A lot has happened since our last post. So much so that I have tried to write this many times and have simply not had a minute to sit down and get it done. We have pretty much been going non-stop for a few months now.
I won’t go into a lot of detail, but last time I posted we were planning on doing a picc line for Casey to give her gtube a break. Before we had a chance to line all of that up, Casey’s gtube got much worse very quickly. She ended up in the hospital the first week of December. We decided while we were there we may as well go ahead and do the picc. However, it did not go as planned. The picc team was not able to find a large enough vein to place the line. No one saw that coming. We were very defeated, and really didn’t have any other options. We left Casey’s tube out and had just a standard IV running some nutrition and her medications. We were able to use the standard IV for about 3 days. It was a longer break than we have ever given the gtube before, but it was not even close to the break we had planned/hoped for with the picc line. We left the hospital at the end of the week with a better looking gtube than a month ago, but still a problem gtube. We were able to get the hole down 2 sizes, so that was a plus. We are still dealing with leaking and bleeding though. The new plan is to keep this as long as we can, then go in to reevaluate for a picc at a later time. Veins grow and shrink and turn and all that good stuff all the time. Hopefully our next attempt (when ever it happens) will be successful.
One of our primary day nurses left as of December as well. The first week of December was rough. We have a new nurse that seems to be working out pretty good. She has only done a couple of shifts so far (the holidays really confused everyone’s schedules). Casey seems to like her and she is doing pretty good with the suctioning and positioning. We have a good feeling so far.
This week Casey was discharged from the occupational and speech therapy that she has been doing at the hospital. She will still be going up there for PT. OT and ST created a home program for her. The plan is to have her work on the home program with us, teachers, nurses, etc for the next 4-6 months. Then we will go back into the hospital program again to redesign an updated home program. Casey’s school therapists and teachers are excited to get the home program and see what we can do with it.
Casey has discovered ‘My Little Ponies’. She is so funny. We have the Netflix app so she can stream them on her iPad. She watches them all the time. She can’t help herself when they start up; she loudly sings along with the theme song. It’s really cute. She has had lots of things she likes, Princesses, Tinkerbell, Fish, Elephants, etc, but she LOVES ponies. Needless to say, it was a pony filled Christmas. She now has DVDs as well so she can watch on the TV, iPad and in the car. We are never without ponies now.
Most of my family came in for the holiday. It was nice to have family around. We took Casey to Round Rock on Christmas Eve to drive through the trail of lights they set up. I think she liked it. On Christmas she was pretty tired. The family went out to take flowers to my grandma’s grave, but I stayed home to let Casey get some rest. My sister had surgery on Friday so she stayed home to rest with us too. The day after Christmas we did the big dinner and gifts. Casey did really good. She sat up with me and was very excited about all of her presents. She went back to watching ponies afterward of course.
We took Casey to a new orthotic place today. She has been wearing AFO’s to help with her ankles since her foot surgery back in LA. The last couple pairs we have had for her have just been one problem after another. We talked with a few other parents and found another place to try. We were pretty impressed with Round Rock Orthotics. They came in and really took their time to get to know Casey and her history. They have a plan that sounds pretty good to us. We will go back in a few weeks to get her fitted and go from there. I hope that these will finally work for her.
I will try to get back on in the next couple of days to upload some recent pictures. We have a friend that started a photographer company that specializes in special needs. She came out and did a family photo shoot for us. I will have to upload some of those and some Christmas pictures in the next few days. As always, we hope everyone is doing well. Have a fun, safe New Year’s Eve.