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Archive for April, 2010

It’s been an emotional week but each day had a bit of a reminder of how thankful I should be for the many blessings in my life.

Tuesday morning went a bit smoother than Monday’s but the bus was still without an aide. I figured it was a blessing in disguise because then I could meet the substitute (Mrs. L had taken the day off.) and let her know she was able to call me should any trouble arise. When we got to school Mrs. P (The other teacher who used to be in Alyssa’s class) and a new woman were at the top of the drop-off hill. I introduced myself, let her know what was going on, and knelt down to tell Alyssa bye. I was standing there a bit apprehensive because the substitute’s demeanor wasn’t nearly as warm as the rest of the people I had encountered at her school. It wasn’t that she was rude…not at all!… just not as “bright and shiney” to quote Grey’s Anatomy! Ha! Well, Mrs. P could sense I was a bit tense and said something to the effect of “Don’t worry, she’ll be OK.” I nodded and said goodbye to Alyssa. The whole time she was at school I worked on catching up on some sewing but just felt “meh” about the whole situation. Neil actually got home before the bus for the first time and he and I were talking about it. Well, much to my surprise and relief there was a note in Alyssa’s backpack from Mrs. P saying that she had pulled Alyssa into her class for the day. How awesome is that? She made more work for herself to make my daughter as comfortable/safe as possible. Seriously? Great teachers are the greatest gift anyone could ask for.

Wednesday morning … was not as smooth as Tuesday! Ha! The bus had an aide but the morning was so hectic I wound up calling and telling him not to come so that we had more time to get out the door. It actually worked out well because we were ready in time and got to take Cait to school as well. Alyssa loves when Cait rides with us! When we got to Alyssa’s school Mrs. L was back! Yay! I thanked Mrs. P again for her kindness the day before. It’s so funny to me because I don’t pause for a moment leaving Alyssa with Mrs. L. I know she’s in great hands and my mood for the day is just boosted by the way she relates to the kids. Couple that with the fact that before the teachers even came up a couple of the kids were being abso-freaking-lutely adorable… well it just setsΒ  your day off on the right foot. Alyssa was a little more sleepy at school (combo of new meds and sick) and has taken to banging her head even at school (she’s been doing it at home for a while). Overall though she is still participating and happy!

Thursday was a bit … rough. Don’t get me wrong, I got a lot accomplished. I am actually almost caught up on customs orders which is always relieving. However, Alyssa was just whiney Wednesday afternoon and then came home Thursday afternoon sleepy and just not her usual excited self. Although, it did enable me to get a great pic of her piggy hat that screams “Really? You are going to put a picture of me wearing this on the internet? Really?”

oooor as her Grandma Donna said on Facebook “Hey, my teacher never told me that I would have to wear this thing….I would never have colored it if I knew this….LMAO” HAHAH! Either way? The face is priceless. After snapping the pic I put her down for a nap because we were going to head out to dinner with Neil’s parents. Well, she didn’t sleep long and she woke up in a MOOOOOD. I was done. I came up to the room frustrated, overwhelmed, and just emotional about the fact her moods seemed affected by the new meds. I plopped down with her and opened the laptop … to find an e-mail from Mrs. L that completely turned my mood around. It amazes me that someone who I admire so much… admires me as well. Her kind words just kind of regrouped the day and reminded me that this shift in her energy level/moods is most probably not permanent! It was the exact thing I needed to read at the exact moment I needed to read it. Dinner wound up being a great time full of great laughs. Alyssa even excitedly chewed on a Slim Jim and drank from her little honey cup. She was in much better spirits out of the house!

So we wrapped up her first week of school on the new meds without much drama. I’m hopeful that if we can get her to shake the remainder of her cold over the weekend that next week will go even more smoothly. I can’t believe she already only has a few weeks left until summer vacation! Hopefully she’ll start next year off with a seizure free status and climb higher than we could ever imagine. πŸ™‚ I’m so proud of how far she’s come already! I can’t wait to see what she accomplishes in her first full year of school! … but that’s getting ahead of myself! LOL!

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This wasΒ  a Murphy’s Law kind of morning. If it could go wrong? It would. I was a bit apprehensive sending her to school due to all the factors that were already on the table: her teacher was off today, she was one day into new meds and she’s getting over a cold. However, I decided she could totally be sent home if need be. Of course, if I’ve learned one thing by this point it is that Alyssa is the boss not me! If it could go wrong… it did. Alyssa’s bus driver had called to tell me he didn’t have an aide and so when everything else became an overwhelming challenge… I decided to just keep her home. Wouldn’t you know it… as soon as I made that call? The rest of the day was fine! Ha!

It was a beautiful spring day… although Wednesday and Thursday are not looking promising… so we headed to the park with Neil and Cait after Alyssa got up from her afternoon nap. Alyssa looked like such a rock star today.

"Ah... the paparazzi at it again."

She’s had a few doses of her new meds so far and no outward reactions… other than a bit of sleepy. However, that could just as easily be attributed to her cold! We figured the fresh air could do her some good and with fresh air comes … THE PARK!

WHEEEEEEEE!

After the trek to the park we did a lap around the neighborhood. She’s definitely on the mend! Here’s hoping school goes well for her tomorrow! πŸ™‚

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*I copy and pasted this from a message board I frequent so some of it may be repetitive from the EEG post last Thursday.*

After Alyssa’s EEG last week her neuro and I sat and talked for about a half hour. I *love* him even though in the beginning he was truly a challenge to warm up to, had low expectations for Alyssa, and had the personality of a sponge. πŸ˜‰ Now … he lights up when he enters the room and sees Alyssa’s smile, he marvels at everything she has accomplished, and he is fighting along side of us to try to get her seizures as halted as possible.

The EEG showed that we are pretty much back to the same brain activity that was occurring in Sept of ’08. What that means is while awake she is almost completely seizure free but while sleeping her brain is in an almost continuous “spike cycle.” She isn’t seizing outwardly much (about once every other night and only if she’s had a hard time falling asleep) but there is worry that it is preventing her from converting daily memories and new tasks. Back in Sept of ’08 we tried her on a drug that has minimal side effects because of her age, but it increased her seizures notably (of course this is also when she was most malnourished…so who knows ) so we discontinued the use. She was doing really well once her G-tube was placed last July but we are slowly slipping back into the old routine.

At any rate, I’m long-winded but we are trying a new med (valproic acid for those of you familiar) and the side effects are… well not ones you want your baby to face.Β  At the same time, the phenobarbital she has been on since she was 3 days old is no picnic either. We are not going into it blind. She will have regular blood tests to ensure that her pancreas and liver are functioning well. Once we pass the six month mark we should know that her body is tolerating it well. The main hope of hopes is that in two weeks her liver function will maintain and we can begin weaning her off of phenobarbital. However, that is scary as well. It’s just a transition that I knew we’d be up against sooner than later. He put it off till her 3rd birthday and then I pleaded to put it off until school released. However, her teacher and I had a heart to heart about it and she, the neuro, Neil, and I all agree that the communication level is strong enough that we can handle it during school.
He is cautiously optimistic, which is so out of character… he’s not usually an optimist LOL! At any rate, he said he does not want to downplay the side effects or the risks of weaning her off of a drug that she has been on since birth… buuuut phenobarbital is something her body is learning to work around AND if we can get the spikes to stop at night… well odds are she will flourish even more than she is now.
If you could just think happy “Alyssa’s organs being super awesome and her brain cooperating” thoughts we would greatly appreciate it. I squeezed her and prayed this morning before giving her the first dose. I hate meds but if they can help her to reach the most awesome level of who she is… I cannot let my worry hold her back. So, I’ve decided worrying about it won’t change it… we’ll take action, do it with info and preparation under our belts, and hope that it unlocks a part of her that will amaze us even more than she already has :-*

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Today was quite full but also quite fulfilling. Alyssa had her EEG today at 1PM which worked out pretty perfectly. She spent the day at school as usual aside from having to skip snack time. Then, I picked her up to avoid her passing out on the way home. We managed to make it across town to the neurologist’s office with her still awake! When we arrived we still had a bit of time until her appointment so I opened a magazine to pass the time. My daughter? Yeah, she’s pretty much amazing. I went through a bunch of pages and I’d ask her “Aww where’s the baby?” She would hit the part of the page with a baby on it! One page had a dog and a cat and I went back and forth asking her to show me the dog or cat… she kept swatting at the correct one. Ah I cannot believe how quickly she is learning πŸ™‚ .

She passed out pretty quickly for the EEG and stayed asleep while they hooked up her “dreadlocks” to find out what we could about what’s going on in her brain. It was a new tech so it took a bit longer to get everything set up but the important part was that she stayed out for long enough for them to get a good reading.

Sweet sleepy girl.

Once we woke her up and got a bit of an awake reading we were told we could leave. Every other EEG she has had the neurologist spoke to us after. I asked if instead of leaving if we could wait around to talk to him. It was such a great discussion. We have gone back and forth on adjusting her meds. It’s such a challenging situation because seizure meds carry such high risks. However, she’s three now so the risks are decreasing. The EEG showed that Alyssa is still spiking quite a bit when she’s sleeping although her seizure activity is absent when she’s awake. After a bit of discussion and review of the EEG we decided that we’d never know if we could get it to stop without trying. So, once Alyssa shakes this cold we’ll be starting her on the new medicine. The new medicine has a risk of affecting her liver and/or pancreas so we will have blood work done in two weeks. Assuming that comes back OK we will begin weaning her off of one of the other meds she has been on.

As worrisome as the side effects are… the ones of the med she has taken since birth are not much better on paper. It will work out how it’s supposed to. I’m just hoping that this medicine is able to help her with the spiking that is occurring while she sleeps. Her neurologist said he’s excited to see what happens if we can get it to stop because she is already advancing so much with her brain working so hard while she’s asleep. I know that if this med doesn’t work then we will simply keep searching until we find something that does! The challenge with seizures is that it is always a chase. Just when you think you’ve got them regulated… BAM! … nope! Ha! Luckily for us Alyssa’s seizures are pretty mild but each is still a blip in her processing process. The fact that she is accomplishing so much even with all that is going on is truly astounding.

Since Alyssa was so out of it from the mild sedative she slept most of the time I chatted with the neurologist and then the whole way home. She was in good spirits for the rest of the afternoon though. Neil, Cait, Alyssa, and I went outside for a bit. We played with sidewalk chalk on the driveway, but Alyssa wanted none of it. She kept crawling over to the car. Ha!

"Hmm... yes I think the bumper is OK."

It was the first time I had ever let her crawl outside and I think she had a blast with it. It’s so hard sometimes to just let go and let her get dirty. Part of me cringes about her clothes getting dirty or the thought of a second bath of the day but the reality is… at the end of the day? I’d rather her be happy! After three years I’ve learned that list little girl is most at home in messy situations! Ha!

Ahh... the joys of getting filthy on a spring day.

Cait, Neil, and a neighborhood little girl had an art contest. Since Alyssa had no desire to color we let her pick the winning picture. πŸ™‚ She crawled right over to Cai’ts “Neil the Chimp” drawing!

We have a winner!

Although Neil’s Elwood Elephant deserves an honorable mention for sure…

It was a great day even with a hectic schedule. Now we just need to give her a few days of rest, get her back to tip-top shape, and start her meds! πŸ™‚ It will be a prayerful and positive journey and I know we won’t be walking the path alone!

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As if I’ve spent one day of Alyssa’s life NOT being proud… but today? Oh man I’m beaming. I cannot believe all that she has grasped in this few short months at school! I especially love that every day we send her to school we send her to people who do not look at Alyssa as the little girl who won’t… she’s just at a point where she “can’t yet.” It could so easily be the other way. She could have just as easily be surrounded by people who thought “Oh, she’ll never do that…let’s just do it for her!” Instead, oh these women are just such a great group of people.

Today’s e-mail quote? “I have to tell you that out of 25 photographs, Alyssa picked 20 out of 25 pictures correctly!!!” That is TOTALLY an 80%! My daughter got 80% of the pictures correct! Gah, she just amazes me at every turn! As if that wasn’t enough for one day she did her first coloring project without help. She usually needs a bit of hand over hand when using crayons…but not today!! She had help cutting out the P. She cannot cut alone … yet! That “she will soon” attitude I was talking about? It was beaming in Mrs. L’s e-mail today when she wrote “One day Alyssa will be doing many fine motor activities independently.” Even if she never does… which I doubt πŸ˜‰ … what a blessing it is that they are going into it with the attitude that she WILL! Have I mentioned I love her teacher? Yeah, yeah… I have LOL! Have I mentioned I LOVE my daughter? Yeah, yeah… I have. Man what a great day!

Well, I’m going to take our amazing little girl in for an EEG on Thursday. No worries! Hopefully it will give us a bit of insight into what is going on with her seizures. We’re hoping for no change or imporvement. However, no matter what the outcome? It’s pretty obvious her brain is working! πŸ˜‰

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you realize that they are growing before your very eyes. Today? was definitely one of those days. Alyssa’s teething necklace arrived yesterday and that combined with pigtails, her new glasses, a halter dress, and her growing by the day? … I glanced down to see that my daughter is quite rapidly becoming a little girl.

I could totally picture her kicked back on the couch as a teenager today. Scary… scary thoughts! She’s such a happy spirit and how lucky am I that I get to watch her grow! πŸ™‚ Ah… my little girl is growing up. πŸ™‚

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After a rocky start to the morning which will result in a letter written to the museum… we actually wound up having a quite pleasant time. Well, aside from Neil’s back acting up again! I love that he was so determined to go and meet her teachers that he worked through the pain… I probably would have stayed home. πŸ˜‰

Quite a few of the kids came with their parents. I loved watching the look on their faces as they realized that their classmates and teachers were somewhere that wasn’t the typical environment. There are so many exciting activities. It was also great to get a chance to talk to the teachers without feeling like I was pulling away from their time with the kids… of course then I just finished the day feeling like I had word-vomitted all over them! Ha! Mrs. L’s aid Mrs. H and I got a chance to talk about Mrs. L for a bit and talk about many other random things. It’s funny because when the class grew to the point of having to split… I was a bit apprehensive about Mrs. C not being in class anymore. However, once I met Mrs. H? I was once again at ease. It astounds me how so many great people wound up under one roof!

At any rate, Alyssa had a day filled with bubbles, a wind tunnel, a science show, and so many other great activities. It was awesome to be able to brin her somewhere I went as a child. We’ll have to go back once Neil’s back is feeling better. I could tell he felt badly he couldn’t participate more. Alyssa’s favorite attraction was the padded oasis. Really? What crawling kid doesn’t want to be in an area where they can’t break anything? One of the student’s younger siblings played with her in there for a bit and the two of them were a crack up. He tripped over her at once point and his mom went to grab him and Alyssa was roaring with laughter. Ah my sweet daughter… so full of sympathy forΒ  a fallen friend… NOT! Of course he was fine and went right back to playing but for her it was just hilarious that he tripped over her… better than crying about him touching her I suppose πŸ˜‰

Our first parent involvement day with the school and I’ll surely attempt to make any others. It was a great day! I’m thankful we got the opportunity to attend. I’m also grateful that her teachers take the time to organize stuff like this! What fun πŸ™‚

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