Thursday, April 29, 2010

Paying Attention



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

Home!

I'll post more later. I'm busy snuggling with my babes on the couch now!

Saturday, April 24, 2010

Saturday Night, and I feel alright ......

I ate soup twice now, and more jello. Popsicles and juice. All went fine today. Woohoo!

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!

An update

I thought the jello yesterday was going to kill me. It was a complete relapse. Fortunately I was able to eat some cream of wheat this morning with no problems. I have to tolerate full food before they will talk about discharge. Considering it took me almost an hour to eat a bowl of cream of wheat, I think I have a ways to go. The GI again this morning said another 48 hours.

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

Some progression

I've been progressed to clear liquids. Woohoo! I haven't had anything to eat since book club dinner on Tesuday night. So far, so good. I got to shower today, and walk the halls. The GI says I could be home Sunday if all continues well.

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

My turn in the hospital

I thought I had food poisoning, ended up in the E.R. I was admitted with ischemic colitis. They say I'll be in at least 48 hours. Hopefully it will resolve itself, or I'm looking at a colonoscopy and maybe exploratory surgery.

Fun times.

Monday, April 19, 2010

The Adventures of a Peanut in Disneyland







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!

Kicked off my shoes, got a cold Diet Coke, happy to be home!

The morning started off a little different than I had expected. I got Monkey and Peanut up and ready for the day. Monkey fed all three dogs their breakfast, like he does every morning. When it was time to leave, he couldn't find Hannah. She's the Boston Terrier - that is Monkey's dog. She sleeps in his bed, follows him to the bathroom, they are seriously attached. She was gone, and the side gate was open somehow. I took him to school, threw Peanut in the car, but instead of heading to Disneyland we spent two hours driving the neighborhoods. I came home and made some signs with her picture, and hung them all around. I called the microchip company and reported her lost, and Peanut and I headed to Disneyland. I felt sick, thinking about how Monkey would react when he got home from school and I hadn't found her. There's no way he would go to sleep tonite peacefully, it would be a nightmare. Oh did I mention that this last weekend her tags came off her harness somehow? So she got loose, and her tags were sitting on my kitchen table!! Not good.

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

Headed to the Happiest Place on Earth! :)

It's Sunday evening, and we are winding down from the weekend. It was one of those weekends where you have so many errands, and yet not a lot of real "plans". I did all the errands yesterday, so today was free and clear. Of course, that means laundry and dishes and making baby food for the entire week, etc. LOL

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

Getting Fingerprinted

All IHSS caregivers in our state (is it nationwide? I don't know) now have to be fingerprinted. Nevermind that I've been Peanut's IHSS paid caregiver for almost two years now, oh and I'm her MOM! LOL Did I mention that I get to pay $52 for the privilage of getting fingerprinted? Woohoo! :)

Thursday, April 15, 2010

Good News!


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

Sunny days .... sweepin' the clouds away ....

Well in good news, the sun came out today! It has been gray and gloomy here lately, and cold. Today is gorgeous out. Yay!

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

Neurology tomorrow

This morning started out with a bang. I went into Peanut's room and she was sitting up waiting for me, smiling huge as I walked in her bedroom door. This part is normal, and makes me feel like the luckiest Mom on the planet. Then the smell of poop hit me, LOL. I got her cleaned up and turned around to get a new diaper. When I turned back around, she was stiff as a board. All four limbs stiff and sort of vibrating, and her head was tilted to the left and staring at nothing. In the few seconds that it took me to react, it was over.

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

Abilities Expo






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!! :)

video

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

Betty Crocker Giveaway Winner is ......


Elizabeth from A Moon, Worn as if it had been a Shell!

Congratulations. :) Please email me your name and address - waffle1313 @ gmail.com!

Friday, April 9, 2010

Seizures brought on by heat?

I was just telling Peanut's nurse yesterday that we hadn't seen a seizure in almost a week. I should have known better than to talk about it. Yesterday was the first really warm day in a long time. It wasn't unbearably hot, but it was definately warm. We went to therapy to practice in a new walker we're hoping to get Peanut. Stood her in it, she had been grumpy for about 30 minutes. She went into an absence seizure that lasted about 20 seconds. She was just gone, staring straight ahead with her mouth wide open. She came out of it, and then was fine.

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

Betty Crocker and Safeway/Vons Giveaway and Review!

I recently got the chance to bake and review a Betty Crocker cake mix. I received a coupon for the cake mix, a great stainless steel mixing bowl (that I have used EVERY day since, for the record!), an oven mitt, a red stirring spoon, a silicone round cake pan, and a Safeway/Vons gift card!

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

Microcephaly Convention

It's two months away, and we are officially registered for the Convention for Children with Microcephaly. I am so excited, I can't wait! I was showing Monkey the hotel on the computer this morning. The pool looks amazing. We are all excited! The car drive is going to stink, and it's going to be hot, but I am sooooo jazzed. :)

Tuesday, April 6, 2010

Happy Easter!




This is my sister and her husband, with Monkey. My sister is 6 weeks pregnant. :)


This is my 89 year old Grandmother. She just read the Easter card from my sister that was signed "Amanda, Ken, and Baby To Be".


Peanut with Bumpa - my dad.








Sunday, April 4, 2010

Easter Through The Years

2004- Peanut was 6 months old, Monkey was almost 4 years old




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

A giant message for those that sent Monkey cards/more .....




(If you don't know, he is saying THANK YOU in sign language) :)

She earned herself a surgery consult.

The appointment we had turned out to be with a Nurse Practitioner, and she was super nice. I told her what was going on, and showed her Peanut's tummy. I told her that the tube gets stuck sometimes, and then she cries as if it hurts. I also told her that at night she starts on her back, but rolls to her stomach every night. Each morning she's waking up in a puddle of formula. It has to be leaking around the tube, and I've changed the button and extensions, it still leaks. She went and talked to the GI that was on the floor. The GI said "We make new stomas for two reasons: pain, and leaking". So we are going to have to change her g-tube site.




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

Outgrowing her g-tube, physically?

We are headed in this afternoon for an "urgent" GI appointment. It is not with our normal GI, it is with someone I have never heard of. I hate that. But, here's the deal. Peanut's g-tube was placed when she was 10 months old. That was almost 6 years ago! At that time, it was down low, near her belly button. As she's grown, it's moved higher and higher. Now it's way up high, right under her rib cage. The problem is that when she sits up, her ribs are ON it. Like, pushing down on it. The button is even getting stuck, I guess in her ribs? I don't know ... but sometimes it's really stuck. You can't move it at all, can't twirl it or anything.

I assume that it will have to be moved eventually? I don't know, but here we go to GI to find out.