, after much advice from many different people (thank you all by the way), we decided to swaddle her and lay her down (the first 2 times I tried to hold her in my lap and wrap my arms and legs around her) and it was much easier to keep her still.

Thursday wasn't a very good day. She was very moody and had many seizures.

Friday was a better day. She was in a great mood and had her usual amount of seizures during the day but had a great evening until about 1am when she had a fairly large cluster of seizures that made her scream and cry.

This morning has been much better though and the total count so far is 7 (not including 3 movements that were questionable).

Currently, Sophie is on .5mL (40 units) given at night. On Wednesday, we increase to .4mL twice a day. The nurse will be coming on Monday, Wednesday and Friday mornings to give Sophie the shot so that will be a big help with Brandon's work schedule.

Thursday, June 19, 2008

Pure torture...

Please share if you have any advice on how to hold down a 2 year old while she is screaming, crying and trying to wiggle her way out of getting an intramuscular shot. Oh, and any advice on how to stay emotionally detached since she is your own daughter? Is this going to get any easier? It is breaking my heart. I am tired of holding her down while she gets leads glued to her head for an EEG. I am tired of holding her down to get blood drawn or an IV started. I am tired of holding her still to get examined by doctors. All the while she screams and cries. I am suppose to protect her not hold her down while others do painful procedures.

So far, so good...

Two nights ago, Sophie woke up at midnight and had a bad cluster of seizures. They were strong and she had about 30. She was making strange arm movements and crying. She has actually been waking up in the middle of the night lately and having seizures. Well, last night, she woke up at 12:50am. She sat straight up in bed and started crying. It is hard to get her to lay back down. For some reason, laying back down upsets her. So I got her to cuddle up in my arms and she fell right back to sleep. It felt like she had about 6 myoclonic jerks which are different than her infantile spasms and tonic seizures. Myoclonic jerks are where your body just kind of shutters when you are falling asleep...can be perfectly normal. Her arms didn't thrust out. This is a great sign. Then she woke up at 6:30am this morning and Brandon lay down with her and she fell back to sleep without having any seizures. She is still sleeping. Her seizures are the worst in the middle of the night and first thing in the morning. Could the ACTH work this quickly?!?!

Wednesday, June 18, 2008

ACTH - Day 1

What a day!!! I am so glad it is over. I woke up this morning with big knots in my stomach. I was so dreading this day. The vials were in the fridge...everything was set up to start the treatment but I just wasn't ready. But would I ever be??? I just felt so overwhelmed, exhausted, stressed, sad... There is a list of things I want to do with Sophie this summer. So many things that I know she would enjoy. So many things I am now going to have to postpone. The thought of what this drug does to her just makes me feel so sick. I don't know why this drug over others. All the drugs have their side effects. I guess this one is just so visible. I see on the outside what it does to her body. The other drugs are just these little pills that she takes that hopefully will stop her seizures. I feel so bad for Brandon to have to give Sophie the injection and I feel so bad for Sophie to have to receive them. The other drugs are painless. Sophie loves taking her medication. I put all the pills on a plate and she just picks them up and pops them into her mouth like candy. I am so lucky that she is such a great pill taker.

Back to ACTH... the nurse arrived a little after 5pm. She went over all the paperwork and then it was onto the injection. I drew up the injection just like old times and handed it over to the nurse. I held Sophie down while the nurse gave the injection and Brandon watched. Sophie screamed and cried and tried to wiggle her way out of it. ACTH is a gel and it takes awhile to push all of it in. Then I immediately picked her up and we went outside to play on the swingset. I sat on a swing and she sat on my lap while I sang a song to her. She felt better in minutes. On the other hand, I just wanted to crawl up in a ball and cry. I just feel horrible. I just can't shake this awful feeling I have inside me. I have to take her out of preschool. She LOVES preschool. She gets so excited when I tell her in the morning that we are going. I hate that I have to take that away from her. But potentially I could be giving her so much more. Seizure freedom. Please pray that this will work.

Friday, June 13, 2008

ACTH update...

I miscalculated how many vials of ACTH Sophie is scheduled to get. It is actually 8 vials. I spoke with the pharmacist that will be shipping the ACTH to us since local pharmacies no longer deal with it. I asked her how much the insurance is paying for each vial of ACTH and she said $25,000. Then I asked how many vials are being shipped. She said 5 vials (the other 3 vials will be shipped later). That is $125,000 worth of drugs in one small package. Each vial is 5ml. Yes...only 5ml. 5ml is equivalent to 1 teaspoon. So 5 teaspoons of ACTH is equal to $125,000!!! This will be the most expensive package that I will every receive.

So I spent about 2 hours on the phone today going back and forth with the pharmacist, the nurse from the local children's hospital who will be coming out 3 times a week, and the nurse from our neurologist's office to get everything squared away. We are set to start ACTH next week. Actually as early as Monday but I think we will start Wednesday night. I feel for Brandon who will have to give Sophie the majority of the shots (the visiting nurse will give it when she is here). I am just not strong enough to do it. There will actually be a 4 week period when Sophie will have to get 2 injections a day. She will be on ACTH for a total of 9 weeks.

I pray that ACTH works quickly and that we never have to go on the highest dose.

Thursday, June 12, 2008

Neuro appointment...

So we went in for our forever dreaded routine neuro appointment. They are so routine that Brandon doesn't even go with us anymore. It started out with Brandon going to all the appointments with just getting conference in via just getting a recap when he gets home from work. They all go something like this...

Neuro: What medications is she still on and what is the dosage?

Me: blah, blah, blah (update with her ever-changing medication schedule)

Neuro: How are her seizures?

Me: She is STILL having daily seizures. They are the worst when she wakes up in the morning.

Me: What do we try next?

Neuro: In so many words...It really doesn't matter what we try next because since she has failed so many medications that there is a very slim chance anything will work and if anything does work then it probably is only a matter of time before they come back.

Me: Well, then what has the least effect on her cognition because her development is INCREDIBLE right now. Then I go down the whole list of all the new things she is doing.

Neuro: No reaction. NOTHING, NADA, ZILCH.

Neuro: We can try... (fill in with yet another medication to try).

Me: Okay. Thanks for your time.

Some might wonder why we stick with this neuro but he has been with us since day 1. Even though he is not Mr. Personality, I still like him. He has always been open to any suggestions I might have and he is always willing to consult with other neuros. Not to mention that he is a pediatric neurologist...not an easy title to earn.

So what makes this appointment different than the rest is as follows...

I occasionally keep in contact with the neuro in Detroit that specializes in Infantile Spasms via e-mail. Well, this time he responded to my e-mail with a phone call. So I went through Sophie's history of medications and treatments we have tried since we last saw him and he suggested a second round of ACTH. Yes, that is right...a second round of ACTH!!! Ugh!!! The side effects to her body are hard to watch but this was the most successful drug she has been on. This was the closest to her becoming seizure-free from any drug (we still do not know why she was seizure-free for 33 days back in December 2007/January 2008).

So I mentioned this to her neuro during her last appointment. He called the neuro in Detroit. All is in agreement that Sophie should do a second round of ACTH. So that is what we are going to do. We will be starting the treatment in the next couple of weeks. Everything has been approved by insurance which is huge considering each vial is about $23,000 and she will probably go through 5 vials while on this treatment. The cost is insane - right?!?! The cost of ACTH during Sophie's first round of treatment was about $2,000 a vial.

So, that about sums up our last appointment. The appointments are a necessary evil...always leaving with an overwhelming feeling of something that I can never quite pinpoint but it is never good. How can it be good??? Sophie is still having seizures :(

Monday, June 02, 2008


Sophie loves balls. She loves saying the word ball, she loves kicking the ball, she loves throwing the ball...anything to do with a ball. I don't know if it is because she can say the word or if she said the word because she loves the ball.

Depakote and seizures...

We are now down to one Depakote capsule a day (125mg). Her seizures seemed to have stabilized. She probably has anywhere from 30 to 50 seizures a day. It's hard to keep track. Or really, I just hate counting them. I use to keep a log of every seizure she had. I would write down when, how many, what type. I just can't keep up with that anymore. Now, I pick a day and I'll record them and then forget about it for awhile. I tried to track them today since we have her neuro appointment tomorrow, but I didn't. Let me try to recall...she had about 8 when she woke up this morning...then a half hour went by and she had a few more...then she had a few periodically throughout the morning...then she had about 10 when she woke up from her nap...then she had a few periodically throughout the evening...probably around 30 in total...and those are only the ones I saw. After 2 years of having seizures, this is what it has come down to. It is just part of our daily lives. So I will try to post tomorrow and let you all know how her neuro appointment goes.

Elsa, Elsa, Elsa...

Yesterday, Elsa rolled over from her back to her tummy for the first time (in the past it was always from her tummy to her back).

She loves chewing on her toes. Actually, she loves chewing on anything she can get her hands on. I can't even take a drink of water while holding her without her trying to grab the cup.

I just can't get over how alert she is. She is constantly following Sophie with her eyes. They are just so adorable together.

On Wednesday, she has her 4 month checkup with the pediatrician. I can't wait to find out how much she has grown...she is just getting so big.