I’ve taken a little break from posting the last week or two as I soak up new baby moments and spend lots of time in the rocking chair.
So today I am taking a little time to share about our last few weeks. The last few weeks contained a few emotional up and downs and prayers surrounding Lillian’s health. At Lillian’s week appointment our nurse practitioner noted that one of her metabolic tests had been flagged because it was 0.1 below a considered normal. Our practitioner told us not to worry and she was sure everything was fine, but that Lillian would have to have another blood draw. So other than reluctantly having to put Lillian through an antecubital blood draw, I didn’t really think anything of it. I mean 0.1 below the normal? Nothing to worry about, right?
Well, about a week later we got a call from Akron Children’s genetic center wanting to schedule an appointment. Needless to say I was a little in shock as no one had yet told us what her results were or what this meant. I asked for the results, but the person scheduling did not know and said she was only in charge of scheduling. She said she would have our doctor call us. After hanging up the phone I was already in tears. I had no idea what this meant and only knew that there was a whole plethora of things that could be wrong genetically, some worse than others. The imagination can run wild with this sort of limited information. I called Dustin worried and upset. He tried to calm me down and reassure me that we didn’t know yet what was wrong and not to freak out. He reminded me to say a prayer and go from there, though he was pretty upset that they had called us for an appointment without any explanation of the results. After waiting about 20 minutes for the doctor to call, I went ahead and called myself. The nurses at our family practitioner noted that they had just gotten off the phone with Akron Children’s, but that they were unable to interpret what her results meant as they were not specialists. *Cue more tears* They said that the genetic specialist was supposed to call me back. I asked if they would call today and they said, “I think this afternoon, but if not give them a call tomorrow”. I felt like I was getting no where and called Dustin again. I asked him to call Akron Children’s because every time I talked to someone I was trying to hold back the tears. He called, but got a voicemail. He left a message voicing frustration and asked them to call us back. Finally I got another phone call from the genetic specialist. When it was all said and done there was really only an hour from the first phone call to the final phone call, but let me tell you, it was a loooong hour. The specialist explained that after Lillian’s second test it showed that she was low in carnitine. This is an enzyme that converts fat to energy (hmm, who knew?) She noted that it was nothing of immediate concern, but they would need to run more tests to see if this was a primary or secondary problem. They noted that there was also a chance that I could be the one deficient in carnitine and due to breastfeeding, she may be showing low levels.
So that next week, on Valentine’s day, we went back up to the hospital for blood draws for both me and miss Lilly. What a way to celebrate Valentine’s day, right? The doctor also did a physical on Lillian and asked some questions to try to help rule out her carnitine levels being low due to a more serious secondary issue. Then it was a waiting game, again, as they noted that it would be another week until the results were in. During that week there was a lot of praying and appreciated support from family, friends, and church family. Though we knew that most likely all that would be involved would be taking a carnitine supplement to prevent any problems down the road (like heart problems from muscles getting eaten away at) it was still scary.
|We spent most of our Valentine’s Day in the lab…waiting for Lillian to pee for a sample. Fun stuff, right? But at least I got lots of snuggles!|
Finally the tests came back. The results showed that the low carnitine was most likely due to my low levels and not Lilly’s. I was so thankful and relieved. It’s much easier for me to feel like this is manageable for me with taking supplements and any future blood draws and etc, instead of having to put Lillian through all of it. So there is still a bit more testing and such to go through, but I feel hopeful that all I will have to do is take the carnitine supplement.
This was just a small taste of what many parents have to go through on a much larger scale with sick children. My heart aches for all those that have to suffer through those emotional ups and downs and having to watch their children get pricked and prodded. There were many prayers sent up for Lillian, but it was often hard to give it all to Jesus and not let the worry in. It’s definitely a reminder that in both good times and bad, I need to turn to Christ first. I need to give Him my joys and my fears and put Him in control.
How about you? Do you have trouble giving Christ all your fears and giving Him control. Have you every had a scary situation where it was hard to give Him control, or definitely not your initial reaction? If you want, take a moment to share and encourage others along this journey of giving Christ the control.