Thursday, April 29, 2010
Peanut's teacher sends me pictures on my cell phone almost every school day. I love getting them! It makes my heart flutter to see my Peanut when I'm not expecting to, and I just lOVE getting a glimpse of her school business! :) This picture was taken in the kindergarten classroom (Peanut is technically a 1st grader, but goes into the kindy class most days of the week). She just adores this time of day - she sits on the mat and pays attention and is nice and quiet. The note with this picture said "She pays such great attention to the teacher!". They kindy teacher has said that she wishes all her kids paid attention like Peanut does. LOL They said she listens intently to whoever is talking, whether it's the teacher or another student.
Isn't she just ADORABLE in the classroom? :) I love her school. I love that she is so integrated into a typical classroom. It's awesome!
Sunday, April 25, 2010
Saturday, April 24, 2010
Today they sent off some (tmi) stool samples to determine finally if this is a bacterial infection or not. It is the best option, so I'm hoping that it is!
If all goes well tomorrow with my next food advancement, I can strt on the road to home. Hoefully Sunday, otherwise Monday.
Cross your fingers. I miss my kids!
I miss my kids, and my dogs, and my husband, and my bed!
They just called code blue on the room next to me. I wanna go home!
Friday, April 23, 2010
I miss the kids so much! They don't let kids in under 16, but they are going to let Monkey come to the waiting room and sit with me a bit. I won't risk having DH bring Peanut to this germy place.
Hopefully another day or two and I can get home!
Thursday, April 22, 2010
Monday, April 19, 2010
She was not totally amused by the characters, LOL. She enjoyed looking at them from afar but there was NO.WAY she was going to smile when they were so close to her. Poor Pluto, he kept sniffing her and she kept turning her head away like buh-bye!! Hehe Be sure to read the post before this one for more on the day!
As I pulled in to the Disneyland parking lot, a man called and said he had Hannah. He agreed to drop her off at Monkey's school (where I'm the PTO president, and know all the staff). The office manager said she'd keep her until a friend could go get her. My friend picked her up, went by my Mom's work to get her key to my house, and put Hannah in her cage. Ugh! What a MESS! But thank heavens someone found her, and her tags are on her and the gate is definately locked. Phew!
So .... on to Disneyland! Peanut HATED Peter Pan. Waaaaaay too dark. She liked Small World, KC Train, all the rides in Bug's Life (California Adventure). She was okay on Alice in Wonderland and Mr Toad's Wild Ride, but I wouldn't say she loved them. We did a ton of walking, spent 5 hours at the parks, and came home. She was done by that point, stimulated to the max! Pictures will follow in the next post. :)
Sunday, April 18, 2010
But we also took time today to go to Cherry On Top and come home and play Sorry Sliders. Do you all have yogurt places like Cherry on Top? They are EVERYWHERE here all the sudden. I swear there's a yogurt place in every shopping center. They're all self serve, with tons of flavors on the wall to choose from, and lots and lots of toppings. Tons of fresh fruit, candy, nuts, etc. Yum!
Tomorrow, I am taking Peanut to Disneyland. It's her first time, and I am so excited! I have always said she wouldn't like it. That it's way overstimulating, too many flashing lights, loud, etc. But you know, she MIGHT like it. In fact, she might love it! So I am taking her tomorrow, just her and I. I can't wait!
Friday, April 16, 2010
Thursday, April 15, 2010
The surgeon looked at Peanut's g-tube today and said we are NOT moving it! There is a full fingers width between her tube and the bottom of her ribs. He said that if it gets wedged under her ribs while she's sitting, it can't do any harm where it is. If it moves closer to her ribs so that it is literally right underneath them, we will have to move it.
So we are going down a size (from 18 fr 1.7 to 18 fr 1.5) to see if that helps the leaking. If not he says we should do a g-tube study. Basically an Upper GI, with the barium going in the tube and not her mouth. So we're changing out her button this evening, we'll see if it stops the leaking.
Thank GOODNESS for no surgery!!
Tuesday, April 13, 2010
Our nurse just called in sick for the afternoon. Of course, Monkey has tennis practice, which means I have to take Peanut with me. Not fun, given that her attention span is about 2 minutes. LOL It'll be a looooong hour.
The neurologist appointment this morning was good. He said we can go up one more step on her Keppra dosage before we're maxed out, so we are trying that first. We have seen a huge reduction in the number of seizures per week, so it's better than before at least. If this upped dose of Keppra doesn't stop the seizures totally, we are going to add Topomax. He mentioned a slight risk of status epilipus on it (not sure of the spelling, or how much the risk is). I definately need to research the issue.
I just got off the phone with the surgeon's office, we have an appointment Tuesday afternoon. This is the consultation for the surgery to redo her g-tube. Hopefully they can schedule it ASAP so we can get it done and over with!
Off to change a diaper and feed a Peanut. :)
Monday, April 12, 2010
I called the neurologist, because our appointment is next week. I asked if we could get in sooner, so we are going tomorrow morning. She'll go to school for two hours and then I'll pick her up. She's had quite a few seizures this week, and the one this morning was a new type.
The only good thing is that it was reinforced in my mind how awesome our neurologist is. I called this morning, they are fitting us in tomorrow morning. They asked if we needed to be seen this afternoon, but Monkey had an appointment. How amazing is that, to be seen so quick? In neurology, in our area at least, it is completely unheard of. I am always so thankful that we found this great Doctor!
I will update tomorrow. We are going to discuss which seizure med we are going to try next. He said we will add something to the Neurontin and Keppra that she already takes. It just reminds me that when she first started having seizures, he explained epilepsy to me. He said that most kids are seizure free on the first or second medication they try. He said it's not until you have to get into "poly-treatments", or using more than one seizure med together, that you start to get concerned. It makes me sick to my stomach to realize that we are there. :(
Anyways, we have to get control over these seizures. And we have to do it now, before the weather gets hotter and stays hot. And we have to do it before Monday, when I am taking Peanut to Disneyland for the FIRST time. ;) We are meeting up with Lacey and Jaxson again, lucky us!
Sunday, April 11, 2010
This is the third year in a row we've gone to the Abilities Expo. It is SO fun! I am always blown away by the equipment and opportunities available to the disabled. We watched a guy with no use of his arms, play table tennis. Not only play table tennis, but win over most of the able-bodies people who played against him! We also were thrilled to again see Aaron Fotheringham attempt a back flip in his wheelchair! Last year we watched him do it successfully, this year he missed the landing. But none the less amazing!! :)
We talked to quite a few companies about Augmentive Communication Devices, and I feel like we have a good idea of what direction to go in with Peanut. I am going to schedule a consultation appointment with ATEC soon to get her evaluated. I think she will do best with a large Dynavox machine with a keyguard, or an EyeMax eye gaze system. Either way, I am excited to try it out with her!
We also got a chance to talk to the Sleep Safe Bed company CEO. I told him that our bed is in the process of being denied, according to our insurance. He gave me some great tips, and then had me to talk to a very knowledgable woman. She said to give her name and number to our insurance company, if they want more information from her. So cross your fingers that we can get Peanut's bed soon!
It was a fun day. We met up with two other families I am friends with. It's always good to see familiar faces and their kids. It was a fun day! I would highly recommend anyone who can attends one of the Abilities Expos. They are awesome!
Saturday, April 10, 2010
Friday, April 9, 2010
I need to call the neurologist. It's only going to get hotter from today on, and I am really worried about how she's going to handle the heat this year. We have an appointment with the neuro, but it's not for two more weeks. He wants to add another seizure med to the mix, and I want to talk to him about cooling vests. I haven't researched them yet, but I've heard good things.
Does anyone else's kiddo get increased seizure activity when it's hot? Ugh!
Thursday, April 8, 2010
I bought the cake mix at Vons Pavilion, strawberry to be exact. I had some Funfetti frosting in the cupboard, and we baked a heart shaped cake for my Mom's birthday. It was DELISH! Betty Crocker is always awesome. And as an added bonus it has BoxTops for Education on it, which I am in charge of at Monkey's school.
I now have the opportunity to give one reader a giveaway pack as well! It will contain a Safeway/Vons/Carrs/Genuards/Pavilions/Dominicks/Randalls/TomThumb/Pak n Save Foods gift card, a mixing bowl and cake pan, stirring spoon, and an oven mitt. Awesome, huh! :) You can go to BakeSweetMemories.com for coupons and lots of great recipes using Betty Crocker mixes!
SO ..... Just leave me a comment telling me your favorite Betty Crocker cake mix flavor to be entered in my giveaway! For a second entry, become a follower of me on Twitter! I will once again have Monkey draw one entry from a container, and announce the winner, on Saturday! Good luck!
I received the coupon, prize pack, information and additional prize pack to give away from Safeway and Betty Crocker through MyBlogSpark. Thank you, MyBlogSpark!! :) Sorry this review is a bit late, Spring Break has kept me from the computer lately.
Wednesday, April 7, 2010
Tuesday, April 6, 2010
Sunday, April 4, 2010
2007 - Peanut was 3.5 years old, and Monkey was almost 7 years old.
2008 - Peanut was 4.5 and Monkey was almost 8.
2009 - A trip to the zoo on Easter weekend. Peanut is 5.5 and Monkey is almost 9.
And one photo of 2010, as a teaser. Peanut is 6.5, Monkey is almost 10. They are with my 89 year old Grandmother. :)
Saturday, April 3, 2010
You can see how high her tube is in this picture.
This makes me so sad. It's necessary obviously, but it seems so ... ugh. I don't know how to even explain, but it makes me really sad. Now we wait for authorization to go to the surgeon who has done all her previous surgeries. The idea of another stomach surgery scares the crap out of me, since her cardiac arrest occurred during one. I will be a nervous wreck in the waiting room. I just hope they can get her in really soon so we can get it done and over with.
Friday, April 2, 2010
I assume that it will have to be moved eventually? I don't know, but here we go to GI to find out.