You are currently browsing the category archive for the ‘Epilepsy’ category.
|Thirteen Things I’m thinking about right now
1. We took Kayla to her speech therapy evaluation today and it didn’t go as well as I thought it would. They said she had severe receptive language impairment and moderate expressive language impairment. She will now be starting individual speech therapy twice a week for the next 6 months (for a total of 48 visits), then they will re-evaluate to see if more sessions are needed. They also referred me to get a developmental evaluation again because her cognitive abilities are very behind and she has a very bad attention deficit. On top of her occupational therapy. They told me she has to get in as much therapy as we can if we plan on enrolling her in “regular” school come time for kindergarten. I never actually thought of the fact that she may not be able to go to regular school.
2. I need to send in the forms CCS sent me to help me cover the co-pays for Kayla. We are spending roughly $45 dollars a week in co-pays now and lots more therapy is needed. We are also spending a lot in gas getting to all the appointments so we need to finish applying for her state disability to help with all the costs.
3. I talked to my gram earlier and she is going to be sending me her old palm pilot to help me get a little more organized with her appointments. Sweet!
4. The show Best week ever is funny.
5. Why is Tom Cruise so weird? He makes the most awesome movies yet he is so freaking bizarre. I think he is from another planet.
6. Kayla’s 3rd birthday is coming up VERY soon! My little girl is going to be three. WHERE DID THE TIME GO?? It’s too bad so many people can’t make it to the party.
7. My hubby bought me flowers and Starbucks the other morning for no reason. Isn’t that the nicest thing? I love him!
8. We are in desperate need of a second vehicle. Dang.
9. I gave Ava a haircut tonight. Her first one! I still have yet to take the kids anywhere to get their hair cut, I always do it myself. It looks fairly good. Maybe her hair won’t get matted in her sleep anymore.
10. David Cook should SO win American Idol. He is really good. It kind of bugs me that he looks like he might be balding and trying to cover it up by bushing forward his hair but that doesn’t change he fact that he is very talented. My favorite song he did so far was Eleanor Rigby. I just like his take on the song.
11. I can’t believe people would be stupid enough to think that a whole household of valuable items were theirs for the taking because of a craigslist ad. (Click here to read the article)
12. I wonder what little babies dream about. I would love to be in their heads for a night just to see the cute little baby dreams. I just went in to check on Ava and she kept smiling and giggling in her sleep. She’s probably dreaming about boobs!
13. Speaking of dreams, I had pretty much the most bizarre dream ever last night. I dreamed that I found out that Charles Manson was Ava’s real father. I know! WTF? I dreamt that I was going to visit a friend of mine and while I was waiting for her to answer the door Charles Manson came up behind me and handed me a pamphlet for something, then he asked if I remembered him. I was like, “uhh, no…” So I went inside my friends house because he was creeping me out. I told my friend about what happened and how weird it was and she said, “Don’t you remember him? Don’t you see the resemblance between him and Ava? He’s Ava’s real father!” I was like “Riiiiiiigggghhhhtt. Okay, this is a dream.” I woke myself up right then. I realized that I had that dream because the hubbs and I were talking about Charles Manson and how creepy he is right before I went to bed last night. I told my mom about it over the phone and she almost died laughing. She almost had to perform the Heimlich maneuver on my father who was eating a piece of pizza when she told him. She says she sees the resemblance, I, however, do not…
Get the Thursday Thirteen code here!The purpose of the meme is to get to know everyone who participates a little bit better every Thursday. Visiting fellow Thirteeners is encouraged! If you participate, leave the link to your Thirteen in others comments. It’s easy, and fun! Trackbacks, pings, comment links accepted!View More Thursday Thirteen Participants
It has been a busy past few days here. I feel accomplished though, by getting a lot of things done. So I thought I’d let you know what I’ve been up to an give a little update.
Friday I made about a billion phone calls including;
Calling to find out when Kayla’s next neurology appointment is. It still isn’t until May, even though were are on the cancellation list. For some reason, the neurology appointments at Children’s hospital are booked out in advance at least six months at all times. Highly frustrating. I really want to know what this new neurologist thinks of Kayla’s ‘ticks.’ (I’m not really sure what they are, this weird arm flapping, jumping motion she makes that seems to only get worse with time. They seem to occur more and more frequently. The nurse practitioner we saw at the neurology office last time said it may be a movement disorder of some sort.)
Set up an appointment to get Kayla state disability checks. I don’t know why I didn’t do this when she was first born, I guess I wanted to prove so badly that we didn’t need any ones help to take care of our daughter. But with the medications, occupational, speech and possibly physical therapy she is starting now we just can’t afford it. The co-pays alone are $15 dollars per doctors visit with our insurance. That doesn’t sound like a lot, but factor in the fact that she will have a MINIMUM of 3-4 visits a week, we will be paying $45 + plus a week for her treatment. And I don’t work so I can stay at home and take care of her. And we live in San Diego (holy cow it costs an arm and a leg to live here!) We barely make it by most months, so any help we get will be heavenly.
Set up Kayla’s occupational therapy appointments. Every Monday, for the next 24 weeks, we will be doing occupational therapy. I am extremely excited to see how much progress she makes! I can’t wait!
Talked to my psychiatrist about the medication he prescribed. I was supposed to have an appointment today with him so he could find out how the medication was working for me buu-uut I hadn’t actually been taking it. He told me what all he other doctors had pretty much told me, about how there aren’t a lot of other options out there for breastfeeding mother’s with Bipolar disorder. He decided to prescribe Lexapro to at least help with the depression and anxiety, but he wanted me to double check with Ava’s pediatrician to make sure he thought it was safe enough to take. Her pediatrician told me it was not recommended because it hadn’t been studied enough. So I didn’t take it. But I forgot to call the psychiatrist for a week to let him know. When I did call him, he stressed the importance of me taking the Lexapro. He told me discontinuing the nursing would probably set off hormones to spiral me into a deeper depression and that wouldn’t be good for me or the kids. His recommendation; don’t stop breastfeeding, take the Lexapro in an extremely low dose. He also told me he had consulted with two other doctors about it. He told me that her pediatrician was covering his butt, that he doesn’t know the benefits to risk factor, and told me that the studies had only found high doses of the medication to cause drowsiness in infants. So my low dose should not affect her, and if it does, he told me to discontinue it.
So I started taking it on Friday and I swear, I feel better already. I know, it has to take a couple of weeks to build up in your system but I think it’s working already. Maybe it’s just that I want it to work so badly that I’m working it up in my head with kind of a placebo effect, but I don’t care. Whatever it is, it’s working. Although side effect wise, it makes me feel like I’ve had six cups of coffee, a little shaky, but I’ll deal. Ava seems to not be affected at all by it. She seems they same as she did all week before I started taking it. She was teething before I started, though, so it’s hard to judge.
I got car insurance…YAY!
I also paid the gas and electric and the cable bill. Blah.
Saturday we went to visit my parents and we played some guitar hero and Wii bowling. The mood is pretty heavy over there (understandably) due to the fact that my Great Aunt decided to evict them from their house. I kind of want to kick some butt over that. Oh! I also got to feel the baby belly of my little future niece or nephew. I have a feeling he’s a boy. But, of course, I thought both of MY girls were boys.
Sunday we relaxed around the house a bit, went to Sears Essentials and bought new car seats for the kids. Kayla had outgrown her car seat and was ready to move to a booster type seat. We bought a bright pink one and it’s so cute! We decided Ava needed one to match, also hers was dirty beyond belief. I figure car seats are not really one of those frivolous things. They are kind of a necessity. So no splurge there.
This has turned out to be quite a long post an I still have a bunch more stuff I was going to type but I guess I will get to that later. I probably lost most of you by bullet three, but the caffeine overdose effect these pills are giving me is kind of making it hard to write, or stay on subject for that matter.
Off to take a nap (I hope!), I finally got the kids to go down at the same time and I am going to take full advantage of it.
My little baby isn’t a baby anymore. When did that happen?? I demand someone bring back all he time that has somehow disappeared! Right now!
Kayla will be three year old in April and this month is finally starting to act like kids her age. Today I was making egg salad sandwiches for lunch and I decided she should come help me. I set her up on the counter and she cracked the first egg, poured in the salt, pepper, and milk and stirred. When she was finished she ran over to daddy and said “I help Momma wif the eggss! I did iiit!” Back in August she couldn’t put two words together, she could barely speak, she has come so far so fast thanks to the seizure meds. I just can’t believe how fast she is going from a child severely behind her age group to a child just like any other!
When we met with her Neurologist on the 9th, she decided it was time to get her into some occupational therapy. She wants me to continue the speech therapy as well even though she is doing so well, but the occupational therapy is to catch her up in other areas. I guess kids her age are supposed to be able to remove their own clothes (the only things she can remove is socks) and be able to partially dress themselves which isn’t even close to happening with her. She can’t zip or unzip her zippers or button or unbutton her pants (which I guess her age group should at least be attempting by this age). But she said they should definitely be able to pull up their pants by now, or at least pull them down. Which she can not. It’s not that she lacks the physical capability to do these things, she has never been behind in her motor skills or physical abilities (she can run, jump, climb, hop, crawl like the best of them!), she simply seems like she doesn’t understand why anyone would want to do these things. She just seems to lack the ability to grasp the concept as a whole even after I show her over and over.
So I am really looking forward to what this occupational therapy will do for her and SUPER excited to see all the new things that she will be able to do. I am a little scared now, though, because my little girl is going to grow up a lot faster than she has been which has already been too fast for me!
Ava is getting bigger. Not in weight but surely in height. She is 12 lbs 10oz. and she will be five months old on the 23rd. She is in the 75th percentile in height [at 28 inches] and in the 9th percentile in her weight. Sounds scary, huh? Well, doc assured us she is okay, actually almost exactly like her sister and just like her dad; tall and skinny. If she was below the 5th percentile in her weight we would have to worry, but at the moment I am not. She nurses 6-7 times a day not counting at night (although she did sleep through the night one random night last week, but after that she resumed previous schedule of waking mom up at night to eat) and she eats rice cereal once a day and baby food (right now we are only doing squash and bananas) once a day. So I know she is getting PLENTY to eat, if not more than she is supposed to especially since now they are recommending once again to hold off feeding babies anything but breast milk until 6 months (rubbish, my child would starve to death) and I have no clue when they will make up their minds.
It’s bizarre to have a baby that is so completely aware and interactive with her surroundings. I guess I always assumed the way Kayla was was normal compared to other babies but that was just because she was my first baby and I didn’t know what things were supposed to be like. Now that Ava is here I always assume she is some sort of genius because at four months old she can hold her teething keys and shake and investigate them like it’s nothing. Turns out that is normal baby stuff. I’m just used to everything happening at least 6 months late because of Kayla. I think I am getting the hang of it though.
Not too much longer and I know Kayla will be completely caught up with other children her age. She just needs a little extra push. I am so proud of her! I already think she is the smartest
baby little girl in the world and it will always be that way, no matter what! ♥ ♥