Happy 4th Birthday, Super Baby Faith!
As I type this post, I feel so grateful for so much! I thank God for every day with Faith; every smile, every cuddle, every response that indicates understanding. I get emotional as I type this because I know things could be so different. The outcome could have been so much worse many times. I remember wondering if Faith would ever leave the NICU. I remember the recurrent pneumonia and failure to thrive. I remember seeing my precious girl in such respiratory distress before she was taken by ambulance to the PICU at our children’s hospital. I was so scared and couldn’t even be with her as I was still in the hospital myself just after having Graeme. I thank God for Faith’s strength and resilience. I thank Him for watching over her and protecting her ALWAYS.
Yes, Faith’s developmental progress is slow! But, Faith is making progress!! Faith’s anticipation skills are getting better and better. She is responding more consistently to things she likes and dislikes. She is tolerating tummy time better than ever and continuing to work very hard on her head control. Faith smiles and giggles and has her own little sense of humor! We are working hard at home and school to help Faith be an active participant in daily activities and life in general.
Our primary goals for Faith continue to be comfort, happiness, and health. Of course, we have plenty of other goals too but they are secondary to these. Overall, Faith is staying healthy! We are still really struggling with the chorea. We are still in the process of trying to figure out medications that will help without side effects that make life even more challenging for Faith. Unfortunately, we had to wean Faith from the diazepam. It made Faith happier and she was sleeping much better while on it but the increased secretions were very difficult for Faith. The coughing episodes that she was having were very concerning and made the risk for aspiration very high. The coughing episodes are better now and we have seen improvement in Faith managing her secretions. However, Faith is back to sleepless nights, extreme movement, very increased muscle tension, and agitation. We are in the process of increasing her gabapentin medication to see if that will help at all with her overall mood and agitation level. Then, we will be back to the drawing board to determine what to try next to help manage the chorea. We have been told that chorea can be very challenging to treat so we are anticipating a long road ahead to find a successful treatment. Prayers are appreciated for Faith right now through this rough patch!
Faith definitely has her challenges and struggles and we often feel pretty helpless when she is going through rough times. Things can get pretty stressful and daily life can seem pretty impossible for all of us. During these times, we remind ourselves of the blessing that Faith is to our family and to so many others. Faith, hope, and love-my motto and reminder of what Faith’s life is really all about! Faith makes all things possible, hope makes all things bright, and love makes all things easy. When things seem impossible, we keep the faith. When all we see is struggle, we look forward to overcoming yet another challenge. Faith is so loved and brings so much love to us! Without ever saying a word, Faith speaks love into the lives of so many people.
Happy 4th birthday to a truly incredible little girl who brings so much faith, hope, and love to this world!
Thanks to everyone who continues to support Faith and our family on our special journey! A big shout out and thanks to Rafael Marquez for creating http://superbabyfaith.com nearly 4 years ago and for continuing to support the sharing of Faith’s story by hosting this site.
Keeping the faith,