Sunday, July 27, 2014
When Kenneth and I first married we went to church almost every Sunday. We loved to sing and listen to the sermons. We really wanted a Christ centered marriage. We both worked weird hours- I was on night shift at the hospital and he was on his 24 on/48 off firefighter schedule so we did miss sometimes due to work but when we could be there we were. Fast forward a couple of years and we had Carly. I remember after having her I couldn't wait to take her to church. We had only been home from the hospital with her a day or two when we took her to church for the first time. I couldn't wait to introduce her to her church family. We were still pretty faithful about going and then came bed rest and Anna. After she was born we were tired. I don't just mean like newborn tired but like even at 6 months old she was still waking every 2-3 hours tired. We tried to make it when we could muster the strength but it was admittedly not as often as we liked or as often as it should have been. We ended up changing churches sometime around when Anna turned 2 (if I recall correctly). The nursery ladies were so welcoming of Anna. She was developmentally behind and they took her in and loved her and taught her about Jesus and about love and the Bible. Then she started having seizures. The nursery ladies didn't care. They knew where we would be sitting in the sanctuary and gave us a pager to page us in case something happened while we were in the service. It was a nice break for us even if it was one hour each week. Then Anna aged out of the nursery. They would have been happy to keep her there but we wanted her to move up with kids who were closer to her age. Imagine the look of surprise on the person's face who had signed up to keep the 3s and 4s that Sunday during church when I dropped Anna off and said "This is Anna. Her speech is difficult to understand. She isn't potty trained. She has seizures. She has a feeding tube but it should be fine and you shouldn't need to mess with it. She's a sweet kid though." People sign up to tell bible stories and give snacks and maybe color or play with play dough. They don't sign up to change diapers and monitor for seizures. People tried to be nice but the look on their faces said it all. My child scared them and honestly I didn't blame them. So we opted out for awhile. But we missed church. Carly missed church. We ended up moving to Gainesville from Oklahoma and decided it was important for all of us that we tried again. Gabe was born a little before we moved and he was 6 weeks early but was pretty healthy otherwise and didn't present many challenges. We tried a church close to our house where we knew a few people. We really liked it and more importantly Carly loved it. She had friends there and she was happy. She deserved that. She had missed out for awhile so I was glad to see her back in church and I was happy to be back there too. Luckily the sweet lady who does children's church was not afraid of Anna. She welcomed her with open arms and I didn't feel the least bit afraid. But of course there were obstacles because with Anna there always are. Her seizure meds kicked in and made her almost comatose every day right about the time children's church started. So most of the time I kept her with me and held her while she slept. She still to this day takes a pacifier and blanket to sleep and I felt so uncomfortable with people looking at her, 48+" tall and still sucking on a pacifier. I don't think they judged near as much as I felt they were judging. So we quit again. It just was too much. And again, I missed the music and fellowship more than I can describe. We tried every now and again to go back but every time we would go Anna would be sick within 24 hours of going. After the 5th or 6th time of getting sick right after attending we decided the germ factor was just too high and we couldn't afford the risk. Fast forward a few months and we find out Anna has this immune deficiency. We were told to treat her like a normal kid at least until the workup is complete. Easy to say, yet harder to do when both parents work full time and somebody has to take off to stay home with her when she is sick. But then there was Carly again, longing to be at church and have sweet fellowship with her friends. Carly went to church camp last week and had an amazing time. She needed it. I promised her we would try again to get back to church. So today we went. Kenneth is on duty so it was just the kids and I. We made it. On time even. Gabe went to 3s and 4s class and had a blast. He wants to go back next week "and bring my friend Bigfoot to church." He's currently obsessed with Bigfoot who apparently lives somewhere by the river but also sometimes in our backyard. Carly sat with her friends and enjoyed the music and fellowship. They did not have children's church so Anna sat with me. She was quiet and I'm thankful for that but the entire service was like a wrestling match. She was not still for more than 30 seconds. She was all over me and the pew and just generally exhausting to battle. I secretly thought to myself that I'd give my left arm to go back to the days of her sleeping and needing the pacifier in church because I'm totally over the staring and that would be way easier to endure anyway than the WWF I did today. Man if felt good to be there though. I probably only caught about 30 seconds of the sermon in between wrestling but the music is something that always touches me sometimes even moves me to tears. My heart longs to be at the church on Sunday mornings and Wednesday nights. I miss it and I need it. We all do. So as I said we went today. I had actually planned to wait one more week because Anna's next appointment with the immunologist is this coming Friday and I'm hoping to leave there with a diagnosis and plan. But Carly begged and as a parent there really aren't a lot of worse feelings than telling your kid no when they beg to go to church. It all went well, or so I thought. We have been home less than 2 hours and guess what? Anna has explosive diarrhea. And that is why we quit church. I pray the Dr has answers and that we only quit temporarily again this time. But please look at this as a lesson- not all people who don't go to church do so out of not wanting to be there. We want to be there. I know God understands and given this story most people do too. Special needs families have it rough sometimes when church is concerned. I didn't even get into how the lights and noise can sometimes make Anna crazy. So be patient with us. We are trying and so are most of the other special needs families I know.
Sunday, July 6, 2014
We saw the immunologist and really liked him. He was calming and although Anna wouldn't have anything to do with him at first, she was laughing with him by the end of the appointment. He ordered a bunch more labs. Some of them were repeats. They showed a lower IgA, continued neutropenia (low neutrophils which are a type of white blood cell) and that she does have immunity to measles. She still did not show immunity to tetanus, haemophilus influenzae, or strep pneumoniae. The process is to re-immunize her with DTaP and Pneumovax (which we did that day) and then wait 4 weeks and have the titers redrawn. We have about 10 more days before the redraw. Those results will determine where we go from here. It will either mean prophylactic antibiotics every other day (or 3X a week) if the vaccines take or IVIG once every 3 weeks or SCIG every week (our choice) if the vaccines don't take. The IVIG and SCIG are immunoglobulins that are either given IV or SC (subcutaneous). They are the part of the blood that contains the antibodies that she's missing (if the vaccines don't take). The IgA cannot be replaced because it's half life is so short but protecting for the other things will help her to stay well anyway. So we are in a holding pattern again. So far she has been off of antibiotics for 2 weeks again and things have been ok. I pray this streak continues!