Wednesday, December 29, 2010

An overdue Christmas update!

Thank you to everyone who replied to the post below, or has offered support on Facebook recently, or emailed us. It's always overwhelming how much love I feel from people I've only met online. You guys who "get it" are awesome. Thank you for being my friends!! :)
This spinning top toy is Emily's favorite Christmas present. She loves it! The music and animal sounds are so easy to activate, by just touching the animals around the edge. She plays with it non-stop.

Sitting on Daddy's lap, watching Jacob open Christmas presents.

Okay, so my pictures are not in order. LOL This was the Christmas tree, before the opening started!

Christmas Eve afternoon, Daddy putting together Emily's new bike. This was a HUGE success, it fits her perfectly! Now we just need to figure out some straps to keep her feet on the pedals. She loves it!
Jacob, making his giant gingerbread man cookie from Trader Joe's. This is the first year we haven't made a gingerbread house. He says that this was NOT a suitable exchange. ;)

Jacob really wanted this Lego Harry Potter set, but I had convinced him he wasn't going to get it. He was so surprised!

The weekend before Christmas, my sister and her husband brought over fresh crabs for dinner. Jacob had a blast cracking the shells open and digging out the crab meat. It was a lot of fun. :)

What would Christmas time be without a future blackmail picture? I came to the living room from the kitchen and this is how I found Emily. These pants are a little too big, evidently!

That was our Christmas! Everyone came over for breakfast at our house, I made a make-ahead breakfast casserole and creme brulee french toast. We opened presents and had fun. Everyone went home for a while, and then we met up at a Chinese restaurant for dinner. We have had dinner at this restaurant every Christmas day for years and years now. It's a yummy tradition!

Emily has an appointment today to get her seizure helmet. I am not excited about this, although I know it's necessary. I don't think she will need it at home, our carpet is thick enough. She doesn't stand up, which this time is a blessing. Her drop seizures happen a lot, but she's so close to the ground already. She falls over, but since our carpet is soft she doesn't hurt herself. School is another thing though - the floors are not soft. She will wear the helmet anytime she is sitting on the floor at school, so I guess I better make her wear it at home sometimes to get her used to it. I do not think she is going to like this at all! I will update again soon on the rest of her medical junk. I am going to sign off on this update while it's still happy. :)

Monday, December 27, 2010

The Christmas update will have to wait ...

I keep sitting down to upload fabulous photos and describe the wonderful Christmas we had ... and not getting very far. Damn seizures will not give my girl any peace. So intstead I spend hour after hour just holding her in the rocking chair and watching the stupid cartoons that she loves so much. Soaking up her giggles at her favorite characters as I try not to go insane at DJ Lance Rocks. At least if we're in the rocking chair together, she doesn't fall over with each seizure.

Perhaps I can update later, when her nurse finally arrives.

Saturday, December 18, 2010


I have lusted after this tricycle for Emily for literally MONTHS. They are normally $200, so it's always been beyond our budget. A fellow blogger, Dream Mom, posted a link to this FANTASTIC sale - it's only $49!! It has free shipping, but it won't arrive before Christmas. Luckily Emily doesn't understand Christmas or gifts, so she won't be sad when it comes after the holiday. And if you want it here on time for the big day, you can pay for faster shipping. I cannot WAIT for it to get here, she is going to love it!! Thank you Dream Mom, for posting the link!

Friday, December 17, 2010

Winter Break!

Winter break starts today. We have no school for two weeks. It's raining, and supposed to rain for the next few days. I foresee some pajama days in our future! :) I am glad for the break from school and to just relax.

Now if Emily could just get a break from these damn seizures .... life would be good.

Sunday, December 12, 2010

December Fun

We have been very busy lately, but it's a good kind of busy! We have been decorating, finishing up the Christmas tree, baking lots of cookies, shopping, and just BEING! Emily's seizures are pretty tame lately (knock on wood). We have been loving the weather here, today it was almost 80 degrees!

Jacob kept telling me to take his picture today. This series is him posing. There were many, MANY outcasts .... :)
I have baked many cookies - oatmeal raisin, oatmeal chocolate chip, strawberry with white chocolate chips, forgotten cookies, and finally sugar cookies! I think my husband likes decorating sugar cookies almost as much as Jacob does. It was a blast, I love family time like this. I made sugar cut-outs, but Jacob insisted on animals. So we have an assortment of cookies. :)

Emily's wheelchair is decorated for Christmas, it is so cute! Everyone we see comments on it, and she just smiles and smiles when someone talks to her about it. It's cute! Of course, she wouldn't smile for me in the picture, as she was watching Barney at the time. Mommy has nothing on Barney! The one smile I managed to capture was only because Barney was doing something silly. I guess I know where I rank ... hehe.

We have also been busy loving on our newest family member! My sister's little girl is a week old now and SO cute. Jacob is madly in love with her, and is convinced we need another baby in our house. I am glad to snuggle, love, feed, and hand her back. :) I love me some baby, but I am glad to be past the newborn stage for sure!

Today we did some rearranging of furniture and trading rooms and such. Jacob's turtle now lives in the living room, so that all his toys can be in his room. I am tired of seeing them scattered all over the living room. Isn't the turtle cute! And yes, that hideous wall behind his tank is rock. I know, it's fugly.

So, our house is decorated .. the tree is up .. the cookies are baked. Bring on Christmas! :) Tomorrow night are are going on a holiday boat cruise with Make-A-Wish. It should be fun! It's supposed to be fun, food and entertainment. Yay!

Thursday, December 9, 2010

Finally got our cards made online!

Bright And Merry Christmas Card
View the entire collection of cards.

I have never been this behind in getting my cards sent out! Ugh. I finally made them online which was SUPER easy thanks to Shutterfly! Now I just wait for them to arrive so I can send them out. If you would like to exchange cards, PLEASE email me your address! I love sending and receiving holiday cards. :) waffle1313 @ gmail. com

Sunday, December 5, 2010

I have a niece!

My sister was due on Thanksgiving and finally had her little girl yesterday, Saturday! I have been offline most of the week, back and forth to the hospital. She was going in daily for nonstress tests and ultrasounds to monitor her fluid levels. Finally on Friday at noon she was induced, and she labored until 5pm on Saturday. She had a strong epidural in place so she was comfy, but definitely tired. Eventually they decided to do a c-section for failure to progress.

Kaitlin Allison is finally here! She is 8 lbs 3 oz and was face up, which they think is what stalled her labor. That is exactly what happened with Jacob, who was 8lbs 4 oz and delivered by c-section after 18 hours of labor.

My sister's husband is Chinese, and Katie looks just like him. She has light skin but very Chinese features, and a bit of dark fuzzy hair.

After the c-section my sister was taken up to the postpartum floor, and her husband went home to shower and such. I stayed with her, poor thing was puking non-stop. I got to snuggle with the (2 hour old!) baby and keep my sister calm. The nurse came in with a bottle for the babys first feeding, since my sister is on epilepsy meds that they can't decide if the baby should get through breastmilk or not. Anyway, I got to feed Kaitlin her first bottle. The little munchkin immediately sucked down 15 mls. Just like that!

Wow. That is more than Emily has ever taken orally in one sitting, in her entire life. I was blown away. I know it's normal and expected, but it really hit me hard.

I think watching a "typical" little girl grow up in the family is going to be a bit tough. I am over the moon excited for my sister though, and can't wait for her to go back to work in 2-3 months. Then I am babysitting Kaitlin! :)

Tuesday, November 30, 2010

Seizures on the bus

Emily has had a rough week so far seizure wise. She hasn't had any big seizures thank goodness, but it seems like non-stop small ones. Yesterday after she left school in the afternoon she had a seizure on the bus. Her head dropped down and didn't come back up. The bus driver pulled over and checked on her. She was breathing fine, but was completely unresponsive. She called dispatch and they said since Emily was breathing okay to take her back to school. When they got there her health tech came out and checked on her. She said her breathing was normal and her pulse was fine, although she was still nonresponsive. They decided it was safe to take her home on the bus, so she came home.

The bus driver was freaked out, and I guess she had a seizure on the morning bus ride as well yesterday. So we have two freaked out bus drivers. I totally understand, they can't be worrying about Emily's seizures while driving. It's not safe for them to constantly be looking in their rear view mirrors at her to make sure she's okay.

Emily has never had an aide on the bus, and she's ridden since the day she turned 3 years old. I called the school district this morning and spoke with the head of special education. Getting an aide on the bus is a long process but she is going to try and rush it through as urgent. Hopefully it won't take too long.

In light of the increase in seizures, I called to check on our UCLA follow-up appointment. When we were discharged on Nov. 10th, we were told to see our neuro in 2 months. Our appointment is set for Feb. 28th! That is NOT 2 months, that's almost 4 months! I was pissed when the lady was talking to me on the phone today. I told her that Emily is having more seizures than normal, as we wean the Trileptal. She is on Keppra and a small dose of Trileptal, and that's it. The Mysoline was weaned off when we were inpatient. We are supposed to start Felbatol or something, but I have no orders. We were supposed to get them at the 2 month appt ... which is now a four month appointment.

Her response was "Well, I recommend you email the doctor directly then and see what he says. I can't get you in any sooner".

Ugh. Her last comment was that perhaps I need to just take Emily to the UCLA emergency room and that way she will be admitted and see immediately. That is NOT a fun idea!

She seems to have a lot more seizures in her sleep now too. Almost every night she wakes up after 3 hours or so having a seizure. She continues to twitch for another hour or two before she goes back to sleep. This is not a great pattern! We are all exhausted, and it makes me wonder how much she seizes all night long.

I wish we could get in to the neuro quicker! Wish me luck that my email to him gets us somewhere.

Sunday, November 28, 2010

Christmas Cards

Ever since having kids, the only Christmas cards we send are photo cards. I imagine that if I sent my parents or in-laws a regular old holiday card with no photos, there would an uprising! :) It's always an interesting photo shoot while I try to get both kids smiling and looking cute, but the cards are worth it. Each one goes in my scrapbook for that year as well, as a lasting memory. I even have a couple of the best ones framed in the hallway with the other pictures of the kids!

I am really loving the card options at Shutterfly this year. This one in particular has my attention.

You can check out all their Christmas card options HERE.
They have a lot of other fabulous photo options as well. What Grandparent wouldn't LOVE one of these great calendars?

Look at the beautiful simplicity of this card - it's awesome. Any parent can relate to the pure JOY of raising a child, but when your child has special needs, it's an even more emotional journey.

You can find this card and other holiday cards at Shutterfly, ready for your personalization.
Shutterfly has a great promotion this year for bloggers! If you have a blog and would like to do a write-up about their fantastic holiday cards, you can get a code for 50 free photo cards. What a great deal! We help them spread the word, and they help us spread the cheer! :) Click HERE for more information if you are a Blogger.

Now I am off to try and wrangle the kids into a cute photo shoot. :)

Friday, November 26, 2010

Gobble gobble!

Jacob and my brother, Mike, discussing something serious evidently!
"Did you get that kid?" "Huh?" LOL
Emily's face right after I made her taste pumpkin pie.

She spit it out and wiped her face on daddy's shirt! LOL

Thanks Uncle Mike, for squirting the whipped cream directly into Jacob's mouth. That was fun to clean up with he laughed so hard he spit it out all over the kitchen floor!
Jacob wanted to rock Emily. She loved it, but she gets awfully wiggly when she's excited. He was having a hard time holding on to her but I made him continue because she loved it. :)
Emily has this weird obsession with people throwing things. It doesn't matter what you throw, it makes her laugh hysterically. My mom bought poker chips, sometimes she plays with them and sometimes we throw them. Jacob and Daddy were trying to throw them across the room into a tupperware, and Emily was cracking up.

Relaxing with Daddy after dinner Jacob and Bumpa (Grandpa) making the gravy

So thankful!! My sister is having her first baby, a little girl. Her due date was yesterday. Come on out baby Katelyn!!
Thanksgiving was great yesterday. My brother and his wife came, along with a Navy friend of my brother. My sister (who was due with her first baby yesterday!) and her husband came. My parents, and our family of four. It was a great day. Tons of food, including pumpkin dip I made and put in a hollowed out pumpkin, prosciutto wrapped asparagus, and of course the full turkey dinner. Mmmmm it was delicious and fun and a drama-free holiday! :)