Our Curly Girl

Kaitlyn seems to be getting over the virus and infection!!! Honestly, I wasn't sure how she was going to do it but she did. Even on Monday, the hospice nurse had said that on Friday she was really worried about Kaitlyn. Kaitlyn's breathing and congestion has gotten a ton better but she still has a little bit in there. Sorry there aren't any new photos. Kaitlyn hasn't been up for pictures lately. I do have some funny ones from the past to share though that I thought you would get a kick out of.

WAY past her bedtime (May 2010)

Things have definitely changed a bit in the past week in her daily routine. She's still having a really difficult time napping during the day so we split our time downstairs and upstairs where it's really quiet. Sometimes she will just stare at the wall instead of take a nap. It's really hard to see her unable to relax enough to fall asleep on her own. We do all that we can to try and her quality of life the best it can be, even if that means transporting all of her equipment upstairs and downstairs multiple times a day so that she can get some rest and also have time to hang out with Cole in the family room.

Baby Kaitlyn striking a pose (Aug. 2009)

Gimme the flower!!!! (Jan. 2010)

Her saliva has been a BIG issues. The past few days I feel like I am constantly suctioning out her mouth and nose. I even had to deep suction her a few times when she had a lot of congestion. That's where you run a thin tube up her nose, and all the way back to her throat and suction all the gunk out. Poor thing. It's just as bad as it sounds but since she can't manage her saliva or drainage from being sick, it has to be done to prevent it from going into her chest and developing into pneumonia.

Too much sugar! May 2010

This is her "teenage" face (Aug. 2010)

What you lookin' at?! June 2010

Daddy!!!! June 2010

I am convinced that the Robinul isn't worth the benefit. So much so that I threw the bottle of tablets in the trash today. It's really hard to hear Kaitlyn choking on her saliva, even when she is laying on her side. I automatically want to give her something that will make it better. The Robinul DID make it better. It just caused her to have more seizures, constipation and a higher heart rate. In doing some research it also mentioned urine retention, which we saw also. It's just not worth it so we are taking a different approach and decreasing her water intake. She will get the same amount of calories in her formula but won't be getting as much added water throughout the day. We started this last night and I feel like her saliva has definitely decreased some but it is still a problem. We also have some atropine drops to put under her tongue that will help with the saliva but they can also potentially have some of the same side effects as the robinul so we are going to try the water reduction first and then try the drops if it's really bad.

Hey, I want to take some pictures! May 2010

Yesterday, amongst figuring out what we were going to do about Kaitlyn's saliva issue, we got some really great news! Many of you remember the 11-11-11 Fundraising Challenge that the Niemann-Pick Disease Foundation put on to fund research. Well, In honor of Kaitlyn, all of YOU, helped raise the most money for Type A/B! Over 139 people donated, reaching a total of $3770!!! THANK YOU for making a difference!

Lil miss priss (May 2010)

I am so proud to be Kaitlyn's mother and knowing that her life has helped make a difference is such a reward.