Wrapping up 2014


Faith’s Christmas tree art project

Since I just can’t seem to find the time or energy to do many blog posts, I figured I would do an end of year post summarizing Faith’s year.

Faith started out 2014 in the hospital trying to recover from rhinovirus and RSV. These hit her hard and took months to recover. It didn’t help that she got hit with several other viruses as she was trying to recover. She caught a break for a few months late spring until mid-summer when she caught a couple more viruses and dealt with pneumonia. She has already had several viruses this fall/early winter. Three viruses in the month of December alone. One thing we know for sure is that Faith struggles to stay healthy. Last spring, she was diagnosed with selective IgA deficiency. This basically means she doesn’t have a first line of defense against viruses, bacteria, etc.

Due to the complexity of everything going on with Faith including her immune and neurological system concerns, we decided to pursue a whole genome sequence to determine if there was something else going on in addition to her SOX2 gene mutation. We wanted to determine if we could find out anymore information that would help us treat or manage her care. Just recently we got the results and were told a mitochondrial DNA variant was found.

Right now, we don’t know exactly what this means. The variant has not been seen before. It also is not seen in healthy people. These results could mean that Faith has mitochondrial disease. We just don’t know yet. Since the mitochondrial DNA comes from the mother, I will be going in for testing soon. The genetics team is hoping that my results will give them more information to better interpret this variant. Then, they can determine what this variant means and how they think it is affecting or will affect Faith. At this time, we are not clear if or how this could impact the rest of our family.

Faith continues to enjoy school. Testing is being done to determine her school age educational diagnosis. We will have a very important meeting this spring to determine where Faith will go to school for Kindergarten. Faith continues to stay busy with various therapies outside of school as well. She loves her aqua therapy and music class. She also enjoys therapeutic horseback riding but currently has a few months off for the winter.

Faith doing a great job standing at school!

Faith doing a great job standing at school!

Faith is a happy girl with lots of smiles and laughs to share! She loves interaction with others and one-on-one time to help her learn and explore her environment. She continues to be such a joy to everyone that gets to know her!

Faith is getting to the point where she is outgrowing her equipment or it is just time to get new equipment based on her changing needs. So we have been working on several things…

After many wheelchair trials and trips to the wheelchair clinic, we have finally decided to go with a custom-molded seat in a Zippie base. We are just beginning the insurance approval process and in general the custom-molded seat process is much longer so it will be awhile before Faith actually gets her new chair.   A big WOOHOO, that we have gotten to this point!!

Faith is still in a converted crib/toddler bed. Before we know it, she is going to outgrow it length wise. We are beginning to have more safety concerns with her movement issues and her growing body. Lifting her in and out of bed is getting more challenging as well. We are trying to get her a SleepSafe bed. It would better meet her needs long-term and may also help with some of the wear and tear on our backs lifting her in and out of bed.

We are still searching for a more accessible home that will better meet the needs of our family. It is a challenging process but we are trusting God’s timing and plan.

Thanks for keeping up with Faith’s progress! Again, if you would like more frequent updates on Faith’s progress please follow her on twitter (Super Baby Faith) or like the Super Baby Faith page on facebook.

Wishing you a happy and healthy 2015!

Keeping the faith,