Hide and Seek

Hello everyone. I hope you all had a wonderful Christmas season, celebrating the birth of our Lord and Saviour. We had a nice trip home to Minnesota. Abigail did well in the car (a total of 12 hours one way). She was a little bit more agitated and required oxygen and bi-pap on the way to Minnesota, but our time there and the trip home was for the most part uneventful. The grandparents loved spending time with the children, and vice verse. I was a little tired, not having a nurse on the trip with us and doing all of her care (overnights, in particular). It reminds me of how much I appreciate my overnight nurses, and all of the work that they do!! My mother in law and sister in law were both very helpful with the boys, keeping them out of the way every morning so that I could give Abigail her bath and therapy. We will look forward to our next visit.

Abigail, Josiah, and Levi received many wonderful gifts. I wanted to say thank you to those who sent gifts for Abigail, she now has a handful of toys that she can play with too. The boys received a museum membership from a friend, which we will use often. Really, thank you, you are all too kind. We are very grateful.

Abigail is almost done with her feeding pump, and everyone cheered! One less thing to charge at night and carry around with us. We are now bolusing 190 mls four times a day, so in 3 more days we will have reached our goal of 20o mls. At that time we need to add in 2 more boluses a day, and should be done. We should also be able to eliminate the J-tube, and go to strictly a G-tube. I just need to to talk to the doctor about our final plan. After that, I think we can continue to work on some med weans, namely the Valium and Labetolol. These will both probably be slow, but that is okay.

Please pray for this infection that seems to be lingering in my house. Abigail seemed fine for a handful of days, but now it is flaring up again. She is very agitated (high heart rate) and is having low grade fevers off and on. This would not be a big deal, but we have been trying to get her to kick this for about 3 weeks now. This is the stuff that tends to slow us down on boluses and med weans, since we don't like to make changes when she is already upset. If we do and there is a problem, it is difficult to know whether the agitation should be attributed to the changes we are making or the illness.

Also, please pray for guidance in some big decisions we have coming up. We just did x-rays and learned that Abigail's left hip is 50% dislocated and her right hip is 100% dislocated. I am in the process of having discussions with my physical therapist and rehabilitation doctors to make a plan. I will keep you all posted so that you can pray accordingly. She does not seem to be in any pain. We think that they have been this way for quite some time, as a result of the storming and tone. It may affect our plans for getting her in a stander, though. Hard to stand if your hips are dislocated.

And now for the title of the blog, Hide and Seek. Abigail is really doing a lot with her speech these days. We are working a lot on sucking with her pacifier, and she has started to move her tongue and move towards this reflex. She is also doing a lot more of turning her eyes and head toward voices, especially mom and dad. This is a huge step for her.

Lastly, I am doing my first overnight CNA shift tonite from 7 to 7. I am a little nervous being that it is my first time and all, but I am sure all will go well. Wish me luck!