Super Baby Faith

Faith on New Year's Eve!

We are hoping that 2012 will bring progress and resolution to many things for Faith! Faith is still struggling with reflux and gas issues that can make her very miserable at times. We are still trying to get her back to handling the rate we were at with her tube feedings before she got sick. We are slowing increasing the rate and so far she is tolerating the small increases. We had to switch her back to the lower calorie, semi-elemental formula temporarily since she was struggling so much. We hope to slowly transition her back to the higher calories formula soon. We are also looking forward to meeting with a new GI doctor.

We saw Faith’s neurologist last week and we are trying a new medication for her muscle tone. We are testing it out to see if it will help with the increased tone in her arms and the fisting she does with her hands. Since Faith has very low tone in her head, neck, and trunk it is hard to say if this medication will give helpful results. We have agreed to give it a try. It will be a long process as we are starting off at a very low dose and frequency.

Faith had an EEG a few weeks ago as were were concerned that she might be starting to have seizures. She was having episodes that included shaking and stiffening that were often triggered by a musical stuffed animal. The episodes also occurred randomly without any particular stimulus. We were able to catch one of the episodes during the EEG. At this time, it does not seem that these episodes are seizures. However, it seems that they are definitely resulting from something neurological and we just don’t really have any conclusive answers right now to what is causing them. The onset of the episodes was sudden and startled us as we had never seem Faith do anything like this before. We know that with the SOX2 mutation and Faith’s brain abnormalites that she is at high-risk for having seizures. Seizures often appear sometime in early childhood for children with SOX2. For now, we are keeping an eye on things and trying to get additional video for her neurologist.  We are also waiting to get more information from the EEG report as abnormal activity may have been documented.

It seems that we have regressed with sleep again. Faith’s sleep medication is just not working well many nights. She is doing lots of crying and waking very frequently. We used to be able to get 2-3 hours of sleep out of one dose when she was sleeping better. Lately, she is waking every 30 minutes to an hour. Some nights reflux is definitely not helping the night-time situation but the last few nights she doesn’t seem to have any identifiable discomfort that is causing her to be so restless and upset. The medication she is on still seems to be the best choice in terms of safe use for her age and medical issues so we don’t have many other options without taking risks that we aren’t willing to take right now.

In other news, we have some big changes coming this spring to our family as we will be welcoming a new baby boy! Faith will be a big sister! We will have our hands full for sure! We look forward to Faith having a sibling and we hope that they both will help each other in their development. We are very grateful that our baby boy appears to be growing healthy and strong!

Faith and Frosty!

Hope everyone has a great start to 2012!! Wishing you good health and happiness this year!

Keeping the faith,

Bridget