Lilyese

So I have been working pretty intensely on speech with Lily lately--we always work on it, but I wanted to try some new techniques to enhance advancement. In the process, I wrote down the ways that Lily communicated so that we could expand upon what she was already doing and cover bases on areas where we were lacking. I want also to keep track of how far she comes in certain areas based on different therapy types. So, in the process, I discovered how much she is able to tell us and that she has her own special language which we call....Lilyese. So here it is...the beautifully unique language of Lily.

1. Pulling your shirt--I love you. I like you. Play with me.

2. Turning her head away--No thank you.

3. Turning her back on you--I want to play on my own, or I don't want to do what you're doing.

4. Opening her mouth and bringing her right hand to your hand--I'm hungry.

5. Reaching out to her cup--I'm thirsty.

6. Turning toward you and scooting into your space--I want your attention, or I want the food, toy etc. that you have.

7. Curing into a ball on the floor (especially with her hand on her forehead).--I'm sleepy.

8. Grabbing at your legs and leaning her head against your leg or arm.--Hold me.

9. Throwing herself back or to the side--I have a need I cannot express or you're meeting the wrong need.

10. Holding both hands behind back while playing or eating.--My sensory system is overwhelmed.

11. Pulling blanket over head--I'm tired or overwhelmed.

12. uh-huh--Yes.

13. Laughing after you ask her a question--Yes.


She's also using the ipad a lot more with a new program. In fact, I was wiping her nose when she reached out and hit the ALL DONE button. So, I stopped...I want her to see how powerful those buttons are!!!!

A Better Day

Lily seems to be feeling a little bit better today. She is eating a little bit and I'm even getting a few laughs again. She is still having a lot of diarrhea and is not putting out as many wet diapers as I would like, so I keep feeding her peanut butter so she'll drink. :) I got up and got a lot of tasks done that were weighing on me, and I feel so much better!! Seizures slowing down and so the world is spinning at a much reduced pace!! I'm doing interviews this week for a new mommy's helper. We've had Angela helping us for over a year, but her husband is military and has to transfer. We'll be sad to see her go. I'm also trying to confirm Lily's MRI~~will probably be January 25th, but I need to confirm. I really want to see a reduction in the tumors. We're also waiting on blood levels...Lily has had a big growth spurt and she has also stopped trying to crawl (she usually stops advancing when she's sick), but I'm wondering if Afinitor needs to go up? I'll update as I find out.

Reduced to Tears

I'm so exhausted. This cold has finally taken all of Lily's energy and mine. She won't eat; she's crying a lot; seizures are on attack. If I had a basket of what a mommy can handle, having a child with TSC makes that basket already 3/4 full, so a cold, an ear infection, all can just weigh you down so heavy. With my husband gone for two weeks, I am doing all of the lifting...34 wiggly pounds up and down the stairs and my back is killing me. If she would cling on to me, I could prop her on my hip, but she doesn't. I have good days and bad days like any mom, but sometimes feel alone in having someone understand that a cold for Lily is different. If I can't get her to eat, how will I get the 11 pills down in the morning? She can't cough and so she gags and gags and almost lost her seizure meds this morning.  If her fever spikes, seizures run rampant. She's also still like a baby and doesn't understand, and so she cries and cries and cries. She's also having diarrhea from the antibiotic that is for her ear infection so blankets, clothes, everything keeps getting poop on it. Maybe I should just keep the plastic gloves on. Ok, that's funny. I had a good cry. I vented. Now, to pick myself back up and keep on moving forward.

Foggy Frosty Days

I love winter mornings that look like this!!

Caught a Cold

So we went to the Dr to get rid of the ear infection and Lily caught a cold. Poor girl was up a lot last night, mostly because she needed to cough. Her fever was 101.1 but dropped quickly with advil. She and I are in great spirits though. She's a tough girl!!!

Otra Vez

Lily has another (or the same) ear infection. This time we'll do oral antibiotics. Crossing fingers!

Rough Few Days

So Lily's seizures were very slowly starting to increase, so once we were sure it wasn't just a fluke of a few off days, we called and we upped the Trileptal. Well, it's hard to know if it's the seizure med bump or something else (there are always so many variables), but Lily has been miserable, crying a lot, and not wanting to eat. Advil helps a tiny bit, but I just wish I knew what it was. Maybe her ears again? Maybe it's the Trileptal? Maybe it's the bump in seizures? Maybe it's a uti? I'll call the doctor Monday morning, and we'll start the process of elimination. Until then, pass the coffee.

Seattle Center & King Tut

We went to the King Tut exhibit at the Pacific Science Center. This sounds fun, but it was actually torture. Us trying to navigate in the pitch-black, overly-crowded room with a very large heavy stroller, an anxious mom, and a blind guy was comical. Later. Later it was comical. We should have stayed outside by the needle! LOL See the duck photo below...they kept trying to eat Lily's crackers. Snack panhandlers!! They were aggressive little birds! By the end of the snack we had two ducks on one side and a pigeon on the other. We were surrounded....so we caved and gave them a few crackers on our way to Tut. Lily's favorite part was definitely the Christmas train in the Armory at the Seattle Center!

New Years Day BBQ

We find home with friends to be one of our favorite things to do, so having a barbecue with Nathan and Diane and their two awesome kiddos seemed a good way to start 2013. Lily thought Ellery was hysterical and loved watching her! Seizures are lasting a bit long and are also a little stronger so we'll be bumping some seizure meds. Otherwise, Lily is doing well on her new schedule!