What a Big Girl!!

Faith just transitioned to her big girl car seat! She is looking very healthy in this photo! We are so thankful for Faith’s growth! She is still in the less than 3 percentile for her age, but for her height and weight she is in a healthy range.

Sorry, for the delay since my last post. Mama has been busy! Faith is continuing to work on rolling. She is still trying to figure out how to get her arms out.  Rolling will help her trunk get stronger which hopefully will help us to make some progress with sitting down the road. We are so proud of her hard work!

Oral feeds continue to be a priority, but progress is at a stand still. We continue to try new things and continue attempting to get Faith to eat pureed foods more consistently.

I am reluctant to say this because usually when I do then things take a turn for the worse, but at the moment sleep is much better. The Clonidine (sleep medicine) is like magic to get Faith asleep. However, we are still struggling with her waking through the night. Compared to what things were like without the medicine things seem great now! Life is definitely much more manageable! I think we have come to terms with the fact that sleep will probably always be a challenge for Faith. For now, we are going to enjoy the improvements!

Faith is still struggling with reflux/ and or secretion issues. We are not exactly sure what is causing her to cough, gag, and choke. However, it does seem that Faith is really struggling to manage her own secretions in her throat. Mike and I have been trained on suctioning and postural draining and percussion to try to help Faith when she is struggling. Of course, these aren’t without discomfort to Faith either. Faith’s issues are much more prevalent when she is hooked up for tube feedings which is currently about 16 hours a day. We have tried so many things to try to get improvement with little success. We continue to seek out possible solutions.

We started giving Faith growth hormone injections in April. So far, so good! She is tolerating the injections very well and for the most part doesn’t even cry much anymore.

A big goal for the summer is for us to really work with Faith on opening her hands. Faith is still tight fisted most of the time. She has made progress over the past 6 months or so but we really need to start putting more focus on stretching out her fingers. Faith’s hands are her eyes so it is very critical for Faith to use her hands to explore her world.

Faith is still enjoying water therapy and we hope that we will be able to continue to this therapy. She has shown great contentment and success in the water. We are hoping to have other opportunities to get her into the pool this summer in addition to therapy.

Faith is continuing to stay busy with therapy appointments. We are hoping for a slow June for doctor appointments. Things are looking pretty good right now that that will happen.

Faith is the sunshine in each day! What a blessing she is to our family!

So, pretty!!

Thanks for keeping up with Faith’s progress! Have a healthy and safe summer!

Keeping the faith,