Tangled

Resting today with her baby

Kaitlyn hasn't been feeling too well these past few days. Her ears are infected again. I think the antibiotic (augmentin) from a few weeks ago didn't get rid of her ear infections completely so it came back. She also has a cold of some sort (runny nose, sneezing, congestion, fever). So far her lungs sound clear, which is great. Our main concern is that she could develop pneumonia, either bacterial or viral, since she is fighting both a virus and a bacterial infection.

Few days ago when her toe sensor broke and we had to use the finger sensor on her toe. We have a new toe sensor now- yay!

She is getting a 3 day course of Rocephin shots. She had her first one today. It seems to be one of the only antibiotics that has really worked in the past for her. It is also easier on her system than giving antibiotics through her G-tube for 10 days. Her digestive tract gets all out of wack and she ends up with diarrhea and diaper rash really bad.

Cole- practicing to be a good husband one day

Lately she has had a rough time managing her saliva in her mouth. She can't sit in her chair anymore or lay on her back for a long time otherwise she will start coughing and choking on her saliva. We have her mostly laying on either side or slightly inclined using special pillows and a foam pad. Even then we have to have her head turned to the side to help her manage her saliva. We did start back on the robinul, which helps decrease the amount of saliva that is produced, but we are keeping a close eye on any side effects since she had issues in the past with it. I'm sure having a cold with drainage in the back of the throat doesn't help either!

Cole's first crush- Minnie Mouse!

We also just got an oxygen mask to use too. Since she has had a stuffy nose, she is breathing through her mouth sometimes (obviously) and it causes her oxygen concentration to drop since the oxygen is only going through the nasal cannula.

We are really hoping that the shots start working to make her ears feel better and that her cold doesn't turn into something worse. Please keep her in your thoughts and prayers.

Cousin Dane showing Kaitlyn her Rapunzel doll on Thanksgiving

We have been spending a lot of time at home watching movies and reading books. Her favorites so far are Tangled and Tinkerbell. :-) She also seems to really like the sound of the rhyming in Dr. Seuss books so we have been reading a lot of those to her lately too.

With her Rapunzel doll

Kaitlyn's friend Wylder, who also has NPA is in the hospital with high sodium levels. They are trying to get his levels down and he will also be getting blood transfusions. Please keep him and his family in your thoughts and prayers. http://wylderjames.com/gallery

Thanksgiving craft- our family's hands

Thank you again to everyone for your love and support. We are so blessed to have such a great family. I have come to realize that family is not defined by biology but by those who are there for you when you need them most. Thank you from the bottom of our hearts!