G-tube, shunt, and school
In the last few weeks, we have spent a lot of time in the hospital and talking about different procedures. I have felt pretty overwhelmed dealing with the medical issues that we are facing. In my head I know that each of these procedures will help our kids but you heart just hurts to see your kids go through surgeries and be in pain.
Pastor Steven had an amazing message this past weekend that preached on taking a difficult time and calling it what you want. So our family is calling this season we our in as catalyst for our girls to be healthier and stronger. If you haven't watched the sermon you need to watch it now! Check it out here.
I will try to do a decent job of catching everyone up on things since it has been a few months since my last post.
She is growing up so fast. She is saying all kinds of words, loves books and stuffed animals, and thinks her sisters are the best things ever. She has started saying my favorite kid phrase ever "hold you." In February, we went to CF clinic and they were concerned that she hadn't gained much weight. We went back and forth several months seeing if we could get her to try fattier foods, more food, shakes...believe me we tried everything. But Sydney is one of the pickiest eaters of all time and even food that she likes she will sometimes refuse. So about a week and a half ago, Sydney had another round of constipation, refused to take the medicines that would help her, and didn't drink much water so we were back in the hospital for dehydration. Her CF doctors decided that it was time to put in the G-tube to help get her on the right track. So Sydney has had her G-tube for over a week and is doing pretty good with it. She is starting to heal and just throws a fit when we have to connect and disconnect the tube. Thankfully her feeds are just at night right now.
As I am writing this, we are in the hospital with Liana (1 week after Sydney got out) to see if she still needs her shunt. She had been having headaches and all her CT scans showed her ventricles were small. She also had fluid in her abdomen so when we added all those together her doctors figured this was the time to either do a revision or remove the shunt. And our family is praying hard it can be removed! We will be in the hospital about a week while they monitor how she does with her tube being drained and then clamped off. It is crazy timing since Liana will miss her first week of school. We did manage to work it out that she could go her first day of school though.
She is healthy and happy. She has been such a helper in our house as we have been in hospital mode. Adleigh is going to school without Liana which she was a bit nervous about. Yesterday was our first day of school so it has been a little crazy getting ready for that as well. On a fun note, Adleigh has been talking a lot about wanting to do gymnastics and I think she will be wonderful at it. But how do you find the time to add that in?!
And also, I am extremely thankful for all of you who are praying for our family. There has been a lot going on but we are believing for great things and are grateful we know our God is in control of this all! Please continue to pray for healing and no shunt. Also, pray for Wade's parents as they are taking care of Adleigh and Sydney. They are having to take over care for Sydney with the G-tube which is a little intimidating. I am beyond grateful for our church family and they have made a schedule of nurses that can come help and people are helping us in the hospital as well.
I will keep you updated on how things are going!