Warm Fuzzy

Lily is still sick. Now a cold has kicked in. :( We finished the ear drops and now on antibiotic #2. I bought this electric throw, and putting it on low and wrapping it around her seems to help. She loves it so much that when I put it near her she throws herself on it and pulls it over her head--it's very sweet! Poor Lily is so fussy and miserable. I really hope she feels better soon---we all need a reprieve!!

A rough morning

Lily feels horrible. The ear infection doesn't seem better after a few days of drops, so i'm taking her back to the Dr this afternoon. Lily has a high pain tolerance, so I know when she's crying with all her might that she's in pain that it's bad.

Vampire Night

Lily was up a lot last night, and of course, she's sleeping most of the day. Her pediatrician called today and said that the UTI test did not grow any bacteria and to stop the antibiotic. The initial dip was positive for a UTI so it's hard to say what is going on there, but we don't want to give her antibiotics if they're unnecessary. So, we'll just continue the ear drops and take her back to the Dr to check her ears again. Well that's about it, I'm so exhausted.....

Double Whammy

Lily has an ear infection and a UTI. Her fever is at 100, and she feels so yucky. :( Hoping these antibiotics work fast!!

The Thinker

Lily's thinking intently! She's ready to go to her Dr. appointment; we're pooped and the house is a mess...hoping for a solution today!

Under the weather

Lily is feeling bad today. She is running a low-grade fever, and I think that her urine smells funny. I've tried to test it but have not yet been able to get a good sample. She's also tugging at her ears a bit, so I'll be calling the Dr on Monday to have her checked over. She's fussy and her little eyes have bags under them....poor little thing. She just can't get a break...always sick. :( But we are making the best of it and watching movies, snuggling, and snacking on apricots and pistachios. :)

Group Swim Classes

Today Lily did her first group swim class for special needs kids. She LOVED it! She was squealing and laughing, and she was soooo loud! I was also pleasantly surprised at how well she was kicking and using her arms to move through the water (with me holding her, of course). She also did great at holding her head out of the water when on her tummy. It was a lot of fun and something we'll be looking forward to every Saturday!

Up with Keppra

Lily's neuro upped her keppra to try and control some pretty big seizures lately. Yesterday she had 4 (3 were in a cluster and I had to give Ativan). She seems to have adjusted well to the bump so far today. She's trying so hard to talk. Today while playing with a toy puppy, she said dog (daaah to her) and later when I was touching my finger to her and saying nose she said noooooose. She started with her new speech therapist and that is going very well!! Hoping with more seizure control, we'll see even more improvement!!

Fun at the Fair!

Lily and I had a wonderful time at the fair! She loved the rainforest adventure!!!

Maple Syrup

Lily has been up and down lately. Some great days, some nasty seizures, and some seizureless days. It's like we wake up in the morning and never know what her medical status will be. We went to church with our neighbors and Lily went into a huge seizure. This one scared me; I thought we were going to have to do diastat, but thankfully, she recovered quickly. Her face was so red, and her little heart was pounding. Poor girl. Then today I haven't seen any, so you just never know what to expect. But I am appreciative for those seizure free days!!

Also she has been on a prophylactic antibiotic to prevent UTIs that was really making her fussy. The urologist told us to stop for a week, and she immediately seemed to feel better. By next week, he'll most likely put her on a different antibiotic.

Also, we just found out that Lily's Clobazam (a seizure medication) that we get from Canada can no longer be shipped to the U.S. due to the fact that a U.S. company is now making the drug. Well, the American version has caused behavioral problems in a lot of kids and not to mention the fact that it would cost us $1000 a month (versus the $100 we pay from Canada). It is legal for us to go and get three months worth, so it looks like we'll be driving 3 1/2 hours to Vancouver B.C. every 3 months for Lily's medication. Sheesh!!! Thank goodness we live close to Canada and are able to get the medication at a decent price. Go Maple Leaves!!

Hey. You. Seizures. Get off of My Cloud.

So, all of a sudden the seizures are back. Thursday she had two, both moderate and about 30 seconds. Then, on Friday, she had 3 (1 moderate, 1 strong, 1 mild). She seemed sleepy most of the day, which is a huge trigger for her. Since we have had this issue before and pulling back the melatonin helped (because it was too high), I decided to pull it back to 2mgs and see if that would help--under the theory that maybe she doesn't need it anymore. At 2:30am my theory was blown to bits. She was wide awake. I tested her urine, took her temp, verified her blood levels are good and did all the other once over medical checks and am unable to find a problem, so I'll just go into 'wait and see' over the next few days to see if the seizure pattern gets better or worse. If the seizures don't get milder, I'll call her neurologist.