We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Tuesday, November 30, 2010
Seizures on the bus
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
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!
"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! :)
Tuesday, November 23, 2010
Disneyland with friends
Emily, getting ready to ride Toy Store. The 3D glasses lasted on her face only long enough for me to take the picture before she threw them. :)
Sweet Jaxson! He lounged in my arms for 45 minutes while Lacey and Ray were getting lunch. I just love to snuggle this little guy.
Jacob is in love with Arina. He has told us for about two years that "We need a little girl with Down Syndrome". He is now convinced of it after playing with Arina!
Arina was all smiles for Jacob.
Carter pushed Emily's wheelchair most of the day. It was really sweet!
Emily's dad getting some Arina love. She was fascinated with his facial hair.
Emily loves Small World. She could ride it over and over and over again!
Jaxson seemed to like it too. :)
It was a fantastic day. It was cold, which is my favorite kind of Disneyland day. Much better than hot. :) Lacey, thanks for letting us spend the day with you. Thank you for letting us love on Arina and letting my snuggle with Jax. Your boys are awesome. And Denise, I'm glad your girls were able to come and hang out with all of our boys! :) I am so relieved that Ella's surgery went well and I hope you guys are on the road to home today!! What a fantastic Thanksgiving you will have. :)
Thursday, November 18, 2010
Nothing new, just some pictures
This has been a quiet week, as we recover from the hospital stay and prepare for Thanksgiving. The kids have all week off of school next week, and on Monday we are meeting up with Lacey and family. We are SO excited to meet Arina!!! The plan is to go to Disneyland with them, but the news just said it's supposed to rain ... not sure what we'll do. All I know is that I cannot WAIT to hold Arina! I think Jacob is as excited as I am. He has a slight obsession with kids with Down Syndrome. He loves them. He volunteers in the class at his school that is mostly kids with DS. He wants "a sister like Arina, SO bad!"
Nothing much is happening this week. Jacob has tennis lessons and he is doing amazing. It is incredible to watch this group of 10 years really play tennis! Not just hit the ball and run around, but really PLAY. It's awesome! It's hard to get pictures because lessons are right at sunset so my camera hates the lighting. But here are some. (Check out his coach, Rafael. I think I may have a Mom Crush on him!)
And of course, the Princess. She is doing well this week. She's napping a lot more than normal and having quite a few seizures, but nothing major.
We are all getting excited because my sister is having her first baby! A little girl, and she's due at Thanksgiving. So sometime in the near future there will be an adorable little baby to cuddle on. I can't wait!! :)
I hope you are all doing well. Lots of stuff going on for the holidays and school and just life. Speaking of which, the dryer is buzzing at me. I better go!
Wednesday, November 17, 2010
Universal Child - have you heard this song?
How many mountains must you face before you learn to climb.
I'm gonna give you what it takes, my universal child.
I'm gonna try to find a way to keep you safe from harm.
I'm gonna be a special place, a shelter from the storm.
And I can see you, your everywhere, your portrait fills the sky.
I'm gonna wrap my arms around you, my universal child.
And when I look into your eyes, so innocent and pure.
I see the shadow of the things that you've had to endure.
I see the tracks of every tear that ran ran down your face.
I see the hurt, I see the pain, I see the human race.
I can feel you, your everywhere, shining like the sun.
And I wished to god that kids like you could be like everyone.
How many tumbles must it take before you learn to fly.
I'm going to help you spread your wings, my universal child.
I can feel you everywhere shining like the sun.
And I wished to god that kids like you could be like everyone.
And I wished to god that kids like you could be like everyone.
Monday, November 15, 2010
Thank you
I wanted to answer a few things asked in comments lately.
The ketogenic diet has been suggested to me many times now, and I wish we could try it. The neurologist last week even said it would be his number one suggestion for Emily. Unfortunately, she has an SCAD Deficiency. This is a metabolic disorder that limits the amount of fat she can have in her food. Her diet is a very high protein and very low fat diet. She can't have more than 5% fat daily or her metabolic disorder kicks in and things go wonky. This unfortunately is the complete opposite of the ketogenic diet, so we are unable to try it.
I get asked a lot about Emily's blenderized diet as well. She gets a small amount of formula overnight on a slow drip, which she has to have because of the SCAD Deficiency mentioned above. She cannot go more than 3 hours without nutrition or her blood sugar plummets. During the day though she gets a blenderized diet through her g-tube. Again it is a specific recipe because of her SCAD, and I have to carefully measure everything that she gets. She gets fruit, veggies, and meat every day though. I love making her food, it feels so normal! :)
Now that we know what is and isn't a seizure, it is glaringly obvious how much Emily is really seizing. It's very disheartening. No wonder she is at a standstill developmentally - her brain is constantly recovering from seizures! They are short and fast seizures but nonetheless they are abnormal.
That's the update for now. Not much else is happening. Jacob's school has a Jog-A-Thon this Wednesday, and as PTO President it is my deal. My poor (plantar fascitis affected) feet will be sore for sure! I go to the podiatrist tomorrow, so we'll see what suggestions he has.
Do you have any other questions? I know there are some people who are new to our blog and may not be "caught up" on Emily. Is there anything you have always wondered? Go ahead and ask! :)