A couple weeks in

Sunday, August 28, 2016

We are couple weeks in to school and everything is going great for the big kids. All three are still at DeMotte Christian and loving it. Emma is at the top of the school this year in 8th grade, Jackson’s in 5th and RJ in 4th. I’m still trying future out how it is possible that we have an 8th grader but I’m really looking forward to the fun it will bring for Emma this year. Being part of such a small school means it’s like a close knit family so watching the 8th graders from year to year really makes the excitement to get there even more fun. The trip the Great America and to Washington DC, the banquet and graduation. I’m trying to focus on all these fun things and not just the scary fact that we will have a …… High schooler next year! Yikes!

Emma and Laila both had appointments in Indy this week so they got to play hookie from school. Emma had an amazing report from her surgery. We love Dr Haider and it was fun to watch her be so proud of how sucessful the surgery was. It was so nice to have Emma with me for the day and not have to make that drive alone and Laila absolutely adores her sister. Emma even offered to give Laila her meds while I pumped gas. She’s just a great big sister.

Laila had a check up with her GI doctor. We have been having trouble with her ostomy again this week but with the new tricks I learned during our last hospital stay we have been able to keep her home. Her small intestine is now slowing down and we are barely able to get all of her calories in each day because her body is just not processing right. But her weight is holding steady and even increasing a little so we’re very thankful for that.

We finally had our follow up appointment with genetics from when she was inpatient in March. We found out she needs to be followed by a cardiologist to watch for some things but also that he is not the right doctor for what we need to be seen for and the doctor we needed to see is scheduling out into the spring right now. :( That was very frustrating for me after waiting for so long. So…. For the first time I called in some favors. We know several Riley doctors and many have known Laila even longer than I have. I started making phone calls and sending emails asking them to contact this doctor and ask him to see us sooner. We HAVE TO figure out what is going on in her body. I’m going crazy watching her fall apart. Well, it paid off! One doctor contacted a nurse in that clinic that she knew well and she got us in at the end of September. Praise God!

I’m so thankful for the guidance of the Holy Spirit. When I get to the end of my rope and I just don’t know what to do, God will either give me insight like calling in that favor, or He will give me peace to be still. I’m working to take one day at a time and let tomorrow worry about itself but I’ll be honest and tell you I’m scared. I want her to be better but it’s just not happening.

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Jeremiah 29:11-13 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.