Friday, February 25, 2011
For all us parents know, parenting is hard work. Like the hardest, but of course most important job we will ever have. But there are days when your car keys end up in the trash can, your phone in the toilet and you fight over them just eating a bite of oatmeal and this is all before 9am. Sometimes the only pleasure in parenting is sharing the funny things they say or do via the internet. I mean seriously sometimes I want to sell my kids on the black market, but then they will do something that makes me just stop and laugh and it makes me realize I don't want to sell them.. until later of course.
So if you twitter, or if you don't, start. Just everytime you share something your child just did do this #mychildjust and finish the sentence. I would love to hear all the other stories out there of sharpie on leather couches, we all know it makes us feel better knowing someones kid out there is worse than our own ;) (isn't that why s@# my kids ruin is so popular?)
So if you have a baby who just farted or a tween who just proclaimed her love for justin beiber during mass, or if you have a 35 year old who still lives at home and you think they are pretty funny too.... share!
Remember if you twitter #mychildjust
Wednesday, February 23, 2011
So here she is with all her pride and glory...
Tuesday, February 22, 2011
I called Neuro and said hey this doesn't really work with the amount of seizures she is having. They sent an email to see if they could get us in any sooner and asked to put us on cancellation list, but as of now the appointment still stands. So annoying. Consult will be for 2 minutes and then we will have to schedule the surgery for I'm sure weeks to a month out from there. Neuro told me he was sure I could teach the Neuro Surgeon a thing or two, not sure if that was a compliment to all my brain knowledge or a jab at a young not too bright neuro surgeon, is that even possible, well with the exception of Derick Sheppards sister on Private Practice, are we really supposed to believe she is a neuro surgeon?! Either way I am not too thrilled.
I have a massive headache, Lily was up from 3am on last night. She was just doing her loud Lily talk and on and off crying with nothing wrong with her. It is odd there can literally be a brawl outside involving police sirens and ambulances and our entire household sleeps through it, yet Lily talks all hours of the night and I am wide awake. Anyway she is still having one big seizure a day almost on the 4pm hour every day. In addition to all the jerks and drops. It is odd and makes her crabby. We haven't seen any changes in her gluten free diet.
She still in constipated. She is now on antibiotics for a runny nose that is just green and non stop since mid January.
Sigh.... if anyone finds my sense of humor can you send it to me? I will pay for shipping. Even willing to pay a reward.
My last posts have just sucked. I know. My writings suck. My attitude sucks. Working on it. Hang with me.
Sunday, February 20, 2011
Saturday, February 19, 2011
Friday, February 11, 2011
Anyway I always get to hear the most interesting things during that hour that makes up for the glue, the loud, and the getting in trouble.
Back in July I had a couple hot pink extentions put in my hair and I liked it so much I had my most awesome hair man dye the whole bottom of my hair pink in August.
That is a picture of us at Splash for a Cure and a great example of my hair color :)
So anyway not one but two kids in two seperate groups ask me where my pink hair went. This was after they asked me in January and December AND November...I told them it washed out. They said ahh man. I wonder if that makes me the cool mom?
Another thing I found funny was Andi's group was at my table and Andi said "T kissed J!" And I said "what? kissing!" and little J says to me "well Andi kissed me!" I looked at her and asked if that was true and she smiled. Sigh...
Then a sadder moment was when I asked a little guy how he was doing today he said "well my parents got kind of rough with each other last night" I asked him if everything is ok and he said it was. I didn't really know where to go from there. My heart was sad for him.
So last night when Andi made fun of us kissing (Andrew and I) I said Andi do you want parents that kiss or parents that fight? And she of course said kiss, but I just have to say I am so happy that even though the school year started out with lots of fighting and unknowing, here we are getting made fun of for kissing. Mwah!
Speaking of that we are going on a date tonight thanks to my parents they are keeping all 3 for a sleep over and we are going to celebrate Valentines Day a few days early. <3 (that makes a heart on facebook if you're wondering)
Thursday, February 10, 2011
Neuro decided to go up aggressively on Sabril and Clobzam and hopefully we will be able to discontinue the Banzel. We also decided to replace VNS on the right side. It was originally on the left side, when they went to replace the battery the cords weren't working so they just removed the battery and closed her. I really think the VNS did help and we want it back in. Neuro said it is perfectly fine to put it on the right side and so we are going to go ahead with that, I am hoping we can do that during spring break.
Lily is still gluten free and except for my diminishing bank account I haven't seen any changes in her at all. Positive or negative. We will continue for 2 more months and then if we still see no changes she can go back to oatmeal and peanut butter and jelly on real bread. But always willing to try anything for our girl.
I will now move on to Andi who at the Dr the other weighed in at 58 lbs and 50". She is only a pound less than Lily and about maybe 4 inches shorter. Either Andi is a giant or Lily is really slowing down in growing (probably both). It is nice that she is knowing we have to care for her completely but I can't help but wonder if it is because of CDKL5, or she just has slowed down. She is quite average for her age and she used to be 100% height and weight for her first 6 years then she really slowed down. Anywho, we are on Andi Jane. She was at the Dr because we are concerned she has ADHD. Her Dr has already voiced his opinion on her last year but now that it is causing a problem in school I want to look into it more in depth. Her teacher has made note of her inability to sit still to an extreme as well as her social issues and staying on task all no bueno. Not sure what our plans will be from diagnosis on, but you can be certain I won't do anything without doing my research.
And onto our boy. Oliver had his 2 year well check on Monday and came in at a whopping 25 lbs and 36". He is quite the string bean but I have to say I am glad his 12% and 97% percentiles weren't the opposite, he'd be an oopalupa. First thing Dr noticed was his raging ear infection in one ear and pretty bad infection in the other. Oops. I knew he wasn't sleeping well. Just thought it was a cold. Then we go on about vocab. How many words he asks uh.. 10? Maybe 15? Is that ok? Not really he says. He told me not to worry worry, but be concerned and we will follow up with an ear re-check and then some hearing tests. I'm not worried he is autistic, but I am concerned he has fluid in his ears as he did all last year and then when I finally took him to the ENT it was summer and he was all clear. But I am worried he has had fluid for the most part of his little life and his hearing isn't right. So I guess we will continue to follow up with that and I will continue to update.
I told our pediatrician, I wonder if we had a 4th what the heck he or she would have?!
I call Andrew to tell him this news and he says what the heck is wrong with our kids? My sentiments exactly. So glad we closed up shop. My heart can't take anymore worry over these precious little people.
If you can spare a prayer for us it would be appreciated. I know I kept the update on the light side, but I do have genuine worry for each of my kids and I know Lily's is the most severe concern and most life threatening, but I want Andi to do well in school and flourish as an awesome spirited child, not hindered by her overactive brain and we would love to hear Oli say more than hot, truck, football and dada. He is 2 now and he barely says anything clearly let alone puts words together. So pray for our mommy and daddy hearts that fill with worry. Pray for the kids that we make the right choices where all their well beings are concerned. Pray God's will always takes us where his Grace can protect us.
Monday, February 7, 2011
Saturday, February 5, 2011
Tuesday, February 1, 2011
Back in September I wanted to escape what the big bad wolf did. I didn’t want a staring role in our family anymore; I was willing to settle for character actor. I just needed out without really checking out. So I took a job at a bar/grill as a server. I hadn’t waited a table in almost 10 years. We did need the money, but most of all I needed something to distract me from what my life had turned into. And every weekend that is where I went. And in the beginning I really enjoyed it. The money really is great, and it was fun to feel “young”. When the place was swamped it was nice to have the only thoughts of who’s drinking what beer. But then my toe nail fell off. I dreaded leaving my family. I started finding reasons why I couldn’t work certain days and I started to want to be back home. Yes seriously my big toe fell off after turning black from 3 days of 8 hour shifts in too tight of shoes. My hands also look awful. After a long shift my feet will cramp when I stretch out while sleeping. I will say “no no no..” and jump out of bed to get the cramp to go away. Friday night I didn’t get home until and had to be up with all the kids and have them to church by for Andi’s basketball game. I just knew I was done. My boss who is a single owner of the place with her hubby is awesome. She was amazing to work for! So understanding and was totally understanding when I said I couldn’t do it anymore. They are letting me stay on as a back up which will be nice so I can come in from time to time. I enjoyed all my co workers and the regulars. It really is a cool place to work for and go to so part of me is sad to stop working, but other parts of me are excited to be able to pick up and go up north again with out needing weeks advance notice to take off. I’m excited to be able to put my kids to bed. Just to hang out at night again. Things I have been really missing. So this Sunday, super bowl Sunday will be my last day. I am ready for it to be over. I’m feeling so tired. So old.
My parents were so awesome to take the kids all day Saturday so Andrew and I could do some running around and I could take a nap! Oh how amazing it was! Then we went to my good friend’s 29th birthday party (no really it really was her 29th, her first one) she made homemade sushi and martinis… she rocks! So we had a date day and night! Then Sunday I went to see a play called RESPECT with my mom, sister, aunt, cousins, etc, and it was awesome! Oh my goodness, ladies you have to see this! It was so much fun! After that I came home and we took the kids for a walk down to the neighborhood basketball court and we all played til the sun started to set. Andrew and I even ran 2 suicides, voluntarily! Man I was sore the next day, but I think we need to do that more often.
So the weekend started out a rough, long exhausting night, the place was slammed! But it ended up being pretty much one the best weekends I have had in a long time!
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