Sleepy time

Alright so first off, seizures are still there... We are having good days and bad days still. Not much new. Night time still seems to be the hardest time for her and no one knows why. The doctors did increase her dosage again so we are playing the waiting game once more to see if this higher dose will work. It will take another week or two to tell the difference.
Today was her first day of the physical Therapy. Boy is she gonna work! She did great, but she will be working now! I have been given some exercises to help her WANT to be on her tummy. I now know the reasons behind  why it is important to be on her tummy. Bless her she hates it. Tummy time is important because it teaches the babies to put weight on their opposite shoulders as they try to reach for toys in front of them. This then leads them to reaching and scooting and eventually crawling. So tummy time it is! But for Zoey we will be doing modified tummy time. We are also working on getting her left arm to come out and get weight on it as well so she can use it as much as she does her right hand. The other exercise is to get her interested in her toes. Again a modified version. She doesn't actually lay flat on her tummy, instead I hold her kind of crunched up and bring her toes up to her line of vision and let her just reach out a hand. She already loves her toes!  She was wiggling them and touching them so I think that exercise will be fun for her. Her modified tummy time will be getting her resting on an arm rest and on her knees, and then using her arms to keep her up. She is higher up so she will be able to see whats going on around her without having to look up really far. She doesn't like that one so much, but she was doing so well I am excited for her to keep going!
Her EEG was supposed to be today, but because her seizures are still going on, we had to cancel. No point in going in for them to tell me that she is still having seizures.. So the plan is to wait...again and see if we can get them stopped then call and get an EEG done. Hopefully it will be soon. Wednesday she will have another therapist come to check her vision and see if there is anything we can do to help her with her tracking. I am not sure she needs help with that one. She has good days where she seems to track just fine, but every once in awhile she will be grumpy and not want to do anything. All in all things are going ok, and at least I am feeling like progression is happening versus just waiting for anything to happen. She is so happy to be with people and to chat to everyone.. already a social girl!

I have wondered wether or not I should post videos of Zoey going through her Infantile Spasms. I don't like seeing these videos because she is not happy. It's what I see everyday. Heartbreaking.  Watch the videos at your own viewing risk. The reason I have posted them is because Dec. 6-10. 2013 is infantile Spasm awareness week. With that, me and some other parents with IS children are grouping together to create a fundraiser to give the money to research for IS. One of the most frustrating things that I hear from dr.'s is," We just don't know enough about IS." They don't know enough about what causes it, or how to treat it. In order to get the help that these kids need, we must get this information out there. Dr.'s need to know how to diagnose it. They need to know how to treat it. They need to know how very serious and dangerous it is to leave untreated. I will give more information as it becomes available. Any donations, or help to find ways to get the word out please contact me. If you would like to learn more about IS here is a wonderful website to check out: http://www.infantilespasmsinfo.org

Waiting...

I have to say waiting for things to happen is the hardest part of this whole ordeal! Zoey has been doing well. During the day I hardley see any seizures. If she is having them, they are small enough I'm not seeing them! That's a good sign right?? Then the night comes.... Without fail, the last 4 days she has had painful seizures at 10 it 1030 at night and just cries. Having usually about 10-20 seizures. That number is actually an improvement for her, but that doesn't make the situation any more comforting when your babies crying, and her eyes are rolling back. Freaky to watch heartbreaking to hear and see.
After all that though she is mostly in a good mood! I can get her laughing and she loves to chat to people. She finally got accepted to start her physical therapy and I'm hoping that will help to get her back on track with  happy baby. She still doesn't roll over, but she is now trying and is close! She still has left side weakness, its better but she still doesnt want to reach for toys or even hold toys. She hardley does that with her right hand, but its much better. All things therapy will help her with so I'm happy with that part! Future... I'm so confused about if the meds are working. She has been on this med for 2 weeks now. We were hoping to see results.... And while the day is better, I am worried about the night and her catching up with her seizures at night. I keep hoping this day will be the end of them, but night comes and ruins it. We will be going in on Monday for another eeg and meeting with the Dr. You can tell when your stressed out when you start dreaming out her eeg results....
In other news, we had so much fun going to st. George and seeing family. We still have to be careful with germs so we didn't get to see everyone, but a change of environment was nice. On a bad note, she got double ear infections... Hopefully that will clear up with no problems. Poor baby has more medications in her system. I hate it! This morning my two babies were so very cute together and makes me feel like everything will be ok. Joseph is such a good big brother.

Crapy days

I know I just blogged, but now I find that sometimes blogging clears my head and let's me think about other things... Sort of. I came away from that Dr. Visit feeling so optimistic, and then more crap happens. My poor little girl, she hasn't had her painful seizures for weeks now, but last night she woke up with some really nasty ones. I cannot express how painful it is to watch your child go through these horrible, painful things and all I can do is watch and hold her. I should be able to help her! Mother knows best right? My heart just breaks. I felt like at least those had gone away, but no they are still here. Then today came. All day she has been good. Here and there she would have a few but mostly ok. Then we sat down for dinner. BAM. A head dropping big seizure. While better then the painful ones, not easy to see her collapse in half and eyes roll. Over and over and over. About 40 times in the space of 30 minutes. This is when I panic. Why isn't the medicine doing ANYTHING??Shouldn't it be doing something? So I made the rounds calling people to figure out what or if there was anything to do. Wouldnt you know it.. the old neurologist is the only one to answer because she was on call... Little bit awkward. Pretty much told that nothing could be done this weekend and wait to talk to my neurologist Monday.. bitter? I would say yes. So now I am waiting to go to bed and see what my weekend brings. Totally discouraged and wondering what is really going on with Zoey that we just aren't finding. Hard being a parent. Such love for a baby I only met 6 months ago.

New Dr. And hope!

We have had a little bit of drama the last week or so. We have been in contact with another family here in tooele, going through the same thing we are, at the same time too! We have also been using the same Dr. Which is good until both patients have issues with that Dr. So both kids are taking vigabitrin. Their poor little baby was given the wrong dosage. Not off by a little either. While zoey was given a dose that was normal, they increased it too quickly. That led to a bit of panic for us because when you lose trust in your Dr. It's very hard to get it back. This is my child's future. This will determine what her quality of life will be. What was frustrating is that this Dr. Wasn't really my Dr. The Dr. We started out with left for a month and didn't bother to tell us, or let us know who we could go to instead. After a few phone calls we finally had another meeting set up with a highly.recommended Dr. At primary's.
Zoey's seizures have not stopped. She has been on vigabitrin for a week now and I really haven't noticed a huge difference. She hasn't had any painful ones, and her head dropping ones aren't as frequent. Other than that... She is still having 30 or so a day. Not very reassuring and since the med is so hard on her its frustrating to not see results. Yesterday we had a fun filled day at the hospital. Zoey magically stayed asleep even after I got her out of the car(that never happens)! We had to run some more eye trests, to measure her retina and also one to check how her eyes were connecting with her nerves and brain. The first test again my baby stayed asleep! The second test... Not so lucky. They have to numb up her eye with some drops, no idea how she slept through that. Then they have to put this contact lens in her eye. It is not a small contact and looks freaky! That was when she had a good old fight with me. I won and we finished the test quickly and I'm glad that one is done!
When we finally got to meet the new Dr.  It was the most optimistic I have felt in a long time. Zoey is doing everything she should be. Very social, reflexes are doing what they should. Her little arm that has been tucked up by her side is now moving much better and she is wanting to move it. She is not rolling over because bless her the Dr said she has too much weight! She doesnt know how to account for the extra chub she has going on. Love those steroids!  The only thing the Dr is worried about is that she needs to use her mouth to try and chat more. She chats alot, but only in squeals and grunts. The Dr. Wants her to babble a little more. The. Other thing that we aren't sure about is startle seizures. They aren't sure if it is part of the infantile spasms or the start of her other epilepsy. I really hope its not startle seizures... They don't sound very promising from what I have researched.
All in all she is learning and is happy. They said it was a good thing that she is able to learn things while still having seizures. This med can take the full 2 weeks before it works. She may have 30 seizures one day and none the next so it will be a wait and see. The plan is to wait until our Aug. 12 appointment and EEG. And figure out the next move, if med isn't working. She also start physical therapy on the 6! Now all I need is for Zoey to sleep at night and things will be so much better! She stops the steroid on Sunday and I hope that fixes the problem!

Ahhhh!

That is exactly how I feel. Ahhh! The process of trying to determine what medication to try next has been exhausting and scary. The pressure of trying to choose a medication that is the best one to stop her seizures has brought on sickness, crying, tantrums, and sleepless nights. I'm not talking about my 2 year old either! After speaking with the Dr. And also fasting and trying to get advice from other families in this situation, we decided that vigabitrin is our best bet. We risk the tunnel vision, but we are hoping that she won't have to be on it for long and her eyes won't be affected. So we are on day one. I would love to tell you the results, but wouldn't you know it, I got sick. Since Zoey still has immunes that are low from steroids, she went for a stay at grandma's house. I miss my little baby! Amazing how such a little person has such an impact on the whole house. I am getting second hand knowledge about Zoey now. What I do know is that so far she still has them. But it hasn't even been a day yet so hope is still there. I want to give this med a couple weeks to see if there is improvement and if not we will re-evaluate again about which med to try. Zoey loves kissy noises and whistling and will squeal with delight. Such a happy kid through all of this, I love that baby so much. Even Joseph told me he wants his sister to come back! The good thing about Joseph and I being sick, is we get to spend some time together and have some fun with each other alone. Love my kiddos!

Meds

Can I tell everyone how much I hate this! Sooo Zoey has been on prednisolone now for 5 weeks. 2 of that on the higher dose. While it seemed to help a little it has not stopped her seizures. Now we have to decide what to do next! At first James and I both agreed to go to ACTH.  Its a much stronger steroid that a lot of people have had success with. Also it has the same side effects as what she is already taking. The other option is Vigabatrin. Still a successful med, but can create tunnel vision for kids. Knowing that ACTH seemed to be the better option despite being ridiculously expensive. Like 120,000$ expensive. Talking to the neurologist she told me that those kids who started on a steroid and went to vigabatrin and the other way around as well had a success of about 75%. Seems like good choice right? Now here's the fun part. Vigabatrin is 2 weeks initially, but then can go for 6-9 MONTHS. where as ACTH is only 2 weeks. So now we are stuck.. We have been told that we need to get the seizures to stop as soon as possible. Anyway tricky tricky and no clue how to decide. We will be doing another fast this weekend and try to figure out what we have to do. I have never felt as emotionally, physically drained as I do now. Such lows, its so hard to stay positive. Zoey had an aweful cluster of seizures last night that had all of us freaking out. They lasted longer and looked horrible especially when she looks like its painful! Cannot wait for sleep! At least with sleep you can feel better. We go on Monday for a meeting with the neurologist to decide what course to take for miss Zoey. Wish us luck!

Team Zoey!

Stressful week! As the Dr.s gave the ok to give her a higher dose of medicine, it also led to a lot of blood pressure checks. Normally I am supposed to get it checked twice a week. However, when I went in her BP was too high. She went from being around 104/ 65 to 110/75. Freaked me out! They had told me they wanted her 100/55 or below... So panic totally set in. 
After being extremly frustrated with never getting the BP checked correctly I got a cuff at primary children's and took it to the hospital here in Tooele. Low and behold the cuff doesnt fit their machine... At least this time they found a cuff that was her size and put it in a place specifically for Zoey. I have always said how bad the tooele hospital was, but the ER nurses have been so good with us, I am changing some opinions.  Zoey had a really high BP that went up to 135/93. Really not good, so we had to stop the dose for a night( which was perfect because after 2 nights of no sleeping, I finally got 5 hours!).  The Dr.s put her back on her old dose and we had to go in and check her BP every day. BP went back down to 110/80 ish.
Finally today the nurse we report to, met with the neurologists to go over Zoeys case. They told me that Zoey's BP was still normal while on prednisolone and to increase the dosage again. So saying all of that... I am happy. We had a fast on Sunday, that we specifically wanted. 1. Was her blood pressure would be ok. 2. That she could stay on this medication, because even though she is grumpy and doesn't sleep, it is still the safest, least damaging med she can be on. So the fasting and prayers are working! Please keep them coming, and another fast on Sunday is planned for those who want to.continue to help. We wait and take BP this week again and check in on Monday for another evaluation. So our prayers and fasting will be again for her BP and also for this med to kick these seizures out. We are on week 4 of treatment and if I remember correctly she can only be on this med for 6 weeks. 

Please keep praying for Zoey! She is still smiling and loves to be held. And loves to stand in her bath. Not sit...just stand. What a tough kid I have! Joseph is loving going to the hospital. He already has all the nurses wrapped around his finger. He gets teddy grahams everytime he goes in. I always get reminded in the morning that we need to take Zoey to the hospital!