Ughhh...

What sucks more than giving your daughter daily injections of ACTH? Having to still give her daily injections when it did NOT work. Ughhhhhhhhhhh!!!!!!!!!!!!!! Her seizures are slowly creeping back up in numbers. Ughhhhhhhhh!!!!!!!!!!!!! What's next? Who knows. After failing 12 treatments (8 different drugs with trying 2 twice, ketogenic diet, IVIG), it is hard to think up another option. When do you say enough is enough.

I talked with her neuro on the phone the other night. He said he doesn't think anything is going to stop her seizures. He said it is just trying to find a balance of keeping them somewhat under control while minimizing the effects to her development. When I asked if they could possibly morph into a different type of seizure that would be easier to control (I am trying to hold on to a little bit of hope here not really trying to have him predict the future but knowing the personality of my neuro I do not know why I ask him these types of questions)...he says...hopefully but they might not be able to be controlled either. Why...why do I ask him these things. I really need to find a new neuro. I need a neuro that says maybe we will find something...maybe she will outgrown them...just something to keep me hoping. But maybe I should let go of that hope. Just enjoy Sophie day to day. Stop thinking about her future. But what parent doesn't think of their child's future...special needs or typical developing. As a parent, that is hard to do. I never thought about her having uncontrollable grand mal seizures...until now. I should be happy that she is only having uncontrollable tonic seizures and infantile spasms. It could be worse. I should really stop posting so late at night. I am really depressing at this hour. Sorry. So much for my new philosophy of thinking positive. Tomorrow is a new day. I will try again tomorrow. Think positive. I will keep telling myself that.

She's back...

Our sweet Sophie is back. She is back to her old self. Well almost. She is still eating a lot and she is still fairly chubby but she has actually lost 2 pounds and her face is not as round. But she is happy!!! She is playing independently, smiling, laughing, just enjoying herself.

She is talking up a storm. She is constantly making some kind of sound or another. Sometimes words...sometimes grunts. She is so big now that she grunts when she is trying to climb up on something. Her new words...

Door (she said door when I asked her to walk the nurse to the door)

Pop (Grandma Debbie taught her pop while she was snacking on popcorn)

Night-night (she is signing night-night a lot so whenever I see her sign night-night, I say night-night and she just said it one night...out of the blue just so clearly that I had to think for a minute to remember if she had ever said it before)

Pe-Bah (short for peanut butter...she said it while standing in front of the pantry but I haven't heard her say it again)

Ever since we started weaning ACTH (we are at .5ml once a day), her development started taking off again. It is so wonderful to see her so happy and joyful.

Label Cloud...

I'm playing around with Label Cloud so if you subscribe to my blog...sorry if it is sending you lots of e-mails. I'm not quite sure how that works if you republish old posts.

More on Elsa...

On the other hand, Elsa is doing absolutely wonderful. She is now 5 months old. She is sitting up independently. She is so active and determined. She can twist and turn her body in crazy ways in order to reach something she has her eye on. And she won't give up until she gets it. Brandon said the other day "should we be teaching Elsa on how to transition from laying to sitting". Sometimes she falls over and she gets so mad when she can't sit back up. But I said "not Elsa...Elsa gets to be just Elsa...she will learn on her own...she is already trying to figure out how all by herself". It is hard not to be in therapy mode sometimes. But I am enjoying taking a step back with Elsa and just watching. Watching her do so many things easily that Sophie has struggled with. It fills my heart with joy to just sit back and watch Elsa. I have learned from Sophie not to take these things for granted but to soak in every moment. The way Elsa lights up every time I pass in front of her view. The expression is priceless. The moment will always be cherished in my heart. The way Elsa is just so alert and explorative. Every sound needs to be checked out, every object needs to be looked over. She is just amazing.

Weaning...

Both neuros are in agreement...it's time to wean. If it hasn't worked now, it's most likely not going to. UGGGGHHHH!!! We had to try it. So we did. I can't look back now but I so hate what it did and still doing to her body and spirit. She just so miserable. VERY MISERABLE. Poor thing. I drove around in the car with her for at least an hour today. I didn't know what to do. All she wants to do is eat but she is tired of eating so she didn't want to eat but her body kept telling her she was hungry. I couldn't do anything to settle her down so I loaded the kids in the car and we went for a ride. Luckily, it was about Elsa's nap time so she slept the whole time. Sophie just watched her video. Soon this will all be over. The wean will take 4 weeks. I think we might try to shorten it to 3 weeks. Why not? It's not like it stopped her seizures. She is suppose to be on .5ml/day for 7 days, then .4ml/day for 7 days, then .25ml/day for 7 days, then .1ml/day for 7 days. I think we might do each dose for 5 days instead. I just so want to get this over with.

What to do???

Sophie is on Day 26 of ACTH...only 37 more days to go. ONLY 37 more days!!! Seems like a long time. Brandon and I have a pretty good system down on giving her the shot but it stills isn't any easier emotionally. Especially since we are still on twice a day (for another 9 days).

Her seizures haven't gone away. They are better but they are still there. She is not having as many and they are much more milder. She hasn't had one of the "ones that makes her cry" seizure for quite some time now. It is encouraging that they are better but what does this mean for her. She is absolutely miserable. Always hungry. Always tired. Huge. Uncomfortable. So even though her seizures are better, she is too miserable to try to learn anything new. It is such a struggle to get her to even smile. Her two favorite signs at the moment..."eat" and "night-night". Every time I lay her down to change her diaper, she signs "night-night".

Flashback 2 years and 2 months ago...Sophie started her first round of ACTH (May 11, 2006). Her seizures got better. They were much more mild. But they never completely went away. Once we weaned the ACTH, they came back with a vengeance. They slowly crept up to over a 100 a day.

If the ACTH was going to completely stop her seizures, they most likely would have stopped by now. So now Brandon and I are debating on whether to continue the high dose for another 9 days or start weaning earlier. 9 days may not seem like a long time but when it relates to ACTH...it is a very long time. Especially with a miserable, very hungry, moody, tired, bloated 2 year old. I will be talking with both of Sophie's neuros tomorrow to see what their recommendations are.

There's more...

When I post, it is usually late at night. I am tired and my brain isn't functioning all that well. I try to get out the essentials and always tell myself that I will share all the good news in my next post but...

So here goes...

Sophie's expressive language continues to grow. She is becoming more and more spontaneous with her words and signs. She says things now that I completely have no idea what she is talking about but she is trying to find the words to tell me. It's different syllables put together that is suppose to be a word but I just haven't figured it out yet. But she is trying. She is trying to say more than just the words we ask her to repeat. That is such incredible progress. Her list of words continues to grow. She says "HeyHey" for Haley and a weird sounding "el" for Elsa. Oh, I just remembered that I left off "up" from the last list. She is also attempting to say "open".

Her walking continues to become more stable. She is going up and down the steps with more independence. Actually, she can walk up the steps all by herself now. Walking...no crawling. Sometimes it is even step over step (meaning only one foot on each step instead of putting one foot on the step and the other foot on the same step).

There's more but it is really late now and I really cannot think at the moment. I promise to share pictures and some sweet stories really soon.

Good day...

Sophie had a good day...as far as seizures go. Hip Hip Hooray!!! We are praying that this is it. That today was the turning point. That it just wasn't a fluke.

Sophie weighed in at 36 pounds tonight. Just two weeks ago she was 31.5 pounds. You can see it...in her face and in her belly. She is round. She REALLY doesn't look like my baby girl anymore. After Elsa was born, Sophie looked completely different to me. Laying next to Elsa, I could no longer look at her as my baby girl but my toddler girl. Her legs looked longer, her feet looked bigger. Now she has lost all the babiness she had left. She is just so big. So heavy. So incredibly heavy. And tired. It is so hard to keep her entertained during the day. It is just so hot outside. And if we are inside...she just wants to cuddle up next to me and suck her thumb and hold my hair. So we try to keep her busy. Keep her motivated to do something. We went swimming twice this past weekend. And Uncle Jason took her swimming yesterday. She LOVES swimming. She loves the water. She loves her bath.

Just when we were ready to give up on this drug. Ready to start weaning early. Things changed. It will be easier emotionally to give her the injections if we keep seeing such a positive change in her seizures. I have to believe this. I have to stay positive. Please keep praying for her.

Quick update...

Tomorrow we will increase the dose to .5mL (40 units) twice a day. No significant changes in her seizures. Some days are better than others. Some days I think it is working then the next day I question what did I get myself into. Even though it has been easier on Sophie to get the shots, it is still just as heartbreaking but we are all recovering much quicker. Sophie sees "the blanket", starts crying, I hold her down, Brandon gives the shot, one of us takes her outside to play on the swingset, everyone feels better all in the matter of minutes. Oh, and you better make sure you take her directly to the swingset. No trying to distract her with anything else. If you don't take the quickest path to the back door, she will redirect you quickly :)

By the way, we no longer have to swaddle her. She just lays there. We still have her lay on the blanket so she knows what is about to happen. I don't want her to look over her shoulder all day wondering if we are going to sneak up on her and stick her with a needle. Needless to say, we will be having a blanket burning party after this is all done. Hopefully, we can combine that with a seizure-free party.

One last thing...her neuro called today to check up on her. I gave him the update and he also had her lab results. Her blood sugar level was low. This could be for a number of reasons. Since it was taken last Wednesday, I can't remember what she ate for dinner the night before or if she had a bedtime snack. She is having her blood drawn tomorrow morning and we should have the results by tomorrow afternoon. We gave her a bedtime snack tonight so hopefully her labs results will be just fine this time around.