Happy 18 Months!

Faith is 18 months old today! Wow, Faith is going to be 2 years old before we know it! The last week or so we have observed Faith doing some great things. She is starting to learn to play better with toys. She is trying to roll over more and more. She can get about half way right now. Her head control is getting better and she is starting to lift up her head when she is doing tummy time. It is a huge accomplishment that she is spending  more time on her tummy tolerably. She is so much calmer. Tummy time used to be a major struggle and involved a great deal of screaming. Today was a very positive day of therapy appointments. Faith really showed off her progress! We are so proud of her! She is working so hard despite the many challenges and struggles. We are hopeful that things are really going to start picking up with her development.

Faith continues to have a busy schedule of therapy appointments. Doctor appointments have been plentiful but should become less frequent soon. Faith loves water therapy. It makes me so happy to see her so calm and content! I wish we could do water therapy everyday!!

Our biggest struggles right now are still sleeping and eating. Faith’s neurologist is working hard to help us sort out the sleeping issues. Faith’s sleep issues(as well as many of her other challenges) as we have suspected all along are neurologically based. Since we have tried so many things will no success, it makes very good sense. Faith is going through cycles where is staying awake for extremely long periods of time. She went 24 hours a day last week with no sleep. She had a few days with only 2-3 hours of sleep in a 24 hour period. Obviously, this is very concerning to us! Faith’s neurochemistry and brain functioning is different than a typical child which is about the best explanation that we can give for her abnormal and erractic sleep patterns. Sleep will probably always be a struggle. However, our goal right now is to figure out what we can do to improve Faith’s sleep. Medication seems to be our hope right now. We are currently trying a new medication. We have seen some improvements in Faith’s sleep. The medicine puts Faith to sleep, but we are still struggling with sleep maintenance. Some nights are better than others but Faith is still waking fairly often. We are still trying to figure out the proper dose for effectiveness.  It seems that after a day or two on a particular dose that the medicine becomes less effective. Almost, as if Faith is building a tolerance very quickly. We are going to give the medication some time but it is still undetermined if this medication will be the right drug for Faith. Time will tell, but we may have to look into other possibilities.

Faith is really struggling with eating. She will barely open her mouth to try oral feedings. She is really fighting us on this. I feel that having to stop oral feeds per doctor’s orders was a major setback for Faith. I understand the concern for her health but the break has really affected her willingness and skills. I also feel that since eating has always been a struggle she has developed negative associations with eating.  The discomfort from past struggles with reflux also adds to the complexity of her issues. We are starting back with the basics. Right now, we are working on tastes, smells, and lots of oral stimulation. We are also working on trying to teach Faith how to swallow again. We are putting drops of water and apple juice in her mouth via a syringe when she has the pacifier in  her mouth. This allows her to swallow without her tongue getting coated with baby foods. We have a long road ahead with getting Faith to eat. We just hope and pray that one day we can get her eating on her own and never have to hear the sound of her feeding pump again! For now,  feeding is truly a journey of baby steps and many challenges that requires a great deal of patience and persistence.

We have been so blessed to grow with our Super Baby Faith these past 18 months!! Thank you all for your love and support! Your prayers are powerful and greatly appreciated!

Keeping the faith,

Bridget