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 with projectile vomiting and bad reflux. It seems as if we have regressed back to the stressful and draining minimal sleep nights again.  As always with Faith, we are trying to solve a mystery. She was doing so good again after recovering from her illness in March. Then, all of a sudden we are back to the struggles. The only thing that we can pinpoint that has changed with Faith is that she is bigger. She has grown so much!

I have talked with GI and neurology. We have done a formula change in an attempt to decrease the concentration of the formula but it doesn’t seem to be helping at all. I don’t think the formula is ever the issue with Faith but we tried the doctor recommendation anyway.  We increased her Baclofen to see if her muscle tone would improve. My thoughts were- Could reflux be worse if muscle tone was worse? Was that the problem? I was thinking that maybe she needed a dose increase due to her weight gain and neurology agreed on trying an increased dose. So far, no improvements.

We saw Faith’s physical medicine doctor today and she is trying to help us piece things together as well. We may need to look into other medication options or increase dosage again for her current medications. I am just really hoping we can get Faith back on track before school starts for her next month.

Something is very off with Faith. We are continuing to try to rule out possible causes of her discomfort but feel pretty helpless right now. We appreciate prayers for answers and comfort for Faith.

In the midst of the struggles, we have seen some positive things. Faith has been doing really well with cold/frozen foods. The cold seems to be stimulating her to use her tongue much more. I have been freezing fruit and Faith is licking away! She is doing great with frozen peach slices! Last week, she did great with a blueberry yogurt stick that I froze. Cold seems to be the way to go these days! Works out perfect in this hot summer weather!

We appreciate every smile and all the positives things Faith is doing despite her struggles! As always, her happiness, health, and contentment is the most important to us and what we strive for each day!

Keeping the faith,

Bridget