It's been awhile, I know, but not much new has happened until today! Zoey has been enjoying her physical therapy and I can't believe how tired she gets from doing her exercises. She is becoming happier on her tummy and today she rolled over all by herself! Beautiful girl is still struggling with the seizures, but amazingly she is still learning and not getting worse. We see the Dr. This Friday and that will be another big decision time. She is at the highest dose and has been for 3 1/2 weeks. Not a lot of improvements. She tends to have only 1 episode still but sometimes it lasts longer than a minute or two. While its great she's only having one episode, I thought we would be done with this part by now. Night time has become horrible again. She wakes up from seizures and will not go back to sleep, if she does its only for a minute or two. Silly baby. Love her, buy oh I'm soooo sleepy. Back to the new born stage is what it feels like. Only I have been doing it for nearly 8 months! Keep her in your prayers! I feel like we are almost there just not quite making it. I'm so proud of her hard work and its paying off. Yay Zoey!
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
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.
