Whatever Works

This week we have been blessed with only a few small episodes where Kaitlyn has stopped breathing. They seem to happen in the morning right before or when I give her her medicine so I think we need to give it to her a little earlier, like right when she wakes up and before her bath. Maybe the medicine from the night has already worn off and that's why she has these little episodes. We have only had to rub her body a little, put a small fan blowing in her face and occasionally suctioning out her mouth to get her to take a deep breath.

Cole "talking" to Kaitlyn with Gigi

As I have mentioned in previous posts, Kaitlyn hasn't been her happy self lately. It takes SO much effort just to get her to smile and we've only heard her giggle once in at least 2 weeks! It just doesn't seem right that all of a sudden it would change like that. The only thing we can think of is that it has something to do with the medicines that she is on. Keppra has a known side effect of causing mood changes.

The biggest smile we can get out of her lately

While we know that with Niemann-Pick Disease, as more and more sphingomyelin gets stored throughout the body, it essentially kills brain cells, causing changes in different organ functions and motor skills. We know that as the disease gets worse, she will lose her ability to smile and laugh but for it to go away so suddenly just doesn't seem right. Of course every child is different but we know Kaitlyn.

My Little Love Bugs

At this point it's all a balancing act. We want her to be happy and have a good quality of life but we also want her to be breathing! So we are currently working with her hospice nurse and the doctors to tweak the medicines (Keppra mainly) very slightly to see if there is any improvement.

Writing a card to Uncle Gavin who is in Afghanistan working to help protect our troops

There is so much that is still unknown with Niemann-Pick Disease and the effect of certain medicines on a child with the disease that it is really a "whatever works" situation. They told us at the hospital that the EEG showed no sign of seizure but the anti-seizure medicines are helping to control her episodes. We wonder if the disease and how it alters the brain signals that the brain sends out would cause an EEG to even be read the same as it would with a "normal" child that has a seizure.

Cole decorating Uncle Gavin's card

Regardless, we know that the most important thing is that Kaitlyn is still with us and we want to make sure that the time she does have here, that she is as happy as possible. We will not give up on trying to find a way to make it happen.

Our sweet girl

Everyday, we try to make it as fun as possible. We have lots of music that we "dance" and be silly to and we are also enjoying the recent dip in temperature (70s-80s) and the nice breeze out on the front porch. It really is the little things, like holding Kaitlyn's hand or sitting outside talking to her or reading her books that are really important. These moments that we share with her are precious.

Out on the porch enjoying the breeze!

Thank you to everyone that continues to pray for Kaitlyn, those that send us positive messages, those who have contributed to Kaitlyn's Fund and those who have shared Kaitlyn's blog on Facebook and with their friends and family. It really means a lot to us.

Cole hanging out too!

Although her episodes have gotten better, it doesn't mean that she couldn't have a really bad one and not come out of it. We are also still needing to find a way to make her happy and get her to smile and laugh again. Please continue to pray for her. We know that it is working. She is still here with us. We didn't think she'd still be here a few weeks ago.

Sibling snuggles while watching Yo Gabba Gabba on the laptop (our tv bulb still hasn't arrived)

Thank you ALL from the bottom of our hearts. You guys are awesome!