Peace, Love and Monkeys

I don't know why, but lately I have been at a loss for words. Maybe because so much has happened since Friday or maybe I'm just exhausted! Either way, I apologize if you have been checking for an update and there hasn't been one. There are so many of you that are praying for Kaitlyn and I want you to know that we appreciate every one of those prayers!

Sunday was a rough day

Kaitlyn had a rough weekend with her lungs sounding junky and her body struggling to breathe. At one point we were doing breathing treatments every 4 hours and they weren't making anything better. It actually seemed to make it worse so we stopped them. We also decreased her fluid intake in case her lungs are getting too much water/formula that her body may not be processing well. We took her off the humidified air (there is a humidifier bottle attached to the top of the oxygen machine) this may help to dry her lungs a bit, so now she is getting straight oxygen. Hospice also started her on an antibiotic in case of infection since she has had on and off fevers and the congestion hadn't gotten any better.

Yes- I made sure we had coordinating outfits!

And then there have been times where she is fast asleep and her breathing sounds completely normal! It's such a mix of emotions when things are up and then they are down and then back up again. I guess that is why I've had such a hard time in writing a new post. I don't know whether things are good or not? Overall they are better than good, they are GREAT considering that Kaitlyn is still here with us and still making an impact! 

I don't know what to expect anymore for each day is truly unpredictable in how she is going to be doing.

Feeling a bit better today (Tuesday)

We have received so many thoughtful cards, emails, donations, meals, gifts and artwork in the mail that it really gives us such hope that although we know that she will pass away, she continues to touch others' hearts.

Here is a video of Kaitlyn's distressed breathing over the weekend.

 It's funny, we have received a few packages of drawings from schools in NC, TN and VA. The teachers are telling their students about Kaitlyn and showing a few pictures of her from the blog. In one of the sets of drawings, the teacher showed the class a the picture of Kaitlyn and her Big Monkey (now named Paulie- a gift from our friend Paul and Karen). There were A LOT of monkeys in the drawings for Kaitlyn but one that made me smile and laugh was a drawing that said "Peace, Love and Monkeys". Ha ha ha... I couldn't help but chuckle. Kids really are amazing. The thoughtfulness in their artwork and what they write to Kaitlyn is so sweet and so honest. It has really meant so much to us just knowing that there are so many, even children, who are taking time to think about someone else who is in need of prayers and lifting them up and drawing pictures of monkeys for them! I'm hoping that I will be able to make a link on the blog of all the artwork that we have received. You would be amazed at what some of these children write.

More snuggle time with Paulie

I think I'm done now.... I don't know what else to say. There is so much else going on but it would be a really really long post so I think I'll wait until later for more.

I know that we have asked for prayers for Kaitlyn but please keep the Robbins family in your thoughts and prayers as well. Riley Robbins, who also has NPA had a cousin that just passed away at 3 months old. The cause of death is still uncertain. The cousin passed away on 2/12/12, the same day that Riley's older sister, Faith (who also had NPA) passed away. This family really needs our prayers. I can't imagine what they are going through right now. This is their blog if you want to learn more about the Robbins family: Click here  

http://faithandriley.blogspot.com