So Thankful

It's hard to believe that it has been almost 2 weeks since Kaitlyn started having her episodes where she stops breathing. We are so blessed and thankful that she is still here with us.

A gift from her sweet friend Milla

We are adapting the best we can to our new lifestyle at home. There are lots of tubes, cables, wires, and equipment to be transported upstairs and downstairs everyday. Chip has mastered the art of giving Kaitlyn a bath while on oxygen every morning while I get the pulse/ox, tape, clothes, suction machine, and feeding pump downstairs. It's definitely a two person job in the morning otherwise it would take forever!

Cuddle buddies

Although the EEG that was done at the hospital said that her episodes were not seizures but rather her brain not communicating correctly with her lungs, the oxygen and anti-seizure medicines seem to be helping her greatly. Her episodes are less frequent and less severe.

We had noticed that Kaitlyn wasn't having any episodes at night, even when she would wake up. It seemed odd since during the day she would have them when she woke up from naps. You would think that her sleep cycle at night and her waking up a few times on most nights would be the ideal conditions for an episode to happen, but they don't! The only thing that is different between day and night is that we give her medicine to help her sleep at night. She gets Klonopin and Neurontin, which she has been on for almost a year to help her fall asleep and stay asleep. Both are also used as anti-seizure medications.

Enjoying the nice weather!

Her neurologist suggested that we try giving Kaitlyn the Neurontin twice a day during the daytime to see if it would help like it seems to at night. We started the new regimen Tuesday and she didn't have ANY episodes and yesterday she only had one. We are really hoping that this change in medicine will help her tremendously. She has also been much more alert and less sleepy during the day. We are pretty sure her extreme sleepiness was just her body getting used to the Keppra.

Kaitlyn when she was 9 1/2 months old

We are so glad she is more herself this week. She is smiling more often but we still haven't heard that precious giggle. We keep trying to get it out of her though!

Meanwhile, Kaitlyn's little brother Cole, who is now 8 months old, is on the move!

Ta Da!