Wednesday, September 30, 2009

Changes again

We are trying a new med with Lily. Banzel. So far ehh, ok. I had to go twice as slow as the Dr. recommended with getting her dose up. She is still at less than half the therapeutic dose and she is sleepy, crabby and has no appetite. I still want to go up to see if it helps, the med is for the drops and the jerk (atonics and myoclonics). Those are just out of control right now so I do want to increase this med to see if it helps, but for heaven's sake, why can't they make a seizure med that doesn't ruin these poor kids lives? It seems so unfair to have to decide between seizures and really crappy side effects. Blah.

Tuesday, September 22, 2009

Worms and Boogers

A few months ago I caught Andi Jane picking her nose and eating her boogers. I said the first thing that came to mind in order to get her to stop. “Eating boogers gives you worms.” She didn’t seem too phased and I figured I’d be telling her that up until we drop her off at college. Day goes on, boogers forgotten. I’m doing something and I hear Andi Jane yell her typical mantra “wipe my butt!” I rush in because that is the highlight of my day and see she had a bit of a mess, details not needed. “You have diarrhea?” “Yes” she nods a little embarrassed, “is that because I ate my booger?” You have to imagine my delight. It was like I looked up at God, and he winked at me, he said Kim you have a hard time with that one, I will give you this one. I look at her very seriously and say “yes”.
Cut to last month, we are at the pool in our hotel at Disneyland and Andi looks at me seriously as says she has to go potty. There are two I have to go potty’s with her, one is I want to see the bathroom at this restaurant but I really don’t have to go and I have to go now or I will potty all over wherever we are. This was the latter. I sense the urgency and pick her up in a towel and look for the nearest exit. We make it and she goes. I’m in the stall next to her (what mom can pass up a potty break?) and I hear her. You know…details not needed. “Mom! I have diarrhea!” “That’s ok honey, you made it to the potty” and she says “But I didn’t even eat my boogers!”

Tuesday, September 15, 2009

New New New

New teeth, new wheels, new fall line ups!
Ok seriously Lily got her new chair yesterday and it is like a Cadillac compared to her old chair! The old chair was good, it lasted 5 years for goodness sake, but this one reclines, it has a head rest she can't get her head past and padding and cushions to make the most uncomfortable comfortable!
It is a blue sparkle color that I am a bit disappointed with, I think it looks plain dusty, but we let Lily choose and she made the choice very obvious, so no pink this time around. I have to admit I kinda wish I just said pink anyhow, but Lily is 7 and every 7 year old should be able to make their own color choices, either it be their cereal bowl or wheelchair.
Oliver just won't quit getting teeth. He and I both got a cold two weeks ago but his nose is still running and I looked in his mouth today and saw that more are coming in. This kids mouth won't let up. I never know if he is sick or teething. I can't wait to see how he is when he isn't uncomfortable. He is still a sweet boy, but he is rather attached to me and it seems he is rarely out of my arms these days.
Andi Jane is doing well and LOVING pre k! I am so glad I decided to put her in. She can't wait to go and has so much to say when she gets home. It is worth the extra cash, I get a break and she is having a blast. She seems to have a large crush on a boy in her class that goes up to her shoulders. Andrew says it is because she can push him around. I asked her if she likes him and she said yes and I said I'm gonna tell Joey (he best friend/boyfriend) and she said no mommy! Don't tell Joey! Lol, it starts so early!
Oh and yes I am very excited about the new fall line ups. What can I say, tivo after the kids go to bed is my saving grace.

Thursday, September 3, 2009

Disney Fun

We had a great weekend! The drive was long and boring, but the kids were great and we got to Disney right at rush hour. Gotta love CA traffic!
Lily's birthday was Friday and we first had breakfast with the princesses, it was very sweet and yummy. Andi said it was a dream come true. She hugged everyone. The princesses were all wonderful with Lily. They sang to her as well. Unfortunately though Anaheim was experiencing record heat, it was 105 plus humidity. Us folk from Arizona won't even go to the zoo for a few hours when temps are in the 90's so the weather didn't fair well with us. We didn't spend as much time at the parks as we would have liked, but we stayed at the Grand Californian that is IN California Adventures so we were able to go back and forth. We had a great pool so we spent a lot of time there. One night my parents watched the kids and Andrew and I went with my sister, brother, niece, cousin and Andrew's cousin (whom we hadn't seen in years but just so happened to be in CA when we were so we met up (very cool!)) went on the big kid rides until 10pm! It was a little too much for me. That Hollywood Hotel of Terror (or whatever) is just too scary for me! I felt like I was approaching death and everyone found that hilarious.
We went on It's a Small World, Pirates (Andi found way too scary), Andi did the teacups with her cousins, and a few other rides. I do hope we make it out there again before Oliver is a toddler and do it during the week and in the fall. We were saying we had never been to CA and not had to have a sweater at night and no sweater needed on this trip! Too hot!!
But Lily's day was very special. It appears that every single person employed by Disney has to wish you a happy birthday if you are wearing that button. One guy was sweeping the floor, looked up and wished Lily a happy day. That was very magical.
The kids all slept well there, Lily included! That is huge! I certainly was not ready to go home on Sunday. Hot or not, Disney is the place to be.
Tuesday however, not so cool. I took Lily to the Ortho, whom I do not like anyway but due to the services here in order to get her wheelchair we have to see their ortho. Anyway, he dx her with scoliosis. I knew this since the geneticists called to tell me she was referring us to scoli clinic. Anyway, he wants Lily in a rigid brace for 23 out of 24 hours a day. Obviously I wasn't running to get that done. I listened to what he had to say and decided to get a second opinion.
I had a long talk with Lily's PT (whom is wonderful and very knowledgeable) and she was saying this embarks on an issue about quality of life, and I agree. Lily's movement is how she communicates, we take that away then what? I am not saying ignore her scoliosis, but I think he's thinking may be a bit old school and I think there are more options out there. I am so thankful we have private insurance where we have the option to explore. If all we had were the states services (which I am thankful they do help with co-pays) we would be stuck. I spent way too many years listening to Dr's and not my heart and I'm done. By the way this is the Dr who told me when Lily was 3 that she will never walk therefore didn't require any bracing for standing. *Sigh*
VNS replacement is scheduled for my dad's birthday 10/20. We are the first on the cancellation list so we may go in sooner. Lily has fall break two weeks before that so I asked if we could work something out during that time, that would be great. We'll see.
Check out our slide show for recent pictures.

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