Posts tagged Sleep

Prayers for Faith

As I mentioned in my last post, Faith has been struggling since we weaned her from the diazepam. She has been very restless and agitated. She is barely sleeping at night. She just cries and screams when she is going through these rough episodes of extreme involuntary movement(chorea) and increased muscle tone. Faith has rough […]


ICAN Conference 2013

We are back from Chicago! I wanted to write a post ASAP so things would be fresh on my mind. Also, I have had so many people ask me already how the conference and trip overall went that I wanted to follow-up with everyone. The short answer is: GREAT!!! First off, Faith had an incredible […]


Fall Fun

Finally, I got a chance to post a few pictures from Faith’s birthday! Hope you enjoy the smiles! ūüôā Faith is continuing to do very well at school. It is hard to believe that she has already been in school for 2 months. Time is flying! Thankfully, with the exception of a sinus infection Faith […]


Summer Struggles

Faith has really been struggling the past few weeks. Nights have been rough and seem to be getting worse each night. Faith is waking and crying A LOT during the night and just seems so miserable and uncomfortable. We have had nights with hours of crying and a miserable little girl. We have had nights […]


Rough Week for SBF

Last week, Faith became a big sister! On the same day, Faith ended up in the ER with a very high temperature and was diagnosed with pneumonia. Luckily, she was able to go home and stay with grandparents as Mike and I were in the hospital with our new baby boy, Graeme. As the week […]


Happy 2nd Birthday, Faith!

Today, we celebrate Faith’s 2nd birthday! Life continues to be challenging and definitely not without struggles, but we are so grateful for our Super Baby Faith. She is such a blessing and we couldn’t love her more! It is hard to believe that next year at this time she will be starting school and getting […]


Out and About

Faith has been struggling with getting over being sick. It seems like she is always sick or trying to get over being sick. The last 4 weeks or so she has been running fevers or at least low-grade temps. She was also¬†very congested, had a bad cough, and was vomiting. Faith’s reflux has also been¬†really […]


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. […]


17 Month Update

I am running low on physical and emotional energy right now so this will be a quick update.¬† We¬†continue to be¬†very sleep deprived and are just trying to get through each day. Faith is averaging a total of 5-6 hours of sleep a day. We are lucky¬†if we can¬†get a 2-3 hour¬†stretch of sleep¬†at a […]


Road Trip

This past week we took a road trip to the Mayo Clinic with Faith. Our main reason for making this trip was to do a consultation at the Sleep Center. Faith has been struggling with sleeping adequately and efficiently for quite some time now which was confirmed by the sleep study. The sleep study report […]


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