I am always torn when it is time to run back down the road for Corrigan’s checkups. Part of me dreads the possibility that he will have bad numbers and we will have to stay. It has happened before that I have taken a perfectly healthy and happy baby to clinic only to have numbers come back that were so high that he was hospitalized. Thankfully, we always travel with a large suitcase (thanks, Dad!) fully packed for any hospital stay…including toys and food items that I can microwave in the employee lounge. That sort of dread is hard to shake even though the biggest part of me is excited to get any numbers at all.
People often tell us how sorry they are that we have to travel so frequently to Baltimore. They know how hard it can be to travel 2-3 hours just for an hour appointment and a turn-around back home. Mark and I often tell people that we feel blessed to live within driving distance of Hopkins in the first place…and while we are not fond of Baltimore (the city) itself we are fond of the fact that we can get medical care for Corrigan rather quickly and we do not have to purchase a plane ticket to get there.
After talking with so many other parents/loved one’s of kids with UCD’s we all seem to agree that our fondest wish is a cure (of course!) but if not that….then some kind of home-testing system would be amazing. How much a relief it would be to prick Corrigan’s finger and have his ammonia levels read like a diabetes monitor! Until something amazing happens though we are going to be taking a lot of trips to Baltimore and getting numbers to ease our minds.
I am hoping that Corrigan’s aminos are stable after his last illness and we can begin adding more solids ( with protein ) to his diet. This baby is ready to EAT! Mealtimes are getting more and more stressful as he spends the entire time trying to grab anything from our plates and ripping cups from our hands. This kid is interested in some food now.
We have tried using a highchair out in public the last few times we have gone out. It goes maringally well for about ten minutes and then he is wiggling and whining and wanting to sit on our laps. All so that he can reach our food and slam his hand into some ketchup or mashed potatoes. We decided that we needed to practice more at home. Petra brought us a sorta-high chair/booster seat thingy a few months ago… so we have begun using it at every meal at home. Last night, he sat in his chair the entire time, not fussing at all and seemingly enjoyed himself.
Ummmm…..but either we need a taller chair or a shorter table.
Pray for us tomorrow! Pray for good solid numbers and safe travel, if you would!