Friday, December 28, 2012

Our second diagnosis

     In the late summer, as we prepared for the first day of school, Peanut developed some new issues that concerned us immediately. She was drinking a lot of water every day - and consequently was needing to use the bathroom every 15 minutes or so. We sat down and calculated how many ounces of fluids she had in a day - it was between 40 and 60 ounces! We were astonished that she was drinking so much. My husband immediately wanted to call the doctor but I convinced him to wait one more day so we could talk to the doctor during regular office hours. The next morning, Peanut slept in later than she ever had. She had always been an early riser and with cousins from out of state staying with us, it was extremely unusual for her to sleep late at all. I decided to call her pediatrician and just run these symptoms past the nurse. The nurse said she needed to come in and set up an appointment for that afternoon. The morning seemed like a long one and Peanut ate more junk food than I had ever seen her eat - including several chocolate chip cookies (something she had refused to eat since after her first hospital stay). When we got to the doctor, they immediately did a blood sugar test. Her blood glucose was over 550. They told me we would be immediately admitted to the hospital - she was most likely diabetic. They allowed us to go home and pack our bags and then called us with the information to get Peanut admitted. We were overwhelmed and it was all I could do to keep from breaking down in front of Peanut. My husband had been dropped off by a co-worker at the doctor's office and helped us pack and drive out to the hospital. Once she was admitted, it was quickly confirmed - she has Type 1 diabetes. While we were overwhelmed that we had another diagnosis to work around, we were also thrilled that it was so easily manageable. Over the next 2 days we were educated about diabetes and trained how to test Peanut's glucose and administer her insulin. There was so much to learn but we simply embraced it. We didn't feel that there was anything else we could do - we had to do everything in our power to keep Peanut healthy. This meant a change in her diet, a regular schedule for her meals and snacks and constant monitoring. It definitely would change our day to day life but it was not life threatening. We were released from the hospital a short 3 days before school started. Those first weeks were tough - Peanut was tired of being poked and had a hard time understanding that this was the way it would be forever. I attended kindergarten with her so I could monitor her blood glucose and watch for any symptoms of complications from her brain bleed. I enjoyed volunteering in her class room but the blood glucose tests and insulin shots were incredibly draining. She fought us and she is stronger than she looks! There were times it would take both my husband and I to complete the blood glucose test and insulin shot. We had to literally hold her down and do all this through the tears in our own eyes, knowing this was what we had to do to keep her healthy. Those weeks were mentally and emotionally exhausting. We would reach the end of our day and just collapse. I remember thinking that this was too much - I couldn't handle all of this. But, by the grace of God, we made it through that tough road. Peanut adjusted and we learned that she did much better when she had her special bear - Rufus the bear with diabetes - with her. She would test his blood glucose and give him an insulin shot after she had hers. It was a tremendous help and comfort to her. So, once again, we adjusted to her diagnosis. However, we were very aware that her first diagnosis hadn't been addressed yet.
      Finally, in the fall, after many, many calls to the neurosurgeons office, we had a plan. The doctor's had decided to perform an embolization. We met with the doctor who would be performing the procedure - a minimally invasive procedure that still felt like surgery to us! The doctor reviewed all the risks of this procedure with us - going over the risk of death 3 times in that one visit. We left terrified that we didn't have much time left with our precious daughter. In just a few short weeks, she would be admitted to the hospital and undergo a procedure that even the doctor didn't have much hope in. We decided to live these last weeks like they were our last with Peanut. It was incredibly hard but we felt God's blessings even in these times. We planned special things with the kids. We made a trip to the zoo on an unseasonably warm day. We had a great time and had the zoo almost to ourselves! The animals were pretty active - we had a tiger charge us and jump on the all too small chain link fence that separated us and later we had a reindeer run along the path with us. It was a great afternoon! We also did family photos the weekend before her procedure. My husband and I had a hard time keeping smiles on our faces while our hearts were so heavy with grief. We spoiled Peanut, giving her just about everything she wanted. We spent more time together watching movies, playing games, and just cuddling. The day before we had to leave for the hospital, I spent a lot of time with Peanut coloring, drawing and enjoying being with her.Then, she decided she wanted to be tickled. I would tickle her and she would laugh the most amazing, from the tips of her toes, belly laugh. Then she would tell me to stop with a little tease in her voice and I knew she wanted me to keep tickling her. So, I’d stop until she said to tickle again and then I’d get that great laugh and laugh with her. We did this for quite a while and it’s something I treasured then and will always treasure. On the Sunday we would be admitted to the hospital for her Monday procedure, we sat in church together.  The thought ran through my head that if this was the last day we would live as a family together, I was glad we were starting it in church praising God and trusting Him with our daughter. We were blessed with the opportunity to annoint Peanut with oil and have the church pray over her and her upcoming procedure. She was excited to be prayed for and loved that they put a cross on her forehead. I cried as the reality of what we were about to go through became even more real. Throughout all these moments, all these memory-making times, it was an incredibly overwhelming time for us. I found myself often thinking, "This is the last time we will ____________" So, I was grieving - not for her because I knew God would take care of her - but for me and the life I was sure I would end up living without her. I cried for the things I thought we wouldn’t get to do with our daughter. I cried for the time we wouldn’t have with her. But I didn’t cry for Isabelle. I knew that if God decided to take her, she would be in the best hands possible. I knew He loved her more than I could. That He would take care of her far better than I ever could. I knew she wouldn’t have to be prodded and poked and go through procedure after procedure as a 5 year old girl. I knew her body would be perfectly healthy and that really seemed like God’s best plan for her. So, I was preparing to let her go and was broken hearted every step of the way. Looking back, I wish I hadn't spent so much time grieving but had instead spent that time praying and trusting God to carry us through this just as he had carried us through everything else before this. Her procedure date arrived all too quickly. We were admitted to the hospital the day before so they could monitor her blood glucose. That night my husband and I were tense, and overwhelmed. We watched Peanut fall asleep and cried. We tried to pray and then tried to sleep.