So I've been thinking about something that someone said to me a few days ago. Everyday we have to make decisions, what time to get up, what to wear, what to eat, what to do, where to go, who to take along? And these are only some of the decisions we make for ourselves. Then there are the decisions we make for our children, what should I dress them in, what should we have for breakfast, lunch and dinner, where should we go today, etc. I started thinking just how much a single decision can affect multiple people. With a single decision we can affect the rest of the day, week, month and so on. I was fantasizing about all the "what ifs" as I went on a two mile walk with Brett.
Then we started discussing how we not only make everyday mundane decisions that our peers make, but we also make life and death decisions for our daughter. They may not seem like life or death in the moment, but they truly could be. Right now Maryam is about a half a pound away from being labeled "Failure to Thrive" again. This is not a label we take lightly, but we have to choose everyday whether or not to give her more calories via G-tube, or have her try to get them in orally. We cut back her formula 4 ounces in October and since then she has lost weight. If she loses more than 10% she will be labeled Failure to Thrive. But we chose to cut those ounces back (those ounces constitute 120 calories) in order to see if she would feel enough hunger to want to eat more orally. We think its working. Maryam asks us for food all day everyday! This morning she woke up craving "pizzy" and tonight before bed she wanted nuggets. Unfortunately she isn't swallowing enough of the foods to make up for the 120 calories that we cut out. BUT, she is craving food, she is feeling hunger and thirst and she is trying more foods than she ever has before.
Decisions, they're not always easy. You'd think cutting back 120 calories isn't such a big deal, right? Well it is when her total daily caloric in take was only 960. That means right now, everyday my daughter is getting 840 calories. She needs more, and that's why deciding to cut those 4 ounces out everyday is not an easy decision to make.
During the winter, we decide to stay pretty isolated. This too is not an easy decision. Maryam thrives around other children. But on the advice of doctors, we choose to keep her away from school age children or children around school age children. We choose to keep her out of shopping malls, grocery stores or most public places. Again, these decisions are not easy ones because we have to change so much of our lives to accommodate this choice, but we both feel it is worth it in the long run.
Brett's Auntie Helen came down to Orange County to visit her father, Brett's Grandpa Langdon for the weekend. We wanted VERY MUCH to take Maryam to meet her Great Aunt and Uncle, but then we started thinking and had to choose to stay home....here is why.
Aunt Helen baby sits her grand daughters during the day while their parents are at work. The grand daughters were sick the past few weeks. That would be an unnecessary exposure. NOT that Aunt Helen wouldn't tell us if she were coming down with something, its just that you never really know you're sick until you have the symptoms. And then there is the exposure from all the people who were breathing the same recycled air on the plane down from Washington. IF someone on the plane were sick, then voila, now we are too. Then there is the SUPER WAY LESS obvious scenario. Say we did make the exception and go visit Aunt Helen and Uncle Bob (I SO WISH WE COULD HAVE) we would have been able to see not only them, but Grandpa and The Carrolls. Maryam would have had a blast. Then we find out a few days later that some mom sent her child WITH CHICKEN POX to school, the same school the the boys go to. Now we've exposed Maryam to Chicken Pox! That mom's decision to send her child to school with Chicken Pox indirectly affected my life. Its crazy how one decision by one mom somewhere can make me so paranoid. For the record, we REALLY, REALLY, REALLY wanted to go to OC this weekend to hang out with the family. We cannot wait until next winter when this is no longer an issue.
Talk about a glimpse into my crazy mind!
Segway....
Tomorrow we have our feeding consult with CHOC. We meet with the GI doc. He will determine whether or not Maryam is a good candidate for their intensive inpatient feeding program. WISH US LUCK! This would be a huge step in the right direction for her. She has come a very long way in the past year and a half of out patient occupational therapy, but we need a little "jump start" to get her swallowing. I pray that this does the trick.
Our day is going to be a long one. We got a call from the records office in San Diego that Maryam's records are available for pick up. So, tomorrow morning we're heading to San Diego to pick up the records, then heading up to Orange County to get the appointment on time.
Please, please, please say your prayers that she qualifies for the program. I've been a wreck all day worrying what we'll do next if she doesn't qualify. I really have no idea.
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